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Ulcerative Colitis
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Posted 4/8/2013 5:10 PM (GMT 0)

I am so confused and so done!  Dx on February 18 after sigmoid showed a great amount of inflammation, (my 2nd Dr.) said, without a doubt you have UC, put me on Lialda, Pred, donnatol, and vancomycan (sorry if my spelling is off)  I was already taking prilosic and Align.  Fast forward 4 weeks, Dr. did another Sigmoid, symptoms weren’t really getting any better, except no more bloody D.  Sigmoid showed NO sign of inflammation – he said that now he wasn’t convinced it is UC.  I was “FULL” (he didn’t have me do a prep) – and the following week had an x-ray and the same thing “full” – even though I’m having D 3-5 times a day, still filling up.  He took me off Lialida, finished my taper last Thursday, finished the Vancomycan a week and half ago.  He put me on VSL #3 DS 2x a day, and a Miralex every other day.   I have had more “good days” then bad, until last night.  Horrible pains right upper (near gallbladder, except I’ve have multiple MRI’s/ultra sounds – and gallbladder is “very healthy”) – and pains all across my lower abdomen.  And today 5 full bloody/mucus formed “medium sized ball type BM’s).   I called Dr. and he wants to see me again.  Could this be “just” IBS, is it UC? 

 

FYI, I had a colonoscopy in December, and it showed 2cm of inflammation, the Dr. at that time, said I “was fine” .

 

Any advice (different tests?), meds?  Questions to ask Dr…. would be appreciated.

Posted 4/8/2013 6:37 PM (GMT 0)
Did any of these doctors take biopsies during your scopes? It sound like perhaps they think you are suffering from IBS as opposed to UC... a biopsy of the inflamed region would help greatly, and is standard procedure.
Posted 4/8/2013 6:40 PM (GMT 0)
He did (for the 2nd sigmoid) the first one I was fully awake and in pain. Results said "non-specific colitis"?
Posted 4/8/2013 7:13 PM (GMT 0)
I can so relate to everything you have posted. I dealt with this for three years, and had an awful time getting a definite diagnosis. I was having bloody D, mucous, huge blood clots the whole nine yards and was told there was no inflammation that maybe I had a hemmie? Seriously? Next flare they told me it HAD to be C-diff even though I tested negative for it, not once but twice. Finally a flex sig showed moderate inflammation and the biopsies came back the same as yours "non specific colitis" and my GI said at this point he "THINKS" I have UC. I dumped him, because I was getting MUCH sicker. Found a wonderful GI at a University hospital... best in our state. He repeated all of my tests, did a new scope and also checked for celiac (which is something you may want to consider getting tested for as well) He FINALLY gave me a definite diagnosis of moderately severe UC which had progressed to half my colon by this time. He has got me on the right track. I know how terribly frustrating it is to not get solid information. If I were you, I would consider getting a second opinion. I went to 3 GI's before I finally found one that really worked for me, listened to me and got me on the way to remission. Good luck to you!
Posted 4/9/2013 6:56 AM (GMT 0)
Hi CMCD,

I see that in your signature you mentioned you have Ank Spon too. Believe it or not, this may be a good thing. Infliximab is an amazing IV treatment for both UC and ank spon. If you do, sadly, have UC, then try your hardest to get onto this drug.

Before this drug i was a feeble border-line cripple because of my ank spon, and now I can play sports and do whatever i want. Gives great results for UC too. It's administered by IV in a hospital (usually) every 6 weeks. The infusion takes about 3-4 hours. It's my miracle drug, that's for sure.

Get yourself a good GI, get infliximab, and get back to living your life.

P.S watch out for psoriasis. The lovely gene HLA-B27 gene gave me that too. But guess what? Infliximab cures psoriasis too.
Posted 4/9/2013 1:38 PM (GMT 0)
I don't think IBS would cause bloody D. You also had the colitis show up in the biopsy so you must have some sort of colitis. Whether it's UC or just colitis is the question. I think it's great that you took the antibiotic, perhaps you are improving? I am surprised on the other hand that he gave you vancomycin instead of something more traditional like flagyl/cipro. Hopefully you're able to get this under control with antibiotics and it's not something that requires long-term maintenance medication. Have you considered having a full colonoscopy to see whether you have inflammation elsewhere in your colon?

How long have you been dealing with symptoms?
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