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Interview with Wieke: "Ileostomy Crohn's Princess"

June 6, 2017

MEET WIEKE: "Ileostomy Crohn's Princess"

 

Q: Tell me a little bit about yourself.

 

A: When I was 12 years old, I was diagnosed with Crohn’s disease, although the symptoms started a few years prior. After that, I never had a year where I was completely symptom free. Every year I was hospitalized due to flare ups, and in this period I tried all the drugs that were available for Crohn’s—but nothing seemed to work.

 

By the time I started Humira, everyting seemed to be getting better—less flares, no more fistulas, abscesses and erythema nodosum, but then I had a sepsis and immediately had to stop Humira.

 

Everything went downhill from there, ending with my ileostomy bag—the best thing that ever happened to me, because I was pain-free!

 

After 3 years the Crohn's came back in full force. This meant another operation in 2015 where my large intestine was removed, and part of my small intestine, because it got really narrowed from the scarring. This resulted in a new ileostomy.

 

For the last two years, things have been going pretty good. I had to go back on Humira and I use B12 injections, but that’s about it. My disease still plays a big part in my life every single day, because I have to listen to my body, but I won't let this stop me from being HAPPY! 

 

Q: What was your reaction when you were told you would need to have ostomy surgery?

 

A: When it was mentioned for the very first time, I got really scared. The doctor made it sound like it was the end of the world in the way he talked about it. After I let it sink in, read about it, and heard about other people’s experiences, the idea of an ileostomy wasn’t that bad. I started to believe that the alternative was probably much worse. By the time the operation was booked, I was almost looking forward to it because the pain and discomfort was so unbearable.

 

Q: In what ways has the ostomy impacted your life in a positive way? How do you stay positive?

 

A: My ostomy really gave me my life back in so many different ways. I'm so much more than a girl sitting on the toilet in a lot of pain, not knowing how to get through the day. I have a lot more freedom now. It's not all rainbows and unicorns but the alternative was SO much worse! 

 

I'm by nature a pretty positive person. My illness was diagnosed when I was just 12 years old so I kind of grew up with it. I try to take good care of myself when I'm feeling low, and try to do the little things that make me happy, and take it one step at a time.

 

Q: How do people react when you tell them that you have an ostomy? Are you comfortable telling people you have an ostomy?

 

A: I tell everybody who wants to hear it that I have an ileostomy. I do this because the reactions of people are so freaking funny that it makes me laugh. I want to prove that you can be young and dress well, even though you have an ostomy. Due to my shapewear undies I can wear just about anything, so if I tell people I have an ostomy they always look at my belly trying to find the damn bag! 

 

Q: What surprised you about having an ostomy? How did it compare with what you imagined having an ostomy would be like?

 

A: I imagined having an ostomy would be a lot of work. When I heard that some people empty their bag up to 6 times a day, I thought your whole day evolves around the ostomy. I didn't know it was so easy, every time I go for a pee I empty (because I love the feeling of an empty bag) but that's peanuts! People always say, "Are you already done?"

 

Changing the material and flange is a bit more work, that I do once a day, but it’s not as life-changing as I thought it would be. An ostomy does not make you a dirty person (I was scared it would smell) and the materials nowadays are so great! I'm glad I wasn't born 50 years ago…

 

Q: What advice do you have for people who have to undergo ostomy surgery?

 

A: Take it one step at a time! Try to not let all of the information overwhelm you. Just do the best you can and work with what you have! Everybody's different, and everybody is coping differently!

 

 

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