This is a little bit of a rant, but also a question to those who have had long-term pouches.
I had my jpouch surgery over 17 years ago, and shortly after having my colon removed I was diagnosed with crohn's disease and treated with sulfa drugs. Despite treatment I had surgeries for abscesses, fistulas and repeated small bowel obstructions. I also had an ovarian mass that was removed twice and after that surgery I had pelvic pain on top of the abdominal pain from crohn's, which I've tried different pain medications for over the years. For the past five years I've taken 3-5 Vicodin (same strength for 5 years) a day.
Like many of you, I've also been diagnosed with a handful of other autoimmune diseases (sjogrens, raynauds, mixed connective tissue, anklyosing spondylitis). In the past six months I've lost ten pounds, my abdominal pain has increased and food gets caught up in three separate places in my gut. It's SOOOO loud when it works it way through the area where my ilesotomy (and where I had a fistula) that it's super embarrassing. Along with the nausea and occasional vomiting, my stools are SO oily that there's a sheen of fat on the water's surface (sorry for being so graphic). The stabbing pains that I get in my gut remind me of when I was originally diagnosed with Ulcerative Colitis. They double me over. I know my body and I can tell something is off.
So my jpouch surgery refers me to a new GI (old one's retiring) who can possibly look further into my gut and perhaps give a new outlook. New doc does a scope that looks into my pouch (which looks okay), and into my esophagus and stomach which looks fine. He doesn't want to send a camera pill down my small intestine because it might get caught in the dilated loops of bowel and they would have to do surgery to remove. He tells me that he believes my problem might be narcotic bowel syndrome. Not Crohn's as his predecessor and one other GI confirmed years ago. Not a mechanical issue from adhesions or scar tissue. His suggestion--try something natural for pain control. Mind you, I have tried everything the naturopathic world has to offer. In the meantime he did prescribe me a pill that dissolves under the tongue to help with spasms and my hyperactive bowel. He said to check in if I need him for anything else and showed me the door. I asked him if the narcotic bowel would cause all the symptoms including weight loss. He says, "you don't look malnutrition. People who are malnutritioned look really sick. They are sunken in at the temples. You actually look pretty healthy." If I had a dollar for every time someone said I didn't look sick, I'd be a rich girl.
I feel like I'm being given up on.
Anyway, I'm done with my rant and now I would love to hear from any Jpoucher who has had similar experiences...or just your thoughts.
Original Post
