Interview with Ileostomy Crohn Princess – Wieke

I was delighted to get the opportunity to interview one of my favorite Instagram accounts ileostomy_crohn_princess, AKA Wieke from The Netherlands. Wieke is one positive as f*ck, 30-year-old dog-mom to her three fur babies Lizzy, Lotte and Lara. She also rocks an ileostomy bag and like many has crohns disease. Due to her inspiring pictures, love for bikini's and a fantastic attitude to life in spite of the challenges she faces, she has quickly gained over 3K followers with much more to come. Check out her genuine answers below and her Insta account HERE.

What led to you sharing your story on Insta?

Before my ileostomy surgery, I was so scared and unknowing about the subject. Then I got to talk to a girl who already had an ostomy and was very happy with it.  She made me look at an ostomy in a whole different light. She was my inspiration and took away my fear. I wanted to be that for somebody else too, so I started my account!

Tell us a bit about your story.

My Crohn's symptoms started when I was about ten years old, it was not really severe at that time but the number of symptoms started to pile up throughout the years. When I was twelve my parents dragged me to the doctors (yeah I was stubborn and didn't want to go). The day I went to see a specialist in the hospital I was immediately admitted, it supposed to be my first day of high school! Soon after being admitted they found out that I had a severe case of Crohns disease.

I was on so many drugs throughout the years but a real remission never seemed possible, every year it was hospital in and out! Nine years ago I started using Humira in a trial, it worked pretty well for me most of the time until six years ago when I had to be rushed to the emergency room because of a sepsis. I had to stop the Humira immediately. This resulted in a huge flare which affected my whole body. I was so ill that an ileostomy was inevitable.

Pitch (sell) an ostomy to me as if I was getting one soon.

I sell ostomies like crazy, I sometimes call myself a 2.0 version of mankind haha. I mean, it’s the ultimate multitasking, I can do just about anything while unbeknown to anyone else pooping at the same time. The only thing I miss is not having the time to read on the toilet because the visits are that short. Most people I know are really happy with their ostomy, less pain and more energy. The fact that the toilet isn't the number one concern anymore is a huge bonus. It's definitely not all rainbows and unicorns but the alternative for most people is so much worse. I really love my ileostomy, it gave me my life back!

Tell me about an average day pre ostomy v. an average day post ostomy?

Pre-ostomy the toilet was my best friend and worst enemy. I spend too many hours to count in the bathroom. The mornings were hardest by far, I had to be totally empty in order to get through the day, so I almost ate nothing for fear of the worst! Doing the household chores was a step by step process, doing something fun or leaving the house was almost impossible. I tried several jobs but my body just shut down so I had to stay at home.

Post ostomy that is still the case. My Crohns wasn't gone after my surgery, not by far, so staying at home and taking care of my health was and will always be the case. I’ve been in remission the last four months for the first time since I was ten. However, getting up in the morning is still a challenge, my head just won't clear up, no matter what I try.

QUESTION: Does anyone have any tips to start the day? (Add in comments section below)

I do my household chores, take care of my beautiful doggies and myself by taking supplements, shakes, and juice. I try to work out once or twice a week. I spend a lot of time helping people online. I get about 20 messages a day that I always try to answer as soon as possible. Some people really need help fast.

In the evening I take my rest after I've changed my appliances and dilated my rectum because unfortunately, that is very narrow due to scar tissue. Some days I stay at home all day, some days I go out grocery shopping and on the really good days when I have enough spoons, I go shopping with my sister and best friend!

Check out Wieke’s sister Maaike’s Instagram Account: tall_vintage_ginger

What’s the main question you get asked from other ostomates? How do you answer them?

From ostomates, I get the majority of questions are around which appliances I use and what kind of ostomy supplies work the best. I always give my personal experience and tell them that everybody is different so that what works for me might not work for them, but they can always give it a shot! Apparently, irritation and leakage are still big issues!

For information on the range of supplies out there check out this BLOG.

What’s the main question you get asked about your ostomy from non-ostomates?

Non-ostomates who might need an ostomy mostly ask how they too can be confident with an ostomy, they are scared they will lose their self-esteem. Non-ostomates who are healthy, so random people, ask if it hurts, the ostomy itself because it's so red. Always makes me giggle a bit, luckily no sensation in that part!

QUESTION: Whats the main question you get asked from other ostomates/non-ostomates? (Add in comments section below)

You are an amazingly positive person in spite of all the challenges you have faced, do you ever have any down days? If so how do you ride out them out?

Down days, ugh yes, who doesn't! I of course still have days I feel very low, tired or in pain. That's, unfortunately, a big part of having a chronic illness. I try to stay flexible on those days. I am lucky I can stay at home and take care of myself on those hard days. I try to be extra nice to myself, think of small things that make me happy, and do those things. I live on my own so I have nobody to cheer me up, that's why it's very important that you learn how to cheer yourself up. My Insta happy, a cup of tea, a blanket, some comfort food, the doggies all with me on the couch. Happiness!

I know you are an avid juicer, what benefits come from juicing and what’s your favorite combo?

The number one reason why I started juicing is that fiber was really causing problems for me and especially my ileostomy, which is very narrow due to scar tissue. Fruit and vegetables were creating blockages and even smoothies didn't come out properly.

So 4 month ago I started juicing because I'd rather get my vitamins from food instead of supplements. I drink half a litre of juice a day, just as an addition to my normal diet, so not for detoxing or anything like that. Ever since I started juicing I feel more active, I have more energy and this really helps me to continue juicing, although it's very time-consuming!

My favorite juice is definitely the carrot/sweet potato/orange/lemon one! The beetroot/carrot/Mandarin/ginger is my favorite second.

QUESTION: Whats your favorite juice combo? (Add in comments section below)

Anything else you would like to share with the readers?

I would just like to say, don't be ashamed about having an ostomy, be open and honest about it! People will appreciate and love that!

Aspire to inspire was your aim and inspire many you do! Thank you Wieke for your time, I love seeing your posts and look forward to much more from you in the future. 

Don't forget to check out Wieke's Instagram Account ileostomy_crohn_princess for more great pictures and stories.

FB: InsideOut Ostomy Life / Insta: insideout_ostomy 

FB: InsideOut Ostomy Life / Insta: insideout_ostomy