My name is Katie, I’m 24 and have been dealing with UC since I was 14 and have never been in remission. After being sick and trying to maintain a normal life, I decided to have my colon removed on March 5th.
I was having abdominal pain, urgency, bloody stool, I was going 15+ times a day, never getting a full night sleep…
I was diagnosed at 14 and after 10 years and dysplasia I finally decided that surgery was my best option.
I have a great Dr. but nothing seemed to work. I have the most supportive family and fiance in the world, there is no way I could have made it this far without them. I think that my friends want to be supportive, but aren’t sure how to be and they don’t quite understand the severity of UC. One good thing has come having this stupid disease and that is my outlook on life. Without sounding full of myself; I am one of the most empathetic people I know. I now look at people and wonder what there struggles entail and I have the mentality that life could be so much worse and that I am lucky to have all of the great things I do.( even though it’s hard to remember that when I’m sitting on the toilet in pain)
I was going 15+ times a day and half the time it was only blood coming out, I ate constantly and only weighed 100lbs. People would always say, “you don’t look sick” which drove me crazy, because I was! I was malnutritioned, had dark circles under my eyes, I was weak and always tired, my joints ached, and the hardest part of all was that my life literally revolved around a toilet. The thought of a road trip or sharing a hotel room sent me into a panic attack.
The one thing I loved that Ulcerative Colitis couldn’t take over was camping.
I love camping and it’s like having a huge limitless outhouse to use and any given second. I had to drop out of college because I couldn’t focus on studying while having blood transfusions and iron infusions on a weekly basis. I also developed erythma nodosum(sp?) which got so bad that I could hardly walk to class). I was so over this disease. I was tired of having to plan my life around the bathroom, having to pack Tp everywhere I went, sometimes putting a paper-towel in my pants in case of an accident while out and about(tmi? I don’t care, it helped out on several occasions.) I decided it was time to see a surgeon.
On March 5th 2012 I had my colon removed. I was so excited and not nervous at all. I kept waiting for the nerves to set in, but it never happened. I have had some irritation with my stoma, but three weeks after surgery and I am back to school and work and feel great!! I have my next surgery in a couple weeks and can’t wait! I can already see the light at the end of the tunnel and it feels great. I know that us UCer’s will never have normal bowel habits again, but surgery is definitely a viable option if all the meds aren’t working. Please feel free to email me if you have any questions or need someone to talk to! I am very open about my colitis and have developed a few tricks that have helped me battle this crappy disease(pun intended)
written by Katie
submitted in the Colitis Venting Area