My name is Katherine, and I was diagnosed at age 24 with UC (I am now 25). At the time I had a full time job. However, shortly after my diagnosis, I decided to go back to school for a Masters degree. I had no idea what I was in for. My ulcerative colitis progressed quite rapidly from proctitis to full blown pancolitis in about 4 months. I did not realize when I was first diagnosed how serious the disease was. But the symptoms got more severe in a very short period of time, so I became acutely aware of what UC was and what all it entailed.
I am three weeks out of my first surgery of the J Pouch surgeries. My surgeon had to do mine in three steps because I was so inflamed. The only symptom I have now is that I still have bloody discharge about once a day because I still have my rectum (will be removed in second surgery). It is rather painful, and I have a throbbing pain back there that happens when I have the bloody discharges.
I spent 40 days in the hospital from June-August this summer, and decided it was time for something to change. I knew I needed an actual solution that would provide some actual relief, and realized my only option left was to get the surgery. It wasn’t much of a decision to make though. I had been on every medicine on the market for over a year- Lialda, Imuran, Prednisone (this medication literally made me demonic, my mood swings were unreal and I gained about 15 pounds in a month), Mesalamine and Hydrocortisone enemas, etc. My body basically laughed at all of them. I would get relief for maybe a week or two MAX. And when I say “relief” I mean having 10-12 bloody painful BMs per day instead of 25-30. When Remicade and Cyclosporine also failed, the surgeon came to talk to me and basically said that if I didn’t have my colon removed I would probably be on the road to cancer/never get to leave the hospital due to dehydration an d losing so much blood and weight. At this point I had no quality of life. I spent all of my time in bed or in the bathroom. I couldn’t go anywhere because I was so anemic and zero energy. I had to drop out of grad. school, etc. I was extremely unhappy and in a lot of pain. Also, I couldn’t eat anything and I love to eat. Not only do I love to eat, I love to eat spicy foods and haven’t eaten anything fun in a year.
Anyway, I had my first surgery Sept. 1. It has been three weeks and I feel okay, still not back to my “normal self.” I am extremely exhausted, still have the bloody discharge and painful butt throbbing sensation that lasts for hours at a time, and am having to deal with the temporary ileostomy. I am most concerned about the second and third surgeries. I want to hear from people- anyone- who has had this done. I just need to hear some confirmation that I will be okay, I will be able to live a normal life as a 25 year old. I want to be able to go out, drink a couple beers (I haven’t had alcohol in months), eat a salad if I want to.. just be normal. I want to be able to exercise- do yoga, run, work out- just normal stuff. I want to finish school without having the additional anxiety of wondering if I will be able to sit through an exam, make it home without spewing blood out of my butt, if I can go on a road trip with my friends, etc. I have read that there can be a lot of complications with the surgeries, which I worry about a lot. And I am really having a hard time adjusting to this bag. I do not like it. I am ecstatic and thankful that it is temporary. I’m very self conscious of it and rarely leave my house. It gets so huge and full of air, how are you supposed to wear anything but a massive t-shirt? I am surrounded my loving family and friends, which is helpful. But I need to talk to people who have been through this. Especially anyone who is my age or around it, but want to hear from anyone, no matter the age. I do not mean to sound negative, I just don’t think I’ve fully acknowledged that I had a major surgery and am about to have two more. It’s just a lot to think about, especially when I didn’t have much of a choice. I just want to know all of this will be worth it.
Where I’d like to be in 1 year:
Done with surgery, back in school and on my way to finishing my masters degree, and not taking any medication, only vitamins. I would also like to be able to eat spicy food again- Indian, Thai, Mexican, anything with Buffalo sauce on it.. I haven’t been able to enjoy spicy food in a long time and it’s pretty much all I want to eat.
Honestly, nothing worked for me long term. I had “refractory” colitis, basically meaning I didn’t respond to any medications. Lucky me.
written by Katherine
submitted in the colitis venting area