Living with ulcerative colitis – read patient stories

I have a constant need to be near a toilet which makes my life very limited. The worst thing is being socially handicapped. I would like to be spontaneous and just live my life without worrying about my stomach and going to the bathroom. Even an ordinary day means a lot of problems and limitations for me. For example, eating lunch with a friend in town is a big challenge, as almost every time I eat I get stomach pain and urgently need to go to the toilet. Therefore, I must always plan my meals based on the day’s plans. If I leave the house at five o’clock I must eat three hours before then so my stomach has time to calm down before I leave. Then I can’t eat again until I get home.

It is very important that the treatment doesn’t result in any side effects. It is also good if you can change the dose yourself and increase the effect, meaning you can adjust the dose depending on how you feel. It is easier if the medicine should be taken regularly, but not too often. It is difficult if you have to take tablets several times a day. A drug taken rectally once a week is not a problem at all. I would prefer to take a medication rectally if it meant that I could avoid side effects and reduce the dose.

Yes, my illness was very aggressive and I experienced flares at least twice a year, so it had a pretty large effect on my schooling. I had just started my first year of high school when I got sick. As a result, I didn’t have much of a choice but to redo the year. My whole time at school has been very difficult. When my friends were on school breaks and could do fun things, I was either at the hospital or trying to catch up on everything I had missed.