I’m a Program Manager at large credit card company, 47, male, Chicago, Ulcerative Colitis diagnosed in 2009, married with two kids and otherwise a healthy human being. On my 6th drug for UC out of a possible 7 or 8 per my GI and potentially nearing surgery decision.
Some more about Amit:
I sold my first web page to mortgage broker in 1996 using Netscape 1.0. My favorite instrument is the tabla and I like reading my kids’ novels that they read for school.
10-15 BM per day. Abdominal pain after most BMs. Food intake triggers BM. Blood in stool.
Scope in March of 2018 – completely clean / full remission, 40 biopsies all negative from colonoscopy.
Flex Sig in May 2018 – moderate colitis, biopsies positive.
Amit’s Ulcerative Colitis Story:
I was diagnosed with UC in 2009 as I was starting my MBA program while working full time. It was stressful as my kids were small and required a lot of attention. Stress was high. I have been hospitalized 5 times for it requiring IV steroids. Seemingly each hospital stay required a new medicine. I have also visited Mayo Clinic for 4 days and the University of Chicago GI dept.
My doctor informed me on my last visit I may need surgery as Simponi is not working, Humira is in the same class as 2 other drugs that failed and Tofacitinib is only been on the market here for 10 weeks.
To those that chose surgery – would you have tried anything before that which is available today such as fecal transplants, drugs just approved like Tofacitinib (25% rate of shingles in patients), or serious alternative therapies.
My doctor is well versed and head of the dept of a major hospital and still will not EVER address diet in anyway. Previous GI’s have told me that since I am on the meds I can eat whatever I please.
I am still very shocked that they would choose not to empower their patients with materials.
Perhaps this is specific to the doctors in the US as I have asked doctors about reducing inflammation with turmeric and their response if I am lucky is, “There is no evidence proving that would help …”
Is there anything you might ask your doctor to try besides surgery and medication??
Are there non-allopathic clinics or healers you would recommend for someone at this juncture?
Currently taking Simponi, Imuran – 50mg, Lialda, Canasa, Tramadol, and was asked to get a Shingrix shot in preparation for the newest medicine approved for UC – Tofacitinib. I am 1 or 2 meds from surgery and want to be prepared to make a decision.
Initially, Lialda (mesalamine) worked just fine for a few years. After the 1st hospital inpatient stay Imuran was added. After another stay 6MP was added and the blood tests which are periodic determined it was causing liver toxicity. After it was determined immunosuppressents were not working – I was introduced to biologics as the next line of defense – First Remicade then Entyvio and now Simponit (after a hospital stay). Currently w/ Simponi I still take Lialda and Imuran as part of combo therapy. This current regime is not working and I have been in a flare for 2 months. However, on my last visit my doctor mentioned surgery. It was the first time ever and he asked me to “not look depressed” and the alternatives were – Humira would have a 10% chance of working or Tofacitinib which something I would like to have feedback on from anyone on this site. So my options are increase frequency of Simponi which I am starting today, Humira (low success rate for me), Tofa citinib (little data on this) or surgery which my Dr. believes will improve my quality of life. After reading about the procedure and still going 6 times/day + potentially more meds I am not convinced.
written by Amit
Submitted in the colitis venting area