I am 33 years old and was diagnosed in March of 2000 with UC. I am one of the oddball, overweight UC’ers who doesn’t feel like I am “cursed” because of my diagnosis.
Some more about me:
I am the captain of a running team that wears TuTu’s when we run. I try and be a positive influence to everyone around me even though I am always in pain. It isn’t always easy, but it makes the day go by faster and makes me happy to be a positive advocate for UC.
Diarrhea for 14 years straight
Some blood in Stool
Uncontrollable Pain in Sigmoid area
Cursed? Think Again…
In November of 1999, my dad died from colon cancer. He died within just a week of diagnosis. He probably had symptoms, maybe even had IBD, but was one of those guys who just didn’t go to the doctor much. So there I was, 19, scared, angry, sad and generally pissed at the world and I was hiding something. I had been having stomach pain and loose stools, with blood, for awhile (months, a year, I don’t fully recall) and my mom told me she was done “playing by my rules” and dragged me to the GI during my college spring break. They got me in for a colonoscopy that week and I was diagnosed with UC. Awesome, my friends were at the beach and I was having a camera shoved where the sun don’t shine.
I am not one of the thin, frail, “something is wrong with them”, sick people. I have always battled my weight and with this new diagnosis, I was depressed, ate the things that didn’t hurt, basically carbs. I gained more weight. When I came home from school, my original GI, a young Patrick Swayze look-alike, had stopped practicing and gone into research. Great, needed to find a new guy, who at least had a sense of humor, but that didn’t happen. New doc was a jerk, at first he didn’t believe I had UC since I didn’t look like most of his patients. Awesome (insert eye roll) Next came colonoscopy number 2. Guess what?!?! I still had it and the meds I was on, weren’t doing the trick so he started talking about ostomies. Lemme tell you, I hightailed it right out of his office and never looked back. I was 20 now, in the prime of my life, I would figure it out, but I would NOT be pooping in a bag (he wasn’t very good at explaining these, but I k now now ostomies are not the end of the world) So for 10 years, I smoked a lot, I dealt with the pain, and for the most part was okay…( if you think pooping 14-20 times a day and having constant pain and diarrhea is ok.)
Fast Forward to 2013. I found running. I had lost almost 50lbs, I started running races. I took enough immodium to keep a horse backed up, but I was moving and I was happy. I still mostly hid my UC from everyone. I never had to go to the hospital for it, I guess I was one of the “lucky ones” until August hit. OH MY GOD, I thought I was dying. The pain got so bad I wanted to cry all the time. I was nauseous. If I did eat, sometimes I couldn’t keep it down, sometimes I just cried from the pain of it passing through. Something had to change. I found a new GI (got a reference from GI hottie #1) and she is close to my age which is awesome! (no more old boys club) I got meds, Asacol, tramadol for the pain and omeprazole to calm my tummy AND she got me in for a colonoscopy (only 8 years since I should have been last checked) and BOOM! Hello Inflammation! I had UC, Lymphocytic Colitis and had a precancerous polyp removed. Yikes! So we added budesonide to the mix of med s, scheduled a CT scan and kept on trucking. The CT showed a lot of inflammation as well (I guess I wasn’t as “well off” as I thought I had been) and the pain in my sigmoid area was still killing me. Nothing seemed to be working so I went on Remicade. After 2 infusions, I went in for a flex sig and another CT and the inflammation was gone but the damage I had done with all those years of ignoring my body is going to continue to cause me pain.
What does this all mean? Not a whole hell of a lot. It doesn’t change WHO I am. I am a crazy loud person who will talk to ANYONE about poop. I want everyone I know to talk to me if they think they may have a problem. I want to be that person that has an “incurable” disease that shows people life is still out there. I do not let my pain decide what I can and can’t do. I know where every bathroom is within a 5 miles radius of wherever I am. Not too long ago, a girl asked “who saw their diagnosis as a curse?” on a Facebook support group and I chimed right in. That stranger, from a random FB site is now one of my closest friends and we would have never met had we not shared this disease in common. I am not cursed, I am blessed. I have a life that I CHOOSE to live. I am not letting my body decide how my life will be lived. I can handle it. I chose to share my story because I see so many people see this diagnosis as a sentence to stop living. I want to show people that the mind can to marvelous things and if you allow yourself to believe that you can do something, you can! I hope to see you all out there, taking life by the horns and showing UC it does not define you. Maybe we can go for a run together, and no, I don’t mean to the bathroom.
No questions just a “Hello!” and a “helluva nice site you have here” :)
written by Megan C
submitted in the colitis venting area