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Ulcerative Colitis questions: Confused and frustrated

Digestive Health | Last Active: Mar 30 1:53pm | Replies (19)

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@liss75

Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day
Salofalk 4 a day..
Started bleeding again this week. HELP

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Replies to "Any advice on panacolitis. Especially managing it. I'm on Panafcortelone 8 a day Salofalk 4 a..."

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?

I have pancolitis too. It has only been a few years but I started with proctitis, which has evolved into full blown pancolitis! The mesalamine (oral and rectal) only helped for a few months and then I tried my first biologic (Entyvio) which worked beautifully for 13 months until I stopped responding. After that was Stelara, which didn’t do much at all. Finally I was prescribed Remicade which worked somewhat and then my GI doc fought to get insurance authorization for a higher dose of Remicade and every 4 weeks at that! So far, so good. For 16 months I was flaring horribly, several hospitalizations, malnourished, under 100 pounds and on mega doses of IV and oral prednisone. Fecal calprotectin was 1280 and I had met with a colorectal surgeon and scheduled a proctocolectomy. The higher dose of Remicade seems to be working and I am cautiously optimistic… Pancolitis is the most severe form of UC, so you may want to think about biologics or one of the newer orals that have been approved over the past year or so (Rinvoq, Zeposia, Xeljanz). There are others and they have different mechanisms of action. Talk to your doctor and decide which one you’re comfortable with… I was thrilled with Entyvio- it has a decent safety profile and it worked for me for over a year. The Remicade is one of the older biologics (TNF inhibitor) but I needed a higher dose for it to work completely. You and your GI doc can decide what is best for you! I wish you the very best of luck and a long remission!