Newly diagnosed and very confused

Hi everyone!

My story.. abdominal pain started this past January. At first, the suspicion was that it was my gallbladder as the pain occurred after meals. Pain progressed over time and in early March I started passing blood. A CT scan showed probable UC throughout the entire colon, and colonoscopy was recommended. I ended up on six weeks of a prednisone taper and morphine. I lost 10 pounds and was bedridden in horrible pain for 3 weeks. I am 45. I had the colonoscopy in June and met with the surgeon last week for the results. He told me that my entire colon is diseased with no normal cells found anywhere. He took 17 biopsies and none showed cancer but none were normal either. He said my colon looked like I was a colitis suffer for about 20 years and now the colon is "burnt out." He said it was stiff and full of tiny polyps with lots of scar tissue. He recommends removing the entire colon, "from top to bottom" but wants a second opinion and so is sending me to a gastroenterologist for (most likely) another colonoscopy.

I have never been treated for colitis with the exception of prednisone and morphine during the flare. To my knowledge, my first flare was 4 months ago. I am fully functioning. I have pain at times after meals with gas and bloating, but otherwise I feel fine. My BM range from 0 - 4 a day, but not formed. I can also go a long time without having one at all necessitating laxitives.

Needless to say, I was stunned to get my colonoscopy report as I thought my diease would be mild. I think removing my colon seems premature given my symptoms. I am happy to be getting a second opinion, but need to wait 6 weeks to see anyone.

Any thoughts?

Wow! That sounds bad. And so definitive.
I'd want a second opinion - even a second colonoscopy.
Hang in there!

Def sounds crazy having the symptoms of mild but the colon of severe. but it happens... and the other way around... people have moderate symptoms but their colons look "pretty good."

being 45, polyps, scar tissue... not even factoring the Ulcerative Colitis - a colectomy doesn't sound like a bad idea. Especially while you are younger and can bounce back from a major surgery easier.

But any time you are faced with something like this... def get a second opinion! And a third even!

Your inflammatory bowel disease sounds confusing - but wether its UC or a mixture of other things... if the colon's gotta go, its gotta go! :)

Good luck and keep us posted about your second opinion.

And so you are having a referral to a GI for another colonoscopy in about 6 weeks right? Sucks you have to wait so long, atleast your symptoms are manageable until then.

Maybe do some research about the GIs in your area and see if you can get a referral to a Top GI. Instead of feeling uncomfortable and having to question the ones you get stuck with :D

Let's be clear about one thing - you had your scope done by a surgeon and he is recommending surgery.

He did not recommend any medical treatments and in fact you had your scope after several weeks of steroids, and you've had no treatment after the steroids were done.

You absolutely must go see a gastroenterologist, and I would not mess around with going to the first one your surgeon recommends. I would call your GP and get three names of GIs who hopefully have a high level of experience with IBD.

I would also suggest that you look at the ccfa.org website (http://www.ccfa.org/living-with-crohns-colitis/find-a-doctor/) to see if any of the names you get are listed there. Ask around your friends, too - you probably have a few with experience in this area.

It is alarming that the biopsies indicate severe disease and you should take this seriously.

I'm confused that you were seen by a surgeon first and not a GI first.