Weathering another storm

With my last update I had started back running when I was set back by an achilles tendonitis injury. So with practically no training I was able to complete the Cooper River Bridge Run 10K in April at what they tell me is a respectable 9 minute mile pace. Still a tough pill to swallow when I was used to running at a 6 minute mile pace. Age and life I guess runs just a bit faster and catches up with us all. Things haven't gotten much easier, I confirmed in February that I have yet another parastomal hernia, a possibility my surgeon refused to entertain after the surgery when I knew something was wrong. I kept getting "Do you know how much mesh we put inside of you". Not much a relief when the swelling and discomfort is back. For the most part I have been able to battle through it. As a single father during the week maintaing and exercise regimen, which necessitates waking up at 4 in the morning I tend to pass out at my Toddler's bedside each evening before transitioning myself to my bed. A few weeks ago life with an ostomy took a new twist when on a Friday evening blood started pouring out of the inside of my stoma. I knew it wasn't a knick and there was quite a bit of blood, so much so that two bags were filled with it. A glass of scotch later and it had subsided. Nonetheless I was quite alarmed and called the surgeon first thing the next Monday. They shrugged it off as a once off pointing to the fact that the intestine is something quite vascular and will bleed from time to time. I did the same...until last Tuesday when at work I started bleeding again. With the next call to my surgeon I was advised to contact my GI and get scoped. My first ileoscopy was this morning, which I insisted upon being sedated for. When I woke to some signifcant abdominal pain I was informed that they found an ulcer on my ileum about 20 centimeters in. The first few thoughts of course were Crohn's, which I'm going to try and resist confirming until the results of the biopsy are in. But then I thought I went to the Cleveland Clinic, a world leader to try and determine whether I had Crohn's before going to a permanent ostomy and was told I did not, now yet another ulcer. I still have to get this hernia and prolapse fixed again so maybe I can spare 20 more centimeters of small intestine and they can remove the ulcer while they are at it. More to come...

I realize its been a while between posts

The last time I wrote was over a month ago. At that time I had been dealing with some pain along my incision line, which had just subsided but was still in some discomfort. I also was dealing with a wound that would not close and unrelated to the hernia repair an infected cyst on my back. Yet I was ready to return back to work. That was now over a month ago. I've taken things a bit easier this time around and haven't rushed into the P90X workouts or run 3 miles after having a wound vac removed. I have started walking several miles quite briskly on my treadmill at the steepest incline to get a good workout in without moving things to much. I've also started off with some modified push-up so as to take it easy on my mid-section. I'm waiting for a green light from Dr. Mantyh when I see him on February 5th to pick up my exercise regimen and discuss what limitations if any that I might have. Generally I am satisfied with the outcome. I no longer have the level of discomfort when eating that I had prior to the surgery. Nor do I have the extreme swelling either. There is still a little unevenness and swelling around my stoma from time to time, generally after a meal but I guess after 4 surgeries over the past 3 years I can't be too particular. My midline incision scar from the prior surgeries was tidied up, which pleased me. However there is still a small cavity in the same area where it was previously discovered that I had a diastasis recti. Dr. Mantyh was quick to dismiss any idea of a recurring hernia so early after surgery given all the mesh they inserted in my abdomen. The immediate improvement I saw in ostomy output disappeared a week after surgery, which I mentioned previously and has never really returned. I'd say I probably go to the bathroom at least 12 times or more a day to empty my bag, which certainly isn't ideal but the goal was to be pain and drug free and that I feel I have finally accomplished. My mother-in-law has gone home and while I appreciated her help its nice for everyone to get back into their routine. She was a great help and helped out even further when I had to leave for a business conference in Orlando last week as she stayed with her grandson for the week. Traveling with the ostomy is always an adventure. I had my emergency kit in my cary-on searched. I was also asked at security about my stealth belt, which showed up on the x-ray machine and had my appliance checked for explosives. The good news for me is that with my wife's platinum status I was able to get upgraded to first glass going and coming, which meant easy access to the first class bathroom on the plan and free scotch. Over the holidays I decided to give scotch another try, understanding that it is an acquired taste. What do you know after 39 years I acquired the taste. A glass of scotch and a cigar on the weekend has turned into a real treat. Without the ostomy I would have never been able to enjoy the occasional glass of scotch. I'm getting back into the swing of things at work and hope to really perform at a top level this year at my job if I can stay out of the hospital. To my surprise I had a very favorable review for the year despite missing nearly a third of the year due to multiple surgeries. There are plenty of thoughts and musings about life with an ostomy that I have had over the past month and a half that I have been meaning to share but haven't. I must admit to often being too busy or having too much going on. I hope to do better as the year progresses and this post is a step in that direction.

Feeling Better

As the year comes to a close and I look back I realize its been quite a year. Unfortunately I spent over a third of it at home recovering from surgeries. Hopefully the upcoming year will keep me out of hospitals for a while. I realize its been some weeks since my first post surgical post. A lot of that had to do early in the recovery with me not really wanting to sit up right at a computer for the added pressure it put on my abdomen. My excuse for lack of contributions the last couple of weeks was simply laziness. I appear to be on the mend and ready to return to work next Monday. Just like all my other surgeries I ran into a problem with the my incision opening up again. I was particularly concerned about infection as I haven't been able to get through a surgery without one ... until now. I did have a scare a week ago as I had a rather intense pain at the top of my incision, which felt like a sharp shooting pain that was rather warm to the touch accompanied by nausea. The pain was rather constant for about 4 days before slowly subsiding. Naturally I wanted to make sure nothing was wrong and scheduled an appointment with my surgeon immediately after the Thanksgiving holiday. Unfortunately or fortunately by the time I got in to see him the pain had let up. I likened the scenario much to a car that is making a weird sound but then seems to be running fine once you get it into the mechanic. That same pain still comes and goes. My surgeon reminded me of the extent of the surgery and the layers of mesh covering my entire abdomen as well as the fact the sutures sewn into my muscles are slow dissolving and can take 6-8 months to dissolve. That of course explains the general soreness that still persists. I did express concern in my first post surgical post and to my surgeon on my follow up about the fact that my output, which seemingly normalized after surgery had increased in frequency while becoming more liquid. I also expressed concern over the abdominal swelling, which I still experience after eating, nearly 2 months after surgery. I was told I needed to allow my body time to heal and that some swelling is still normal. Still my overall condition has improved and its not nearly as unbearable as it was before and I am able to eat more often, though I try to keep meals small. I had gotten as light as 145 pounds after surgery and up to 155 as of yesterday with room to grow I suppose as I am after all 6 feet tall and still a bit on the lighter side. My next follow up with my surgeon at DUKE is in February so I guess we will see how I'm doing then. Right now I believe that the output and swelling issues I'm still experiencing may be due to adhesions. I read my surgical report and was surprised to learn that 45 minutes of the surgery was spent removing adhesions and its my best guess that after surgery number four the form rather quickly. I still have my mother in law helping out by dropping off and picking up my son from daycare as heavy lifting is still forbidden. The plan is to have her here until the end of January at which point I hope to be back on my own. One last little note. It doesn't seem like I'm able to escape doctors and knives even while recovering from one surgery. This time last year it was a knife through the thumb that severed a tendon. Now I have a lipoma or cyst on my back with has grown and become quite painful. I visited urgent care yesterday morning in the hope of having it removed while still out of work but was given a round of antibiotics in the hope it would clear it up first. Friday I meet with a local surgeon to discuss removal of the mast and hope there is nothing more I have to worry about. Fun Stuff! I'm looking forward to getting back to work and into the swing of things next week. I'll hold out hope as well that things will get better in 2013.

Surgery and Recovery

Its been a couple of weeks and quite a bit has happened since my last post. Unfortunately I've been in a great deal of pain and discomfort and really have not felt up to sitting at the computer to write until now. Today marks two weeks since I underwent abdominal reconstructive surgery. This coming Monday I have my follow up with my surgeon to remove over thirty staples from my midline incision as well as the JP drain, which still two weeks out is draining about 45 ml or an ounce and a half of bright red blood daily. Two days leading up to the surgery I was quite concerned as I had contracted my son's sore throat, which had turned into a cold the day before surgery. Concerned of course I immediately called the surgeon on call to make my surgeon's office aware of the situation. With nothing in the chest and just clear nasal drip, they did not believe there was cause for alarm. To be on the safe side the day of the surgery I was to call the anesthesiologists to get their take on the situation. The day before the surgery in addition to coping with a cold I also learned that day that my surgery would not take place in the morning but instead two o'clock in the afternoon. The thought in my head at the time was great, I'd be going 3 days or so without eating, given I'd already fasted a day before the surgery. That would turn out to be a very minor concern, as once out of surgery with the significant amount of pain, food was the farthest thing from my mind. I was given the go ahead for surgery from the anesthesiologist despite my cold. Before going under an epidural was inserted, this would control the pain much better than the PCA pump and control it immediately. I was glad this was an option this time. Before I knew it I was waking up from surgery and while the pain was managed a bit better than it had been in the past something was still not right. The right side of my body felt no pain, while the left side was writhing in it. The epidural catheter was not in straight so the anesthesiologist attempted to tinker with it a couple of times to see if they could straighten it out, unfortunately the attempts wer unsuccessful and in a short matter of time the catheter was removed leaving me to fend for myself with the PCA pump. The post-surgical pain was much greater this time than in any of the previous three surgeries. I could feel the mesh and anchors that stretched across my abdomen. Even today two weeks later I can see the bruised and raised areas where the mesh anchors are causing me so much discomfort. This is the first place were plans deviated. By the following evening the doctors gave the ok to begin eating. Unlike in my previous experiences where I was started slowly with clear liquids, followed by full liquids, and following a natural progression to ease my digestive system back to work the doctors at DUKE preferred the shock and awe method, explaining that there were no limitations and I could immediately have whatever I desired. I was a bit more cautious however and limited myself to liquids for starters. With the first sip of juice I immediately became nauseous and sent the nurses scrambling for anti-nausea medicine as I braced myself with a pillow and bucket and prepared for the worst. Fortunately, the anti-nausea medicine was administered quickly and I was saved for the moment. The day after surgery, the same day I attempted to consume food and battled nausea I also attempted to get out of bed with my wife's help but could not must the strength to do so. Sunday, two days out of surgery I was finally able to get out of bed and walk to the end of the hall and back, but that was it. The pain was so much greater than anything I had experienced before. Just as with my previous surgeries, I got the feeling I was being rushed out of the hospital, whether the accelerated dietary plan or the surgeon's resident pushing to get me home almost on a daily basis. I probably would have felt more comfortable with an extra day in the hospital but Tuesday I was sent home. I was sent home with a walker too, that I have yet to use more than once, that initial day. Aside from the parastomal and ventral hernia repairs, a prolapsed stoma was also repaired. It was explained to me by my surgeon that they would simply remove "chop off" the prolapsed portion and bring new intestine through creating a new ileostomy. When I changed my appliance in the hospital I was a little startled by what I saw. First off, my stoma was not perfectly round as it had been in the past. It appeared almost as if the new stoma was simply placed on top of a stump of the old stoma. A little funky looking to say the least. When I asked the WOC nurse there at the time about it, I was told that it was nothing to worry about and it would fix itself over time. The second point of concern is that it did not appear to be protruding nearly as much as one would expect. In everything I've read and learned about stomas I was expecting it to protrude by at least half an inch but it looked like a little nub of a stoma that could easily be covered up by some stoma powder and a barrier ring. The stitches at the base of the stoma visibly protruded and it appeared as if the skin around my stoma was being eaten away. After a few appliances changes and several days at home saw the skin condition around the base of my stoma worsen and put in a call to my surgeon's office and in turn DUKE's wound ostomy nurse, Stephanie. I explained the situation to Stephanie and even emailed her several pictures and she diagnosed the condition as "mucocutaneous separation", explaining that it was normal and while it may get worse before it gets better assured me that it would get better. Stephanie was very helpful and agreed to meet me this coming Monday at my post surgical appointment with Dr. Mantyh to change the appliance in the office and take a look at it, offering any help that she can provide. Since coming home a little over a week ago, I have done nothing but rest. Oh, I've gotten up and moved around the house to do a load of laundry, empty the dishwasher, etc. I've done my best though to make sure I do not over do it. I had a few instances post recovery where I've had to splint with pillow braced against my abdomen while coughing, which was extremely painful as one may imagine. Beyond that I have made certain that I do not jeopardize my recovery this time around. That being said I still feel as if something is just not quite right. Perhaps what I'm experiencing is still post surgical pain and swelling around the repaired stoma. Nevertheless I have a sinking feeling that the parastomal hernia hasn't been fully repaired. I still notice a bit more unevenness on that side of my abdomen and maybe its because of the more extensive Sugarbaker method used to repair the hernia. I've also felt some discomfort similar to what I felt leading up to the surgery but maybe its just post-surgical pain that I'm experiencing. There also appears to be some minor swelling when eating, though nothing like before. Finally my output was vastly improved the first few days post surgery, no more watery output but once the familiar symptoms set in the quality of my ileostomy output seemed to decline while the frequency increased. I will be certain to mention this to Dr. Mantyh as well on Monday. Two weeks out and I'm still in a great deal of pain and discomfort. I'm unable to sleep through the night or sleep on my side. Getting up and laying down is something I do still very gingerly. The first major drawback of having an out of town surgeon is when it comes to pain medication and pain management. I was sent home with a prescription for 5 mg of Oxycodone, which works much better than Hydrocodone, however oxycodone can not be called into the pharmacy but only filled with a written prescription. Realizing I was running dangerously low I called my surgeon's nurse on Monday the 29th. When we spoke yesterday I was told that the prescription for Oxycodone was more than likely mailed on the 30th. Unable to go without I had the doctor's office call in a prescription for hydrocodone in case I did not receive the prescription soon enough. Its a good thing I did because I picked up the Hydrocodone yesterday and after today's mail was delivered on Friday November 2nd I still have not received the prescription for the Oxycodone. If I don't receive it by tomorrow I'll be able to pick it up in person when I see the doctor on Monday. On the bright side my midline incision, which became quite ghastly after the infection and wound vac experience early in the year has been cleaned up. I also no longer have Gonzo's nose protruding from the right side of my abdomen. I am also eating three meals a day again, although my weight is still down at 145 and while recovering finding it difficult to add it back on because my appetite has shrunk with all the swelling and discomfort in my abdomen. The future with my ileostomy looks promising and hope to have a clearer picture on the direction of my recovery after meeting with Dr. Mantyh again this Monday.

Abdominal Reconstruction

Abdominal Reconstruction is just two days away and I realize its been nearly a month since my last blog post. I've really just been too busy and too fatigued as of late. I hinted in my recent posts the discomfort associated with eating when your abdomen has more holes than the Titanic, well when I weighed in for my pre-surgical appointments I weighed in at a new low 152. I may break the 150 mark by the time all is said and done. Clear liquids the day before surgery, maybe an ice chip after surgery, and some broth the day following surgery. Yippee! The fact that I'm look forward to the surgery and the accompanying pain and misery that is recovery from such a surgery to me seems a bit sadistic. However, dealing with the prolapse, parastomal hernia, and diastasis recti hasn't been pleasant either and looking at the possibility of being able to eat a meal without feeling like one of the unlucky crew members in the Ridley Scott Alien movies. While I'm no where near as depressed as I was a couple of months ago, I've had my moments. Four surgeries in three years and a plastic surgeon that asks you how attached you are to your belly button aren't the most uplifting experiences. I know that this is only temporary and I will overcome this hurdle. I remember how painful the previous surgeries were and with the added mesh being used and figuring this surgery will be all the more painful. I did like that Dr. Mantyh and the anesthesia group brought up the epidural option, which means they can block the pain immediately after coming out of surgery and there isn't that period of intense pain until the morphine drip gets hooked up and you have the wherewithal to push the button. I will not however be doing any tough mudders in the future as I had hoped. I met with my surgeons and made the pre-surgical rounds on Tuesday and Wednesday of last week at DUKE. Dr. Erdmann, the plastic surgeon involved with my repair said I should stick to cardio for my exercise regimen but if I felt the need to do some weight work, he would strongly suggest exercises that strain the abdominal muscles. I can rule out a large part of the P90X DVDs now. When I told my wife that cardio was still in the cards, her response was "The doctor was probably referring to normal levels not 15 mile runs" and she's intent on getting clarification on what I can and can not do when fully recovered directly from the surgeon's mouth this weekend. The office visits last week were a long ordeal and totally drained me. Admittedly two hours is not all that far of a drive, particularly for a first rate medical center like DUKE. However, doing so in back to back days, while still playing the role of single dad to my nearly three year old son sapped nearly ounce of energy I had. Tuesday I did not get home until seven in the evening. My 11:15 appointment with Dr. Mantyh was pushed back to nearly 2 o'clock, while my pre-surgical rounds did not end until 4:30. Fortunately, my mother-in-law was available and willing to pick my son up from daycare when I told her I would not be home in time. I really have great in-laws, even though like all parents you're ready for them to leave after a while when you want to do things your way, but after this surgery I won't be able to handle my son on my own, so they are moving in for the foreseeable future to help out. It will be a good exercise for me to practice my buddhism and cease to have opinions and in the very least keep them to myself and be thankful for their help and willingness to give up their time to help out me and their grandson. I'll post more after the surgery in particular, whether there was a parastomal hernia or not. The CT Scan showed a diastasis recti as well as a prolapsed stoma but now parastomal hernia. My symptoms and physical appearance are all indicative of a parastomal hernia. Both Dr. Mantyh and his nurse, Carmen also added that the prolapsed stoma typically does not occur without a hernia. I was told that one difficulty in seeing the parastomal hernia on the CT Scan, may have to do with how skinny I am. Apparently fat provides a nice visible pocket for the hernia, of which I have none. The diastasis recti and prolapse are definite repair jobs but the hernia remains a mystery although we're proceeding as if its their. So I am needless to say just a bit curious.

Swiss Cheese

I wanted to update my previous post. Since getting the results back from my CT Scan last week I've been just a little confused. First of all what does this mean for the surgery I had planned on and why exactly has it gotten to the point that I can barely eat anything without being incredibly uncomfortable? As it turns out I don't quite know how to read English when it comes to reading a doctors interpretation of a CT Scan. Apparently, the prolapsed stoma visible on the CT Scan is indicative of a hernia. In addition to the parastomal hernia I also have diastasis recti of about 6 cm. In short, my abdomen is swiss cheese and full of holes. My upcoming surgery is going to be reconstructive abdominal surgery. Having been through this a few times before I have a feeling that this is going to be more painful than any of the others coming out of it. While I'm looking forward to getting repaired I'm not looking forward to the pain and recovery. That being said the surgery can not come soon enough as I can barely eat without my abdomen swelling up and becoming uncomfortable. As you might imagine, the discomfort and constant hunger have made me very irritable. I think my family is as anxious as I am to get this period behind us and have me repaired. I will add that for so many reasons I am glad I chose DUKE. I was speaking with a retired chief surgeon today, who when I explained what was going on with me and why I made the decision I did, affirmed that I made the right choice. Let's hope so.

Diastasis Recti

Last night I got the results from last weeks CT Scan at DUKE back. It turns out there doesn't appear to be a parastomal hernia after all. The diagnosis was "diastasis recti", which is a separation of the abdominus rectus muscles creating symptoms and a sensation very similar to a hernia. The difference is that the muscle separation isn't a hole as much as it is a separation. Nonetheless it has caused and continues to cause considerable discomfort and my insides push out on my abdominal wall every time I eat. The condition has gotten progressively worse and I'm skipping meals left and right because the discomfort just isn't worth it. I'm losing significant weight as a result. I just hope to get things fixed sooner rather than later. I've had to cut out the weight lifting and strenuous exercise for obvious reasons. Running I'm just now getting close to returning to after my trail running injury but am relegated to walking on the treadmill. The lack of exercise is killing me. I'm just telling myself that once I go through the surgery and give myself enough time to fully recover I will be as good as new. I am certainly glad I chose to go with DUKE for my surgery. Yes, I still feel like a number or lab rat for the Medical Students at DUKE but at I have more confidence that they will what needs to be done and do it well. The hernia specialist here in Charlotte was content to use some CT Scans from the local hospital done in June, which it turns out were done differently and even indicated that he did not really need the CT Scan. At the same time the DUKE surgeon insisted on having a new CT Scan done at DUKE and now that I have the results I'm glad he did. Can you imagine going under and the hernia specialist cutting into you only to find there is no hernia. Dr. Henniford came across as such a schmuck on so many levels. I put in a call today to DUKE because now my concerns are several. First, whether the surgical team remains the same and our pre-surgery and surgery dates are still a go. Secondly, from what I read about my condition the plastic surgeon plays the most important role in repair, so should I make another appointment to see him prior to surgery so I can ask all my questions, which I did not have when I thought the surgery was going to be done another way. This upcoming surgery is hopefully my last. I'm tired of complications, surgeries, and long recoveries which seem to have been ongoing ever since I decided to surgically rid myself of Ulcerative Colitis. Keep your fingers crossed. I will post more as I learn it. In the meantime I hope my surgeon's office returns my call before the weekend otherwise I just may go crazy wondering what's in store.

Thanks Coloplast

I've mentioned several times before what a wonderful experience I have had with coloplast and don't ever see myself using anything else. My experience isn't relegated to my love of their products but their service and in particular one WOC nurse, Rita Ward. Several weeks ago I closed my yahoo email account after a widely publicized hack of yahoo email, receiving emails from my dead father's yahoo account, and a significant increase in spam mail. I was fairly good in saving a lot of my important emails and updating most of my online profiles, however I forgot to notify coloplast and save Rita's contact information. After some well documented episodes with my two-piece system I've realized the danger that a toddler can present. At the suggestion of my wife I had been thinking of exploring other pouching system options that may be toddler proof and meaning to give Rita a call but I lost her email and phone. Low and behold just yesterday in the mail I received an envelope with a copy of an email that Rita had recently sent me and a new Brava barrier strip. This was after Rita followed up on my progress via this blog. Talk about impecable timing. I called her this afternoon and after a little phone tag, had a lovely conversation and with Rita's help will try to toddler proof my pouching system. In the meantime I failed to mention that I had also found my new barrier ring several weeks ago when I requested samples of the new Brava line of barrier rings which I found held up to anything. I used them while at the beach and after two days in the ocean in the same appliance, not only was there no leaks but it was not easy to remove the appliance at all. Brilliant! Anyway I wanted to use this blog to say thank you again to Coloplast and more importantly, Rita!

Beach Trip and Duke!

I did not realize how long it has been since my last post. As I alluded to in my post at the end of July I've been extremely busy. Work is picking up as I'm finally settling into my new role with the company. Things are going rather well there as a matter of fact and I'm not too overwhelmed yet. My son keeps me busy of course and yet I still find time to question whether I'm doing enough. He's not even three and daycare is giving me, not him, homework such as a family collage. Some assignments are easier than others but in all honesty I don't know where I'm supposed to find time to sit down with him and make a family collage. Perhaps we can ask for an extension? We had a wonderful week at North Myrtle Beach last week but by the weeks end Richie was ready to go home. We played at the beach nearly every day. We went to Pirates Voyage, which was probably my son's highlight as he was mesmerized by the show. Having him made up as pirate prior to the show did not hurt our cause either. His face lit up as the make-up artist gave our nearly three-year old a goatee, black eyes, eye patch, pirate hat, earring, and sword. The rest of the evening was filled with "Aarrgh!" and "Yo-ho-ho!". If nothing else happened that week the trip was worth it just to see our son's face that evening. The next morning a naked toddler walked out into the hall with a pirate hat and sword, shouting "I'm a Pirate!". The rest of the week, Richie saw giant alligators and turtles at Alligator Adventure, mermaids and sharks at Ripley's Aquarium, knights and kings at Medieval Times, rode the skywheel overlooking the city, and spent plenty of time with mom and dad in the water at the beach dodging waves and building sand castles. The last day at the beach was full of rain and thus some souvenir shopping, so I came back from the beach with a t-shirt and unfortunately a sore throat that turned into a miserable cold this week, which I'm just starting to get over. My stealth belt worked like a charm at the beach. I was able to sun on the beach with little notice whatsoever of my ileostomy. I was able to play in the surf nearly every day with no issues. While there are some advantages to a two piece appliance particularly when it comes to changing a wet bag, I'm beginning to think that one solution to some of my problems may be a one piece. One of my biggest issues is my toddler who writhes in my arms wrapping his leg around my midsection and kicking my bag off in a heartbeat, sometimes nicking my stoma in the process. While at the beach my bag popped off when the clasp got caught on the edge of a sliding glass door. I'm guessing those issues would be resolved quite easily with a one piece system. I went into work on Monday for just an hour or two and took the rest of the day because I felt miserable. I went through 4 boxes of kleenex that day. I found that mucinex works much better than dayquil at relieving cold and cough symptoms. Tuesday after drugging myself up with cold medicine and dropping Richie off at daycare I headed up I-85 to Durham for a surgical consultation with Dr. Mantyh at Duke. When making the decision to get the hernia examined and surgically repaired I was referred by my previous surgeon to a hernia specialist here in Charlotte. However I was just a bit concerned because not all hernia's are created equal and I wanted someone familiar with parastomal hernias. Dr. Mantyh happens to be the chief of colorectal surgery at Duke on of the top ten medical centers in the country, who does parastomal hernia repair. I thought the meeting went well. Dr. Mantyh explained that parastomal hernia repairs are what he does and in particular he recommended a modified Sugarbaker, which is a relatively new technique that shows the greatest promise in preventing recurrent parastomal hernias. He also discovered what he believed to be a ventral hernia above my midline incision but said he would hold judgement until we got a CT scan. He also explained that not all CT scans are created equal and that when looking for a hernia some pressure sometimes needs to be applied to the problem area when being imaged, which seemed logical based on my symptoms. Dr. Mantyh did say that while a key hole or re-siting of the stoma to repair the hernia could be don lapriscopically because of the complexity of the proposed method he would prefer to do the surgery open and also want to bring in a plastic surgeon as well given the scaring and my midline incision which has been such a problem area. In short I felt comfortable with the information being provided, the doctor, the thoroughness of the proposal, and of course the reputation of the hospital. My largest concern is with the distance with the center being 2 hours away. I had a follow up meeting with the hernia specialist at CMC in Charlotte the next day. Not nearly the institution that Duke is, I had my reservations going into the appointment because of the type of hernia and my concern that the surgeon does not deal with that many parastomal hernias. Other concerns were raised simply based on basic clerical errors and efficiency of the hospital or lack thereof when compared to DUKE. Dr. Henniford's resident assistant/understudy examined me first but the approach seemed cold and she seemed fumble around my stoma when trying to feel for the hernia. When Dr. Henniford came in, he came across as rather brash, asking "So what can I do for you?". I'm thinking to myself, you have to be kidding me right? I explain to him that I met already with a surgeon at DUKE and why and ask him about his experience with parastomal hernia repair. Thankfully he is up front and honest and says that he does not do many parastomal hernia repairs but shortly thereafter seems to go into some chest pounding telling me what an expert he is on the different types of mesh and the international hernia repair boards he is on, etc. He then says he can do the proposed Sugarbaker repair laproscopically, which I find odd because he previously admitted that he does not do many parastomal hernia repairs. Why can he do it lapriscopically while the colorectal surgeon that does parastomal hernia repairs prefer to do it openly? The chest pounding rubbed me the wrong way too. So I have decided to proceed with the surgery at DUKE. I've scheduled all my appointments and as it turns out the distance isn't going to be so much of a hurdle after all. The surgery date has been set as well for October 19th, a Friday, which works out great as well. So DUKE it is! The hernia has affected my lifestyle in keeping me from being as active as I would like to be and also causing me to lose significant weight because of the discomfort associated with eating. At six feet I'm currently weighing in at 164 pounds and dropping without exercise. I will share more as this next surgical adventure unfolds. Hopefully it will be my last.

Trying to fight through the gloom

I've been particularly down as I've been finding it increasing difficult to remain positive lately. Before I get to far into my rant I want to acknowledge that life while life with an ileostomy adds a layer of difficulty it was still the right choice for me. Whether it was ulcerative colitis or chronic pouchitis I still had frequent trips to the bathroom, less control, more pain, and more drugs. The ileostomy has gotten me off the drugs and rid me of the pain. I had some post-surgical complications and see my surgeon tomorrow about an apparently troublesome hernia, but those issues can be fixed. The hernia has added a little stress, in large part due to a lack of responsiveness from my surgeon and the fact that he or his nurse did not return my calls when looking for answers I had simply had to call the office to schedule an appointment. Most of the stress and complication as of late however, comes with being a single parent to a two and a half year old Monday through Friday. When my wife is home on the weekends I have no limits, however during the week its quite the opposite. I have to be cognizant of the fact that I have an extremely active 2 year old boy. I've tried taking my son to the playground by our house in the evening after school only to have to deal with a tantrum of epic proportions when we have to leave so daddy can go to the bathroom. I've been left at the mall after clothes shopping for his dance recital with my son, a stroller, bags, and then the need to empty my bag (a two handed job) to have my son dart from underneath the stall TWICE. Fortunately nothing happened to him but I got some looks from parents...if they only knew. As a result of these experiences I have limited our trips to when mom is home or help is around, which doesn't seem fair to him and upsets me. Last Tuesday we had a thunderstorm that knocked out power from about 5 in the evening until midnight. Fortunately I had not eaten much that evening and felt I could take him to Chic-Fil-A for a bite to eat and so that he could play on the playground as well. I should note, that his potty training also makes things interesting as any parent surely understands. After he has an accident, two seconds after I ask him if he wants to potty and he responds no, we head to the bathroom to change. My two year old almost always feels he must be picked up. He then wraps his legs around your torso with a death grip and like any two year old can be quite squirmy. It wasn't until I sat back down at our table in the restaurant and he ran off to play that I noticed he had pulled my bag of, nicked my stoma, and that now my shirts was soaked in shit and blood. Fortunately I had a pouch cover on at the time, which I feel took most of the damage. There wasn't much I could do however but to grab a few baby wipes from the diaper bag and clean myself off the best I could. Richie still had to eat and after all there was no power at the house. Needless to say there was some added anxiety over the matter. Just over a week later, this morning I'm taking my son into daycare. After walking into his room I feel a little moisture on my side only to realize that I'm covered in shit. I don't think anyone noticed but I told my son that daddy had to leave and quickly exited stage left with his outstretched hands crying for daddy. The thing I have to keep in mind is that my son will grow up and life will get easier in many ways. I won't have to worry about him getting into something while he's unattended and daddy is in the bathroom. Usually the cartoons he watches are enough to keep him out of trouble when at home. There will be a time when he listens better and is much calmer and I can go to the restroom without worry. Sometime soon hopefully he will cease to feel the need to be picked up thus helping my ostomy bag avoid his legs' death grip around my torso and the potential ramifications. Until that time comes however, life as of late has been particularly stressful and gloomy. I've met lots of ostomates on the internet in forums and on message boards and lots who are parents. I have yet however to meet an ostomate who is a single parent dealing with what I deal with. That's not to say they aren't out there but I sure would love to meet them. Right now I would really like to learn from someone who has tackled many of the same issues and how they dealt with them.