Interview with Emma – about living with ulcerative colitis


Name: Emma
Age: 24 years old
Occupation: On sick leave
Interests: Series, friends, nature and exercise
Diagnosis: Ulcerative colitis

 

 

WHEN DID YOU GET THE DIAGNOSIS ULCERATIVE COLITIS AND HOW WAS IT DISCOVERED?
– My stomach problems started already in 1999 when I was seven years old. I had diarrhea daily and a lot of pain, because of this, I refused to go to school. My parents drove me to both the health care center and the ER several times, but they referred to the child and adolescent psychiatry and said it was psychological because of anxiety. Only in 2006 when I got blood in the feces, a colonoscopy was performed and then the diagnosis was made.

 HOW IS IT TO LIVE WITH ULCERATIVE COLITIS?
– I am constantly in need of being close to a toilet which makes my life very limited. I’m having trouble going away with friends on a road trip, for example. The fear of that my stomach will collapse during the car journey forcing me to shit my pants makes me rather stay at home. An ordinary day also means a lot of problems and limitations. For example, eating lunch with a friend in town is a big challenge, as I get stomach pain and urgently need to go to the toilet almost every time I eat. Therefore, I must always plan my meals based on today’s plans. If I am going away at five o’clock I must eat three hours before so that my stomach has time to calm down before I leave. Then I cannot eat until I get home.

WHAT IS THE WORST THING WITH HAVING ULCERATIVE COLITIS?
– The worst thing is to be so socially disabled. I would like to be spontaneous and just live my life without worrying about my stomach and toilet visits. I envy those who go out for dinner, plan a whole day with activities or just get some people together for a taco evening. For me, all this becomes overwhelming as I almost always get stomach problem. Even If I would not have problems, the fear of the possibility of having problems affects my stomach so that it does not work. It simply becomes a vicious circle.

 HOW DOES YOUR MEDICATION WORK TODAY?
– My medicine works so that I usually avoid diarrhea. However, I still have the need to go to the toilet quickly and then it’s acute, but I’m glad I don’t have diarrhea on a daily basis. I notice that the medicine works as I previously was morbidly underweight and had stopped in development. Today I have a stable weight and healthy values.

HOW DO YOU LOOK AT THE FUTURE?
– I hope I will learn to live with the need to always be close to a toilet, but today I’m so afraid of what others will think if I run to the toilet ten times during an evening that I prefer to isolate myself. There is so much taboo around poo, especially as a girl, which makes my problems even more difficult. I am working on standing up for the problems and in this way reduce the taboo, but it is hard. However, in the future I’ll manage to do everything that everyone else does, only with a toilet close at hand.