@Vickie posted:I was diagnosed with UC in 1999 at 42. My mom had been diagnosed in 1982 with UC. At that time she was on azulfidine and prednisone. She made it to 1986 and then had a traditional ileostomy. I only made it 2 yrs before S - pouch surgery in Omaha. They had me on mesalamine, both oral and suppositories, and was up to prednisone 60 mg a day. Surgery was recommended , no biological available for UC at that time. Remicade had just been approved for Crohn’s. In a way I am glad there wasn’t one available for me, as in 2013 I was diagnosed with Stage 1c ovarian cancer. I had surgery, 4 rounds of chemo, and so far so good. I wonder if the newer stuff would have made my cancer more aggressive?. I do pretty well with my pouch. I have to watch what I eat, drink a lot of fluids, had I hospitalization almost 2 yrs ago with a partial bowel obstruction, that scared me, thank goodness for the gastrograffin that pushed everything thru, so no surgery. I have been a hospital pharmacist for 25 of my 40 yrs. I see very few patients treating UC or Crohn’s anymore with oral meds. Our hospital is 190 beds, but we probably have 8 to 10 patients a week coming in for Remicade, Entyvio, Stelaro. Is it just me or these diseases becoming more common.
Vickie - UC diagnosed 2/1999: S-Pouch surgery with temporary ileostomy 4/2/2001, reconnection to internal S pouch 9/11/01.
Thanks, Vickie. Sorry to hear about the cancer. The biologics are crap in my opinion. The efficacy rates are so low, and even when they do work, it seems like for most people, they don't work very long. And of course, they all terrify me. I waited as long as I could before trying biologics and even Imuran. I'm glad they work for some people, but for me, they have been nothing but 2 years of wasted time, money, energy, and stress!
If you see this, do you mind sharing if obstructions are common with the pouch and how do you get one? Eating certain things? I've read a lot about obstructions or blockages with the ileostomy but not as much with the pouch so I'm less familiar with that. I am worried about diet because with UC, I eat whatever I want and I'm vegan but maybe it would be ok. Thanks. By the way, my mom lives in Fremont. I have been to Omaha many times.