Hopefully good news....

Hi All.

I went to see my GI doc Tuesday, and after trying what seemed like everything under the sun, was referred to see a colorectal surgeon. Will meet with her for a consult October 14. Pretty nervous. Not even sure where to start, what to do, or what to think.

I was told that my problems (severe/chronic constipation and complete bowel incontinence) may not be fixed by the surgery. The thought was to do a colostomy, but after the testing at Mayo, they are having second thoughts about whether it will work. It was originally thought that parts of my colon weren't working, causing the constipation, and removing those parts would fix things. At Mayo, they discovered my colon actually has a hugely abnormally high number of big contractions happening very frequently. (For example, they said a healthy adult colon would have a max of about 4 of these "spikes" in a 24 hour period, I was having up to 4 in 30 seconds, possibly hundreds a day.) Docs still seem rather puzzled about the constipation, just know that I have severe nerve damage, which has really taken any "normal" functioning out of my lower GI tract completely.

I was under the impression that surgery was really the last resort, for when everything else failed to help. Now they say that there is a possibility the surgeon will decide the surgery will not work. I couldn't get up the courage to ask what happens then...

For now, I'm going to do my best to stay positive. Really don't know what to think. I guess I just need to keep reminding myself that I don't have all the info yet and to not get too carried away with the "what if's".

Don't get me wrong. I am very relieved to finally be meeting with the surgeon. Just really hoping she can help.


Thanks for listening.

If you have a colostomy, that will leave most of the colon remaining. Doesn't seem like a good idea with your history of nerve damage in the colon. You can remove the entire colon and have an ileostomy or j-pouch instead.

I'd ask the surgeon about total colectomy (removal of whole colon) when you see her. Something else to discuss is whether to keep your rectum or not. In theory the small bowel could be connected to the rectum, but if your rectum has the same damage as your colon, that's probably not a great idea either.