Highway Robbery

A bit has happened since my last post. On the bright side I seem to be healing and may even get off this vacuum sooner than I thought. God knows I've been force feeding myself and adding lots of meat and protein in the hope of accelerating the process. I feel though I've been able to gain weight the past week or so. This is all promising. Nonetheless I'm still attached to the wound vac but hopefully not for too much longer. I became quite alarmed on Monday to learn that the daily cost of this wound vac is $199 a day. While my insurance is covering the cost of the wound vac under durable medical supplies I have only $10,000 in coverage annually. You can imagine my concern when I did the math and discovered that with a couple of more weeks a significant chunk of that $10,000 would be eaten up by the wound vac. Alarmed, I immediately called my medical insurance company Aetna, to find out what kind of contract rate that they pay but did not get a clear answer. Instead I received what I believe the maximum amount they would pay for the KCI vac would be, not including supplies of course. $199 a day...to rent a wound vac!!!! The vac itself probably only cost a couple of grand to manufacture and it will be rented out till the unit dies. Talk about highway robbery. This is certainly an area where healthcare reform is needed. No one listens to average Joe though. Unless you are a lobbyist or campaign contributor you have no voice. Money is what talks!
I need to get off my soapbox. The good news this week is that each day has seen significant improvement and more than likely I will be able to lose the wound vac by Monday.

Another development that caused concern over the past week and continues to cause concern is the area around my stoma. I went in to my surgeon's office last week and asked him about my lopsided abdomen. The swelling had gone down everywhere but the area around my stoma. He took a look at it and shared his agreement with a "Yes, it does look lopsided". Whether it was permanent or not he would not say. What he did say is that I have a weakened fascia from multiple abdominal surgeries and a stoma that was placed in the same exact spot as the previous stoma. I'd be lying if I didn't admit that some of my concern and subsequent "depression" over the mater revolves around the cosmetic affects, despite the fact that I don't see myself strutting my stuff or a 6-pack with an ostomy appliance on the beach any time soon. A larger concern however stemmed from the word weakened. I want to do a tough mudder at the end of the year. I want to continue to run, lift weights, do yoga, play basketball and maybe event take a martial arts class. I do not want a hernia however. My surgeon did not believe the swelling around my stoma was a parastomal hernia and if the swelling goes down periodically I would not believe it to be either. However when the area does swell up around my stoma it is typically accompanied by some discomfort. What that means I'm not quite sure but I plan on pressing the issue and getting more answers at my next appointment.

In the meantime I'm keeping my fingers crossed that there is light at the end of this tunnel and I can get back to work and into a routine again soon.

Recovery and Metabolism

I wondered the other day how I could be losing weight, while eating normally, getting no exercise, and adding protein supplements to my diet. Then a friend who is also a nurse pointed out that with the large wound healing my metabolism speeds up to repair the body. I did a little google search last night and found this article, which goes into detail on the relationship between wound healing and metabolism.

http://www.lef.org/protocols/health_concerns/trauma_01.htm

And the Winner Is ...

I almost forgot to weigh in on my ostomy appliance decision. I did wind up falling in love with the Coloplast Sensura Click system. The reasons for the love affair with the Sensura Click;

First of all the Sensura Pouch is AWESOME, the material does not get ratty like the hollister pouch and the opaque pouch is a beige/tan color, not the convatec opaque white. The design of the pouch is ingenious. Its got a wide opening and the opening is easier to open than any of the other pouches. The material at the opening is great too. Sometimes with the hollister and convatec pouch if you got a little poo on the lip sometimes it does not come off and it gets grungy. The coloplast closure wipes clean every single time. The tail of the pouch folds up into itself and therefore does not hang in my croch like the hollister and convatec pouches. The flanges once its on for a few moments molds to your skin. I've had less problem with the adhesion of this flange than any others. The flange is also a clear color that blends with your skin and the whole unit has a very low profile. To be honest in my mind I think coloplast thought of everything.
I should add that the Sensura Click appliance held up for over 5 days with a serious infection, an abdomen that was swollen like a soccer ball, and an emergency surgery without a leak or losing its grip. There were a few moments where I was concerned with the swelling in my abdomen that my stoma would wind up flush with my belly and then there would be an issue. However it turned out to be unfounded. My Sensura Xpro extended wear barrier and accompanying drainable pouch held up like champs.
Through it all, the coloplast nurse, Rita was a huge help and asset to her company. I was pleasantly surprised when I got a call from her today. I explained that I'm having some adhesion issues caused by the wound vac and a home health care nurse that goes tape crazy even lifting up the edge of my flange or taping over a corner of my flange (this is a whole other issue). Rita said she had some supplies that may help and she was going to send me some. Thanks Rita!

Corticosteroid Risks

I read a discussion on a forum directed at j-pouchers. Unfortunately one of the downsides to the jpouch is the chance that you'll get pouchitis or worse yet, chronic pouchitis. A pouchitis flare can often be worse than a UC flare. The drugs typically used to treat pouchitis are antibiotics such as cipro and flagyl, which are two of the most common. These drugs aren't meant for long term use and carry the risk of serious long term side effects. Other drugs used to keep the pouchitis in remission include drugs such as entocort , which is a corticosteroid. Dr. Shen at the Cleveland Clinic tried to tell me that it was harmless but Mayo Clinic information on corticosteroids indicates otherwise.

http://www.mayoclinic.com/health/steroids/HQ01431

Take Steps, Be Heard for Crohn's and Colitis:

Take Steps, Be Heard for Crohn's and Colitis:

I've decided to participate in this year's Take Steps Walk to Raise money for Crohn's and Colitis Research. Please help me in finding a cure by donating.

Take Steps: Why We Walk!

IBD Awareness Ribbon

My IBD and Ostomy Awareness Ribbon Came and I took a couple of pictures to share them with everyone. In case anyone else is interested in supporting the cause I'm including a link. I've had the pleasure of emailing Louis one of the women behind the ribbon. She is a really genuine and wonderful person who is a great asset to our cause. Check out the IBD and Ostomy Awareness Ribbon site at http://www.ibdandostomyawarenessribbon.bbnow.org/

Back Home

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

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

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.