Anyone failing on Entyvio for moderate to severe ulcerative colitis?

What are your levels? I know my Remicade looked good on tests but it just quit working.

I failed Humira, Entivyo and Remicade for UC. Just started Stelara but seeing Mayo Scottsdale July 31t and I think I will go ahead with surgery.

I'm on 300 every 2 months. I'm sorry. Will you have to live with a bag or do they do J-Pouch? I'm 64 so will not have surgery. It's so weird all those tests show nothing! Feel like a guinea pig. Keep me updated. Thanks.

I'm 64 years old and afraid to switch to a new biologic with more side effects. Which may not work either. Is all this just a guessing game with Mayo? Going up again in August for GI. Is surgery ever suggested for the elderly? Why can't they come up with fecal transplants for UC like for C-Diff? Anyway, does surgery improve eating habits or make them worse? Is a bag permanent? Maria.

I've only been on Entyvio since October; had been on Remicade for 13 years with good success, but was taken off of it when I was diagnosed with lupus. (Lupus not from the Remicade, but apparently it isn't a good drug for lupus people.) I was doing fine at first, but am starting to have difficulty -- mucous and pain -- and am a bit worried. Re: diet. I have found in the past that I do better if I lay off the starches (baked goods, potatoes, rice, etc.) and fill up on soups, cooked veg, lean meats and fish. Perhaps this might help you, mariajean. Wishing us both luck!

Thank you. I do believe you should not be so limited in your diet if Entyvio is working. I'm sure you're reporting this to GI Doc and hope the best for you. Thanks for the thumbs up on Remicade. In those 13 years what do you mean by doing so well? Able to eat a variety of foods? Any side effects from the drug? So scared about switching but I guess I'll leave that up to Mayo. Please write again and let me know your progress. Maria.

I also have celiac disease, so am strictly gluten free but nonetheless seem hypersensitive to certain foods. The theory is leaky gut -- upper intestine, nothing to do with the UC. I didn't have side effects from the Remicade; occasionally I would have a few weeks with mucous in the stool or more frequent bowel movements, but things would go back to normal pretty quickly. Wishing you all the best...

Thank you dear! I'll keep you updated if I can find you again on this forum! Maria.

Either one. Would prefer no bag but worry I would still have issues if I have a pouch.

Hi @mariajean03
I’ve been meaning for weeks to reply here. I was just recently switched from Envtyio to Remicade. I’ve been living with Ulcerative Colitis for 23 years. Back in September I was started on Entyvio and took it for 3 months, I had high hopes but colonoscopy showed it wasn’t working for me. My UC has progressed to bleeding in the colon which drops my blood count drastically. I’m praying Remicaide works because this new severity is a bit worrying. I’m still in the introductory stages. It sad that there isn’t a steroid drug that can help you out. I’m on Prednisone and whenever I’m having a flare it helps a lot to calm it down. I do believe diet is important but haven’t found one that works right for me. I definitely stay away from foods that cause bloating and diarrhea for me like milk products, broccoli.
Wishing you all the best.
Jinja320

Red sauces and creamy sauces and spices are really bad for colitis. Ask your doctor about Prednisone Enemas. A friend was on Mesalamine HD (delay released) 800 mg (Asacol is brand name), 2 pills, three times a day, and now 4 pills a day. When he gets very sick, he just eats crackers and Campbell tomato soup) for days. You need to let colon rest. Aso stress makes the UC worse. Searched Internet: " Balsalazide, mesalamine, olsalazine, and sulfasalazine are the main medications used to treat ulcerative colitis. They come in pills and suppositories. Let your doctor know if you are allergic to sulfa before taking one of these drugs. They can prescribe a sulfa-free 5-ASA.". If you need more info on this med you can find it on mayo clinic.org. And there might be other new pills as well.