In case this helps anyone . . .

Hi Daniel

I am sorry for your news. what dill the pull endoscopy  show?  Do you have inflammation anywhere other than joouch?  I have been told I may have crohns due to poor pouch function but no one suggested any tests other than the standard pouchioscopies which  I always have.  Are they starting new treatment? 

Unhappy news to be sure.  But, the other side of the coin is that now you have an answer and can begin appropriate treatment. It does not mean the demise of your j-pouch, but it is still a possibility.

Some people go years before a proper diagnosis.

Jan

Hi Jeane and Jan,

So Jeane, it was precisely because the pouchosopy showed an apparently healthy pouch, yet I was still having such miserable time, that the GI was suspicious and ordered this pill camera test, which showed the inflammation in the small bowel. He did warn me that we might come up empty-handed, but thought it was worth testing the theory, and turned out he was right. Obviously I'm a total layman medically with no qualifications to to give anyone medical advice, and this was just what happened to me, but if you're also having poor pouch function but totally clear pouchoscopies, might be worth at least speaking to your GI about having a look higher up. I had just resigned myself to the thought that this was what life would be like with a j-pouch. But now turns out there was a totally different explanation for the constant BMs.

And Jan - yes, I was in the bizarre position of almost hoping I had crohns! This way, we can start treatment (likely remicade or humira he told me), which, if successful, will hopefully give me my life back (or at least a life outside the bathroom). Here's hoping.

Yes! I do not have a Crohn's diagnosis, but did have persistent pouchitis that was not coming under control with antibiotics, plus I was on various biologics (Enbrel, Humira, Simponi, Cimzia) for IBD related arthritis. I am now on Remicade and Imuran. It's only been a couple of months, but my pouch function is improved and I am off antibiotics.

Perhaps it is Crohn's. Doesn't matter to me what they call it. I am happy there is treatment.

Jan  

Hi Dan, 

i find it so odd that with all the issues I have had w my pouch and chronic pouchitis, no one has ever suggested a small vowel series. As a matter of fact, Dr Remzi st CKevekand  suggested I may have crohns but instead of suggesting  sending ne to a GI for alternate treatment ( and I am under  the care of a very joouch qualified GI here at home) he suggested perm ostomy or complete pouch re do. Not a good suggestion to re do if crohns is a consideration. Sometimes I wonder if all the upper left side pain and cramping I'm getting with the numerous bathroom trips is always generating from my pouch. I too am in and off antibiotics often.  I am going to suggest pill scope to my GI at next visit.  I plan my days around the bathroom at times and it is limiting. 

DanielR with the pillcam were you able to pass that easily? it frightens me the idea of having crohns. i too have a completely healthy pouch but i have all these issues that no one seems to be able to figure out. 

DGTracy - yes, passed very easily. Didn't even notice. More to the point, they told me to look out for it over the 2 days after the process, but given my limited digestive system, it passed within half an hour of the procedure ending - so after about 9 hours!

DanielR -  Thank you! when they asked you to look out for it im guessing you need to retrieve it and send it back in?

Nope. They're a one-shot deal, not reusable. So don't even need to go through the indignity of fishing it out. Just flush it.

J pouch 2011 pouchitis since did all the antibiotics vsl 3 kangen water every diet went to NYU LANGONE 3 weeks ago for second opinion before committing to 6 mp or any other chemo based drug and was told about a study that was just starting in the US the drug is ALICAFORSEN it had a 58% success rate in studies in Europe the study is double blind and I started the med  or placebo yesterday. The study is posted on the crohn's and colitis website . It is Worth a shot. The doctor at NYU LANGONE is DR DAVID HUDESMAN his nurses name is Amy the number is 212-263-3095 im sure they can give you any info you need regarding the study. The study last for 24 weeks 6 weeks of med or placebo 18 weeks of follow up.If you are on the placebo they will give you the drug after 10 weeks.  The study is for 170 subjects in the US NYU will get between 10 and 15.