My name is Sarah and although I don't "look sick" I was diagnosed with Ulcerative Colitis when I was 14 yrs old. The past 7 years have been the toughest; my disease progressed and I became so sick I was unable to eat without pain or fear, unable to leave the house without worry and was constantly feeling like I was on the brink of death or another hospital visit. I was losing so much blood, constantly exhausted, dehydrated, having horrible side effects making me feel crazy and sick from the meds like Prednisone that were supposed to get me out of the flare, and I was looking forward to my Remicade infusions every 4 weeks with the hope that I would feel better. My bag for the hospital was packed constantly and in a 12 month period I was admitted 8 times, the longest being the entire month of June where I celebrated my birthday.
I was in the hospital in 2018 when my body just couldn’t do it anymore. I wasn’t responding to any of the treatments to get me into remission and unable to function normally. I was given a choice to either try meds that could potentially cause me death or have an extremely compromised immune system, or I could get my colon removed. My body chose for me as I shook from fevers in the days leading up to the surgery and my inflammation rate shot up. I woke up from surgery without a colon and without fevers but with a new body to adjust to. I lost not only my colon but also my hair along with 35 lbs. Having a bag temporarily attached to me at first was very difficult and weird, but I felt so much better. This last Nov and Jan I had my 2nd and 3rd surgeries which means I no longer have a bag, but instead have a jpouch, created from my small intestines. I'm enjoying living my life and still adjusting to the new plumbing.
Having friends and family to support me through this means the world to me. The thoughtful little things like phone calls or texts, visits, or taking me out for some fun always makes me feel better and so happy. Also, having my CCFA friends is extremely helpful and it's fantastic to have this whole community of people who really understand and who are there for me to talk to. Colitis is not my identity, it's what I have and it's a part of me, but I am more than my colitis.
When you donate, you are supporting Take Steps and the Crohn's & Colitis Foundation which has provided me with tons of resources, conferences, new friends who "get me" and lots of support. But more importantly, you are supporting an incredible community who have banded together to make sure that every day counts for patients.