Oh...and also having serious rectal pain inside during and after bms, no matter what the consistency. Terrible pain! Takes my breath away, makes me sweat, and feel dizzy. Lasts about 30 minutes...then stays sore.

Sharon

I'd be surprised if the cyst was a factor in pouchitis, and if you can't put your finger on a dietary trigger there's a good chance it doesn't exist. Have you tried antibiotics? Is there any hint of ischemic pouchitis?

I did 2 rounds of antiobiotics in the last 6 months....to no avail. On Humira now....no change. Surgeon has been out for a month (having and recovering from surgery himself). They just pushed my next Appt back til the end of August. Symptoms are always there.....but I'll have 3-4 tolerable days then it hits like a ton of bricks. Wondering if I should see another doc in the practice. Gyn office called to say they will f/u with another ultrasound in 3 months�� They agree that this issue is not the cyst.

Hi Sharon,

I wonder if hormones are playing a role in what you're going through. I know I started having regular pouchitis after using a hormonal birth control, and continue to have flares each month in the 10 days before my period. I know it is a common complaint for female patients both with IBD and j-pouches to have symptoms flare up relative to their cycle, but unfortunately I don't think any serious studies have been done to come up with solutions. My surgeon said "go on birth control to limit your periods" but he's not getting that going on birth control seems to have been my trigger > Same guy that gives me more antibiotics every time I tell him the side effects are worse than my symptoms. Anyway, I digress - I wonder if speaking to an endocrinologist might help? I've debated going to one myself. Just a suggestion - I hope you find some relief soon!

Sharon, maybe you need a good gastroenterologist. It would be best to find someone who would recognize ischemic pouchitis, for example. 

Have you been tested for C. diff?

Sharon, how old ate you?  Could be peri memopausal symptoms.  I also have only one overy. Lost the otherone due to a cyst and large tumor.   Sounds like a hormone issue. Id see my GYN.  Feel better, i know how painful those cysts are!

Thanks for the input. The Gyn says the cyst is not my problem and is adamant that it's a GI issue. So frustrating. I have gone to so many GI docs and always end up back with the colorectal surgeon who delivered my micropremie (another long story). He graciously agrees to follow me and has watched me go through so many docs. Maybe his being out for surgery himself is a sign to find the Gastro doc like you said. I hadn't thought of seeing an endocrine doc. My son sees one monthly and that didn't even cross my mind. Thanks for the suggestion.

Do you ever get frustrated with the fact that the new GI docs never listen to all of the details of your journey and try to help piece anything together? They rush you through and assume that you are a black and white case and that's it. If you don't fit the mold then......continue with what you are doing and I'll see you in three months. Ugh. So in that next three months nothing changes except that you have been in pain for three months. What I have figured out over the last 10 years of having a j pouch is that the less you eat....the better it goes. But that brings it's own issues as we all know. Now I am struggling to get nutrition and look gray and ill. In the end...people think "oh...her stomach hurts...she'll be fine". It gets harder and harder to buck up and put your happy face on at work all day and be "normal". My 8 year son feels the decline in my health and energy as well. Thanks for letting me vent and thanks for validating how I feel.

Scott,

I have not been recently tested for C-diff. I had it 2x before the colectomy in 2006. I will bring that up to the doc. Thanks!