Concern about Biologics

I was diagnosed with UC twenty years ago. I have had no hospitizations or surgeries due to my UC thus far. I take oral meds (Budesonide, Asacol)as well as rectal ones (enemas, foam). I now have colonoscopies yearly. My last one was in December 2016 and I will have my next one in two months.

I am currently recovering from a really rough flare that included c diff. I am winding up a course of Vancomycin and an increase in my regular meds.

And some more about Joanne:

I am a very big sports fan, especially of baseball and football. The Los Angeles Dodgers have been my baseball team since I was a kid and the San Francisco 49ers are my football team!

I am the Vice President of a Little League and during the Spring season, I am the Manager of a baseball team of 6 & 7 year olds. I am moving up to the next division after Managing TBall for two years. Love the kids, sometimes the parents not so much! LOL!

One of the great passions in my life is animals as I have been an animal lover forever. I have been a vegetarian for many years due to my respect for animal life.

Colitis Symptoms:

I have been having a flare for the past three weeks but it’s finally calming down. I think the meds are kicking in. My flare included diarrhea, bleeding and mucus which has now stopped. I’m still having numerous bowel movements with some urgency but not as bad as before.

Ulcerative Colitis Biologics (And Concerns)

I have been taking 6 Asacol tabs and one Budesonide capsule daily when I’m “normal”. I also take iron, Vitamin D, B-12 and Vitamin C. I am now also drinking Boost.

With my current flare, my Budesonide was increased and I started using the Mesalimine enemas I always have on hand. Those have now been replaced by the Uceris Foam.

This current flare really wiped me out. I am exhausted, anemic and my nails are all breaking/cracking.

My question to other UC patients is, are you on or have you used any of the biologics that are out? My gastro doc has been trying to get me on one for the past two years but I’ve refused due to the side effects and potential “lymphoma” concern I’ve heard about. He’s recommending something called “Entyvio” for me that he says is specific for Ulcerative Colitis or Crohn’s patients in that it is “gut specific”. I’m worried about the potential side effects of that drug and how they might effect me. I’ve tried hard to manage my UC and I just try to roll with it and live my life. I don’t want to be a victim of UC.

Since I’ve had UC for twenty years, I’m pretty used to my lifestyle by now. I’m very careful with what I consume and I always make sure I know where the nearest clean restrooms are wherever I go.

My husband and the rest of my family live with my UC as well and they’ve all been great. Again, I’ve had UC for so long, they’ve all adapted to it. They know all about my Colos as well as my blood counts. They are all very loving people and good sports. They go with the flow and my Dad even cooks special food for me. I’m very fortunate to have them all.

I am also very fortunate to have a wonderful Gastro doc. He’s the best and I can always get in touch with him when I need him. After my first Gastro doc retired (whom I adored!) I went through three other docs before I was lucky enough to find my current doc.

Meds:

I’ve tried meds in the past that I’ve been allergic to. Those meds have had sulfa in them. I’ve had to stop them right away because of hives. I can’t say they worked or didn’t work on my UC per se, I just couldn’t take them.

written by Joanne

submitted in the colitis venting area