SPILLING MY GUTS

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2012-01-25T10:25:00.000-08:00

The title of my last post was "Scary Day". Well that Scary Day turned into a nightmare by Saturday evening. The pain and swelling had not only not subsided with the second dose of antibiotics but it was getting worse with each passing minute. I felt like my gut was about to explode. It was the worst pain I had ever been in. I called my surgeon who called the hospital to get me admitted. My wife left our son with our friends for the night and she took me in and spent the night. My temperature continued to spike throughout the night going above 103 a few times. The pain had gotten so bad that by morning I was practically in tears. When my surgeon came to check things out Sunday morning he was surprised at how bad it looked particularly since the CT scan on Friday showed no signs of any abscess. He said it looked like I certainly had one though and wanted to open me up. As I headed to the operating room for an emergency surgery I was very concerned about how I would feel coming out. I was already in more pain than I ever remember being in so I couldn't begin to imagine how I would feel after being cut open. Remarkably as I began to come to in the recovery room, my first thought was that I was feeling much better. My surgeon had removed a golf ball sized abscess that the CT scan missed.

The rest of the day Sunday was fairly easy Sunday, drugged up and relaxed. My wife hung out with me as late as she could until she had to skip town as her job demands of her. Our friend Heather came and kept me company to about 5 in the evening, since I was still not very mobile or comfortable. My wife had placed a call to my brother and explained to him that I had emergency surgery and asked if he could come keep an eye on me for a while, particularly since my temperature was still spiking throughout the day and into early Monday morning. My brother replied that he was busy and had work to do. He did drop by the hospital a little after 6pm on Sunday evening...with his girlfriend. I told him he didn't need to be here. Not only was upset as he flaunted the fact that he'd rather spend the day with his girlfriend but the day before he had called to see how to treat her stomach virus. So why bring someone with or who had just gotten over a stomach virus to a hospital first and to see someone with a serious infection? What a MORON! I digress.

My temperature was up and down throughout Sunday and into early Monday. It had gone as hight as 102.1 early Monday morning but that as it turned out, was the end of it. The operation and antibiotics seem to be working. I called first thing in the morning to my Orthopedic surgeon's office to explain that I was in the hospital and see if I could get the cast off my arm, where I had thumb surgery a week earlier. Just a little later that morning the infectious disease doctor came in to examine the wound. What he thought looked nice to me looked frightening. My midline incision was opened up and looked like something out of a graphic war film. The wound vac team would come in later that day to install a wound vac in the wound. Around 1 in the afternoon on Monday my hospital room was a circus tent. I had my father-in-law in one corner, the orthopedic nurse providing me a new hand splint in another corner, and in lay in the middle of the room on an elevated bed with another 4 people hovering around me like an episode from MASH. After installation of the wound vac the worst was over. I had no more temperature spikes and by Tuesday afternoon I was headed home.

This ordeal has weighed on me though. I am a little depressed for the first time. I'm tired of having in-laws and parents helping out because I'm incapacitated. I'm tired of not being able to take care of my son fully. I'm tired of getting all the parents' opinions on what I should do and how I should do it. I'm upset at the fact that my scar may not be the tiny little midline scar that it was. I'm tired of this recovery taking so damn long. See a theme here? I'm just a little frustrated and want to feel like myself again.

Scary Day

2012-01-21T13:57:00.000-08:00

Just a brief update on my adventure yesterday. My surgeon had my go to the hospital to get an abdominal CT scan to make sure that there weren't either some adhesions causing my pain or abscesses that needed to be drained. The good news is that there weren't. The CT scan did show him significant signs of inflammation. My surgeon conveyed that he was very perplexed by my ordeal and not sure why I kept getting this infection or why my wound will not heal. In his words this typically happens to older, overweight, out of shape individuals, not young healthy and in shape people such as myself. His words provided little solace.

I spent 4 hours in the hospital by the time all was said and done. I had to get registered, wait for insurance pre-approval, regular hospital bureaucracy, and by the time I was called for my scan someone from the ER was wheeled in ahead of me when I went to the bathroom. Charlotte is a good sized city and I live just outside the city where they are doing plenty of road construction on the city's outer belt. Naturally leaving at 5:30 I had a considerable commute home. I still had to stop by the pharmacy to pick up the antibiotics my surgeon called in that I was in dire need of. Exhausted and ready to faint at the end of my nearly 6 hour ordeal, I checked my temperature...102.6. I immediately called my surgeon who was ready to send me back to the hospital and get me on an antibiotic drip. Fortunately after some ibuprofen, the first dose of Levofloxacin, some chicken soup, and chamomile tea my temperature dropped and I no longer felt like dying.

Unfortunately through all of this the one constant is my swollen abdomen. Its not only visibly inflamed on the outside but on fire on the inside. After round two of the antibiotics the swelling has still not subsided. The opening at the top of my incision line that's giving me all the issues now has opened up a little more. It feels and looks like my tummy is about to explode. I hope to make it through the day tomorrow and get back to see my doc on Monday. I'm not quite sure where this leaves me but I'm ready for this all to be over with. I'm ready to get back to running, swimming, wrestling with my boy, and training for that tough mudder at the end of the year.

Not so quick

2012-01-20T08:25:00.000-08:00

I thought I was on the mend but apparently not. I saw my surgeon on Wednesday because of significant pain and discomfort around the wound and the cavity I'm still filling with sterile gauze is not healing. After my surgeon tugged at the suture like a guitar string to see how deep the cavity went, he indicated that my body seems to be having an adverse reaction to the suture and that there is some inflammation. He also indicated that there may be a need eventually to open me back up. In the meantime he advised I take some anti-inflammatories such as ibuprofen, which unfortunately has not helped. By the time I got home and had lunch the pain had gotten worse. So much so that I thought it might have been an obstruction. I drank plenty of fluids and skipped dinner that night but by yesterday not only had the pain increased, I had the chills, nausea, was short of breath, running a temperature, and my abdomen had swollen up while turning red and showing some signs of bruising. None those symptoms are signs of a successful healing process. I've learned through this blog that there are others who have had similar reactions to the sutures and in each of those instances it did require another surgery, so right now I'm not a happy camper. Unfortunately my surgeon and his nurse were not in yesterday. I placed a call first thing this morning and at this point and am waiting to hear back and try to get in before the weekend. If I don't hear back by lunch time I'll be calling back. I don't want to try and wait this out over the weekend.

In the meantime I'm currently scheduled to go back to work next Tuesday. That obviously is not going to happen. I spoke with the secretary at my surgeon's office that handles the disability paperwork when I was in on Wednesday. She informed me that she would fax a letter explaining that I have an open wound and requesting that my disability claim be extended through February 6th. Let me start by saying I have been nothing but disappointed in the level of service and handling of my disability claim by Aetna. It started with the fact that payments are 2 weeks behind. That is inexplicable in my book, particularly if you have a set schedule and know when I'm going to be out. If you are paying benefits from the 1st through the 7th is there any reason a check can not be cut and mailed on the 8th? Why wait until the 15th? The next issue surrounded my tax withholding, which I correctly submitted before leaving work. It wasn't until I received my first benefit payment, almost 3 weeks later (because of mail time) mind you that I discovered that Aetna had withheld more than they should have. Naturally being that my first benefit payment came at the end of the year that check could not be fixed because the tax year had already ended. Finally the level of service I've gotten from my claim handler is not only horrible but non-existent. If you tell me you are going to call me and don't there is no excuse. Once I get back to work I plan on expressing my displeasure with our human resources. In the past my disability claims had been handled by Standard Insurance but apparently when Standard began competing with TIAA-CREF in the 403b market our company severed those ties. All I can say is that it's unfortunate. Today I had to vent to someone and left a voicemail with my claims analyst's manager expressing my frustration.

On The Mend?

2012-01-15T19:04:00.000-08:00

This will be a short update. My left hand is now in a cast making typing more difficult. I had surgery on my thumb this past Thursday. The surgery was completed in about 5 minutes. I felt a little loopy, mumbled a few words and was done before I knew it. I can't wait to get full use of my left hand back, which will certainly make emptying and changing my ostomy appliance easier. I'm targeting the second week of February as my return to work date. I'm still packing the open wound at the top of my incision that had gotten infected. I've been doing so now for two weeks and the medical tape is starting to irritate my skin. Fortunately I saw real progress today and it appears to be closing up quickly. The bleeding and drainage from the hematoma, which has been going on for 3 weeks, while still continuing is no longer as heavy. Barring further injury I may be ready to re-join the world soon.

My wife returned to work today, which for her means life on the road. I have my in-laws helping out until I'm fully recovered and able to handle my 2 year old son on my own. I'm ready to pick my son up, hold him, play with him, and wrestle with him but I'm not quite there physically yet. While I am eager to do all those things I'm still a little scared at the proposition of returning to work and life as a single parent and ostomate. I'm worried about bag changes. When in my tight schedule will I get them in? Most likely in the evening after he goes to bed, but how do I keep my stoma quiet during that time. Bathroom trips while less frequent are a bit more labor intensive, so can I leave my 2 year old for more than a second? What if he pulls my bag off by accident or I have an accident with him around? I also think finding some kind of support group will be key at first as I try to overcome several psychological hurdles, such as going to the pool for the first time. As my open wound begins to heal there seems to be a bit more pain and discomfort and the pain level is getting awfully close to where it was when it was really infected so I'm going to see my surgeon on Wednesday.

In closing I wanted to mention a couple of things on the appliance and accessory front. I'm still not 100 percent happy with either the Hollister or Convatec products. Even with the larger Convatec flanges I'm having to tape the edges. Because I liked the bag so much and do not feel I gave Coloplast a fair shake I bit the bullet and in placing my reorder ordered the Sensura Click 2 piece system. I did this without the samples for two reasons, I've tried the other products and am not completely satisfied and when I called Coloplast they did not have the samples I wanted in stock. I figure it cant be any worse. Not to mention, the Coloplast nurse I spoke with Rita was very helpful and explained that the Sensura flange will eventually mold around the skin and become more comfortable. She also suggested cutting a few slits in the flange to give it more movement. I'm keeping my fingers crossed that I fall in love with the coloplast product. I also received last week a classic wrap and underwear from Ostomy Secrets and did fall in love right away. Not only does it hide any bulge underneath clothes magically but provides great support for the bag so when it begins to get full I don't feel like I have a tennis ball in my crotch. I ordered my wrap in black and when I went back to order one in tan was disappointed to hear that they are currently out of stock. Oh, well I'm in no rush while sitting at home. Lastly I just ordered a shower gard through C & M Ostomy Supplies as I figure its worth a shot and the money spent so far on saran wrap and waterproof tape has been a giant waste. So I'll let everyone know how that works out.

Festering Wounds

2012-01-07T10:14:00.000-08:00

Lately I feel like a walking talking factory of blood and puss. I've got various excretions oozing out of all kinds of places. I got into the doctor as soon as possible on Tuesday. The infection had not only become extremely painful but resulted in a fever and nausea as well. One look by my surgeon and what I feared came to fruition. The wound site needed to be reopened and cleaned. A little local anesthetic was the most uncomfortable part, the actual incision and puss removal with a cotton swab was more of a dull pain at that point. The wound was filled and dressed and soon I was on my way armed with a prescription for some antibiotics and more pain meds. I did ask my surgeon how long the bleeding from the hemotoma could continue and was told it could last a couple of more weeks. I head back to my surgeon on Monday afternoon for another follow-up at which point it will be less than two weeks until I'm scheduled to return to work. To be totally honest I'm going to have to tell him that while still fighting off an infection and bleeding out of my ass, to say nothing of my ability to sit in one spot for 8 hours, I don't think its reasonable to expect me to return to work in less than two weeks and will ask that my disability be extended a couple of more weeks.

I'm still searching for the right appliance and products. This morning I gave Convatec a try. I like the convatec bag for many reasons, the material doesn't seem like it will look ratty in a short period of time as the hollister bag does and the open/close of the bag is closer to the coloplast bag, which I liked more than the hollister bag. Convatec however offers a tape flange, which I prefer to the plastic feel of the coloplast flange. I'm wearing the appliance now and really like it so far with one significant exception. The tape for some reason did not seem to adhere around the edges quite as well as the hollister flange. I believe this may be in large due to the fact that the flange is mostly barrier and very little tape. I'm wondering if this issue isn't simply resolved with a larger flange. I plan to call Convatec on Monday to find out. Right now I've got some waterproof pink medical tape around the edges to give me a little more security. I'm not sure was to make of the convatec barrier wipes either. They seem to provide a bit more of a "crusting" effect but with a higher level of alcohol than the smith and nephew wipes I've been using. The verdict is still out on the barrier wipes.

A second surgery in less than a month is scheduled for this coming Thursday to repair the tendon in my thumb that I damaged like and idiot on New Years Eve with a steak knife opening a child's toy. I explained to the orthopedic surgeon that it was imperative to regain use of my thumb as going to the bathroom is now a two handed job. On the bright side I discovered last night that the sexual function remains intact despite the increased risk with the surgery. Hooray!!!!!!!! Now if I can just feel less like a body of puss and blood then maybe I can use the rediscovered functioning parts.

Complications

2012-01-02T15:03:00.000-08:00

In my last update I shared the fact that my recovery was complicated by the development of a hematoma that started bleeding out a week ago and as of yet shows no signs of letting up. Adding further discomfort to the recovery is that the top part of my incision opened up and has apparently got a little infected. The area around the incision opening which is very small showed some pussiness, redness, and is extremely sore and inflammed. I'm not too worried as I had a similar issue with step 1 of the jpouch surgery. I'm sure a little antibiotics and time will clear it up. Once all these issues are gone and my digestive regimen finds its norm life will be great. Unfortunately on New Years Eve I became my own worst enemy complicating matters further. I was already a little flustered chasing after the kids that evening with all I had going on with my recovery. Part of the Russian tradition is opening gifts on New Years. I had grabbed a knife to remove the hard plastic strap on my son's gift when the knife struck deep into my thumb. I could not move the tip of my thumb and after calling my doctor's office headed to the emergency room. The good news is that we were in and out quickly and two stitches later were home in time to ring in the new year with friends. The bad part is I may have damaged a tendon that needs to be reconnected. I need to follow up with the hand specialist tomorrow while also trying to get in to see my surgeon a day sooner to have him look at the infection. Not having a functioning left thumb certainly complicates bag changes, bag emptying, and the works. It also adds a new layer of pain and discomfort to everything else that I have going on. Oh well this will all pass sooner or later.

A real pain in the A _ _!

2011-12-29T09:21:00.000-08:00

In my previous post I mentioned that my bottom was extremely painful, so much so that I can not sit down or even get in a car to drive to the corner grocery. While I was told to expect significant pain in my bum, I wasn't quite prepared for this. I'd been doing remarkably well otherwise, so much so that I almost immediately began moving about the house and helping as much as possible with the daily chores. Though my wife kept yelling at me to lay down. Finally on Monday while visiting with friends I had to do just that. I was following my son around in the back yard and came up the stairs after feeling a little uncomfortable. My bottom started bleeding. I was a little scared because it was not something I expected. Fortunately I had been wearing liners in my underwear and after calling my doctor was told to get off my feet and apply some pressure with some gauze, which I did. Some of the pain had dissipated as did some of the inflammation. Unfortunately, I kept on bleeding and at 2 am on Tuesday morning I got up and the gauze and liner were soaked with blood. A little concerned I called my surgeon who said it sounded like a hematoma. I got into the office the first thing the next day and was told that everything looked fine and that it did indeed appear to be a hematoma. The only thing I could do now was keep the area clean and allow it to bleed its course. Now Thursday the bleeding continues but not as greatly. I feel somewhat relieved having an explanation for the unbelievable pain that even percocet could not help. The downside is I feel generally crummy walking around with a liner and gauze in my bottom on top of everything else. But this will eventually pass.

I'm getting closer to finding the right appliance and saving my skin and stoma. The forma flex and moldable barriers do not provide me with much protection or confidence so I'm sticking with the cut to fit for now. I think part of the issue is that my stoma is shrinking still. I went from 41 mm upon being discharged to 32 mm with yesterdays bag change. I believe as did the nurses at hollister and convatec that it may not be the right time due to the fact that my stoma size is still changing. So I'm getting some new cut to fit samples from both. On the ostomy accessory front, I have received my first pouch cover through C and S Ostomy Supplies and a Phoenix Ostomy belt was covered by my insurance and ordered through my medical supply company. I am still not sure how convenient wearing a bag sideways will be particularly when it comes to emptying it.

On side note, I'm trying to keep this blog positive and welcome constructive feedback about content or alternative treatments, options, etc. However I had to act as a censor and mark for deletion comments left by someone with a lot of hate, who suggested I was kidding myself and sugar coating things and that he would gladly choose death over life with an ileostomy. No only was it not nice, considering no one is forcing that person to live with an ileostomy but it was a little sad as well. I mean I feel sorry for the person that would willing choose death over an improved quality of life. It just shows me that the person is more than likely immature, alone, and has no one or nothing to live for. And with such a charming personality it would not surprise me if ileostomy or not he remains that way for quite some time.

With New Years Eve just a couple of days away I want to wish everyone the happiest and healthiest New year. May 2012 be the best year ever.

Post Op Update #2

2011-12-23T11:28:00.000-08:00

I write this post through the aid of my wife's laptop as I lay on the couch. Sitting down is still a pain in the A _ _. From what I understand this pain will not subside anytime soon. It makes leaving the house difficult as even riding in the car is very uncomfortable. I won't even mention sitting down at the table for a holiday dinner.

Some improvements have already been made since my last post. The bruising of my private parts has diminished some and my pee performance time (PPT) has improved. During the first couple of days after having the catheter removed it felt as if there was a jamming of the signal from my brain to my penis giving the ok to pee. I'd stand there waiting for the urine to flow for a what seemed like quite a while. As the bruising diminished in that area so has the pain and the urine has flowed almost instantaneously. I was concerned that the performance delay in this area may be an indicator of performance impairments in other related areas. I am feeling more confident that this is not the case though.

One of the things I could not wait for since getting home from the hospital was a change in appliances. I have no desire to see my poop every time I take off my shirt. I quickly ordered supplies from the medical supplies company approved by my insurance, while also requesting samples from the various manufacturers. I got positive feedback from my wound ostomy care (WOC) nurse about the forma flex, moldable flanges from hollister and convatec that do not require paste, rings, or other adhesives. Today was the first time I changed the appliance after trying the forma flex flange without any additional adhesive. In theory the barrier has an adhesive that is activated by body heat and shifts and molds to your stoma. I found stretching the opening a little tricky and realize there may have been a user error. Unfortunately when I removed the flange my skin around the stoma was red and there was some definite seepage. Fortunately it was only 2 days. I used the same system again today but used an eakin ring as well for added protection. I may change the system again tomorrow to be certain that everything is performing as it should. Before going back to the Hollister bag plus adhesive ring, I figured I'd give the coloplast product a try. I really like the opening on the two piece as well as the locking mechanism. Unfortunately I could not get over the feel of the flange which is like a hard plastic on my skin as opposed to the band aid feel of the hollister flange. I have already noticed that each company's ostomy products has its own unique features, I just wish I could combine them all into a single appliance.

Oddly, I've been more accepting of the bag this time around. I guess its a good thing since there is no going back. This is it. Part of it was the fact that I went into it this time with a different and better mindset. For example today, I have emptied my bag only twice today and its already 3 pm. I never would have been able to do this with the jpouch under any circumstance. The pain associated with bowel movements is gone. I'm also able to put a new positive spin on it each day. Already when I pass gas it does not smell, nor do my bathroom trips through the aid of M9 drops, deodorizing lubricant, or altoids. I made mention to my wife that cleaning the end of my bag is no different than someone wiping their rear end, only I can see what I'm doing and do a better job.

My mindset has been pretty good so far. I haven't had the down in the dumps day that was foretold by even the most positive of ostomates. If only I could get over the pain and swelling in my rear end. I got a good laugh out of the convatec literature that came with the product samples. There was a booklet on living life with an ostomy. In the section and sex and intimacy one of the published bullet points read, "Do not put anything in your stoma during sex". You've got to be kidding me, Right? My mindset has always been helped by a glass of red wine, something I have not had since coming home from the hospital almost a week a ago. With the holiday this weekend that may just have to change.

Post Op Update

2011-12-19T08:39:00.000-08:00

Well, the pain was what I remembered. However the shock factor and seeing your insides when you wake up was significantly less. Fortunately I did not have any setbacks at the hospital and was able to leave Saturday morning. I used my better judgement and did not go to my son's Christmas Performance at his daycare that evening. My wife took some nice video with my phone of his singing and dancing so that I did not have to miss it completely. Its just too bad she was unaware that she could use the zoom feature when shooting video as well.

Remarkably in many ways I'm doing better than I did the first time around. Perhaps as my GI was right. He suggested that my not being on the biological drugs that I was treating my UC with as well as being able to keep up an exercise regimen leading up to surgery would most likely allow my body to recover quicker. Just as with the first surgery my entire pubic area including the ring leader himself is black and blue. I wonder how much of that stems from the catheter. I also don't think the nurse that removed it (really spacey) had fully deflated it before trying to remove it. Fortunately I was able to remind her why she may be getting some resistance in trying to pull it out.

A real life saver this time around, that I picked up from the message boards and shared with all the nurses at the hospital was the deodorizing benefits of altoids. One of the things I hated the first time around was the odor that the ostomy produced at first, which was almost sickening in and of itself. By placing a couple of altoids in my ostomy bag, my output had a very minty and very festive smell at this time of the year. If I can get my poo to smell like a candy cane, surely there is a way to get it to smell like roses (a genius marketing idea for ostomates). It still amazes me that nurses on the bariatric wing still show a loathing of even helping to empty appliances, catheters, and drainage tubes, the ostomy bag being the worst. I swear that every time I pressed the button asking for help the nurse's faces clearly showed not only their reluctance but disgust. They were pleasantly surprised when the learned of the altoid miracle. The WOC nurse even said she shared the altoid secret with a 20 year old girl who down the hall who had just gone through the first step of the jpouch surgery and was having a rough time coping with everything including the smell.

While in some ways the surgery has been easier when armed with the proper expectations and knowledge it has been more painful in another way. Having my rectum removed has increased the overall pain quotient exponentially. Not being able to sit down comfortably complicates things in so many ways. Sitting down to write this post is uncomfortable and has taken a couple of days. Sitting down in the car to go to the store, or at the table to eat are all very painful. So unless I'm moving around the house or walking through the neighborhood I'll be laying down and popping pain pills every 4 to 6 hours. I'm certain that once the pain is gone and I have my preferred ostomy supplies. I don't want to see my shi_ every time I take off my shirt, things will be looking much better. I have much more to share but will probably do so in another post but for now my bottom has had as much as it can take.

Last picture of a bagless belly

2011-12-14T00:59:00.001-08:00

I couldn't sleep at all during the night, kind of fearful of the pain and discomfort of this morning's surgery. I wish I could fast forward through the recovery. I felt I owed it to myself to take one last picture of a bagless abdomen, kind of like a keepsake. As the endof the year approaches I couldn't think of a better way to start it than heathy and off all the drugs.

S-Day is Just Around the Corner

2011-12-09T21:28:00.000-08:00

Today was my last day at work for a while. I came home early, around lunch time and went for a 4 mile run. Running is better than any drug, maybe its my drug of choice. I'm able to think, meditate, and relieve a little stress. I was particularly stressed out this week on Wednesday. That was the day I began making the pre-surgical rounds. As one nurse put it, it was the day that the rubber actually hit the road. My surgeon explained what I already knew. My anxiety does not stem from the decision itself, which at this point is irreversible but more from the fact that I know what to expect pain wise. I mentioned to my surgeon that I was feeling a particularly anxiety ridden that day and my blood pressure test at the hospital proved it, 133 over 90 a far cry from my typically low runner's BP. I was ready for a xanax or clonazepram at that point. I endured a bit longer, met with the anesthesiologist as well as the ostomy nurse.

The ostomy nurse was caught a bit by surprise because I guess she had a whole spiel prepared but I explained and showed that I already had some ostomy experience. My questions were more product related. When marking me for the stoma she expressed some concern about placing it in the same exact spot because of the scar tissue and immediately placed a call to my surgeon to determine whether it was even possible. I was relived to learn that being thin and in shape has advantages when it comes to placing the stoma in the same place as it had been earlier.

This weekend my last as a bagless individual, my wife took off for her company's annual meeting/Christmas Party. This year it was in Fort Lauderdale, Florida. Her company really provides them with a nice weekend. I went years ago when they held it at TPC Sawgrass in Jacksonville, Florida, open bar the works. I decided though to stay behind and spend some quality time with my son. We have swim lessons tomorrow morning and then a birthday party in the afternoon. Sunday we have story time with Santa and maybe even an evening of Christmas lights. It should be a good weekend. I was giving him a bath this evening when my son lifted up my shirt, saw my stoma marking and pointed to it and uttered the phrase "Papa's boo-boo", after which he proceeded to show me his boo-boo. The rest of the night it was a game of papa's boo-boo and Richie's boo-boo. Too precious and reminds all too well why I'm getting off the drugs and having the surgery.

In related news there were a couple of posts on a j-pouch message board that really upset me this week. One guy posted that he would rather DIE than have a permanent ostomy. Obviously he has NOTHING to live for. The other were from a series of j-pouchers seemingly extolling the benefifts of long-term antibiotic use without even making mention of the hazards. While I try not to be too negative and realize the decision to medicate or not to medicate is an individual one, its ludicrous to assume that long term drug use of any kind is harmless. I mean hell, when splenda turns into chlorine in your blood, think what long term use of cipro, flagyl, and tindamax can do. Though after watching weed wars last night on Discovery I couldn't help but wondering what might have been if I lived in a medical marijuana state.

A New Life and New Challenges

2011-11-26T19:06:00.001-08:00

Just over two weeks remain until I pass the point of no return. I'd be lying if I didn't say its been on my mind quite a bit, though I know I'm making the right decision which is the healthiest one and my wife seems to agree, even though she has been reluctant to weigh in on my decision in the past.

Wednesday, just prior to Thanksgiving I was having a particularly bad day. I did not eat much more than a bowl of oatmeal and a protein shake all day long, yet I was going to the bathroom non-stop. I actually became very emotional reflecting on the past two years, the rough day, and knowing that it would soon be coming to an end. Just like the Ulcerative Colitis I am eager to put the chronic pouchitis and issues I have had behind me. I'm not naive however and know there will be a few challenges ahead of me. I will most certainly have my emotional ups and downs in the first few months as well but like everything else it will pass. I'm going to do my best to remain positive through it all and hopefully provide inspiration to others facing similar decisions. I refuse to coil up and get depressed because of the hand I've been dealt in life but instead want to embrace my new life as an opportunity to do more and be more.

This post-Thanksgiving post deserves at least a mention of those things that I am most thankful for and they are; my wife who supports me every step of the way, my son for whom I can easily make the decision to be healthy at any cost, my brother who also loves and supports me even though we don't see eye to eye on a lot of things, family, friends, a good job, a great boss and co-workers, a wonderful home, and hopefully improved health in the upcoming year.

I promise to keep everyone posted on my pre-surgical appointments in another week. I'll post my questions and answers that I receive from surgeon and WOC nurses.

One Last Round

2011-11-16T18:20:00.001-08:00

I gave in. With less than a month to surgery I broke down and took some antibiotics. I am doing the cipro/xifaxan combo that worked so well coming out of the hospital. Its helped a bit but not nearly as much as it did at the time. To be totally honest I'm tired of eating soft foods for the past month, afraid to have to chew something extra carefully and really setting me off. Oatmeal for breakfast, soup for lunch, and yogurt for dinner with a protein shake for a snack gets boring after week 4. Further weighing on the decision is that I have my son's second birthday party this weekend (he actually turns 2 tomorrow), followed by Thanksgiving and two more birthday parties, so I wanted to be able to function normally over the next week or two. I even read in the latest Phoenix Magazine that some surgeons recommend a round of antibiotics prior to surgery to kill any bad bacteria.

I'm still maintaining the nightly regimen of freshwater enemas and taking about 1 vicodin in the evening to slow things down so I'm not running to the bathroom throughout the evening when I need to take care of my son. Those things combined with a restrictive diet have enabled me to function the past couple of weeks. One of the things I love when reading all the potential side effects associated with Cipro is that many of them can occur up to several months after finishing the drug. I just have to laugh at that. The good news is that I've got so much to do over the next couple of weeks that the time is going to fly leading up to surgery. Before I know it I will begin a new chapter in my life.

Reflecting

2011-11-11T18:48:00.000-08:00

I met my my Gastroenterologist yesterday to review with him my Cleveland Clinic experience and share my surgical decision. Fortunately for me my doctor knows my history and how I feel about drugs and taking long term risks with my health. I shared with him the story of the woman next to me on the plane to Cleveland, who as it turns out has Crohn's and as a result of her immunosuppressive therapy developed leukemia. My doctor knows my health and quality of life are important to me and is very supportive of my decision and knows as does my surgeon how much thought I put into it.

The funny thing is I began reading some of my older posts last night and was able to put everything in perspective as a result. I have really been struggling with this pouchitis from the very start. Reading my post about "glass ass" from last year as well as being concerned that my first scope wouldn't yield any results because the pouchitis was not flaring at the time. Going back and reading about the constant struggle and things I've tried to get my pouch to function normally made me feel even better about the decision. Of course all the nice words of encouragement I've gotten from all my visitors has helped greatly as well.

While I am not looking forward to the surgery itself I am looking forward to getting my life back. This blog and reflecting on where I've been the past two years has helped me to be even more at peace with the decision and knowing that I am making the right one.

New URL

2011-11-10T17:55:00.000-08:00

I didn't want my blog to be just about me and my ostomy, though I recognize that will dominate my posts going forward. I've been blogging my experiences for over two years now, pre j-pouch. I want my blog to be a place where bagless and bagged alike can hopefully find the answers they are looking for. The result is a new domain url, http:www.spillingmyguts.net. Spillingmyguts.com was already taken. The new url is not negative and actually more representative of the type of person I am. I'm not one to hide my disease and talk about it actually quite freely, perhaps too freely sometimes my wife would say. I find that talking about things or blogging about them is a form of therapy, first of all. Secondly I truly the more I share, the more people learn about these dreadful diseases and they more understanding they hopefully become. The old url will still work and redirect everyone to the new domain. I hope everyone approves.

Top 10 Benefits of Having a Permanent Ileostomy

2011-11-09T19:52:00.000-08:00

With practice you never have to sit on the seat of a port-a-john or public restroom again!
Your prison value takes a hit if you ever have to serve time in prison.
With odor eliminating drops for your ostomy bag or even altoids your poop will smell the least of anyone in your household or workplace.
With the filters on modern ostomy bags you can pass gas freely without everyone around you wondering who farted.
You can't really be an A_ _hole if you don't have one, right?
If someone want's to pick a fight with you they do so at the risk of getting shit all over themselves. Its a great defense.
When in your senior years you do not have to worry about incontinence or adult diapers.
The problem of doing number two in the wilderness while camping is less of an issue.
You no longer need to buy expensive toilet paper.
You never have to have another endoscopy again!

Blog Name

2011-11-05T21:50:00.000-07:00

Can I keep the blog name if I no longer have a j-pouch? Maybe I need to post a link to a new blog?

KissMyOstomy.blogspot.com or a "A Bag Full of Promises", "Digestive Digest", "Ulcerative Colitis and My Life without a J-Pouch", or "One good shit bag deserves another".

Not quite sure bit I'm open to ideas....

The Final Decision

2011-11-01T18:25:00.001-07:00

I pass the point of no return on December 13th. As has been documented I wasn't at all pleased with my experience at the Cleveland Clinic but did get the information I needed. I did not test positive for IgG4 pouchitis, Crohn's, the anti-nuclear antibody blood test. In short I was given the o.k. to safely remove the pouch that never seemed to perform as I had hoped. I met with my surgeon yesterday and set the date. My surgeon felt confident that I did enough research and put enough thought into the decision to proceed. He also is well aware of my desire to live a life free of drugs, which was part of the reason I had the jpouch surgery to begin with. I just simply got dealt a crappy hand when it came to my digestive health.

In trying to treat my pouchitis I think I've got a couple of tricks or vitamins that I will continue to use in my new life as an ostomate. For one, Psyllium, is a prebiotic and has the added benefit of slowing down output. Turmeric and garlic also have digestive health benefits. I will not lie, it is not an easy decision but I believe it is the right decision. I believe that often the right choice is the one that is more difficult to make because it is harder and by nature we want to choose the easy path.

I will miss not really being able to take showers and baths with my son like I do now. From what I understand hot tubs are no longer an option, not that I've been that often. Sleeping on my stomach will no longer be possible. I won't be able to wrestle with or toss my son around for a while following the surgery and he will never know a "normal" dad. But I have to face it, I've never really been normal ever since coming down with ulcerative colitis and certainly since jpouch surgery.

The good news is I will be healthier. I may even get my energy levels back up being able to eat a more balanced diet and exercise more regularly. I won't have to worry about "glass ass" or "firearreah" ever again. I will have more freedom and less pain. Most importantly I won't be taking long term risks with my health as I wan't to be around for a long time for my son.

Final Verdict

2011-10-28T18:54:00.000-07:00

I got back from Cleveland yesterday and not soon enough. It wasn't the greatest experience but I got what I needed, which I guess is all that matters.
First of all I was in Cleveland one of the most dismal cities in America. While it was in the mid 70s and sunny in Charlotte it was overcast, rainy, and in the 40s in Cleveland. With the exception of a couple of sports venues, the university, and clinic the rest of the city's architecture is cold and emotionless and looks as if it should be condemned.
My scope was scheduled for 9:30 am. I got taken back closer to 1 in the afternoon. My 1:30 consult got pushed back to 4. My endoscopy showed no ulcers this time or inflammation. Though not totally surprising I had just finished a round of cipro a few days earlier, been eating nothing but soup and boost shakes for the week leading up, and continued a nightly ritual of warm water enemas. Dr. Shen took a couple of biopsies, blood work, and stool samples. He was pretty much testing for everything. The biopsies confirmed my original diagnoses and I did not test positive for IgG4 pouchitis, which was a relief. So I guess I got what I needed the clear conscious to know that I can proceed with pouch removal and the hope of leading a healthy life. Albeit not without a new set of difficulties.
I wasn't impressed with Dr. Shen as a doctor. I'm sure he is a fantastic researcher but he was typing and making recommendations upon flipping through a few pages of my records without listening to me. It felt like the old Saturday night live skit with Dan Akroyd and John Belushi..."cheeseburger, cheeseburger, cheeseburger, pepsi, pepsi, pepsi." I got the results I needed and follow up with my surgeon on Monday to begin moving forward. Until surgery I refuse to take antibiotics and will give natural remedies a try until then. Coconut water, sodium bicarbonate, black walnut extract, and turmeric are a few of the options that may seem to help. I've still got the clonazapram to help with the anxiety in the meantime.

Dark Days Ahead

2011-10-16T18:48:00.000-07:00

Fortunately my wife was home last week because it was not a good one. Six days after coming off the latest round of antibiotics my pouchitis was raging. I couldn't eat without getting sick and was consuming vicodin twice a day just to function at work. The downside to the vicodin is the extreme grogginess which required me to use my lunch break for an afternoon nap in my car. Back was the bleeding, burning, and nausea. I finally gave in at the urging of fellow jpouchers and called my doctor to have him call in some cipro. This time though it has not been nearly as effective. Just yesterday at the playground with my son I was so nauseous I felt as if I was going to throw up there. When we as a family went out to eat afterwards I did just a bowl of egg drop soup, it was all I could handle.

Julia got the call back to work this week and left early for Canada today, which means its father and son again this week. I come off the antibiotics again after tomorrow and feel it could be a very long week. When the pouchitis is raging, aside from the nausea, burning, and bleeding, there I have an excessive amount of rectal pressure, which only makes things worse. Last week while waiting for a refill of "Analpram E" a topical steroid I decided to buy a warm water enema kit. So far its turned into a nightly ritual and seems to help. So we'll keep it up till Cleveland, 9 days and counting. I'm loaded up on boost shakes because I don't think I'll be able to eat much this week, I just hope I can keep up with Richie.

I wonder if I'm taking the decision to give up on my pouch to lightly. When I step back and look at things logically it's a no brainer though. I understand once I make this move there is no turning back. I also understand (because I've lived with an ostomy before) that its not without its difficulties and complications. But the goal is to be healthier right? To have more freedom and less pain. Most importantly not take any unnecessary risks with my health so I can be around for my son for a long time.

Counting Down to Cleveland

2011-10-05T18:22:00.001-07:00

There's less than 3 weeks left to the date that I get scoped and meet with Dr. Bo Shen at the Cleveland Clinic. While I've read about IgG4 pouchitis, my hope is that he simply reaffirms the diagnosis of chronic refractory pouchitis, at which point the decision to go to a permanent ileo becomes an easy one. I've made the decision already I just need a second opinion to be certain that if I do follow through there won't be some new issue with what little digestive tract I have remaining. Considering I had now problems during my 3 months living with a temporary ileo I'm hoping I wouldn't have any with a permanent ileo.

I took my last 500 mg of Cipro on Sunday night. Now Wednesday, just three days later my frequency is up drastically as well as the pain and discomfort. I had to crack open the vicodin this evening, which I'm not crazy about because of how it will make me feel tomorrow. I'm going to be living off the pain meds for the next three weeks because I don't want my pouchitis in remission before my meeting with Dr. Shen. On a side note I've discovered that the half pill of clonazepram, which I got prescribed for the anxiety I was experiencing with my medical dilemma after being released from the hospital will help me sleep without making me feel groggy the next day like vicodin does. When my pouchitis is raging I don't feel like making matters worse, which means I won't eat or drink (adult beverages) much if at all. The good news here for my friends is that I have nominated myself designated driver for our local Oktoberfest celebration at the German Restaurant in town. Once I have the bag and my health back I plan on taking advantage of it next year at Oktoberfest.

More Cipro

2011-09-28T03:32:00.000-07:00

I just wanted to provide a quick update before I head off to work this morning. I had finished my round of antibiotics (a cipro and xifaxan combo) just a couple of weeks ago and was ready to see how long I could go drug free. The answer as it turns out is 6 days. Bleeding, burning, and frequency all came back right before a weekend trip to DC with my wife. I also had to call in some more pain medicine which helps slow things down and takes the edge off so I can function. The downside to the vicodin is that if I take it in the evening before bed I'm very lethargic and drowsy the next day, which makes it difficult to work. I try to use it only when utterly necessary. I called my doctor to request more drugs because I didn't feel I could make it through the weekend away from home without some relief. I also mentioned that I did not want to stay on anything too long this time or put the pouchitis in remission for a long period of time because I've got the procedure and consultation at the Cleveland Clinic at the end of October. I don't want to take the car into the mechanic while its running fine. So, I'm on cipro for 10 days and then we'll see what happens. More than likely a few days after coming off it pouchitis will rear its ugly head and then I will have to endure until Cleveland.

The Dalai Lama and the Art of Hapiness

2011-09-15T17:14:00.000-07:00

I've always considered myself more of a buddhist than anything else, though admittedly I don't always do a good job leading an enlightened life. In any case as a result of my beliefs I have several buddhist books and today when I told Richie to go grab a book to read he grabbed the art of happiness by the Dalai Lama. He opened the book and I read the first paragraph the page he turned to. As I think about the decision I have to make with regards to my long term health and recent medical revelations I couldn't have found the passage more appropriate. It reads,

"Everyday we are faced with numerous decisions and choices. And try as we may, we often don't choose the thing that we know is "good for us." Part of this is related to the fact that the "right choice" is often the difficult one - the one that involves some sacrifice of our pleasure."

Poor Kid

2011-09-15T04:36:00.000-07:00

Fortunately I have a great boss that allows me a bit of flexibility with my job. As a result I will be going into work on Saturday to make up for today so I can stay home with my my 22 month old son, Richie. Richie had 6 bowel movements in about a 14 hour period, 2 of which were during the middle of the night at 1:30 and 4:30. He never has a bowel movement during his sleep. His bottom is extremely raw and he would cry in pain any time I tried to wipe his tochas. Unfortunately, I know all too well how he felt. He had a couple of soaking baths during the night followed by generous applications of calmoseptine. I peeked in on him just a few minutes ago at 7:30 am. He's usually up by this time but obviously so worn out from last night that he is still sound asleep.

I'm sure most parents don't get as scared as I do when their child has a bout with diarrhea. Nor really understand the pain, but jpouchers, uc, crohn's, and other colonically challenged parents I'm certain do. I just hope last night was the worst of it and that he begins to feel better today.

Cleveland Clinic

2011-09-13T19:18:00.000-07:00

At the behest of my GI, Surgeon, and wife I have given in and decided that before making the permanent decision to remove my j-pouch I should meet with the world's leading expert on J-pouches for another opinion. As my doctors put it, "to see if Dr. Bo Shen has any tricks up his sleeve or different diagnosis. I have a pouchoscopy and consult scheduled at the Cleveland Clinic all on the same day in late October.

This visit does not change my opposition to remaining on antibiotics or immuno-suppressive drugs long term. It will put me more at ease that I am making the right decision if the diagnosis turns out to be the same and if it isn't then maybe there are different treatment options. As someone mentioned in an online forum, no one will force you to make a decision you're not comfortable with but that I owe it to myself to explore all my options." The worst part of the trip will be the two days of work I'll miss without pay (though protected by FMLA) since I exhausted my paid time off bank with the recent hospital stay combined with the fact that I'm going to be in Cleveland. The good news is with my wife's job and travel she has enough miles to pay for the plane ticket and also has a friend that lives in Cleveland and is willing to put me up for a couple of days.

I also meet with my surgeon next week to follow up on our visit from last Friday after he had a chance to talk with my GI about my situation. I'm just a little bit interested to hear what he has to say after talking to my GI. By then I will have been off the antibiotics for a week. Unfortunately the past two days I've already noticed that the antibiotic cocktail has been losing its effectiveness and am deathly afraid of a flare like the one that sent me to the ER last month. That could change everything.

Well, that's it for now.

From Gamertag to Fantasy Football Team Name

2011-09-10T17:51:00.000-07:00

I just wanted to share with everyone that I took my new XBOX gamertag and have decided to use it for my fantasy football team as well. As a result I've worked out a few logos for "Kiss My Ostomy". Here's to hoping that the name change brings me the championship.

1st meeting with my surgeon

2011-09-10T17:18:00.000-07:00

The results from the prometheus test came in and were sent to my surgeon, whom I met with on Friday afternoon. So far it appears I've eluded CD (Crohn's Disease). Apparently there are three possible results from the prometheus tests; consistent with IBD - Crohn's, consistent with IBD - Ulcerative Colitis, and not consistent with inflammatory bowel disease. My results were not consistent with inflammatory bowel disease. This lead to the next question, which was how was the ulcer and inflammation in my pouch explained. The answer is that chronic pouchitis is not an inflammatory bowel disease.

I began then to explain to my surgeon that I am leaning towards removing my jpouch because I do not want to live my life on antibiotics or immuno-suppressive drugs, many which have very serious side effects. I explained that the question for me boils down to one of vanity versus long term health. I've been comparing notes with someone I met on the web in a similar situation and explained that I do not believe any doctor would deny you the opportunity to keep your pouch through a long term rotation of antibiotic therapy but at the same time I understand I'm rolling the dice with my health. Let's face it the odds have not played in my favor thus far so why risk it.

The discussion with the surgeon I guess went as I expected. He reminded me that the decision is not an easy one. He stressed the permanence and seriousness of the decision adding that if you chose to go with a permanent ileostomy that there is no going back. He reminded me of the risks associated with any surgery and particularly with this surgery the risk of damaging nerves to the male sexual organs. My response to him was that I had faith in him and that he did a good job the first time. Though I knew from my research that a koch pouch is not a viable option for a number of reason I asked him about it, to which he reinforced everything I had found out adding that while you will find a number of people who love them, the reality is that there are significant complication and difficulties with the kpouch, which is why he does not perform the surgery and only about 10 places in the country do. My surgeon did confirm that antibiotics used to treat pouchitis are not meant to be a long term solution, when I pressed him for an answer. He added that of all the j-pouches he's done I am the only patient of his that has developed chronic pouchitis, adding that he was sorry I was going through what I was. I told him that I was not sorry and that if I had things to do all over again I would not change a thing. If someone told me while I was as sick as I was with UC and nothing was working that I had an 85% chance of success with the jpouch, I would have taken those chances. My surgeon indicated he would talk to my GI about my situation and the results of the prometheus test and follow up with me next week. In the meantime my current drug regimen ends next week and if I wind up needing the antibiotics shortly after that then I'll have a good idea where I'm at.

Xbox Live Gamertag

2011-09-02T13:28:00.001-07:00

Before years end I'll be an ostomate once again. I believe it may be time to change my xbox gamertag. I've got a few ideas so far but welcome suggestions. I've only been able to come up with ideas focused on the word bag, but would like ideas using guts or stoma.

Ideas so far include: BaggingIt, ItsInTheBag, BagBoy, and
KissMyOstomy.

Coping

2011-08-31T19:08:00.000-07:00

I remember when my Ulcerative Colitis was raging saying to myself that the one thing I never wanted to do was live my life with a permanent ostomy. As the ulcerative colitis got worse; sleepless nights, control issues, and gut wrenching pain I'd often find myself in tears wishing for anything else. I was participating in a drug trial for abatacept and just like with remicade I had little success. The doctor overseeing the trial who I revere very much explained the j-pouch procedure and the more research I did the more promising an option it appeared to be. Now almost two years after takedown I have yet to get to the point I had hoped to. Life over the last two years has been at times worse than it was with UC but for the most part much better (with the aid of drugs which I had hoped to be rid of with the surgery). With my jpouch I had greater control, I was no longer afraid to leave the bathroom or afraid to eat (the last couple of weeks excluded). I was able to run again with confidence and venture out of the house. However, terms such as "glass ass" and "fireahreah" have made their way into my vocabulary. After last week's hospital stay and revelation that my condition is not going to go away I have to admit to being a bit depressed (glass of red wine in hand as I type, yes it helps).

I never wanted to live my life dependent on drugs. Its unnatural and the long term side effects are yet to be determined. I also swore I'd never live my life with a "shit bag" but I guess if you live long enough one is bound to eat crow from time to time.

Today I met with my GI to discuss the pathology and options before me. My GI essentially indicated to me what I already knew. If it is determined that I do not have crohn's disease (CD) then and permanent ileostomy would provide me with the better quality of life free from drugs and their side effects. Add to that the fact that the drugs over time lose their effectiveness to the point you either increase the dosage or they simply no longer provide relief. Unfortunately pathology tests are not an exact science. In looking at the biopsies apparently granulation in the specimen is one of the indicators of Crohn's. Based on that fact they do not believe I have developed Crohn's. However, beyond that there was not much more to go on. Having done some research of my own I asked my doctor about the prometheus test, which I had blood drawn for today. Publicized information on the test indicates there is a 92% success rate in making the determination whether crohn's disease exists or not. If the results are consistent with the pathology results I'm looking to say goodbye to even more of my bowels and life as I know it. Of course I will adapt and get back to where I was before my takedown two year ago but it won't be easy.

As I weigh my options I've simplified the decision making process. The only reason I or anyone else would put up with the drugs and pain needed to manage chronic pouchitis is out of vanity, one of the seven deadly sins. The reason to go to a permanent ileostomy is to get off the drug train and potential damage, to be healthier and hopefully live a longer life for my 2 year old son.

I meet with my surgeon on Friday next week to get his input and hopefully we have the results of the prometheus test by then as well. I'd like to put off the surgery until mid-December, which will allow me to work as much overtime as possible and put away some extra money since I will be out of work for a while. Also after spending a week in the hospital already I feel I will hit the limit for my annual deductible of $1500, so it makes sense to save another $1500 by getting it done this year. With the time I have left between now and then I need to max out my pool time on the weekends, as I don't believe with an ileostomy I'll be doing a whole lot of swimming or going to the pool without a shirt on.

Diagnosis

2011-08-26T19:01:00.000-07:00

It has been an eventful couple of weeks and now I'm out of time off for the rest of the work year. Thank god were entering the final stretch. Four months remain until my PTO bank replenishes itself. Lets hope there are no more hiccups with my health.

I thought the symptoms I was experiencing were those of a partial blockage but apparently I could not have been more wrong. Suffering from dehydration and unable to eat without extreme pain I checked into the hospital Sunday afternoon. Monday I had an abdominal MRI, which showed no obstructions or pouch abnormalities whatsoever. I was actually hoping for an adhesion that the could just go in and clean out. That would have been the simple answer because I knew something was wrong with me. Tuesday I was off to the endoscopy wing for a flex sigmoidoscopy. Of course this time I asked to be sedated. The results were not what I wanted to hear. According to the doctor most of the pouch looked good with the exception of an inflamed ring around the pouch and ulcer. Whoa! Ulcers! I was like I thought I got rid of those when I got rid of my colon but apparently not. I automatically assumed then that it meant I had developed Crohn's but not necessarily. I had to wait until Wednesday for the pathology results of the biopsies. The diagnosis: chronic inflammatory pouchitis. Though my doctors want to take a second look to be certain. The fact that ulcers were back and wrecking havoc on my body when I thought I was rid of them is a new game changer, as I'm contemplating things I told myself were unimaginable. The diagnosis means staying on antibiotics for as long as I can see and those antibiotics have some not so desirable side effects. Other treatments include the biological and chemo drugs used to treat UC, that were either unsuccessful in keeping my UC in remission or I want no part of taking. This wasn't what I wanted to hear.

Now the question I ask myself is whether my vanity or self-image, whatever you want to call it is worth my staying on the drug train or whether going to a permanent ostomy is the answer to keep me off the drugs and hopefully prolong my lifespan. I've said it before my decision to have the j-pouch surgery in the first place was to get control of my life back and be able to have some kind of life with my son. My family's best interests not necessarily my own personal vanity need to be at the center of my decisions about my next steps this time around too.

Latest twist

2011-08-23T20:25:00.001-07:00

I was having a very rough week last week and realize I did not follow up my last post. By Friday I was still unable to eat without painful repercussions. I met with my GI on Friday who offered to admit me to the hospital then based on what appeared to be partial obstruction symptoms. Instead I went home and remained on fluids only until I tried to eat again on Saturday. By Saturday night I was back in what I previously described as obstruction hell. Sunday afternoon I was checking myself into the hospital. I was put on an IV as I could not keep up with my fluid loss and apparent lack of sodium. No food or water on Sunday and again on Monday. Monday evening I finally got something to drink in the form of barium sulfate for the MRE I was going to take. The results this morning showed no abnormalities or blockages. So by this afternoon I was prepping for a flex sig because there still was no answer to my problems. The result of todays scope were ulcers in my pouch, something I did not think could happen since I had UC. Apparently it can. Now I'm just waiting to meet wit the doc in the morning to discuss treatment options while seeing if I can eat again.
There's plenty more to come. Good Night!

Relief

2011-08-18T18:15:00.000-07:00

Relief came yesterday about 1 pm, but I don't feel I'm out of the woods yet. I had a mild breakfast of scrambled eggs and potatoes this morning, which was only followed by a piece of bread at lunch time and now I'm showing many of the symptoms again and feeling considerably nauseous. I'm hoping I make it through the night with little to no issues. The problem for me know is I've probably had less than 1000 calories over a 3 day time span. As a result my energy levels have plummeted. Well see how things go tomorrow.

Obstruction Hell

2011-08-16T20:24:00.000-07:00

I came home from work early today and unless my symptoms abate sometime soon it doesn't appear I'll make it in tomorrow. I'm enduring what I believe to be, given the symptoms, a partial bowel obstruction. It would be my second this year. Obviously as the word partial suggests it is more manageable and less painful then the full blown obstruction I had shortly after takedown, which sent me to the hospital. Nonetheless, the last 24 hours has been hellacious. I'm hoping the frequency of stomach acids and bile leaving my system abates some time soon, otherwise I'm off from work and off to the doctor tomorrow. Not fun stuff. I don't think I ate anything out of the ordinary that would have triggered this my best guess is maybe scare tissue from the surgery aggravated by a significant ab workout the other day that left my mid-section feeling somewhat bruised and beat up. I'll follow up on this post tomorrow to let everyone know the end result. Hope I'm able to get some sleep.

The Drug Machine

2011-08-10T18:07:00.000-07:00

I'm sorry its been so long between posts. Life somehow finds time to get in the way. I had about a month free of antibiotics and problems. All good things though come to an end and I've been cycling between flagyl and cipro for the past month, with the occasional vicodin to keep things in check. I began the lates round of flagyl this past Friday but whereas usually I notice improvement right away, this time I did not. I contacted my GI early in the week to find out what the next step should be and am now taking prednisone for the first time in 4 years. The last time I was on prednisone I still had my colon and was battling Ulcerative Colitis. The good news is that with just two days on the drug I noticed improvement almost immediately. My frequency and urgency abated, the pain and bleeding have subsided as well. When I suffer from what I guess is pouchitis or cuffitis (though its never been determined definitively) I tend to fast because food becomes associated with pain and I can deal with hunger over pain any day. After a while of eating less you need less to fee full when things do normalize. Thats how I keep my svelte figure. So right now the pharmaceutical cocktail that I'm currently consuming consists of; prednisone, flagyl, dicyclomine, and the occasional vicodin. I can't say that I feel myself when on those drugs but perhaps that is a good thing after all.

Still, I'm convinced that years from now I'll pay the price for all of this. But I have no choice. I need to function now in order to continue playing the role of single dad during the work week to my almost 21 month old son. My exercise regimen has taken a hit lately as well. I am the true weekend warrior. Getting up at 5:30 every morning to get my son and I ready for daycare and work respectively and not getting a moment to breath until 7:30 or 8:00 I'm exhausted. To make maters worse I've had to lay off the running because of some knee pain, so now I'm relegated to the exercise bike, swimming, and weights. I love to run though.

Before I sign off, I wanted to share the family tragedy that was the passing of our beloved dog Lucy, who had been with us for the past twelve and have years since she was a small puppy. She finally lost her almost one year battle with cancer after being given only 3 months last September. She was the greatest dog anyone could ask for. She comforted me after my surgeries and took the addition of the baby in stride. She did not show anything but love for the baby, allowing him to pull, tug, and bite whatever he wanted. Perhaps it was because she knew that he was the reason so much food fell her way. Lucy is truly irreplaceable.

Its been a while

2011-06-19T17:39:00.000-07:00

Its been a while since my family and I returned from Israel and while I had a rather uneventful trip there I have had an even more uneventful trip since I have returned. Its funny how that works. When I'm not doing well I have more to write about yet when I'm doing well it seems there is nothing to write about. As of today its been nearly a month since my last antibiotic. BMs are between 8-10 a day but there is no pain and discomfort. 8-10 feels like a good day the truth be told. I've taken the occasional vicodin to keep the bm's at bay. For example, Julia and I went to a symphony pops concert on the lake on Friday and so that I wasn't running to the port-a-john took a couple vicodin. One BM from Friday evening to late Saturday morning! Not bad. No antibiotics, no cream, no meds (with the exception of the pain meds) means there is nothing to report. I hope everyone else is doing as well. Perhaps as the years progress the pouch improves and there is even less reason for anyone to have to live with ulcerative colitis.

New Android App

2011-05-30T19:00:00.000-07:00

I wanted to share the new android app I found today. It may make it easier for me to keep track of my diet, meds, good and bad days. Its called the GI Monitor. I'll see how easy it is to keep up with it and report my findings in a later post.

https://www.wellapps.com/guide/onlineapp

Back from vacation

2011-05-19T19:13:00.000-07:00

My wife, son, and I just returned last weekend from a nice two week vacation in Israel. It was a very nice trip seeing lots of my wife's family and taking in some history and sightseeing in the process. It would have been more relaxing had our house not been broken into and burglarized just a few days prior to departure.
I had a fairly smooth trip as far as my pouch was concerned. I had just finished taking a round of flagyl a few days before leaving. I was really concerned that the long flight would be problematic and it wasn't. My j-pouch seemed to be under control for most of the two weeks. I did not take any antibiotics for about a week and a half after finishing the flagyl. After a rough day towards the end of the trip though I began another round of Cipro, which I should be finishing up in the next couple of days. The vicadin was helpful particularly useful for our tour of Jerusalem. We got to the station at 6:30 am for the day trip to Jerusalem and I was able to go the entire day walking through the city without a single bowel movement till 7 pm that evening. I also ate more and later than I typically do at home with no real problems. It was really a smooth trip. The most difficult part was waiting for my father in law to arrive with our pack and play from home so my son could sleep on his own. Without it he was sleeping with us which was no fun for the parents.
I'm back at work now and so is Julia. She is traveling again for the first time since being diagnosed with cancer in September so its Richie and I during the week. Richie started at a new day care this week to. My son is quite the trooper traveling halfway across the world and beginning a new daycare 2 days after coming home all with a smile on his face. I'll try to blog more when I have a little more energy. Now its time for bed.

Better living through drugs

2011-03-22T18:55:00.000-07:00

Well I finally gave up and took the flagyl again as the 3 week cipro experiment didn't end well. What we have determined is that my system still reacts positively to antibiotics but almost as soon as I come off of them, frequency and pain increase. I met with my GI last week and for now the plan is to cycle the antibiotics to keep me feeling well. So I have an open prescription for cipro and flagyl. I was also given some xifaxan to throw into the mix. As always I'm concerned about the long term affects of taking these drugs. I had hoped that having the surgery would allow me to get off the drugs but so far it hasn't really worked out that way. When things are going well life is great and for the most part I know I can get well, something I was unable to do with much more dangerous drugs while coping with UC. I'm trying to stay positive and am doing ok the past few days having come off of the flagyl on Friday. Saturday was an exception as beginning late Friday night to early Saturday evening I had to also deal with a partial bowel obstruction as was passing nothing more than stomach bile in massive quantities for nearly a day with some cramping and abdominal distension. I had my life insurance physical a couple of weeks ago so with all this going on I'm curious to see if and how that affects my quote or whether or not I'm an acceptable risk.
On a side note the weather is great. I'm working out more frequently as spring is here in the Carolinas. I've broken out the jogging stroller to go running with my son a few times already. I also purchased a spin bike and get a good workout from that as well. With pool season fast approaching I've got to be able to show off those jpouch surgery scars.

Ready for Spring and to get off these antibiotics

2011-03-01T18:21:00.000-08:00

Believe it or not by my time off of cipro has been brief. I started taking it again around the time of my last post. I was off of the antibiotics for just a few days and after significant pain and a surge in frequency I was back on it. I did made the executive decision to resume consumption because 3 vicodin in the middle of a really bad evening did nothing to reduce discomfort or slow down motility. I called my GI at the beginning of the week after resuming my cipro and was told that we will try to taper off of it this time to see if it helps. I'm keeping my fingers crossed. I'm still experiencing with Florastor and haven't determined if its the probiotic for me. Its certainly more expensive than the VSL3DS even if I find the generic strain online. I'm interested to learn what other probiotics other j-pouchers swear by.

Things are going rather well at home, though I don't seem to have the time to do all the things I want to or need to. My son was sick again the past week with yet another ear infection. I believe it was either number 7 or 8. He's only 15 months old so that's one every other month. After meeting with an ear specialist and talking to our other friends, we've decided to go the tubes route. I just hate the fact though that I'm subjecting him to "surgery" at such an early age. However seeing him sick all the time and so uncomfortable is even less appealing. He seemed to be doing significantly better the past two days. I love taking pictures but a sick toddler makes for really lousy subject matter. On the bright side he said his first word a couple of weeks ago, grabbing my nose and uttering "nosik", which is Russian for nose. Until then I feel like I have to defend the fact that its taking him longer to utter some recognizable words because he's learning two languages.

I finally got some cardio equipment in the house, a new spin bike, so I can workout after the kid goes to bed. I'm still so eager from spring and summer. More daylight hours and warmer temperatures means evening runs with my son after work. Maybe I'll get to run a race with him in the jogger this year.

Finding time to breathe

2011-02-10T17:04:00.000-08:00

Its been very difficult as late to find time to breathe let along blog. My pouch hasn't made things any easier as of late either. The new job at work is really going well. I enjoy the group of people I'm working with and have a great manager. The opportunity to get my series 7 is great too. Trying to find time to study now with a 1 year old and my wife back at work is very difficult but my manager is really working with me to help me find the time.
My wife and I celebrated 14 years a week early last week. Fortunately for our celebration plans; modern Indian cuisine followed by a night at the Opera (La Traviata) and checking out my buddy's band at the Irish pub uptown, I had called in some Cipro only two days earlier to settle me down. Within a day I was feeling normal and no pain. I don't think I would have been able to enjoy our night out otherwise.
Prior to getting back on the Cipro, my mind had wandered to the fact that with the ostomy I had no pain but then again I did not feel I had a great quality of life either. The bag always seemed to get in the way of things. I had a meeting with my GI on Monday. He essentially told me that it will take some trial and error to find my happy medium.
Since the take down I've tried a number of things to get me to "normal". I increased my fiber intake, which would slow things down at first but only temporarily. Then when things made there way out the increased fiber invariably led to straining and bleeding and considerable pain. The same can be said of my increased immodium intake. If I go to the other extreme though then I'm dealing with burn and frequency. I'm learning that living with a j-pouch requires finding the happy medium. I had success the first time I took VSL3DS but after a while noticed no considerable benefit and the cost was enough to get me to question how much I needed it.
Right now I'm off the VSL3DS and I've reduced my immodium intake from 9-12 a day to 2-4 a day. I'm currently taking Cipro and will follow that up with a new probiotic "florastor". I'm keeping my fingers crossed.

Happy New Year

2011-01-18T17:47:00.000-08:00

The holidays are over and work is picking up. A surgery and several months of chemo treatments later and my wife appears to have beaten the cancer that took us by surprise. The latest battle has been with my 14 month old son's ear infections. After missing 2 1/2 weeks of daycare over the past month he seems ready for a return tomorrow. Unfortunately that means he won't be too happy for dad to drop him off. Parting is the worst.

As for my cuffitis? There have been more good days than bad lately in large part to a correlation between getting ill. I've battled a cold and sore throat the past few weeks and find that each time I do the pain my pouch seems to cause me is significantly reduced. I know I've mentioned this before and found that others had a similar correlation. At the same time, aside from eating smaller meals I've tried not to eat anything past 4 o'clock and noticed that those are my best days. I fear I'm setting such a bad example though for my son, who does not want to eat. My wife and I often find ourselves chasing him around the house with a spoon to get him to eat anything. He's still the biggest kid in his class so he's not suffering, nevertheless as parents we're concerned. I've been able to reduce my food intake as I haven't required much. Between the kid at home, work, and now trying to find extra time to study for my series 7 license there hasn't left much time to work out and I hate running in the cold. I did it when I was in high school and college but not any more. I'm in the market for a treadmill, which I hope will cure the sluggishness.

To summarize the latest methods to control cuffitis: eat less, eat early, and get sick. Oh, I also forgot to mention I've also reduced substantially my intake of immodium as I try to find some middle path or recipe for sustained success with my pouch. It feels like a never ending endeavor.

Happy Holidays

2010-12-26T18:30:00.000-08:00

I want to start by wishing everyone a Happy Holidays. As the year comes to an end I realize that this blog is coming up on two years in the spring. I've learned a lot through this blog and met other courageous individuals along the way. Thank you for all of you who have visited the blog and shared your stories with me. Its in the hope that I'm helping someone from time to time by sharing my experiences that I continue to blog and will continue to do so. I want to wish everyone the happiest and HEALTHIEST of New Years! May the new year be the healthiest and happiest yet.

Latest News

2010-12-11T18:31:00.001-08:00

I realized I haven't followed up since my scope, mostly because I've been preoccupied with my wife. Her cancer treatments took a negative turn over the past week and while we had been hoping the chemotherapy alone would be enough it just wasn't in the cards. My wife had a hysterectomy Friday afternoon and is now home and recovering.
The day before my wife goes in for surgery the daycare calls us because my son was running a 101 degree temperature. Now that his temperature is down he's coping with diarrhea. Dad's partly to blame giving him watered down apple-carrot juice to drink because he needed fluids. As a result the kid has the worst case of diaper rash we've seen yet. Now the poor kids but looks like a baboon's. After a soak this evening I plastered it good with calmoseptine. Thank god for him his dad can relate and has the goods to manage these types of things.
As for the scope it was quite painful going in. The good news is the pouch looked good. My doctors next best guess is that what I'm experiencing is not pouchitis but cuffitis. So I'm back on canasa suppositories again. I took them when my UC was raging with mixed success. So far the days seem to go rather well its just the nights are a little touch and go. I've been averaging about 4 bms during the work day so far, which is a lower number but still about 3 nighttime trips. The other difference I've noticed is now they are a lot more uncomfortable going in. If this doesn't work my doctor suggested I schedule a visit with my surgeon. I'm hoping things get better soon.

Down Scope!

2010-12-01T17:57:00.000-08:00

Well tomorrow will be the first look at my jpouch post take down. Hopefully the doctor gets a clue as to what may be causing the pouchitis or get a better idea of how to keep it at bay. The unfortunate thing is that its not flaring right now. Normally that's a good thing but when your cars having problems you want the problems to still be there when the mechanic is looking at it. Anyway we'll see how it goes tomorrow. I've got to be there at 6:30 am.
I am still on my first round of entocort and second round of dicyclomine. Maybe there is a little improvement here and there but not much. Most likely the drugs are nothing more than a placebo. I can't help but think with all the drugs I've been taking that it will have some detrimental effect years from now. Heck we've discovered that tylenol over a lifetime can cause kidney damage. I'm still positive and glad I have the j-pouch. If nothing else I never have to prep for another colonoscopy in my lifetime.

Glass Ass

2010-11-09T17:42:00.000-08:00

I try to look at the j-pouch surgery as a positive and a year later I still see more positive things than negative. I have however traded one kind of discomfort for another it seems like. The antibiotics work sometimes in controlling pouchitis but not all of the time. Lately, when my frequency shoots up accompanied by a little bleeding going to the bathroom has been painful. I don't believe its but burn, which I've heard many jpouchers refer to and I've experienced once or twice. The pain I've had lately can best be described as pooping glass shards. The pain continues for a few minutes after I'm done and then subsides until the next time. Tonight was so painful that it quickly became a two pain pill night followed by a bath.

I just started taking entocort after explaining to my GI I had another pouchitis flare while on a round of Cipro. The antibiotics worked great the first week or so and then after that nothing, finally towards the end of the cycle things improved only to go downhill a few days after finishing them off. Right now I'm on dicyclomine to try and slow down my motility and the entocort. Unfortunately I'm not seeing the results I'd like. I'll give it some time and hope this too will pass. I'm hoping to get this under control soon to make it easier for me and my wife as she deals with her chemo treatments. Tonight was not a great night for her either. Fortunately for us we were truly blessed with a great son, who makes parenting a breeze.

Some other time

2010-10-26T18:34:00.000-07:00

A few weeks have passed since my last posting. Unfortunately I have decided to drop out of the half marathon not for a lack of desire but more due to a lack of donations and personal funding, particularly with my wife out of work for some time while she undergoes chemotherapy. Two rounds are down and 6 remain. The numbers the doctors were looking at between the first two treatments showed significant progress so we remain optimistic.

Today was the first day with limited pain in my elbow though it remains swollen and inflamed. I'm still three weeks away from doing any strength training. Maybe I'll get out for a run tomorrow sometime after my physical therapy session. I was able to lift my right arm enough to brush my teeth with it for the first time tonight. I have a second post-op on the 2nd and hope to return to work after that.

I felt a little week today. My nourishment today consisted of a leftover burger from Sunday's cookout, a piece of toast with nutella, and some greek yogurt. Yesterday was a particularly painful day and even though I'm currently taking cipro I had a pouchitis flare. The odd thing was that my first week on cipro was great. I had no problems and had maybe 3-5 bm's a day, which is ideal. I find that like UC flares not eating goes a long way to reducing pain and discomfort but then it also saps my energy. I certainly hope today is better.

October Update

2010-10-05T19:02:00.000-07:00

I know its been some time since I've posted anything so I wanted to provide an update. Things have been going rather well the past week or so. Towards the end of August and early September I had gone back to the antibiotics. I tolerated Cipro but it wasn't as potent as before. I hate flagyl and asked my GI for some other antibiotic because of how crummy the flagyl made me feel. I then tried Xifaxan for the first time, which worked fine. The only problem is that there wasn't a generic available and it cost an arm and a leg. Fifty dollars to be exact. Things are relative smooth now. Shortly after I met with my GI, who is really trying to help me get my bathroom breaks down to 4 or 5 a day. I'm not sure how realistic that goal is. I'm fine with 8-12. Its still better than UC and as I've said before I have more control. I spoke with my GI about things I tried to reduce output with the ostomy like nexium. My doctor prescribed dicyclomine to help slow gastric motility. I'm not sure how well its working though as I have not noticed a significant difference.

In addition to j-pouch related issues I've had a few other things going on. Training for the half marathon has not been possible as a single parent during the week. My son had another ear infection recently so that ruled out evening runs. The weekend seems to be the only time I can get a run in. I haven't had much time to do much of anything for that matter. This Friday I'm having elbow surgery, which will keep me from being too active for a while with my arm in a sling. To make matters worse my wife was recently diagnosed with choriocarcinoma or gestational trophoblastic disease, a rare form of cancer. She undergoes her first chemotherapy treatment this Friday. She has been great though and I think I'm more concerned about her than she is. Life is full of zingers.

Salads, Drugs, and Running.

2010-08-30T18:23:00.000-07:00

I'm off the cipro now. It helped at first but I've actually done better the last couple of days off it then I did the last few days of the cycle. I had a few really bad days that required the pain meds to slow things down and take the burn away and will probably be due a refill here soon. A lot of the discomfort came as the result of my latest epiphany. I am discovering that while I can eat salads and other veggies its not always the greatest idea. While I've only had one trip to the hospital for intestinal blockage its clear salads and other raw foods are clearly an irritant. I just prefer them to the low residue diet.

Training went well last week. I've started getting back to the point where I feel I could run without stopping. Though I really haven't gone on any "long" runs yet. I ran about 4 times last week at between 4-5 miles each. Richies really good during the evening at going for a run in the jogging stroller if he has had ample sleep during the day at daycare. If not...well I can forget the run. While, I've got plenty of time till it gets cold, daylight savings time will be ending soon and it will get colder. Gotta get a treadmill.

The Cipro-Flagyl Saga Returns

2010-08-24T18:38:00.000-07:00

As a I finish up my two week cycle of Cipro it appears I'm no better off. The first week was great but its gone downhill again. Looks like Flagyl is on deck, which I'm not too keen on. Oh, I'll wait until after my fantasy football draft this weekend so I can drink during the draft, something you can't do while on flagyl. I've also noticed that while I haven't had any more blockage episodes after eating salad or raw veggies, they are still problematic and lead to increased discomfort. Things are still a thousand times better than they were just after take down so hopefully it keeps improving. Now if I could get some regular training in for the half marathon. I'd almost love to have my brother here again to help out so I could get more dedicated with my training rather than just being a weekend warrior.

Running for Crohns and Colitis

2010-08-22T15:02:00.001-07:00

I want to let everyone know that I am running a half marathon in Las Vegas this December for Team Challenge with the goal of raising $4,000 for Crohn's and Colitis research. I urge everyone visiting the site to contribute what ever you can to my fund raising effort. My fund raising page can be found here on this site but I'm including a link here. Please help me meet my goal and raise funds for research of these dreaded diseases.

http://www.active.com/donate/lv10carolinas/LVPLaGran

August Update

2010-08-15T07:23:00.000-07:00

It has been a month since my last post, which is the longest I've gone between posts since first beginning the blog. The fact has more to do with the hectic life and less to do with lack of subject matter to talk about. Aside from being a single parent during the week, work has been extremely busy with mandatory overtime a couple of weeks in July. Now that were in a house and no longer apartment dwellers it seems that there is a project, yard work, or something that demands most of my time nearly every weekend. My 9 month old son during the week demands constant attention as he is now extremely mobile and curious. My typical day starts around 4:45 am and does not end until about 10 pm. As a result I've been feeling extremely fatigued and run down as of late.
At my six month check up a couple of weeks ago I explained to my GI doctor how run down and fatigued I was, to the point that I was sleep talking at work. He ordered some blood work and explained that with a j-pouch that I was at greater risk for a vitamin B-12 deficiency. Fortunately it turned out that it was not the case and life was just taking its toll. Nonetheless I've increased my vitamin B12 intake. I figure it can't hurt.
Another contributing factor was more than likely the return of pouchitis. For the last couple of months if I had a bad day it was only for a day or two. Just this past week I had a string of bad days that lasted nearly a week and was getting up 3-4 times during the night to go to the bathroom. Recognizing I needed help I called Dr. Hanson to have him call in some antibiotics again and am on Cipro this week. The good news is the first night I was able to sleep 9 hours straight without interruption, with my brother's help. My brother stayed the week to give me some help with the kid.
I'm back on my own with Richie tonight. While time will be precious again, hopefully it won't be a month until my next post.

Settling In

2010-07-13T17:59:00.000-07:00

I've been in the new house for two weeks now and the garage is getting cleared of boxes. Still lots to do before were settled in though. I'm sorry but haven't had much time to blog the past few weeks. I'm still trying to get into a new routine with the kid in the morning too. Right now he's got an allergic reaction and we aren't sure what to and we've tried everything. Yesterday they took his blood and we'll have an answer soon but in addition to being all spotted he's also got an ear infection so he isn't a very happy camper. Lately, I haven't had many bad days, today was one but a little over a year since the first surgery and the bad days aren't so bad. Even when the frequency is up the pain and discomfort levels continue to diminish. I realize as I type this I've probably jinxed myself. I'd say now there may be one or two days a month where I have to pop a pain pill to reduce the frequency and discomfort but otherwise things are going well. I remember someone telling me on one of the jpouch boards that the recovery is small steps and takes time but in less than a year my life has completely changed for the better and I'm so happy I had the surgery. I remember rather vividly crying because of the pain, having no energy, and being afraid to go out for long periods of time. I'm finally beginning to close the door on those chapters. Oh, I'm sure I'll have days where things won't go well but hopefully they are few and far between.

Busy, Busy, Busy

2010-06-30T19:44:00.000-07:00

I just got back from vacation on Friday night. Then Saturday we had to do some shopping for the new house. As of Monday, my wife and I are homeowners again. There still a lot to do before the move and I've been very busy all week long. Monday was a real circus waiting for appliances to be delivered, carpet cleaners, the internet and phone company, utilities, locksmith, etc. To make matters worse only one of the two AC units in the house was working. This only three weeks after passing inspection. I called the service company that installed the units and met the tech today after work. We got into chatting when I mentioned my surgery. As it turns out the tech had the same surgery 18 years ago when he was 27. He proceeded to tell me how he eats anything he wants has no issues whatsoever and the only medication he takes is a shot of pepto in the morning which keeps him bound up for most of the day. It was good to hear a real success story and get tips from other j-pouchers and wanted to pass this on.

A viscous cycle

2010-06-16T18:54:00.000-07:00

This first year of parenthood has been a viscous cycle of illness as my son and I play hot potato with the cough and cold. Just as my son has begun to recover I've come ill again. The sore throat lasted a little over a week before turning into a full fledged cold on Monday. I'm staying drugged and trying to keep contact to a minimum. That however is difficult as a single dad during the week and as cute as Richie is. Hopefully this all clears up and both of us are relatively free of illness as we head to southwest Florida for a week on Saturday.

Anyway, my point to this posting is to share a j-pouch relevant observation. It seems whenever I'm sick the frequency of my bowel movements are at all time lows. I find it even more interesting because towards the end of my battle with Ulcerative Colitis the drugs used to keep it at baby such as remicade were immuno-suppressive. Just wondering if there is an actual correlation or if its just coincidence. Right now things are going well, going around 6 times a day.

A Hard Day and Night

2010-06-06T05:40:00.000-07:00

The day started off rather well yesterday but for some reason unknown to me my motility seemed to kick in to high gear. Judging by some hint of blood, pouchitis has reared its head again. I've been luck over the past couple of months in that when it does it usually goes away on its own. Its been about two months now since I began increasing the dosage of my lomotil, which seemed to help. I've become more aware of the foods I can and can not eat. I also rely on usually one hydrocodone table and maybe a bowl of rice to slow things down and get me through the night. Often by the next day things have improved. Last night however was a two vicodin night followed by a shot of analpram. Only then did my tookus get some relief. I'm a little leary about trying to eat breakfast now so we'll see what the day holds.

Summer!

2010-06-02T17:44:00.000-07:00

Summer is officially here now that we are into the month of June. Pool Season...I get to show of my sexy scars! Its going to be a busy month. We are trying to close on a house by the end of the month, taking a trip to Florida for a week to visit family, and trying to pack and work as much overtime as possible while my wife is off. I wish there were more hours in the day. We'll see how my j-pouch handles all the stress.

Things were going well with my j-pouch and wine experiment until Sunday and then a mild case of pouchitis appeared. I kept it at bay with lomotil, vicodin, and analpram and am hoping it goes away on its own soon. I want no part of the antibiotics again. I just don't feel like myself when I'm on them. I had to call in some refills to my GI this week on some of my supplies, now that I've transitioned from my surgeon. To my chagrin I found out that the generic of analpram, pramoxine was called in. The only problem is the packaging, one applicator for multiple uses. The single use applicators are much more hygienic and I would believe do a better job limiting any infections, which of course is what pouchitis is. I just have to try to find time in my busy day tomorrow to call the doctor and explain.

To make matters worse this week, I think my son has given me a sore throat again for the thousandth time this year. I'll be so glad when day care and the constant cough and sniffles are behind us.

Reflection

2010-05-19T18:31:00.000-07:00

I was reminded today by a fellow blogger that today was IBD Day, so I thought I'd take a moment to reflect on what having a disease has done for me. It has taught me that there are no guarantees in life and that life can take a different turn without even a moments notice. Having Ulcerative Colitis and now a j-pouch has also taught me to appreciate what I have and to really savor the good days. I have true appreciation for life and the little things, such as time spent today with my sick son and the fact that I had a limited number of bowel movements. I don't ask for much. I hope this blog as well as the others out there really give people a glimpse of what life is like with a inflammatory bowel disease.

Is Wine really that good for you?

2010-05-17T17:54:00.000-07:00

The last week or so I've had an occasional bad day where my number of bowel movements has been up around 10 to 12. Fortunately they are pain free. Oddly enough the very next day I'm usually back down to around 5 to 7. During this span I've also learned a little more about what I can and can not eat with the j-pouch. Sweets in general are out, particularly chocolate. This isn't a big deal because I really haven't touched them in years. If I do though I pay the price now as much as I did with Ulcerative Colitis. Beer and hard liquor are also out but Wine is in. Thank god because I've always loved vino. The last couple of times I've enjoyed a few glasses of wine the following day my frequency is down to 3 to 5 times for the day. That led me to question whether I should be drinking more wine. Could it be that wine actually decreases frequency with the j-pouch? I can only say that I hope to enjoy a successful testing of my hypothesis.

So far so good

2010-05-11T02:37:00.000-07:00

Its been about a month since I finished my last round of flagyl and things have been going rather well. I'm continuing to take 3 lomotil 4 times a day. I don't want to ruin a good thing. Bowel movements have been between 5 and 7 a day, which is very manageable. Most importantly there's been no pain or discomfort with them. I was even able to polish off a few glasses of wine over the weekend with no ill affects. This allows me to manage being a single dad with my six month old son rather easily. It's helped by the fact that my kid is AWESOME! He's so happy all the time, he sleeps through the night and then some. We are into week two of solid foods and last night he consumed 98 percent of it without spitting out a drop. Its going to get hectic here soon. My wife and I have an offer an a house, a short sale that we are no waiting on bank approval for. It means lots of packing, moving, and plenty of work to get to closing (loan documents, inspections, etc.). I hope my extended pouchitis free period continues at least until then.
On a side note, I got up at 4 am this morning so I could get a workout in while my son was asleep. Now that he is becoming more mobile he requires much more attention in the evenings, which leaves the mornings when he is asleep as the only time for me to get any kind of exercise. I put him in the jogging stroller on Sunday and it appears he's ready to go for a run with daddy soon.

Life without antibiotics

2010-05-02T19:16:00.000-07:00

Life has been keeping me so busy that its difficult to find time to blog. I've got to get better at blogging from my android phone. I want to update everyone on my progress these past couple of weeks without the antibiotics.

During the first week off of flagyl I set a new colitis era personal record by having only three bowel movements in a day. Later that week I was flying to New York by myself with the baby. We met my wife, aka "mom" in New York and drove in to see my family. The weekend with all the rich food and wine went rather well with only 4-5 bowel movements a day and no problems in the airports or on the plane with either me or the baby. My son was perfect, charming everyone with his smile and not crying at all during the two hour flight.

By Monday things weren't going so swimmingly and my frequency and discomfort had increased. Nothing unbearable though. It felt as if a mild case of pouchitis had settled in. I noticed a hint of blood from time to time but nothing excessive. The really good news is by the weekend things were very manageable again, between 5-7 bms a day.

Perhaps its coincidence but I began experimenting with an increased dosage of lomotil. Three pills four times daily. So far so good. The occasional vicodin helps too. Vicodin causes constipation in normal people in j-pouchers it just slows things down and perhaps takes the edge off the discomfort. I've not taken more than two in a 24 hour period and only use them when I'm dealing with the pouchitis but I'm going to approach my GI about requesting a refill when I run out. I understand doctors concern about abuse but for me that's not an issue and I would prefer managing with vicodin rather than flagyl, which says on the label that it has been known to cause cancer in lab animals, do not take unless you have to. Too bad North Carolina isn't a more progressive state. I hear medical marijuana works wonders.

New Record

2010-04-22T18:43:00.000-07:00

This is probably my shortest post. I simply wanted to share that today, a day free of antibiotics I had just 3 bowel movements. This has to be a new j-pouch record. Perhaps I write the book of Guinness.

Post Flagyl Update

2010-04-22T03:53:00.000-07:00

Its been nearly a weeks since I finished the flagyl cycle. I've been afraid to blog about my status this week for fear of jinxing myself. The results thus far have been great. I have only been going between 5 to 7 times a day with no discomfort whatsoever. I'm interested to see how long this keeps up. Unfortunately I have been unable to enjoy the freedom as I've been dealing with a sore throat and as of yesterday the pink eye, which my son contracted about a month ago. Gotta love daycare.

I would love for my wife to find a job here at home so that I don't have to continue missing work when my son gets sick and so someone else other than myself can contract all the childhood illnesses. Part of me wonders whether the good week for my pouch is the result of my body concentrating on fighting the other ailments. Just a theory. I'm resting today in the hope that I can recover in time to travel with my son to meet his mother and visit my family in New York. Today I am quarantining myself from him by taking him into daycare a.ka. the flu factory, where he catches everything anyway.

Pouchitis, Pouchitis, and Pouchitis

2010-04-09T17:30:00.000-07:00

Well pouchitis seems to be winning the post takedown battle. Truth be told I could probably manage better with pouchitis than colitis when it was raging. Must just be something in my system. I'm currently finishing up the second round of flagyl with lesser results than the first go round. We'll see how I fare this weekend once I'm off it. Maybe its time to reintroduce vicadin to the mix?

If it doesn't remained cleared up the doc wants to scope the pouch and get a better look. COOL! I haven't had much time lately to post more on the pouchitis and how I'm doing the past few weeks. Being a single dad during the week may be catching up with me. In another month when work slows down and Richard is a little older well begin running after work each night.

Its late and I'm tired so this was a short update. Hope its the alarm that wakes me in the morning, sometime after 5 am.

Alabama LB McClain reveals he has Crohn

2010-03-30T19:32:00.001-07:00

Alabama LB McClain reveals he has Crohn’s disease

Posted using ShareThis

Biotics

2010-03-30T18:54:00.000-07:00

What is a biotic? Biotic means relating to, produced by, or caused by living organisms (wikipedia definition).

I struggle to find a balance between the pros and antis. If I need the antibiotics to kill the living organisms, why would I take probiotics to put them right back in me?

With the latest return to pouchitis I find myself relying on the antibiotics once again. This time I cycled back to CIPRO. And just like the last two times within a day or so I was feeling normal. This can't go on forever. I hope I can reach this same feeling of normal without the medicine. The reliance on drugs was after all one of the reasons I opted for this surgery to begin with. While not too different from UC, I still prefer a life of pouchitis to a life of Ulcerative Colitis and even life with an ostomy. I just hope I can beat this.

On another note, I felt great for the Cooper River Bridge Run this past weekend. While I'm still not as fast as I once was I was pleased with my results. 52:46. This considering I may have had a total of 12 days training and only 6 months after takedown. I can't wait until I can take my son out in the jogging stroller and run a bit more often. Now I just need to determine when my next race will be.

Pouchitis Returns

2010-03-23T10:15:00.000-07:00

I lasted almost two weeks after finishing my cycle of flagyl without an incident of pouchitis. I guess I'm fortunate to know what it is that affects me and that it can be cleared up with antibiotics. However, I can't remain on antibiotics either or render them useless. I loved how infrequently and normal I felt while on the antibiotics and shortly thereafter. Until my GI suspected pouchitis at our last visit I just thought it was taking me a long time to adapt to the pouch. While I still prefer pouchitis to UC, I'd love to be rid of this feeling for an extended period of time. I placed a phone call to my doctor this morning explaining the situation and hoping the can call in another round of antibiotics, particularly with a weekend in Charleston planned. I'm still waiting to hear back.

Running Jones

2010-03-16T19:14:00.000-07:00

I ran my first 5k in years this past weekend. I was very disappointed but given a limited training schedule for many reasons and other considerations I guess I must be pleased. My wife was quick to remind me that I'm no longer the same person I once was and missing certain parts. As long as I continue to improve I'll be happy. But when you go from running 6 minute miles to 8 minute miles theres a bit of pride involved that all the excuses in the world can't repair. I felt really good afterwards and it felt good to get out. The charity that I ran for this past weekend was for colon cancer research as part of the national, "get your rear in gear" races. This weekend its a 4 miler, followed by the Cooper River Bridge 10K in Charleston next weekend. I really only get to run on weekends as I'm a single dad during the week with a 4 month old son. In a couple of months he'll be big enough for the jogging stroller and now that we're blessed with more daylight I see some after work runs this summer. In addition to the running itself I think diet and hydration are going to be even more instrumental in improving my performance.

On a side note, its been almost a week since I finished the flagyl and so far no recurrence of pouchitis. My bowel movements are down to 4 to 8 a day. I realize I may have just jinxed myself though.

The Great Flagyl Experiment

2010-03-10T19:02:00.000-08:00

Its clear to me know that it had taken me so long to get to where I want to be, not because of some natural progression but because a case of pouchitis. The Cipro worked great until I was no longer taking it. The flagyl has worked well also. I got down to my fewest bowel movements in a day, four, while taking flagyl. However, not having finished the full course as of today, I've noticed and increase in bowel movements to between 7 and 9 the past couple of days along with some soreness, which I now associate what I understand to be pouchitis. I'm a little wary that once I've finished the full course which will be tomorrow that my bowel movement frequency will spike again. God, I hope not! I'm looking forward to my first 5K in years this weekend but not expecting to run the 6 minute miles that I was running 5-6 years ago. Somewhere in the 22 minute range will be a success for my first time out in a long time and just 6 months after takedown.

On a positive side note, my son appears to be on the mend. I'm ready for him to be fully recovered and get his appetite back so that we can return to uninterrupted nights of sleep.

What a difference a few days make

2010-03-05T18:28:00.000-08:00

When I last reported, I had finished off a cycle of Cipro only to have things revert to the way they were and was headed in for an MRI. Now I can report good news on all fronts. The MRI came back and everything was fine, no abnormalities of any kind. My GI even commented he was puzzled by my surgeon's findings.

My bowel movements are down to a minimum now, only 4 times today, but in large thanks to Flagyl. I know however that I can't remain on antibiotics forever, so hopefully after this I can get to the point where I no longer need them while still feeling as normal as I do now. 4 times, that's incredible in my book, its just a little disheartening that its unassisted.

On a down note, while I seem to be feeling and doing better, my 3 1/2 month old son is not and he's contracted bronchiolitis. I stayed home from work the past two days and took him into the doctor both days. I've set up a humidifier right next to him and am permitted to administer an asthma inhaler every four hours through a chamber with a mask for an infant. I'll go into more detail with my next posting but as one might imagine, I'm exhausted and about to cra...........zzzzzzzzzzzzzzzzzzzzz

A little rain must fall

2010-02-28T19:30:00.000-08:00

I must admit to having gotten really excited as the past week and a half since I began taking the Cipro. I had been in j-pouch heaven going to the bathroom no more than 8 times a day and as little as 5. I had noticed a slight difference after finishing the antibiotic cycle but still kept my BM's within the 6-8 daily range. Today was going just fine until this evening when the flood gates opened again and my bum was worn raw. Hopefully this is just a one time thing. To be on the safe side I will discuss the progress and setback with my GI. I hope he actually is the one to call me since I had my MRI to examine my pancreas on Thursday. I'd love to get a "oh, everything looks fine, there's nothing to worry about" but admit to feeling a bit like George Kastanza when he thought a blemish might be a sign of cancer. I'm sure everything is fine but would prefer to be told right away, the longer I have to wait for a response the more uncomfortable I feel.

On another note, I am feeling really great now that I'm running again without cramps, bleeding, or urgency. I had all but given up on running the past several years but am really excited about getting back into it. I've already registered for 3 races in March. I don't expect to be anywhere near my old times of a several years ago but hope to go out and just have fun. I've got a 5K coming up in two week, followed by a 4 miler a week later, and then the following weekend I'm headed to Charleston for the Cooper River Bridge 10K. This is all leading up to the half marathon I plan on running in Vegas while raising money for the Crohn's and Colitis Foundation.

Feeling Better

2010-02-21T19:37:00.000-08:00

The cold is history and I was able to get a run in each of the past two days, unfortunately there is only a few weeks until I'm scheduled to run a 5K and about a month till the 10K. Hopefully the weather is as nice next weekend as it was this weekend. I've already dusted off the jogging stroller in anticipation that my son and I will make an evening run after work a regular occurrence.

The upper respiratory infection may have been a blessing in disguise. Since I've begun taking the CIPRO, my bowel movements are down from 12-15 to 6-8 a day. I'm sleeping through the night and fortunately so is my son. It appears I may have had a mild form of pouchitis after all. And if things can remain this way I would be ecstatic. Thursday is MRI day as we get our first look at my pancreas to make sure everything is o.k. after my surgeon commented after my first surgery that my pancreas felt harder than normal.

First Visit with the GI

2010-02-15T19:12:00.000-08:00

Today was a busy day at the doctors offices today. It started with my son going in for a visit and getting the first round of the PCV7 vaccine. Because I had ulcerative colitis, which is an auto-immune disease my wife and I have decided to a modified immunization schedule and not overload his immune system by doing all the vaccines at once. For example I have no idea why they give the Hep-B vaccine so early. He did remarkably well and slept once we were back in the car through my next appointment with my primary care physician, who I was seeing to treat my sore throat and cough, which has lasted two weeks. My son was still sleeping when my mother and law came to watch him so I did not have to drag him out to my gastroenterologist visit.

This was the first visit post j-pouch surgery and its with a new doctor, who oversaw the clinical trial for abatacept (orencia) that I participated in prior to j-pouch surgery. I wanted to make the change because unlike my previous GI, Dr. Hanson wanted to make me aware of the surgical option as a solution. He also attempted to diagnose my symptoms rather than just throwing drugs at them. I was glad I saw him because the antibiotic I had been prescribed my my primary care physician apparently would have wrecked havoc on my digestive tract. He also felt that I was still going to the bathroom to frequently 5 months post takedown and wrote me a prescription for Cipro to possibly kill two birds with one stone. I can only say that we'll see. Dr. Hanson did already confirm what I already found out, that cold medicine is definitely not for j-pouchers. The main reason for the follow up was to schedule an MRI to examine my pancreas after my surgeon commented after step 1 that my pancreas was a little harder than normal and it was something we would need to keep an eye on. So next week I'll spend some time in a coffin to get a closer look at things.

Well, the kid is in bed now so I should be too.

I hate colds

2010-02-04T16:50:00.000-08:00

I called in sick today. I will concede that this isn't the worst cold I have ever had and my nose isn't raw, yet. Nonetheless colds are miserable things and what makes this even more miserable is the fact that I desperately do not want to give it to my son. Yet I am his only caretaker until mom gets home tomorrow night.

I've noticed some thing with my first post pouch illness. Its either the hot tea, which I'm drinking enormous amounts of or the nyquil that is keeping me from having normal bowel movements. At first this morning I thought it was just the fact that I had chicken soup last night. Normally I try to stay away from soups post pouch because liquid in means liquid out. I did not have any soup today, which means its either the small amounts of caffeine in the tea add up in large numbers or there's something in the nyquil that keeps my poo from forming. If you're reading this blog already then you aren't turned off by talks of bowel movements, guts, or other digestive discussions.

I also visited the jpouch.org forums last night and think I found the answer to what was causing my pain and believe I may have had a fissure. Perhaps the illness and the ensuing liquid bowel movements are just what the doctor ordered to give my bottom a rest.

Under the weather

2010-02-03T17:12:00.000-08:00

My son is keeping me busy these days, not much time for myself of the blog. I started feeling under the weather yesterday and it feels like a big time cold. This is the first time in years that I've gotten sick in the old fashion sense, runny nose, aches, congestion, etc. I'm not sure whether my general malaise was related but I went to the bathroom just once the entire day at work. So, while I feel like crud, at least my bum got a rest.

The pain and discomfort associated with my pouch continues to change. Lately it feels almost like I have a cut on my sphincter that gets agitated with each bowel movement. For a while it was quite painful. I contacted my surgeon for a refill of the vicadin, which I honestly use quite sparingly. Thirty tablets will last me a month and half. Nonetheless I was reminded that I needed to be weened from the drug. I'm hoping by the time I'm weened from the drug that I will have attained a degree of normalcy with my pouch and reduction in the number of bowel movements. The thought has crossed my mind if I just exchanged one kind of discomfort for another with the surgery. Still, I maintain that the surgery was the best decision given the severity of my flares and dependency on potentially damaging drugs.

As I write, my in-laws are here helping with the baby. I do not want to get him sick and pass the crud back and forth. I'm debating right now on whether to go to work tomorrow or get some rest after dropping my son off at daycare. I'll make the call in the morning.

Latest Updates

2010-01-24T18:40:00.000-08:00

I realize its been a few weeks since my last post. Things have been hectic at home. My wife wen back to work last week. My wife's career as a business consultant has her out of town Monday through Friday. That means its just me and my two month old son during the work week. I am just over four months post takedown and still not where I want to be and have concerns about how my own health will affect my son. Will he be ok when I have to put him in his crib for my trips to the bathroom? Will I be able to function at work if we are both getting up frequently during the night? What happens if something happens to me? Complicating things is the fact that I live in an apartment and have a dog. How will my two month old son handle getting strapped to my chest and walking with the dog when its cold and or raining?

My wife and I were fortunate to be blessed with a wonderful child who is easy going, happy, and only seems to fuss when he wants to eat or needs to be changed. I am thus able to put him down for a few minutes when needed without worrying about neglecting him. He falls asleep on my chest while walking the dog and bundled up did not seem bothered by the chilly January mornings. My in-laws live near by and have been a big help. They insisted on taking the dog for a couple of weeks until the baby and I get our morning and evening routines down, which has made the transition a bit easier.

Unfortunately my fear about my health taking a turn for the worse became a reality this weekend. I experienced my first serious intestinal blockage this weekend. I'm not certain what the cause was but believe it was food related, in particular a dietary supplement, SALBA, that I tried with the aim of reducing the frequency of my bowel movements. I guess it worked too well. Beginning Friday evening I was experiencing moderate to severe stomach pains and no longer going to the bathroom. By Saturday morning the pain was so severe that I would drop to the floor every 10 minutes or so and writhe in a pain that brought me to tears a couple of times. In addition to the stomach pains was some minor nausea and still no bowel movements. I tried to drink plenty of fluids hoping that it would move things along and of course did had not eaten anything. When my condition had not improved for 24 hours I contacted my surgeon's office and was advised to check myself into the hospital. I wasn't keen about the idea of paying for another hospital visit but was convinced by my wife and doctor that it was the smart thing to do. As soon as I was admitted I was hooked up to an IV and flushed with fluids. Within two hours of beginning the IV drip my bowels began to move again and the pain subsided. Now, on Sunday evening the only pain is the familiar one that comes with the opening of the flood gates. I was given orders to lay off the fiber for the next few days it may be a while before I'm back to normal. I was extremely fortunate that this happened to me while my wife was at home.

Prior to this weekends intestinal blockage I had come to recognize that while I may have what I would term an occasional bad day my good days are becoming more frequent. I began P90X workouts again this week and still plan to run a 5K to benefit Colon Cancer Research in March followed by the Cooper River Bridge 10K in Charleston at the end of March, things I was not able to do when my Ulcerative Colitis was flaring. My health and quality of life continues to improve despite the minor speed bumps along the way.

Life Insurance Denied, part II

2010-01-12T02:36:00.000-08:00

When I got the initial decision to deny my request for additional life insurance I immediately appealed due to the fact that I no longer have ulcerative colitis. It seemed logical that it may result in a different outcome. After all I had significantly reduced the risk for colon cancer if not completely and could lead a much healthier lifestyle. Since my takedown surgery I have been getting back into shape. I have been able to run again, a pastime that I was robbed of by ulcerative colitis. I completed a physical last week with flying colors. My weight, heart rate, blood work, all great. Surely I must be a better risk than someone who is overweight, with poor blood pressure, or drinks or smokes. Apparently not. Yes, I am venting with this post and still a bit frustrated. I even have the mind to contact the underwriter who made the decision and request an explanation. The most upsetting part is that somewhere someone in insurance land has decided that because of ulcerative colitis the odds are against me of living a long life.

Immuno-suppressive Drugs

2010-01-03T18:33:00.000-08:00

Many UC sufferers often post questions about whether or not to pursue immuno-suppressive drug treatments such as remicade or 6mp. Unfortunately not everyone weighs the long term risks. I knew undergoing several of those treatments myself that there were various risks. I had little success with any of them. However I believe that the treatments I did undertake were sufficient to have side effects. I knew that remicade affects the pancreas in a small percentage of patients so I was not surprised when my surgeon told me and my family after the first surgery that my pancreas was a little harder than it should be and is something I would need to keep an eye on going forward.

It comes as no surprise that researchers now believe that there is a link between immuno-suppressive drugs and bladder cancer among others.

http://www.forbes.com/feeds/hscout/2009/10/29/hscout632557.html?feed=rss_forbeslife_health

For those suffering from Ulcerative Colitis and Crohn's realize that drugs are just a quick fix and not without consequences.

Medical Marijuana for UC and Crohn's?

2010-01-01T12:42:00.000-08:00

It would be great if this were the answer for UC and Crohn's sufferers. Wonder if it would help j-pouchers as well?

http://www.emaxhealth.com/1275/39/34876/marijuana-compounds-may-help-inflammatory-bowel-disease.html

The problem with the Holidays

2009-12-29T09:26:00.000-08:00

I'm sure we all have something that irritates us about the holiday season. This past weeekend I encountered something particularly troublesome for UC sufferers, ostomates, and j-pouchers and that is the state of public restrooms at the shopping malls. Perhaps its just the mall I visited, Concord Mills, just north of Charlotte, NC. The restrooms were giant cesspools of filth that made the toilets on Russian trains seem like a more appealing option. I was able to hold it during our outing only because each time I visited the malls restrooms the urge immediately subsided at the sight of them.

Happy Holidays

2009-12-24T03:50:00.000-08:00

I've met a lot of wonderful people since I started blogging about my ulcerative colitis and j-pouch surgeries earlier in the year and want to wish everyone the Happiest of Holidays.

Its been just over three months now and want to give an update on my post-takedown recovery. I'm taking VSL#3 DS (double strength) twice a day and I seem to notice a drastic improvement from the time I have not taken it. I'm also taking about 6 immodium a day. The maddening itch from the first few weeks seems to be gone. Hallelujah! Most days I'm still going about 15 times a day. I seem to make it through the majority of my work day going only a few times. In the evening things seem to pick up and I go more frequently. I have had some tremendously good days scattered throughout the recovery where I have only gone 5-7 times during the day and would love to get to that point on a regular basis. I've heard from others that 5-7 seems to be the norm but it can take on average about 6 months to get to that point. I have also found that exercise helps. In particular running and cardio workouts. Other j-pouchers report similar experiences. Routine seems to be very important as well but with a newborn, getting into a routine again doesn't seem to be even remotely possible. There are times when I wonder if it was all worth it and then I think of the UC flares and how difficult walking the dog was or having a lack of control over my bowels. While not perfect, my quality of life is certainly better with the j-pouch than with UC flares.

I hope to be able to enjoy a few libations and good food over the holidays without adverse affects. Wish me luck!

Life Insurance Denied

2009-12-11T19:04:00.000-08:00

I thought since my colon was removed I was UC free. By removing my diseased colon I removed 99.9% of the risk for colon cancer. Yet when I applied for additional life insurance coverage through a group plan at work with Standard Insurance I was denied because of my Ulcerative Colitis.

Standard Insurance company paid my short term disability for my surgeries this year. Surely they'd know the j-pouch was improving my long term outlook. Does Standard know something I don't? Really, anyone with a colon is at greater risk for colon cancer than I am now. The last time I checked no one died from having a j-pouch. While I understand its not the same thing as health insurance I don't feel its right to be completely denied. I'd even understand having to pay a higher premium. But to not even have the option to provide my family the financial support it may one day need is wrong. These types of experiences however are common for individuals who live in the United States and have the audacity to get sick.

Roller Coaster Ride

2009-12-09T18:25:00.001-08:00

I finally got the VSL#3 DS through medco about a week ago. Almost as soon as I began taking it I noticed improvement. I had even been back down to 7 bowel movements by Sunday for an entire 24 hour period. For us j-pouchers 5-7 bowel movements a day seems like bliss. When I mentioned this to a non-pouch friend of mine the other day he gasped in amazement. However, by Monday I was going almost every hour on the hour and had wiped my bottom bloody by days end. Today began much of the same way.

I tried to make a few adjustments from the start. I passed on cold cereal today and opted for eggs and toast. I returned to the consumption of metamucil wafers, which I had not eaten in some time. I also popped a vicadin. It wasn't until I took a vicadin that I felt any relief. Perhaps its in my mind but I believe there is also a correlation with exercise. On days that I'm able to get a run in or other significant workout I do much better. If I'm unable to work out then I feel terrible all the way around. On a side note, I did ab exercises for the first time in a while the other night without any pain.

I plan on making a few more adjustments tomorrow to see if I can get to feeling well on a more consistent basis.

Adapting Again

2009-12-01T19:15:00.000-08:00

As I adapt to life as a father to my newborn son I find that I have to adapt all over again to my j-pouch. My schedule and routine that I had developed over the first couple of months since takedown has been knocked out of whack.

I made progress again today in getting the number of bowel movement down to a more manageable number. Nevertheless by the end of the day my tokhes is raw and is soothed only by a warm bath and calmoseptine. Life with a j-pouch has given me the unique ability to sympathize with my son's diaper rash discomfort.

Aid was delivered today in the form of an 80 day supply of VSL#3 DS (double strength), an order of VSL #3 caplets, and a tube of calmoseptine. I tried adding the packet of VSL#3 DS to water and drinking that. While it all went down I can't say that the taste was a pleasant one. Immediately I recognized that it is something better added to juice to make it more palatable. Hopefully with the supplies and some form of normalcy beginning to arise from the ashes of my wife and I's former lives as DINCs (dual income no children) the euphoria I felt a month ago when my bowel movements were few and far between will return.

A New Addition

2009-11-25T16:35:00.000-08:00

On November 17th at 7:22 pm, my son, Richard Jacob LaGrange was born. Life has changed completely since then as my wife are on the perpetual lookout for more sleep. The schedule revolving around the baby has thrown mine out of kilter but I've learned to roll with the punches. Without the j-pouch surgery I'm certain I would not have been able to keep up. The itch is long gone and it doesn't seem like it will reappear any time soon. But burn is something that I really haven't had to deal with at all. Recovery, as I was reminded recently is not something that happens overnight but is a constant cycle with a couple of steps forward followed by a step back. Probiotics seem to help. I'm in the process of getting VSL-3 DS filled under my prescription drug benefit.

Updates in the immediate future will probably come less frequently as the new chapter of my life with a baby begins. But as soon as routine is established and the energy found I will share my progress.

Even Keel

2009-11-05T19:23:00.001-08:00

I posted perhaps prematurely about the incredible progress I had been making in my recovery after takedown. A week ago I was on cloud nine and having no more than 8 bowel movements a day. The last couple of days the magic number was above ten again and today around 15. Unlike the first couple of weeks I've learned how to manage these days and recognize better the ups and downs. I also have a better perspective and recognize even on down days with the j-pouch its better than good days with UC. I'm a little uncomfortable and my bum a little sore but nothing like the gut wrenching pain of UC that kept me from even eating towards the end. Its been just 7 weeks since my takedown and know that I will continue to improve with time. In the meantime I've been too distracted with the upcoming birth of my son and tending to my wife that I can not find time to worry about myself.

Our Scars

2009-10-28T10:37:00.000-07:00

This was an article that appeared in the New York Times this summer, at a time when I was just recovering from step one of j-pouch surgery. The author, himself a fellow j-poucher, provides a nice perspective for us to view our scars.

http://www.nytimes.com/2009/07/21/health/21case.html

J-Pouch Bliss

2009-10-27T19:28:00.001-07:00

Never in my wildest dreams did I think I would achieve the level of success with my j-pouch that I had the past couple of days. My surgeon told me at the very beginning that most j-pouchers have on average between 6 to 8 bowel movements a day. I was o.k. with that too, which is why I opted for the surgery. But five? I had no idea life with a j-pouch could be so good. I felt normal for the first time in years. It took no effort at all to go six hours without a bowel movement.

The only regret I have is that I wasn't able to use it to get some incredible workouts in. I wasn't able to get the workouts in though because my j-pouch was allowing me to work all the overtime I wanted. With a baby on the way any day now the overtime pay takes precedence. I was even able to sleep straight through the night, something I have not been able to do for years and something I understand I will not be able to do for years to come soon. I'll enjoy it while I can.

Today I felt as if I was going fairly frequently only to realize at days end that the bowel movement tally is 8. WOW! What a difference a week makes. I wish every sufferer of UC was told by their gastroenterologist about the j-pouch option. The truth is, I'm living proof you don't have to suffer from Ulcerative Colitis.

Real Progress

2009-10-22T15:12:00.001-07:00

Ever since Saturday of this past week I have begun to see some real progress. I've gotten had as few as seven bowel movements in a day and no more than 10 over the past several days. Whether its coincidence or not, the marked improvement coincided with my beginning to take probiotics. Though I recognize it could be simply that 5 weeks post surgery my pouch is starting to get broken in.

I had a follow up today with my surgeon for a minor little infection around one of my incisions. During the meeting I spoke about the progress I had made and he confirmed what I'm beginning to discover. Life with a j-pouch does require a delicate balancing act and care for our bodies and diet than the average person. I've noticed that if my stool is loose my number of bowel movements increases along with the existence of the maddening itch. However if I add too much fiber to my diet and my stool becomes too well formed then I find I strain too much, which leads to hemorrhoids and other discomfort. This is the balancing act I speak of. I guess over time you begin to adapt to your new body and it ceases to become such an effort.

I can say that I haven't really felt this well in years and am so glad that I opted for the surgery. When my UC was raging I could have 7 bowel movements or urges just before breakfast and with UC they were uncontrollable. My quality life is a hundred times better with the j-pouch than trying to battle UC into remission with every drug known to man.

Still Adapting...

2009-10-18T04:47:00.000-07:00

Things haven't gotten as bad as they were on Tuesday but at the same time, they haven't exactly been great. I came to the discovery that straining during my bowel movements with the j-pouch has led to hemorrhoids. Not a lot of fun. I picked up a steroidal cream prescribed by my surgeon that seems to be helping somewhat with the itching and burning down under. I've also begun taking probiotics as j-pouchers swear by them. VSL-3 was the first of my orders to arrive. I am making a more concerted effort to hold it until I can hold it no more for two reasons. One, to reduce the number of bowel movements and subsequently the wiping and rawness downstairs. Two, to try to expand the pouch so that at some point holding it for a several hours will no longer be a major accomplishment. Yesterday, I made some real progress and had only ten bowel movements over a twenty four hour period and that included dinner and beers at the German Restaurant for Oktoberfest. Now I know I've jinxed myself in even mentioning the progress made yesterday so I am bracing myself for the worst today and hoping it doesn't come.

A giant step backwards

2009-10-13T17:14:00.000-07:00

Well, what looked like progress yesterday turned out to be a calm before the storm as I took several steps backwards in my recovery today. I got about 3 hours sleep during the night and wound up calling into work this morning when the maddening itch and overall soreness would not go away. Its a good thing too because I went from having about 12-15 bowel movement to somewhere close to 25 today. As a result my derriere looks like the target logo. I called my surgeon and got a refill for pain meds as well as a steroid cream for the raw area in the hope it helps. I took a couple of baths just to soak my bum and after checking out the j-pouch forums ordered the probiotic "culturelle" because a few people swear by it. I'll try anything at this point. I had hoped by now things would have regulated themselves but it looks like it will take quite a bit of time (sigh....). Lets hope tomorrow is better.

Returning to Work

2009-10-12T20:00:00.000-07:00

Today was my first day back at work and all things considered I think it went well. Of course I walked right into one of the busiest times of the year so I got thrown right back into the fire. The adaptation to the j-pouch is still not advancing as quickly as I'd like but its been only 4 weeks. I'm still going between 10 and 15 times a day. Nights are the worst. I find that I may go only 6-8 times through the day but by sundown things begin to worsen. Its kind of like when you drink too much and that first time you go pee is the one that breaks the seal you go every five minutes for the rest of the night, only with pain and irritation. I may be progressing in that I've got more control during the day. Work certainly doesn't seem to be affected quite the way it was by UC and the ostomy. However, by the end of the day my end is done. I'm still lathering my bum in calmoseptine and taking two pain pills before bed each night.

This past weekend my wife and I had two baby showers for our son, which meant a cookout with lots of food and drink and I was remarkably able to manage without too much difficulty, so that was a positive sign as well. I know I will never get back to where I was before UC but I'll never have to worry about the sleepless nights, bleeding, and pain that I had to endure with UC. I also know that where I am with the j-pouch will get better over time.

More to come...

The Man Who Couldn't Eat

2009-10-08T00:16:00.001-07:00

The Man Who Couldn't Eat

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Famous People with Crohn's or Colitis

2009-09-30T22:47:00.000-07:00

I found this site searching the web and found it interesting. Hopefully you will as well.

Famous people with crohn's or colitis.

Scrubs - Musical Poop Song

2009-09-30T22:02:00.001-07:00

I found this on another UC blog and laughed so hard I wanted to share it with everyone here.

Post Op Follow Up

2009-09-30T20:50:00.000-07:00

I had my two week follow up with my surgeon today. Everything went smoothly as expected. The dime sized hole in my abdominal wall where my stoma once was has almost closed. The days of poo flowing freely from my stoma like soft serve ice cream now seems like a distant memory in just a few short weeks. I was given the o.k. to reintroduce fiber (veggies) and immodium into my system. Hopefully the addition of fiber and immodium things will slow the flow and get my bowel movements to a more manageable number. If it does then my bottom will be very grateful. The itching I spoke of in previous posts seems to have abated and there are no signs of infection so the recovery seems to be getting better with each passing day.

I was reminded by my doctor today that though the j-pouch is a cure for Ulcerative Colitis, the fact that I had ulcerative colitis may predispose me to other auto-immune related ailments that will require regular follow ups with my Gastroenterologist. I was already told after step one that my pancreas was a little harder than normal and is something that I will need to keep tabs on over the years.

I am a bit eager to begin my UC free life in earnest as soon as possible. I'm ready to get back to work in another week with no more interruptions. I want to get back to the active lifestyle to which I had become accustomed. And most importantly the freedom from the colitis symptoms that sapped me of my life could not come at a better time with my wife and I expecting our first child, a baby boy in a month and a half.

Restroom Access

2009-09-29T21:23:00.000-07:00

I just read another blog that touched upon something that concerns all IBD, Crohn's, and Colitis sufferers, restroom access. I was concerned about where the nearest bathroom was and its cleanliness when I suffered from Ulcerative Colitis. After the first step of the j-pouch surgery I was just as concerned if not more so, while living with an ostomy bag. Now that I've had the takedown surgery and am a full fledged j-poucher that same concern still exists. I don't believe that the concern will disappear even once things have normalized as j-pouchers still go more frequently than your average bear.

The first thing I tend to do when venturing out is to get an idea of where the bathrooms will be and what I'll be dealing with. Tailgating and street festivals tend to present problems as port-a-johns are my worst nightmare. This line of thinking led me to post the poll question on whether the cleanliness of a store's bathrooms affects your decision on where to shop. I ask this question because for me it does. My example is Target vs. Walmart. Where I live the restrooms at Target are always very clean and accessible, while Walmart's restrooms often resemble those of an interstate truck stop. As a result I do not remember the last time I shopped at Walmart.

Not too long ago I learned about a restroom access card that I carry with me, should I ever find myself in a pinch and want to avoid an explanation as to why I urgently need to use the restroom. It provides a certain sense of security when out. Ally's law has been passed in a few states and legislation is pending in several others, which provides restroom access to digestive disease sufferers, where its otherwise not available. If only my state were progressive enough to pass such legislation.

New Plumbing

2009-09-28T20:50:00.000-07:00

I want to think I'm making progress. I certainly make a mental note of those times when I got 4 or 5 hours without having to go to the bathroom in the hope that I can string a couple of those moments together in a single day. I've been managing the maddening itch through the post-surgery pain medicine provided and plan on hitting the surgeon up for a refill during my follow up on Wednesday. Other plans on Wednesday include getting the ok from the surgeon to introduce fiber back into my diet as well as immodium. I've been told that the stitch in my incision where the stoma was will come out on Wednesday and shortly after that the hole should close on its own. Swimming pools, baths, and jacuzzis aren't far behind then.

I recognize every individual is different but got a little discouraged last night when reading a post on a j-pouch.org discussion board about an individual who had their takedown just a couple of days ahead of me and is already approaching "normal". Like anything else I've used it as motivation to try harder to break this j-pouch in. I am so ready for a run and even possibly a 5k soon. Though at this time in the year the 5k may have to wait till next running season.

Madness

2009-09-23T22:27:00.000-07:00

I recognize that my new internal plumbing can't be broken in overnight. As I alluded to in an earlier post I am by no means skimping on calmoseptine or preparation h wipes. Nonetheless, I have begun experiencing an itch that can only be described as utter madness. If not for the itch, I'm almost positive I'd be making more progress. I sure hope this goes away soon.

Testing my tush

2009-09-21T05:01:00.001-07:00

It has not yet been a week since my takedown surgery and I have only been out of the hospital not yet three days. So I must practice patience with something as major as j-pouch surgery. Nonetheless my tush is meeting its limits. I'm still going to the bathroom fairly frequently but have more control than my UC days. The problem here is that each wipe of my derriere causes a degree of pain. I've been using a wash bottle and barrier ointment on my bottom while home now and will continue over the next couple of weeks in the hope that this gets better. I have been fortunate though thus far in that the surgery was a success and I have had no infections or complications to this point. I've been told that it can take weeks to months to really get to normal with the j-pouch. I can't wait.

It stinks again

2009-09-20T04:22:00.000-07:00

No longer able to reap the benefits of deodorizing drops an unpleasant odor has returned to my poo while I have returning to pooping like normal people. I have now been out of the hospital two days and it has not yet been a week since my reversal surgery.

The surgery was fortunately a success and took all of about thirty minutes. I find quite amazing the fact that my surgeon was able to cut around my stoma, lift my intestines out and suture them back together before putting them back in place and then stitch me up in about half an hour. It takes the average person longer to assemble IKEA furniture.

I am now facing the task of getting used to my new plumbing while keeping my bum intact. Unfortunately its not as easy as just flipping a switch and the j-pouch will take some time to be broken in just like a pair of shoes or baseball glove. Though I have not had any accidents beyond some blood leakage the first night, I am still going to bed in depends until I've fully adapted. Even after I have reached a degree of normalcy I will never be fully normal but hope to be much much better than I was when suffering from ulcerative colitis. The weeks prior to surgery I had already begun to be active again and was doing so without pain or discomfort. If I can have that and without an ostomy bag I will be happy.

Right now there is a dime sized hole in my abdomen where the stoma once was that will eventually close on its own. Going to the bathroom I'm using the perineal wash bottle given to me in the hospital and plenty of barrier ointment and while still sore this is keeping my bottom relatively intact. I'm on a low residue diet for the next couple of weeks after which I can begin introducing more fiber into my diet and immodium as well to control the frequency of my bowel movements. But burn, something that j-pouchers talk about frequently is something I've experienced just two or three times so far. I believe it has more to do with the liquid and acidic output and will go away with time.

Overall I'm pleased. I know from the first surgery that nothing happens overnight so I'm ready to take this recovery one step at a time. I do look forward to the time though that my digestive system or what remains of it becomes something I take for granted again and no longer consumes me so that I may direct my energies elsewhere.