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Wrong diagnosis after 13 years

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Ulcerative Colitis
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Posted 12/20/2020 6:44 AM (GMT -7)
I was hospitalized this week because of symptoms that simply won’t go away. Blood, mucus, urgency, hard time passing stool. I had a sigmoidoscopy in November and had moderate inflammation. My GI started me on Xeljanz and things didn’t really get any better and the bleeding got worse. Early December I called the GI back and she started me on Pred. Started seeing less blood but still having symptoms. She admitted me to the hospital for a few days for IV steroids. She did another sigmoidoscopy before I left and said that there is a bit less inflamation but not as much as she would like. She also mentionned that she saw narrowing of the colon and also scar tissue and that is normally seen in Crohn’s patients and not UC patients. sad this is scaring me a bit. I am still having a hard time passing stool but things are moving in my GI track and I am passing gas. I will talk to my GI again in Jan. I never expected I was going to hear this news. sad
Posted 12/20/2020 9:31 AM (GMT -7)
Hi Cyn sorry to hear that - but, knowledge is power and it might explain why xeljanz isn't working, as it's better suited for uc than crohn's. On the other hand I've had scopes while flaring which showed narrowing in the sigmoid colon but biopsies and diagnosis were still "consistent with ulcerative colitis". I thought any chronic inflammation can narrow the bowel? Can you not get a full colonoscopy? Would have thought that would be better for distinguishing the two. Also, is stelara an option? It works faster than entyvio. Take care.
Posted 12/20/2020 11:46 AM (GMT -7)
She didn’t want to do a full colonoscopy to irritate my gut more than it is. Now just need to find a way to soften my stool without injuring myself more cause I am having a hard time passing stool. I have been using salofalk suppositories but I don’t think it’s helping enough. I will start using the foam enemas I have at home to see if it helps. I’m scared of having an obstruction but I think I’m ok at the moment cause I did have a bowel movement a few days ago. I’ve only used Remicade so far so pretty sure there are a lot of other options. She did let me go home for the holidays but I am going to speak to her in early January.
Posted 12/20/2020 1:05 PM (GMT -7)
Sorry that you have this problem, but I don't think your doctor should conclude that you have Crohn's rather than UC on the basis of sigmoidoscopy alone. A UC colon can exhibit both narrowing of the lumen and/or scarring over time. Some types of narrowing are reversible; I know that from an episode I had after treatment with Cipro for a non-GI infection. (The lumen of my colon nearly closed on lower left side!) Narrowing makes it hard to pass stool. Keep yourself well-hydrated and, if you tolerate solid food, try eating some well-steamed yam or sweet potato (extra-moist). That helped me a lot, but I also needed a course of Prednisone, tapered over 3 months, to reverse the narrowing. Take care and try to keep calm. I know that kind of situation can be scary. / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
Posted 12/20/2020 5:38 PM (GMT -7)
ahh soory to hear this. This times can be very hopeless, give a little time to the xeljanz and our illness can chaneged colitis to chrohn....
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