By Ben Wheeler
THIS INSPIRING woman is so badly affected by Crohn’s disease that she is due to be left permanently without an anus after it is permanently closed by her doctors later this year.
Images show Wieke Kotten, 31, from Almelo, Netherlands sunbathing and openly bearing her colostomy bag in public.
Contrasting pictures show her in states of what she describes as ‘barely alive’ in hospital at various points throughout her illness compared to the proud and outgoing woman she is today.
Wieke started experiencing symptoms of Crohn’s disease aged just ten, when she began to struggle with loose stool and abdominal pains.
However, it wasn’t until the age of twelve when her parents dragged a stubborn Wieke to the doctor’s surgery and then referred her to a specialist that the family found out she was suffering from severe Crohn’s, Wieke was immediately admitted to hospital on what was due to be her first day of high school.
After unsuccessfully trialling a number of drugs over the years, doctors were left with no choice but to give Wieke an ileostomy, a surgical opening in the stomach that is constructed by bringing the end of the small intestine out on to the surface of the skin, allowing intestinal waste to pass in to an external pouch.
Wieke is now on a mission to challenge the negative stigma surrounding ostomy pouches by proudly displaying her own on social media.
“My next surgery is a proctectomy, where they are going to remove all part of my rectum and close the anus which is very much a permanent procedure” she said.
“Crohn’s keeps on being active in that area which caused me to have strictures and scar tissue. My bowel and rectum also produce mucus on a daily basis which needs to come out or else it can get inflamed.
“Because of the strictures my rectum is as narrow as 5mm and I have to dilate daily to make sure the mucus can pass. It is very painful which is why I’m having surgery to remove my rectum. I’m expecting to get my surgery date any day now.
“Healing in that area can be pretty difficult and we just don’t know yet how it’s going to affect everything. At first it will be very painful and debilitating for sure, so I have mixed feelings about it but can’t wait for my dilating days to be over.”
Wieke went on to discuss her early experiences with Crohn’s and how what started with abdominal pains as a ten-year-old have led her to where she is today.
“When my symptoms started with loose stool and abdominal pain it wasn’t very severe, but the number of symptoms started to pile up over the next couple of years,” she said.
“When I was twelve my parents dragged me to the doctors as I was very stubborn and didn’t want to go. After being referred to a specialist at the hospital, I was immediately admitted on what was supposed to be my first day of high school.
“Three weeks after being admitted they found out that I had a severe case of Crohn’s disease and by this time I was suffering from malnutrition, anaemia and severe pain.
“Following my discharge after a further three weeks I spent years on so many drugs that a real remission never seemed possible.
“In 2009 I started using Humira in a trial, it worked pretty well for me and was the only medication that kept my symptoms from getting worse. Unfortunately, I had to stop with this treatment because of a sepsis and everything went downhill from there.”
Wieke then described the horrific effects of having to stop the only medication that had ever worked for her and how this lead to her being given an ileostomy.
“After that I became severely ill and my intestines were really inflamed. In the space of a month I went from feeling okay to a state where I felt like I was barely alive, I wouldn’t call it living anyway, although I never looked at it that way,” said Wieke.
“That’s when the ileostomy was inevitable and not even a choice anymore, because a choice between life and death is not a choice in my books!
“When it was mentioned for the very first time that I may need an ostomy, 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 other people’s experiences, the idea wasn’t that bad. I started to realise that the alternative was probably worse.
Wieke finally had her ileostomy performed in 2012 and spoke about how it has impacted her life ever since and the reaction she receives.
“I had some complications post-surgery, which made it difficult to adjust but even with those problems life was better overall,” she said.
“I always tell people that life before surgery was hard when my body failed on me time after time. My ileostomy has given me back the confidence in my body!
“People are always shocked when they find out I have an ostomy. They feel sorry for me and think it’s a burden until I explain to them that my life before was a burden and not the ostomy at all.
“People do stare when I’m swimming in public for example but I’m happy to let them, I walk around with pride.
“I’ve done some dating since having the surgery, at first I didn’t tell any of the guys about my ostomy, but they were smart enough to google me and then it was kind of obvious.
“I have to say though I have had nothing but respectful comments on that front, I think the more open and honest you are about it the easier it is for others to accept it.
Wieke detailed her inspiration for being so open about her condition before offering up advice to anyone in a similar situation.
“Before my surgery I got talking to a girl who already had an ostomy and was very happy with hers and she made me look at an ostomy in a whole different light,” she said.
“She was my inspiration and took away my fear, I wanted to be that for somebody else, so I started my account to help in any way I could to take away the stigma.
“To anyone else going through something similar I would say take it one step at a time and try not to let all the information overwhelm you, you learn along the way.
“Try to really talk about what you feel, the good, bad and the ugly, also find people online and ask lots of questions.
“I’m a positive person and have always had hope that someday everything would get better, but everybody copes differently and that’s just fine.”
For more information see Wieke’s Instagram
