Baker is a 39-year old active professional from Richmond, VA. After being diagnosed 9 years ago, recently his GI Doc stated he was his worst case of “UC”. 2 years and lots of Remicade, Imuran, and Prednisone later it’s J-Pouch time. In his twenties Baker competed in triathlons including numerous Ironman distance events and is now the President of a large multi-state distributor with almost 200 employees. Baker and his incredibly supportive and caring wife just had their first child in June 2012.
I’m fortunate in that my flares (while nasty) are fairly well controlled and far apart. I typically get about 2 per year lasting 1-3 weeks, typically induced by some sort of stress. The worst part of my UC recently is that since my last flare my anxiety is at an all time high. Traveling (plane or car) and crowded public places really worries me and I find myself making decisions to avoid these scenarios when normally I would have really looked forward to them.
Ulcerative Colitis to J-Pouch Experience:
As a brief overview before I dive into all the details, I am writing this to share my past and future experience with other UC’ers. As I write this I have 8 days till my J-Pouch surgery. I debated whether I would document the experience or not and ultimately reading what others had posted was so helpful that I decided the least I could do was share my journey so that it may help others.
I was diagnosed with UC, or actually at first it might have been just IBS, on my 30th birthday. It was a hard day for my colon to start with as we ran a half marathon early in the morning (the Virginia Beach Rock-n-Roll Half – dressed in full Kiss rockstar costumes no less!) then started pounding beers. As it was my birthday some friends rented a party bus and the fun continued late into the night. The next day I had abdominal pain and bloody stool and freaked out. Like I’m sure most people on this site have done if you research those symptoms it can be anything from simple IBS to cancer. After my first GI visit, and first colonoscopy I started taking Asacol. I’m not sure if the drugs worked or it just went away on its own but for the next year I had no other symptoms.
Ironically, almost exactly a year later when training for the same race I started to get the abdominal pain and bleeding again. Again I went back to the GI and had another scope and this time I think it was worse and thus instead of IBS they said it was definitely UC. Like last time the symptoms went away when I stopped training and took my meds. Being an endurance athlete my first suspicion was that my symptoms were ischemic colitis as I’d heard of that happening at a number or Ironman races when competitors would push too hard, lose blood flow to their colon, and end up having a section removed. Turns out that clearly wasn’t the case.
As the years progressed my symptoms worsened and increased in frequency. I tried most of the available drugs at some point. Fortunately my UC was not nearly as bad as what I’ve read from others. I would say the uncontrolled urgency was the worst, but as that typically was only really bad during small flares I could be cautious. Other times the occasional emergency trip to the gas station bathroom would suffice and miraculously I survived without an accident for the first eight and a half years of my condition (more on that later). While I tend to lose some quick weight (maybe 10-15 pounds) during bad flares my bigger problem overall is keeping weight off. I used to race at around 175 pounds and now push just over 200. I’d like to think this is due to the steroids but to be honest it’s been the case long before I started taking them.
I guess the turning point for my disease occurred just over 2-years ago during the middle of the summer. I had my first bad flare and just could not get control for almost 6-8 weeks. I’m sure I lost some weight but again I was fortunate that it wasn’t devastating as I saw my doc but didn’t have to go to the hospital. I kept just waiting for it to stop, kept taking more Prednisone and Imuran, and lived cautiously near a bathroom. When it finally wouldn’t stop I was scheduled for a colonoscopy. When I woke up my wife was in tears telling me the doctor said I was his “worst case of UC” and that I needed to take 2 months off work. To be honest I was not shocked or sad but somewhat annoyed he was telling me to take off work. After letting the meds wear off a bit I asked if the goal was to reduce stress, not going to work was going to make things 1000% times worse. I really do enjoy it, I’ve got a very carefree attitude and tend not to stress very much, especially about work. He agreed but said it was time to start Remicade infusions.
Up to this point I had been taking a mix of Prednisone (up to 40mg) and Imuran (up to 100mg) per day to try and control my flares. As I mentioned during this flare I was not responding so my doc prescribed Remicade infusions. He recommended I get the infusion at the local hospital infusion center, which is typically in the cancer ward as they administer chemotherapy as well. I will admit, Remicade, and the other newer biologic drugs (Humira, Enbrel) really are amazing, but they are also scary. My wife was a pharmaceutical rep for many years so when she read the label and the side effects, including lymphoma she was distraught. However, I’ve come to find out that the long term usage of Prednisone is far riskier, hard to believe. One doc actually told me that had the drug not been approved long ago by the FDA, it would likely never get approval today because of all the side effects. In addition they warn you about the possible allergic reactions to Remicade (or more accurately the mouse proteins used in the drug). Starting Remicade was a big step as I’d now progressed from mild drugs, to what I viewed as medium drugs, to now the really heavy stuff. I was now starting to want to know more about what my other options were and surgery was now being discussed in detail.
My first Remicade infusion worked amazingly well and the next day my flare was subsiding, a few days later it was fully controlled. It was around this treatment that I missed one of my good friends weddings in Denver. That was really hard for me as I was always the one who never missed an event, and in many cases planned and promoted a lot of things. I was nervous about getting on a plane and being so far from home immediately after my first Remicade infusion and coming off a bad flare. UC was now starting to have a much bigger negative impact on my life and I wasn’t happy about it.
The first few infusions worked well (every 8 weeks) but it wasn’t long until I was having to take Prednisone again to help the Remicade. After my visit to the Mayo Clinic in Rochester, MN (separate post coming on this) in February of 2012 I also started taking Imuran to help the Remicade efficacy, here’s a link to the study for those interest:
I’ve played around with a mix of those three drugs for the last 2 years but in May of this year, right before the birth of my son I had another bad flare that required me to take 60mg of Prednisone to get control, and it was right after a Remicade treatment. It was during this time that I had my first accident, in a grocery store parking lot, I simply couldn’t hold it another second. I rushed home, cleaned up, humiliated and incredibly angry at my UC.
Granted it was a stressful time of my life (and also the most joyous)
but I think it was then that I emotionally committed to the surgical option.
I can’t envision myself, even with control most of the time, spending time with my son and having to worry about bathrooms, urgency, etc…
I’ll submit a separate post on my experience finding and finally booking my surgery, scheduled for October 11th, and of course during and after my surgery. In additon I’ll elaborate more on my visit to the Mayo Clinic, definitely worthy of a write-up.
Where I’d like to be in 1 year:
Post J-Pouch, healed up, healthy, and active with NO DRUGS!
Remicade – 5mg / kg every 8 weeks
Prednisone – 10 mg to 40 mg (varies based on symptoms)
Imuran – 100 mg per day
written by Baker
submitted in the colitis venting area