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Ulcerative Colitis questions: Confused and frustrated
I have been navigating a UC diagnosis for about the last 6 months. Previously the stool bleeding was diagnosed as hemmeroidal, but things continued to progress until a colonoscopy revealed serious inflammation in the colon. After a grade 3 diagnosis, the doctors pushed for humira. I tried a very strict, anti-inflammatory diet first, and it helped a lot. Still a little blood in the stool tho. So tried mesalamine both oral and the suppository. I thought things were improving using b, as the color I saw in the stool was purple rather than red, but doctors said it was still blood and pushed again for humira. I took their advice and am now approaching the 7th injection. I have more bleeding now than ever and I have abdominal pain and urgency. I am definitely in the middle of one of my worst flareups. Anyone out there have a similar story and advice? I'm feeling confused and frustrated.
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I take the capsule and have been for years! I am still on the higher dose of Remicade (10mg/kg) IV infusion every 6 weeks. He started me at that dose every 4 weeks, then after a year and a half, every 5 weeks and now, every 6 weeks. GI doctor does therapeutic drug monitoring to check trough levels and antibody titers, which determines what is in my system and if it is effective, based on inflammation markers, which have been in a normal range, and for all of this I am extremely grateful!!! Thank you for asking. I wish you a long remission and for all of us, ultimately a cure!! 🙏🏻
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3 ReactionsI also live in central NJ. Red Bank area. My drs are in NYC , looking for a dr closer to home for my UC. Could you share your dr’s name please?
Of course! Since this posting, much has happened! I developed antibodies to the Entyvio and was switched to Stelara, which did NOT do anything for me. I had 16 months of pure hell, flaring, 5 hospitalizations, lots of prednisone (both oral and IV) and finally, a higher dose of Remicade (infliximab) infusions (10 mg/kg) every 4 weeks got me back into remission. Once again my brilliant GI doc had to battle my insurance company to get authorization for the higher dose, as I was barely 100 pounds. While waiting, I had scheduled a proctocolectomy and was able to cancel that less than 2 weeks before it was to happen. The colorectal surgeon is at the same hospital. I have been in remission over 2 years and get the Remicade infusions every 6 weeks now. My GI doc does therapeutic drug monitoring to test inflammation markers, trough levels and antibody titers every few months to make sure the levels are adequate and that I have not developed antibodies. I am blessed to have this brilliant caring doctor! His name is Anil Balani, MD and he is with Capital Health. Good luck to you!!
Thank you! I’m presently on Humira weekly ( just started weekly) . Only have had 3 weekly doses and hasn’t helped. Dr wants me to continue for a few more weeks -(even though been on it every 2 weeks since November). Making me feel so nauseous and tired. I’m looking forward to changing meds and feeling better.
I’m so sorry and I understand the frustration and devastation! This is a life altering disease, a roller coaster of hell, if you will… Remicade was my first and only TNF inhibitor and I’m grateful it is working, but the fear never goes away…. The one positive for all of us is that several newer drugs have been developed, with different mechanisms of action. They scare me, too, but my doctor taught me to focus on benefits vs. risks. So I take it one day at a time and try to be grateful that the good days now outnumber the bad ones… and my GI doc stays on top of it should things get bad again… 🙏🏻. I wish you the best and a very long remission!
I have ulcerated colitis and had colon cancer removed and now have an ostomy bag. Can I eat salads, or Italian food?
I had UC & ostomy for about 30 years, and eat salads, Italian, nuts, popcorn, but do so in moderation and chew-chew everything very well.
Start with small portions at a time.
Good Luck
Thank you so much. I really do miss those foods. But, will take it slow.