← Return to Ulcerative Colitis questions: Confused and frustrated

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@dval

Hi Dval here… So much has changed on my roller coaster of hell journey with UC. Entyvio had kept me in clinical and endoscopic remission for 13 months! I felt so good, there were days I forget I had UC! Then I stopped responding and the symptoms returned with a vengeance! In a 16 month period, I went from Entyvio to Stelara to Remicade (with lots of both IV and oral prednisone along the way), and was still flaring! I was hospitalized 5 times during these 16 months, was down to 99 pounds and had scheduled a proctocolectomy. My brilliant GI doctor fought my insurance company to get authorization for a higher dose of Remicade because it did work during the loading doses and I did not have antibodies. It took him 3 months to get authorization because of my low weight. My fecal calprotectin was 1280!!! The higher dose of Remicade, every 4 weeks, seems to be working!! My calprotectin is 27 and I am maintaining my weight! My colonoscopy in July 2022 showed much mucosal healing. So I am cautiously optimistic that the Remicade will continue to work and if not, there are several new drugs with different mechanisms of action that have been approved and I am hopeful… With that being said, I have not ruled out the surgery, as I don’t know if I can go back on that roller coaster of hell…. That’s my story thus far. Other than the Ulcerative Colitis, my health has always been good. I continue a whole food, mostly plant based diet and I walk 4-5 miles a day and do yoga. I also pray a lot… Wishing all of us better health, hope and ultimately a cure for IBD!

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Replies to "Hi Dval here… So much has changed on my roller coaster of hell journey with UC...."

I have been dealing with my UC for almost 2 years now I started on Remicade and it was the miracle drug I believed. It took away all my pain in my stomach also stopped my constant diarrhea and nausea. After being on the Remicade infusions for a year I started to have a lot of pain in my joints and bones and I was getting blurry vision so my doctor did some tests . They said the Remicade gave me drug induced lupus! So they took me off of it and started me on and Entyvio I have had four infusions and so far nothing I am back to the beginning severe stomach pains severe diarrhea severe nausea. Have you had any trouble with the Remicade I keep asking my doctors to please put me back on it I never felt so great as is when I was on the Remicade. All I do is cry and that's not good.