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Given UC Diagnosis Today. Very confused by what the doctor told me

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Ulcerative Colitis
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Posted 8/25/2009 10:06 PM (GMT 0)
I had a colonoscopy (and upper endoscopy) last week. Today the doctor told me I have "active Colitis." He said most of the inflammation/damage is on the right side and transverse sections then things are much better on the descending side and the rectum looks pretty good. That sounds so backwards to me. From what I've read it starts in the rectum and should be continuous (not broken up with healthy tissue).

He wants me to go on an elimination diet. No dairy, grains, eggs, legumes, processed foods, sweeteners (except small amounts of honey). He says he's had other Colitis patients and the ones that were serious about the diet were cured. I've read that it's important to eat a healthy diet, and that some foods can trigger flares in certain people, but that diet isn't the cause or cure of the disease.

He's a Surgeon, not a GI. My doctor sends patients to him to get colonscopies. It seemed like my doctor intended to treat me, but it looks like my results haven't been sent back to him.

I feel very confused and anxious. I've been reading a lot about UC and everything I've read has a similar description of the disease, but what he's telling me doesn't seem to square with what I've read. Have I been reading incomplete/incorrect information? Do other UC patients have similar experiences?
Posted 8/25/2009 10:29 PM (GMT 0)
Welcome to HealingWell. I can certainly understand why you're confused by what the doctor told you. And if he told you people were "cured" by diet, I'd question his competency. I'd consider asking for a referral to a GI specialist.

You're correct in that ulcerative colitis starts in the rectum and presents an unbroken pattern for as far as it extends. However, there are other kinds of colitis - infectious, Crohns colitis to name just two. So I think first you need to clarify exactly what type you're diagnosed with.
Then I'd work on seeing a GI doctor to get started on appropriate treatment.

Good luck, and good on you for educating yourself!
Posted 8/25/2009 10:30 PM (GMT 0)
Your best bet would be to get in to see an actual GI. I've had everyone from my grandmother to the x-ray technician to my PCP tell me 'how to cure it' and half the time they think that UC is just IBS. I'm no doctor and based on what you were told about the scope results, I'm just as confused as you are.

My similar experience: The first two times I went in for my symptoms, I was turned away immediately by the doctor and told that I had a cold/virus. The blood and mucous in the stool didn't mean a thing and 12 trips to the bathroom a day was just another viral symptom. It was three months before I finally got a doctor (I'm military, so we see a different white coat everytime we go to medical) who thought to take a stool sample and refer me to a GI.

Best of luck to you and hopefully you can get in to see someone who will be able to give you a concrete diagnosis.
Posted 8/25/2009 10:55 PM (GMT 0)
Thank you for your replies. I thought during this visit the doctor and I would talk and hammer out a very specific diagnosis. Instead of just saying "you have some active colitis". This is stressful. I don't like going to the doctor but when I do I like to get a specific reasonable answer to the problem I'm having. I've never been to a specialist before. The only time I've switched doctors is when I started going to a GP instead of a Pediatrician. I'm not sure what I need to do to switch specialists, but it probably depends on my insurance. Hopefully I won't have to go back to my GP and get another referral.
Posted 8/25/2009 10:59 PM (GMT 0)
Oh I should introduce myself briefly. Sorry I was a little freaked after my appointment.

I'm 29 years old. I live in Oregon. I work in IT. I like dogs and the outdoors.
Posted 8/25/2009 11:21 PM (GMT 0)
What part of Oregon do you live in? I'm pretty happy with my GI doctors so far (we just moved to Oregon about a year ago). I go to the Corvallis Clinic.
Posted 8/25/2009 11:50 PM (GMT 0)
I'm in Silverton. There's a GI in town that everyone speaks fairly highly of. Corvallis would be a bit of a drive, thanks though.
Posted 8/26/2009 1:31 AM (GMT 0)
My daughter's Ulcerative colitis shows itself in the same places yours does. She basically has right sided colitis (actually she has pancolitis, but the worst is on the right side). I sometimes wonder if that really means Crohn's, but biopsies and the Prometheus test both say UC, so not everyone has the classic version of the disease.

Hope you get some answers when you actually see your GI.

Diet is personal. My son eats anything and everything, but does stay away from pop corn - he is a junk food junkie!! My daughter has had a small flare from eating pop corn so we don't take chances anymore. Thankfully we have found "Puff Corn" which tastes like pop corn with no hulls.

Sorry you have had to find your way to healing well, but welcome!!
Posted 8/26/2009 6:44 AM (GMT 0)
Active colitis doesn't mean UC, and hopefully the doc took LOTS of biopsies to check you for microscopic colitis and anything else that can be verified.

Do you have a copy of the pathology report? I would strongly suggest you get one.

Did the doc put you on amy meds?

Are you having any bleeding at all?

You need to go see a GI....truly....and have an actual diagnosis.

It doesn't sound like UC to me, however....

Did you have stool samples done as well?

Welcome to the forum!
quincy
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