Long story, my daughter had a pouch revision, May 2012 (surgeon moved the inlet to her pouch to the other side) and that went well (after all the complications), ulcer that was at the old inlet is still healing and getting smaller. Then in Aug 2012 she had a blockage and again in Sept, Nov and then in Dec again but this time she had to go to the ER and was admitted, scoped and a tube, some type of decompression tube was left in after the scope for a day or 2. Then on her winter break from college she had emergency surgery, strictureplasty, for a full blockage that is believed to have been at her old ostomy site. So then the drs were going back and forth with maybe this is crohns and then 5 weeks post op from the structureplasty in Jan she started with bloating and stomach pain. Then she had another scope, and the dr believed he went past the Jan surgery site and all looked good. Then she had an upper GI series (to rule out crohns) with barium and where she had the surgery in Jan it looked a little odd, she said like a "W" in the middle of her intestines. So the way she described it, because she watched with the radiologist, the barium moved through the intestines, then went into one side of the W or it looked to me on the film like an hour glass like shape, but the barium went in and then went up into the area, not across and through. It kinda went in, and got stuck up in the "bump" like shape and then went down and eventually across and continued through her intestines. So the radiologist, who is a crohns expert, said she doesn't have crohns but maybe a motility issue after this last surgery.
Then she had an endoscopy in April to see if the dr could find the area and if it was narrowed then balloon dilate it and she went up 100cm and way past the surgical area (that was at 50cm)and other than some really sharp turns she said all looks good and no crohns. Biopsies confirmed this.
My daughter still has pain, almost daily, it has gotten better, it use to be 24/7. GI thinks she may have hypersensitivity and hopefully it will go away, but she can't function on the anticholergenics to "relax" the bowel.
She started biofeedback for the pain 2 weeks ago and is concerned that she may need surgery to correct the way she healed from the surgery in Jan. Jan was a side by side strictureplasty and another surgeon said maybe a resection would fix it.
We really don't know what this is, she has bloating sometimes after eating and also sometimes she hurts after eating and even when she wakes up in the morning, so it's not just after eating. She has no change in her bms. She is doing yoga for the past month+ and says that helps somewhat. She also says that if she lays down and massages that area where she had the strictureplasty that sometimes it hurts bad to touch the area and then she also sees a tiny bulge and then when she pushes on it, massaging it, it seems to almost release and maybe she moves the stool along and she feels a tiny bit of relief.
She is at college now and her surgeon is at home so she will not see him till mid June. We just don't know what this could be....could she have IBS now? Could it be a mechanical problem and require more surgery? Could biofeedback or physical therapy/massage help? Even though she has had narrowing where she had the inlet to the pouch and the old temp ostomy site, the GI says she does not have crohns and feels that the narrowing in the past was just at past surgical sites. Dr also says maybe it could be the sharp turns in her intestines?? Her pouch looks good, but she has this pain and it is really getting to her.
Does anyone have or have had pain like this or issues like these or any ideas, PLEASE?
Thank you. Sorry for the long post.
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