They started seeing ulcerations in my pouch in about 1995. It may or may not be Crohn's but it should be treated. In my case antibiotics were the treatment for about 17 years and now we are going with more traditional Crohn's treatments like Entocort. If I were you I would not be concerned with the diagnosis so much as getting it effectively treated.

I felt really good too. I still do, but my pics look terrible. Check them out:

http://j-pouch.org/eve/forums/...1071921/m/7917065126

DJBHusky-
Since you had/have ulcerations in your pouch, do you now have crohns?
Thanks so much

quote:

Since you had/have ulcerations in your pouch, do you now have crohns?

Diagnosis unknown despite numerous diagnostic tests done over the past 5 years. I don't just have ulcerations in my pouch, I have them in various locations in my neoterminal ileum above the pouch. You should ask your scope doctor if he took a peek above the pouch.

I would not worry so much about a proper diagnosis since the likelihood of "certainty" in your diagnosis is not very high. I have been negative on several tests for Crohn's but I am showing a pattern of inflammation that suggests it. I have come to believe that an inordinate amount of negative energy is spent and wasted in trying to find certainty in a diagnosis for which no inherent diagnostic certainty exists.

What you can be certain of is how the ulcerations do or do not respond to treatment. The treatments may be Crohns treatments or pouchitis treatments, it is how you respond that counts.

My last pouch biopsy showed ulcer and granulation tissue as well. This is not the first time ulcer tissue has been seen - it's been years. None of my doctors have commented or discussed treatment of it. The doctors include my original surgeon, Dr. Shen, and now Dr. Hull (CC). There have been discussions of Crohn's, especially in light of fistulas appearing, but still -- no "official" dx., and no treatment outside of the usual pouchitis/cuffitis/fistula treatment.

I'm going to ask Dr. Hull next week for her opinion. I am feeling fine as well, and, right or wrong, have taken the "what - me worry?" approach at the moment for this particular issue.

Have you talked to your dr. about the need for treatment at this point, and if so, what did he recommend? Otherwise, are you going tto meet with him to discuss?

Nancyann-
I am still waiting for my doctor to call with the results. So I am not sure what he will do. If you don't mind me asking do you have diarrhea or stomach pain? I am just totally surprised by all of this because I dont have diarrhea or stomach pain. In fact I feel amazing.

I feel very good right now as well: no diarrhea, no stomach pain. I did go through a 6-year period where I had flu-like episodes (fevers, very high CRP, some diarrhea, etc.) that no one labeled as Crohn's or explained in any other way, but those episodes disappeared about 1-1/2 years ago, which is coincidentally when my fistulas appeared.

I believe it's not terribly rare that ulcers show up in those of us who've had UC. If you do a "find" for ulcers (top of page), you'll find a number of us who've had these appear.

To help you relax a bit, while ulcers can indeed be one sign of Crohn's, they can also indicate something much less complicated, such as pouchitis/cuffitis or even something like taking too many NSAIDs. Did the doc mention in which part of the pouch he found the ulcers? I'm assuming they were biopsied: those results will hopefully tell you a little more.

Please let us know what your doctor has to say!

Here is an update from my doctor today. The ulcers were not from Crohns. I have a mild case of pouchitis, so he told me to continue to take my vsl3. I also dont have to have another scope for 3 years! I am so relived and happy!

Whew - great news, tiff!