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Ulcerative Colitis questions: Confused and frustrated

Digestive Health | Last Active: May 29 4:10pm | Replies (22)

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@amandajro

Hello @liss75 and welcome to Mayo Clinic Connect. I noticed that you wanted to connect with members on the topic of ulcerative colitis so you will see that I have moved your post into an existing discussion on the same topic which you can find here: https://connect.mayoclinic.org/discussion/ulcerative-colitis-questions/

Perhaps member @dval can join you and share more?

While we wait for others to join, I found some information that may be helpful to you.
- Ulcerative Colitis - Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/diagnosis-treatment/drc-20353331

How long have you been on your current medication regimen you described above?

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Replies to "Hello @liss75 and welcome to Mayo Clinic Connect. I noticed that you wanted to connect with..."

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!