adhesions from colectomy

From: Joy (
Wed Oct 11 22:09:10 2006

When I was 3 years old, I was diagnosed with a rare disease called F.A.P. which causes hundreds to thousands of pre-cancerous polyps to develop in the large intestine. I had a full colectomy with a J-pouch and temporary ileostomy. After a few years, once my body adjusted to its new set-up, I was able to live normally devoid of any real problems for almost 10 years.

About a year ago, I started having abdominal pain and nausea, along with problems with bowel movements. I thought it was intestinal and went straight to my GI doctor. He had me do a CT scan, which showed nothing but a small abnormal mass near my ovary. I was immediately sent to a GYN who said laproscopic surgery to remove the cyst, or what was probably a cyst, would be the best bet. But when the doctor got in there, he had trouble navigating because, it turns out, I have adhesion disease. He was unable to even see my ovary and saw what he thought was the "cyst" and removed it. This did nothing to help me, though. So finally, after many more tests and doctors and lalalala...I went back to my GI doctor who said he now thought I had adhesion disease and this was causing all my problems. I had surgery to remove adhesions a month later and this, eventually, made me feel much better.

However, now, just a year later I am having problems again. I just went to my GI doctor today and he said it is adhesions and I've done very well to not have too many problems until now. With my condition he said that this is to be expected and I can't have surgery every time it comes up again. So right now I'm trying to wait it out.

I was wondering if anyone had these type of symptoms with their adhesions. Obviously abdominal pain, problematic bowel movements...but also lower back pain, nausea, trouble eating/not having much of an apetite, getting full (or at least feeling that way) very fast, bladder problems (doctors keep telling me i have a UTI, but I had bladder problems last year along with my other symptoms, so I defnitely think its related), partial intestinal obstructions, bloated stomach, being overly tired a lot, etc. Some of it is probably just from the stress of the pain. However, all of these symptoms seem to be connected, even though my doctor has told me that my lower back pain & bladder problems should have nothing to do with the rest of it - I find this very hard to believe. I was told to keep eating to stimulate my bowel, chew my food well, & stay very hydrated.

Has anyone found medicine to help? I know no medicine can fix the problem, but anything to take away at least some pain or one of the many symptoms? I sometimes take Zophran for nausea. Phinergan helps my bowels to relax & open up when I have an obstruction, but it also makes me sleep hard for 12 hours, so it's not conducive with school. My doctor has just prescribed Levsin to me...we'll have to see how that works. My comfort foods when I'm in pain are yogurt (especially yoplait whips), lemon italian ice, and toast. :)

I'd really just love to get in contact with others who are experiencing the same thing as me. I've only met one of person with adhesion problems and that is my sister. None of my friends really understand it - they all think I can take some medicine or go to the doctor and then be better. I know I can't expect them to understand, it just makes it kind of hard to deal with.

Thanks for reading! I know this is really long!

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