I was diagnosed with ulcerative colitis in 2015. I was initially treated by a gastroenterologist who almost killed me when he prescribed 6-Mercaptopurine. I was prescribed every TNF inhibitor and biologic on the market. Nothing worked except Prednisone. As a result of long-term Prednisone use I developed bilateral cataracts and osteoporosis. In 2019, while awaiting scheduling for J-Pouch surgery I suffered a complete fracture of my distal femur, requiring surgery and placement of a titanium rod and screws (I’m still recovering from this).
In February, 2020 I underwent stage 1/3
J-Pouch surgery. Following surgery, despite taking Lovenox, I developed DVTs in hepatic, splenic and mesenteric veins. This required a week of hospitalization for Heparin and 2 months of Lovenox.
My temporary ileostomy was a nightmare! I can’t thank the Cleveland Clinic Ostomy nurses enough for their care and expertise. With the ileostomy very little nutrition was absorbed, I was hospitalized 4 times for dehydration and malnutrition, and lost over 60 pounds, including muscle mass. I looked like a walking skeleton (and walking wasn’t easy due to the fractured femur). All of these events delayed the next 2 stages of
J-Pouch surgery. My last surgery and ileostomy take-down was December, 2020. I have come out on the other side of all of this, and now enjoy relatively good health. My diet has liberalized some with the J-Pouch, but is restrictive in a good way. I try to follow the Specific Carbohydrate Diet, as it is what keeps me most comfortable. The only GI-related medications I take are a daily probiotic, and Cholestyramine as needed for burning stools (which can usually be controlled with diet). I support the use of a skin barrier with each BM. For the most part, petroleum jelly (Vaseline) is effective, but when skin is very sore I change to Zinc Oxide. Personal hygiene is a 3-4 time/day activity, including showers day and night.
The Cleveland Clinic Department of GI Surgery is second to none in surgical techniques for J-Pouch surgery, and in particular Bradley Champagne MD and his team of professionals. He saved my life and my sanity.
One complaint I have in this whole process is that when a diagnosis of ulcerative colitis is made, why nutrition management isn’t as big a part of treatment as biologics. I only learned of the benefits of the Specific Carbohydrate Diet AFTER taking multiple medications (that didn’t work!) and AFTER my total colectomy. I learned about it not from a physician or dietician, but from doing my own investigating.
I do hope that each if you is able to find the right plan that allows you to have a comfortable and healthy life for many years to come.