Doctor wants the knife. I DONT!

Please reread my post. I said it may not work for me.

If that is because of a lifestyle issue, so be it. I didn't qualify it.

Tornado6 said...
I would not say the SCD doesn't work, but it may not work for me.

Fair enough, I just had to finally say it and now Im not touching a single diet thread again.

I am getting some time off work. I am going to try a DIET and this time I mean doing it the way it is suppose to be done. Not half assign it. I quoted below what my GI said about my UC. Can you guys let me know what you think? This is driving me nuts. I will be getting a second and third and fourth opinion soon.

"You have inflammatory bowel disease, and we devise these into ulcerative colitis and Chron's disease. There is always some people that we can not determine which it is, and we call these indeterminate Last colonoscopy in December with disease only in the lower, left colon. I sent off special blood tests, and these test came back as indeterminate/inconclusive. There is no absolute way to tell, so it makes more difficult to know what surgery we would do (if we do surgery)"

The Prometheus test should only be considered as one small part of the diagnosis, and never relied upon. Because it's highly fallible, the Cleveland Clinic no longer uses this test in diagnosing between Crohn's and UC; they threw it out years ago. My surgeon, back in 2001, also scoffed at the test. My surgeon was a researcher and he said their testing procedures were suspect. I've know a few people who were dx with Crohn's with Prometheus only to have UC once the colon was removed and biopsied.

Sue

There seems to be a lot of misunderstandings about surgery in this thread... *plenty* of Crohn's disease sufferers have partial or total colectomies. I'd say at least half of the people who post on the Ostomies board here on HW are Crohn's sufferers, not UC (or FAP, colon cancer, etc). If Crohn's inflammation is confined to the large bowel then surgery can often be a huge QOL improvement. I have a close friend IRL who has Crohn's and had most of his colon removed with an immediate reconnection (no ostomy) and is doing amazingly. Some people who have *confirmed* Crohn's disease are even considered good candidates for j-pouch according to the Cleveland Clinic standards. So just to say "Surgery is a bad idea because you might have Crohn's" is wildly incorrect.

The surgeon removed the colon because the colon needed to go. Even Crohn's patients can't always keep their colon. The surgeon did not believe the patient had Crohn's and follow-up pathology indicated he was correct.

Sue

Hi Berkely - It sounds as if your doctor isn't sure which version of IBD you have. It sounds like your scope said UC (in terms of inflammation location) but a blood test said Crohn's. Therefore they are calling it indeterminate.

My GI is another one that doesn't put alot of stock in the "Crohn's versus UC" blood test (the Prometheus test). When deciding on surgery, I asked her about it since I had never had it. She said that even if it came back Crohn's, that my scope and biopsy findings were so strongly UC that she would just ignore the blood test anyway. With the scope, my colon was continually inflamed from my rectum on up, the ulceration were only on the mucousal layer, and my biopsies only indicated UC type inflammation. I never had any indications of Crohn's.

If you meet with the surgeon, I think you should discuss the previous test findings (in regards to whether you have Crohn's or UC). I wonder if you could get a second opinion somewhere in regards to the UC/Crohn's" findings.

And someone asked earlier about why a Crohnie would get their coloned removed and I'm just adding to what Sue said. Sometimes it has to go even with Crohn's. I asked my surgeon "what if I actually have Crohn's" and he said that the colon needed to come out regardless because it was causing so much trouble. What typically happens is if your post surgery tests come back indicating Crohn's, then they recommend and ileo instead of a jpouch.