Anyone have a pouchoscopy for functional pouch issues?

When I had my flex pouch scope at Mayo I didn't take any sleep/pain IV medication. The nurses assured me the doctor did colonoscopies like that and has the "touch". He went up 2 feet into my small intestines and examined and took biopsies from above as well as inside. He said it was the best j-pouch he's seen in 5 years. I almost said I bet you say that to all the pouches. He showed me the scaring from where it was constructed and it was just like a regular scar. He said it was a good size and I should only have 4-5 BM's daily After I get the cuffis under control. I'm glad I put up with a little discomfort to learn and see everything.

He assured me that my pouch is well constructed and functional, except for the cuffitis.

I still have daily pain. I was diagnosed as having IPS and have adhesion pain along with pouch pain/burning on in the cuff area during cuffitis flares. I'm taking an antispasmodic and still need to take some Norco daily.

I also wonder if I'm going to have to put up with things as they are long term. I've considered the possibility of going to an end ileo but think I would still have the adhesion pain.

This has just not turned out like I thought it would.

Toughenough,

Funny thing..my cuffitis has improved. No more bleeding and minor irritation at times and no more canasa for the most part. I actually found canasa burned when the cuff was flaring.

I am very interested in having the pouchogram done and any other test to rule out any functional/structural issues with my pouch. From there, I may see a natural path doctor or a functional medicine doc as I am looking up some things on the internet that may hopefully help. I am wondering at this time if I have leaky gut syndrome due to the pouchitis as I have many of the symptoms described (muscle/joint pain/fatigue etc.
I may ask for a few additional tests like a hydrogen breath test. Maybe I am grasping at straws but I want to exhaust my possibilities before throwing in the the towel completely. I am just so reluctant to have anyone operate on me again after what I have been
through the last 16 months.

Leaky gut is an issue where undigested food particle/toxins pass through your gut wall due to the inflammation and pass through your blood causing an array of debilitating side effects.

jeane,
It is just one thing or another. I am interested in what you find out with the natural path and/or functional medical doctor. I went to both years ago with my UC. I think I could have found a better natural path. She had me put a drop of blood on some kind of paper so she could send it off for analysis - didn't make sense at all so I only saw her 2 times. I went to what I called an alternative MD 2 states away. $2,000 later nothing helped. That was probably 10+ years ago.

I'm glad your cuffitis is under control. Mine is too, I think. I can tell when it's back because it burns but the canasa doesn't burn.

Take care