I've been a long time visitor to this site and definitely thank you all for such valuable information posted on these forums. I've come to a little bit of a dead end in treatment and was wondering if anyone had any experience similar to mine or an idea as to what might be going on as the doctor I am seeing in Japan is somewhat inexperienced with j-pouches. Though, it may also be that I might have too many symptoms to sort through, so I'd appreciate any response.
I was diagnosed with UC when I was 15 (in 2001) with the inflammation limited to my descending colon. It was controlled by Rowasa (mesalamine enema) for about a year before I flared into pancolitis. I unfortunately was unable to go into remission as remicade and cyclosporine failed. In Nov. of 2002, I had my colectomy and had my j-pouch created in a 3-step surgery. I adjusted to my j-pouch with no problems and through the years had very little problem with pouchitis since I got it once every 3 years or so.
Fast forwarding... (gets long-winded from here)
I had moved to Japan to study Japanese about 8 years ago, and have been here ever since. I never had any problems until I started working 3 years ago. I began to have trouble eating. At times whenever I ate too much, my body would go into some sort of panic attack. It was never constant, but it did make me slightly fear overeating. Though at the time, a gastro doctor did find that I did have gallstones and took ursodiol for three months. My eating problem never really did go away, but it was not too bothersome, so I never pursued it further.
Last year, things went downhill. I changed jobs because my the work environment was bad. Going into my new job, I basically lost my ability to eat anything. Two bites and I would feel nauseated. While I did have some urgency, I did not think I had pouchitis because my pain was limited only to the upper abdomen, and my periods were perhaps the cause of my urgency as I do sometimes get urgency before a cycle. I did not have diarrhea though. One of the doctors at the hospital I currently visit suggested I do a pouchoscopy. Somewhat reluctant, I went with the suggestion to do the pouchoscopy. Turns out, I have ulcers around the anastomosis and the bottom of the pouch, but not into the upper part of the pouch. Also, an upper endoscopy and CT scan was done, but they came out clean.
Treatment for my doctor has proven to be difficult as I am not responding to anything. For the past year, I had been doing penatasa (mesalamine) enemas, but it did not help. We've also tried steroid suppositories, and a short course of 200mg cipro twice a day for two weeks. Since pentasa was not working, I changed to a ointment based steroid two weeks ago, but that also does not help my symptoms. While I do not have the typical urgency or diarrhea, the symptoms that continue to plague me is an inability to eat, bleeding of the ulcers, and upper abdominal pain. My current doctor is beginning to believe that my current state is a result of the surgeries. Out of three pouchoscopies over the course of a year and a half, the area of where the ulcers are are still the same, and it has neither gotten worse nor better. Also, all my blood work comes back normal, so my upper abdominal pain is still a mystery.
Also, my doctor does not like the idea of long-term antibiotic use. He has been really trying to stay away from them, but might give in to an antibiotic treatment if he believe it is safe. I will know more about it tomorrow when I see him again for a check-up.
I really am hoping to get some relief from my symptoms as it has been a tough year and a half. I lost my job because of being sick. I would really like to work, but being in my current state, it makes it difficult as I am always tired from being anemic and not being able to eat. If you have any similar experience or have ideas, that would be greatly appreciated.
If you made it to the end, thank you for reading.