Hello all, my fiancÉ has been though the ringer, I have been there the whole way, but we are at a loss now. she has had ileo, take down, pouch and so on. everything was good for about 7yrs after. Then last year she started has issues with abdominal pain, which started getting worse. blood in stool, more frequent trips to the bathroom and so on. Well after multiple test sig, endos, CT, Mri and so on. They concluded it was pouchitis, so they started the rounds of antibiotics cipro, flagyl, 3 weeks at a time. seemed like it was working, then more intense pain started couple months after starting antibiotics. More test decided it may be gallbladder since she had some small stones in there, so they took that out Oct 2014. Well couple weeks later pain again. They now have her on VSL3 which her insurance doesn't cover, but she has had so much pain and is having problems trying to make it through the day at work. So now she is scheduled to have 2 different type of CT's next Thursday. I have tried to get her to get on this site ever since this whole thing has happen over 10 years ago, but I believe she just finds it heard to except that all this has happen to her, but I have read and learned a lot from this site over the years even though I waited until know to become a member. Just wish I could have gotten her to join way back then. I know its hard for her but I wish I could just get her to talk to others dealing with the same thing.

Original Post

Well, at least YOU want to be more informed, and bravo to you for wanting to be proactive for her! Some people just do not want all that information. It is not wrong. Just a different way of coping with things. Still, she can become a member and not post, if that's what she would prefer. Or, just search and read to see if something fits her scenario. Again, no right or wrong on that. 


Abdominal pain can be tricky. Been there. But, not to her extent. One suggestion, if she has not done this, is to keep a diary noting what she eats and does, along with recording each pain episode. Imaging does not always nail down a cause of pain, particularly if it is due to IBS or adhesions. In thoses cases, it is a detailed history that leads to the diagnosis.


Good luck, and tell her she is welcome to lurk or join, whatever suits her!



Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.