I was diagnosed with Severe Ulcerative Colitis 2 years ago and have been struggling ever since. They put me on a steroid plus Asacol and after several months I ended up in the hospital with pancreatitis. I then learned that one of the side effects of Asacol is pancreatitis. VERY painful, I must say. “sigh”. It took months to recover from a severe attack and several hospital visits. I also had to have my gallbladder removed last November and I hadn’t had any trouble with that till the Asacol either. Anyway, my GI dr. was in total denial that the Asacol would cause the pancreatitis even though I did some research after and it does list that as a side effect. Two times since my initial hospitalization for pancreatitis I stopped taking the Asacol, then restarted again and got the pancreatitis back both times. With dr. still in denial, I refused to go back on the Asacol. I have not had pancreatitis since. I have however had to keep on the steroids to keep the colitis under control but it is causing me some other bad side effects including weight gain. I went to a new GI and her suggestion was a medicine for Crohn’s and guess what, it lists pancreatitis as a side effect. Like I want to go through that again!

Is anyone else experiencing the same frustrating issues? Basically the doctors are telling me that my only other options are the Remicade which is pretty extreme or to get a colectomy. COME on. This disease is not that new and it is very frustrating to not have more options. The other issue I have besides that is the fact that all this medicine is expensive. Even with my insurance the Asacol was $96.00 every 3 weeks and the new medicine the second GI prescribed is $150.00/mo. Who can afford that??

I am open to any success stories of other options or even similar experiences to mine. I need answers but have been doing research and haven’t got any good answers yet. Is there anyone out there that can help those of us that are still trying to get off the steroids but can’t take the Asacol or similar drugs?

I have started a blog with a new plan of attack that I am following.  Please feel free to read my blog http://ulcerativecolitis2010.blogspot.com/2010/01/practicing-medicine.html and any positive comments that might help me in my quest.  Who knows, maybe my blog will help you in yours. 

Thanks!

 

Chris