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2 years with symptoms and still no official diagnosis

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Ulcerative Colitis
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Posted 1/7/2012 2:54 AM (GMT 0)
Hello,

My husband has been dealing with what we were told was UC by his GI, and has run the gamit on medications: Prednisone, Asacol, Lialda, Remicade (3 infusions) - and nothing has helped. He just had another colonoscopy this past Tuesday, now his GI is saying it's looking more like Crohn's, although he has none of the specific symptoms of Crohn's. I'm insisting we change GI's, and saw someone else today, who is referring us to an IBD Specialist.

My question is can it take that long to get a clear diagnosis? And, my other question is, on a separate issue, if bowel movements are unproductive, meaning only bloody mucous produced, as is the case with husband, where does the food he's eating going? 

Appreciate all your support as this is still overwhelming for me.

Posted 1/7/2012 8:21 AM (GMT 0)
Info on his symtoms could help. I would also go to another doctor aswell and get a second opinion.
Posted 1/7/2012 3:19 PM (GMT 0)
Seeing another specialist Dr a must but I had bloud and mucous for over 18mth meds did not work and I also wondered where all the food went because I did not poo very much and it was tiny smaller than little finger width but long. Mind you I wwent to the GP because I was exhausted all the time thinking I might be anemic but I wasn't alget blood test results he said the body will produce more blood, to compensate for the loss. Also is your husbands blood dark or bright red or a combination of both and always worse of a morning

mum of 3
Posted 1/7/2012 3:48 PM (GMT 0)
Unfortunately it can take a while, and possibly never be too clear. Definitely get a second, and even third, opinion if you don't feel like you're getting the answers you need.

Technically I have "Indeterminate IBD" so they aren't sure which I have, though now we're heavily leaning towards UC. While it can make a difference in treatment in many ways it doesn't make too much of a difference and could be helpful in that GIs won't necessarily discriminate towards one medication route or another since they aren't positive. Plus, trying things can give you clues to what it is or is not (ie. not responding well to Humira suggested to my GI my diagnosis is likely more UC).
Posted 1/7/2012 6:16 PM (GMT 0)
Thank you all for yuor esponses -

mum of 3: my husband's blood is a combination, mostly dark, and sometiomes bright, and more urgencies in the morning. Not much pain, but he's been flaring now for 6 months.

mkl11: wow, sounds like you been you through a lot. How are you feeling?

gregl: my husband's symptoms include frequent urgencies (10 - 12 trips to the bathroom per day, down from 20), unproductive bowel movements with only bloody mucous, some pain during bowel movements like his colon is having spasms, weight loss (down from 215lbs to 185lbs in 6 months, some days more lethargic than others.
Posted 1/7/2012 10:30 PM (GMT 0)
Has your husband tried any rectal meds? If not I would highly suggest them. Rowasa enemas really help with bleeding for many people.
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