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Living with an autoimmune disease: “I use 22 medicines a day”

“At the lowest point I weighed 34 kilos”

Jane (39) has Crohn’s disease, a chronic inflammatory bowel disease in the entire digestive tract and therefore an organ-specific autoimmune disease. She was diagnosed in 2006 when she was studying. “I had a busy life, did two studies and was with an association and a theater group. After stressful periods, I was able to set the clock that I had huge intestinal cramps for days. I did have more symptoms specific to Crohn’s – including chronic diarrhea, a lot of mucus in my stools and fistulas – but I never dared to see a doctor, I thought that was scary. ” When she finally went to the emergency room because she could only vomit for days and was diagnosed she suspected, she was relieved somewhere. “I had been dealing with complaints for so long, now something could be done about it. I was given 7 different types of pills and I was able to continue with what I always did, I thought. ”

A few months later, Jane was back in the hospital, because the medication didn’t work. After further investigation, it turned out that she had all kinds of abscesses in her stomach, which had simmered untreated for a long time. “I was getting worse, I could barely eat and became thinner and thinner. At one point I only weighed 34 kilos. ” After she had gained enough tube-feeding to handle surgery, part of her intestines were removed. “The inflammation there was already so sticky and scarred that it could no longer be recognized as a bowel, according to the surgeon. That was why I was so sick and had abscesses, because of that rotten piece. ”

Jane has been doing a lot better since surgery. “My quality of life is very good now. I will always have to take medication, a pill every day. And I will never have normal bowel movements, that now belongs to me. My oldest daughter is toilet trained, when I wipe her buttocks I see how beautiful her turds are. Oh wow, I think, that’s what it looked like, normal stools. With me it is always diarrhea. On bad days I have to do 10 times, on good days 4. I have to live with that. I am also chronically tired. That is difficult, especially if you have a young family, with a daughter of 4.5 and one of 15 months. ”

The fear that she will ever relapse remains. “Now my medication keeps my immune system calm, but I have no guarantee that it will never flare up again. It feels like a sword of Damocles. When I sometimes have a stomach ache because I have eaten something wrong or need to have my period, I am shocked. ”

Still, she wouldn’t have missed her illness, she says. “It sounds strange, but it has brought me a lot and learned about who I am and how I can be milder to myself. Crohn made me realize that if you want to keep functioning, you have to take good care of yourself. It made me a nicer person. When I was so sick, I was already happy with a rain shower and I was much friendlier to everyone. You have so much more appreciation for the little things. Such a disease brings you back to the core of life, it is just that you have to be kind to yourself and others and try to have a nice day. It’s not about status, prestige and things like that, but about feeling good and having fun with the people around you. ”

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