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Ulcerative Colitis
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Posted 1/18/2012 4:02 PM (GMT -5)
Hello! My wife was diagnosed almost 3 years ago with UC. We were living in Phoenix and she had three colonoscopies (after significant flareups) that confirmed the diagnosis both visually and at the microscopic level. We moved this past summer to Durango, CO where she suffered what we believed to be a severe flareup in November. At this point she was taking 6-MP for the colitis and until this flareup had gone 9+ months without a hospitalization (a record since diagnosis). After being put on prednisone and reducing the inflammation, a new colonoscopy was performed by her new GI. The results were no colitis present (visually and microscopically) and they have decided to begin weaning her off the 6-MP as there is no colitis (she had the other drugs that didn't seem to work before the 6-MP). Now we are shocked as to how she can be "cured" and still feel the same. The new GI claimed that it was possible that the UC "burned up." He suggested that perhaps it's been some sort of bacterial infection surfacing with each "flareup." Has anyone else experienced or know of someone who has experienced something similar? They are doing a battery of tests in the upcoming weeks to determine if it was never UC at all, however, the previous THREE colonoscopies were very conclusive. Thanks you for any help.

Mike
Posted 1/18/2012 4:10 PM (GMT -5)
Wow, thats mysterious.
Good news-you don't have UC!
Bad news-you still have all the symptoms but we can't give you meds for it.

Does she still have UC symptoms? If not then cross your fingers and celebrate.
If she still has the symptoms what are they suggesting going forward? IBS? (which shouldn't have bleeding IIRC).
Posted 1/18/2012 4:20 PM (GMT -5)
She still has the symptoms, and she's still on a low dose of prednisone. They are doing a Hydrogen Breath Test to test for bacterial overgrowth, a CT enterography, and a non-surgical hemorrhoid removal along with weaning off the 6-MP. IBS has been ruled out. She was diagnosed with IBS prior to the UC diagnosis for several ears.

We're just tired and frustrated.
Posted 1/18/2012 4:34 PM (GMT -5)
Welcome to the forum...all I can say is wow that is beyond frustrating. Hope they figure out what is going on with her.
Posted 1/18/2012 5:44 PM (GMT -5)
Maybe she had some kind of infectious colitis and she has IBS? Does she have blood in her stool? Sorry to be graphic...

I think there are definitely a lot of misdiagnoses and that's what makes this illness so frustrating.
Posted 1/18/2012 6:03 PM (GMT -5)
Has she been tested for celiac disease?
Posted 1/18/2012 7:03 PM (GMT -5)
Ask for a PCR C Diff stool test if you haven't gotten it already. Please make sure it's PCR and also make sure your insurance covers it (it should). The older C Diff tests have too many false negatives.
Posted 1/18/2012 11:03 PM (GMT -5)
I have a similar story. I dealt with flares on and off for 8 years before I got a colonoscopy (my fault for not going to a dr til then about it). In 2008 had my first scope. It showed "angry pancolitis" as my GI put it. Couldn't tolerate 5ASA's, I refused anything stronger. Treated my colitis with natural meds. 2 years later my next scope shows an almost normal colon, with normal biopsies. GI said everything looks good, see you in 5 years unless symptoms return. I was actually in my GI's office last week b/c I had some blood on my stool. I believe it was from my hemmies, which he agreed, because I don't have colitis he says! Must have been some type of infection during my first scope that they saw he said. It really seems almost too good to be true really. I asked him if during my last scope if I was in complete remission would that show up as normal on the biopsies, he said if I had colitis it would still have shown up in the biopsies. I'm not sure what to believe. I've dealt with flares on and off for over 11 years. Hopefully the colitis did just "burn out". I guess your wife and I are one of the lucky ones...fingers crossed!
Posted 1/18/2012 11:11 PM (GMT -5)
That's great AMK. That's 3 misdiagnoses I've read about in a day or two. I hope something like this happens to all of us!
Posted 1/18/2012 11:16 PM (GMT -5)
mbillar, I live in the Phoenix area also, but I was diagnosed with UC in 2006. When I went to the hospital (age 26) they told me that a lot of young people had been in with UC lately. Then after a nurse told me that, the other nurses didn't want to talk about it citing confidentiality.

I was curious because your wife's colon apparently healed when you moved. But I take it from reading the rest of the story that she is somehow still not feeling well?

I am seeing major improvements in all of my symptoms: UC,joint pain(back,neck was severe), gas and IBS type stuff, since going gluten free. It is certainly worth a try. Please keep me posted, especially due to the Phoenix connection!

[edit] I also find it strange that in the last 10 years I have worked with several people who either had UC or had something going on that made it very likely that they had it - for instance, a middle age guy I worked with had a colostomy bag. This will continue to haunt me, but I have no idea why my symptoms are so far improving going gluten free and what that has to do with locale...
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