Ileostomy for severe IBS??

Hi Plum - Who originally told you that you dont' have uc? Was it a gastro or your normal doctor? Did you ever get a second opinion from another gastroenterologist? I find it hard to believe that you are having bloody stools and have only IBS. What was their explanation for the ulcers in your terminal ileum? When were you last scoped? What kind of drugs did they have you on? I know it's a ton of questions, your symptoms just don't sound like typical IBS.

I think most of us would understand your desire to live a normal life. In fact, many people with Crohn's and UC choose surgery so they can live a normal life. IBD'ers, though, also do it to avoid harsh medicines and potentially life threatening IBD complications. I think alot of doctors wouldn't want to consider giving you major surgery unless there was a medical necessity...which they might think you don't have with an IBS diagnosis.

I agree with everyone above and also want to suggest going to another GI for a 2nd opinion, preferably a GI at a learning hospital nearby. Get your records from the first GI and bring them with you. If you haven't been treated yet with the basic therapies (asacol, pentasa, which I know as ASA-5), that's the first step before talking about surgery.
And no, you re not crazy for thinking about surgery. I and most of the people on this forum have had our lives profoundly limited by UC flare-ups - diarhea, pain, weakness etc. - to a point where it was clear that you couldn't go on anymore, particularly when drugs stopped helping.

You're definitely brave though, for looking at your situation realistically and knowing you can't continue like that. I was telling myself all kinds of stories and in denial about how ill I truly was before my GI and his colleagues talked me back to reality. But it is not yet clear that you should have surgery - you need to clear up the diagnosis immediately and get on the basic, non-steroid therapy first (by the way these basic drugs are related to aspirin and have no side-effects). This could very well change things for you.
Don't hesitate to go to another GI. It sounds a bit strange that you have ulcers there and your present GI is talking about ibs.
One thing about the GI's outside of hospitals - their patients cover the entire gammit of gastro issues, so they often don't have special experience with inflammatory disease. That's why I went to a specialist at the universty hospital in my city.
Let's hear from you about what happens, and I hope you're feeling better soon.

PlumPie where are you located geographically? Maybe someone here can help refer to you a more trustworthy GI. I know I saw a few less than stellar ones before I got my IBD diagnosis (though not as egregious as what it sounds like you've been through).

Sometimes we have to get a third and maybe even a fourth opinion. That's the situation you are in now, because what you have been hearing up to now is lame, incompetent, and stupid, to be blunt. Maybe it's a good idea to post here where you live, highly possible that people here can make recommendations. You need to get yourself into competent GI hands because until now you have not been at all. Bloody diarhea is not "nothing wrong with you."
Don't feel exhausted or discouraged about this. Just one more phone call to find the right doctor who can help you. I can imagine how frustrating this is, but this is not the time to give in to what you are hearing from these not-good doctors. Make the call or two on Monday morning. As soon as you are in competent hands, have a clear diagnosis and course of treatment, you are going to have an entirely different, better outlook on life.

I checked a bit, couldn't find anything in Grand Rapids other than doctor practises. Is Ann Arbor far? Even if it means a couple of hours on a train, it will be worth your while to see the right GI:

Gastroenterology at Taubman Center
1500 E. Medical Center DriveFloor 3, Reception D
Ann ArborMI48109
888-229-7408

If traveling a little is really not possible, call them anyway, ask to speak with a GI, get this GI on the phone and describe your situation so this doctor can recommend someone closer. Also check this link because U Mich has IBD clinics in different locations:

http://www.med.umich.edu/ibd/faculty/locations.html

Post Edited (B'Dereh) : 1/5/2013 11:55:32 AM (GMT-7)

Plum,

I was in the same exact situation you were in and kept going to different GI s for the two years they didn't know what was going on. I even went out of the way to see a colorectal doctor and he still didn't know what was going on. Finally, fortunately, my supervisor's husband was seeing this GI for similar symptoms so I went to see him and boom! They instantly knew it was UC right after they did a colonoscopy.

I think you just have to keep searching....but I sincerely hope you can get help fast cause your symptoms really sound bad.

Try to find an IBD specialist. This was the best advice I ever got, and when I was first diagnosed I had no idea that there was such a thing, but it is a subspeciality of gastroentorology, and there are a lot of them. For a teaching hospital, look at the list of gastros, and it should say their areas of interest, and look for IBD, crohns, or colitis. The field changes so quickly that you want the doc who goes to the conferences on IBD, who does his/her research on it, who has seen lots and lots of cases, etc. My first gi was actually OK, but when I went to the IBD specialist, it was clear that he knew way more. I also had some rare complications..... but even w/the rare ones he had still seen them before.