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Ulcerative Colitis
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Posted 10/21/2009 11:28 PM (GMT 0)
In March-April of this year I had two colonoscopies and a barium enema. One doctor said inflammation to 35 cm (as far as they could go with the scope due to inflammation). Biopsy report said chronic moderate colitis. I also had diverticular disease. Referred to a specialist that did another colonoscopy and said no inflammation and diagnosed me with IBS. My original GI disagreed and put me on Entocort and Asacol to treat UC. I couldn't tolerate Asacol and it wasn't helping. Went back in today after a serious episode of bleeding and cramping yesterday (bleeding and diarrhea off and on since Feb.) only to be told that they really don't know what is wrong. I am scheduled for a flex sig in the morning. Aaargghhh...what is the point of more testing? Not only that but he said we had pretty much exhausted the medications they can use to treat this. Asacol, Colazol, Immodium and Entocort are not the only medicines to treat colitis!!!! Any suggestions for questions to ask after tomorrow's test? Anyone else get conflicting diagnosis? I am just so frustrated and tired of invasive test when nothing seems to be working and my doctors can't even agree on what the problem is! Thanks for listening to the rant. eyes
Posted 10/21/2009 11:46 PM (GMT 0)
Well, wow...that sucks!

Can you get a new GI?

And I know it's not fool-proof, but the Prometheus test helped diagnose me. Is that available where you are? It's just a blood test, so totally non-invasive. I def. had colitis though, the just didn't know if it was Crohn's or UC at first. But I had an upper GI and the Prometheus test and that showed UC.

Good luck. Hang in there and hopefully you can get sorted out.
Posted 10/22/2009 12:27 AM (GMT 0)
No one has mentioned the prometheus test...that may be something I need to ask about. The part that really has me so annoyed is that I really like my GI. He listens, takes his time, has a great bedside manner, I am just concerned that we aren't getting anywhere.
Posted 10/22/2009 1:37 AM (GMT 0)

aned said...
In March-April of this year I had two colonoscopies and a barium enema. One doctor said inflammation to 35 cm (as far as they could go with the scope due to inflammation). Biopsy report said chronic moderate colitis. I also had diverticular disease. Referred to a specialist that did another colonoscopy and said no inflammation and diagnosed me with IBS. My original GI disagreed and put me on Entocort and Asacol to treat UC. I couldn't tolerate Asacol and it wasn't helping. Went back in today after a serious episode of bleeding and cramping yesterday (bleeding and diarrhea off and on since Feb.) only to be told that they really don't know what is wrong. I am scheduled for a flex sig in the morning. Aaargghhh...what is the point of more testing? Not only that but he said we had pretty much exhausted the medications they can use to treat this. Asacol, Colazol, Immodium and Entocort are not the only medicines to treat colitis!!!! Any suggestions for questions to ask after tomorrow's test? Anyone else get conflicting diagnosis? I am just so frustrated and tired of invasive test when nothing seems to be working and my doctors can't even agree on what the problem is! Thanks for listening to the rant. eyes

a steroid is the only thing that helps me.
Posted 10/22/2009 1:39 AM (GMT 0)
Entocort is a steroid and it did nothing to help. My GI has never mentioned pred. I guess that is a good thing because I would be really hesitant when they can't even say for sure it is UC.
Posted 10/22/2009 1:45 AM (GMT 0)

aned - I had the promethius tests for celiac and several other things - including to see if 6MP was therapeutic for me.  Here is their website.  It is expensive - be sure to check what insurance will pay.

ElaineNY

http://www.prometheuspatients.com/Products_Diagnostics.asp

Posted 10/22/2009 2:05 AM (GMT 0)
Thanks for the info. I am really dreading having this done. My doctor ordered sedation for the procedure so I am thankful for that. I think I just have a negative feeling because after the barium enema in April I ended up in the hospital with diverticular disease that I think was aggravated by the barium. I know it is nothing to be concerned about, but I am tired of the "we have no clue so lets just have another look" mentality.
Posted 10/22/2009 2:31 AM (GMT 0)

aned said...
Entocort is a steroid and it did nothing to help. My GI has never mentioned pred. I guess that is a good thing because I would be really hesitant when they can't even say for sure it is UC.

a firm diagnosis is best, although sooner is better than later in order to get a firm treatment.  my doctors gave me the run-around for six months when first diagnosing me, so that it delayed successful treatment.  they're basically worried about legal liability issues if it be that they mis-diagnose you and therefore prescribe the wrong medications.  they'd rather give no dianosis at all than give a wrong diagnosis, but that works bad for you not to have a firm diagnosis.
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