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...

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.

I'm really afraid to start RemiCade. Lots of potential side effects including cancers! I'm going to refuse that one if suggested. My Dr. is suggesting a double balloon procedure to check the small intestine too. Any body know if the small intestine is involved in ulcerative colitis? I've never heard of it but my large bowel scopes look great. Maria.

Good morning to all of you..my ulcerative colitis was in remission for over 20 years until I got Covid 12/19/21. I was on a lot of different meds that did not work, mesalamine products, lialda , enemas , anucort suppositories, and the last one was Budesonide which I had many side effects, after just several weeks I had to be hospitalized and had a emergency colonoscopy. I was so inflammed the doctor could not get all the polyps out which does not set well with me, due to cancer risks. I finally went to another doctor one time and asked for a tapering dose for the budesonide. I did the taper fast and wound up going through a withdrawl from the medication. It caused some problems with my cortisol level as you do not make it when you are on steroids and my A1C hemoglobin shot up..luckily I did not get full blown diabetes, but my levels are being re-checked next week. My hemoglobin and iron levels were lower which showed I may have anemia. They wanted me to take Entyvio but so far I have refused, I had Remicade once and I had some sort of reaction from it. I do not like the side effects they have published about the Entyvio, it scares me and I told my physicians so. I am off all the colitis drugs at this point. Mayo Clinic has an IBD Biobank study which I have enrolled in. I hope I get accepted. The number to call for Rochester patients is 507-538-0678. I lost a lot of weight because there was hardly anything that I could eat. I use gluten free bread which I buy at Walmart the brand is Schar, it has a good flavor and a better price. I take Gas X which I buy at Costco, better price ..it helps, apples are hard on you and any skinned fruits. I still do not eat fresh fruits or vegtables, I can not tolerate them. This is a tough disease as it controls you, I was so isolated for so long and with it comes the depression as I am so worried about having accidents in public, it affects my job and life itself, but I hope someday they can find something to help us. They already know that Covid had an effect on our immune and digestive systems. I have been in a flare since 12/19/21 and I pray that some day it stops. Hang in there..Kitty2