Living with Chronic Intestinal Problems: Pernille’s Journey Towards a Stoma

TRONDHEIM (Dagbladet): Pernille Patricia Sandbakken (24) has had bowel problems for as long as she can remember. With only a couple of dobe visits a week, she thought she was living normally, but suddenly her stomach stopped.

Pernille was only 14 when the pain came like lightning out of the blue. Pains were so intense that they felt like knives. The young girl understood nothing.

She was picked up by an ambulance and taken to hospital. What they first suspected to be appendicitis turned out to be petrified faeces far up in the intestine. The pain she had known was air.

– I didn’t believe it. Breathe, Pernille repeats to Dagbladet and laughs a little.

Pernille remembers it well. In severe pain, she was laid on a bench and drugged with painkillers. A male nurse performs an operation on the young girl, and for Pernille this becomes quite traumatic.

– Then you haven’t shown your body to anyone else either, so it hurts and a bit embarrassing. It was disgusting. The experience that it is foggy and that you are getting a hose into the rectum is unpleasant, she says.

Pentecost: Great contrasts

Had pain since

Afterwards, the plan was for her to “get to know her gut”, and hopefully get rid of the symptoms afterwards. She is introduced to laxatives, intended for a short period. However, it was not that simple.

Pernille uses large doses of laxatives daily, still after 10 years.

– I am completely dependent on it.

For most of her youth, when Pernille was between 14 and 18, she was mostly in bed or in the hospital.

– I had to drop out of parts of secondary school, and really only participated to finish. Fortunately, the teachers understood. They have been supportive and arranged a race that would suit me.

Starting upper secondary school with such a poor starting point was also a challenge, but Pernille passed with study qualifications.

– I got a scheme that gave me fewer subjects and I completed my secondary school in four years instead of three. That solution enabled me to gain study qualifications. But, even though it’s wonderful, it shouldn’t be like that.

Fell out of speeding Russian car

Has been difficult

Pernille tells about a difficult everyday life with a chronic illness. Especially at secondary school, she could come to school looking perfectly healthy, but then be gone the next day.

– Some people thought I “faked” it, and it was hurtful, she continues.

Pernille experiences that a concrete diagnosis is never given to her problem. What until now has been symptom mitigation has not solved anything.

– What we think is that my rectum is not working, so the symptom is chronic constipation. Therefore, the cure until now has been to suppress the symptoms, with laxatives for 10 years.

Broke the law

Unusual desire

When she had lived for 20 years, and became disabled as a result of the intestinal problems, she could no longer cope. Something had to be done.

Pernille has chosen to have a stoma.

When Pernille learned that a stoma was an option, the tears came. The dream of living a more normal life was no longer improbable.

– In recent years, since 2020, I have only accepted that I would be disabled. But, then someone gives me this opportunity and now my life might become something. It is fantastic!

Now that the surgery date is set, she spends a lot of time finding information about what life will be like after the operation.

– I feel ready. I almost already have a bag on my stomach, she says and chuckles.

– It was absolutely magical

Choose to share

During her youth, there was one thing in particular that Pernille missed between all her hospital stays, and that was openness.

When she did her own research on the bowel and stoma to prepare for the operation, she was inspired by everyone who shares about the bowel. That made her suddenly decide to post a tiktok where she is open and honest about her problems.

– My goal is for bowels to be everyday conversation. Not taboo, she says firmly.

– The road to transparency is not done in a day. Take small steps towards being open, so more people dare to talk about it. Talk to family and friends, get used to your own reflection, says Pernille and concludes:

– Sharing is really scary, but it’s always worth it afterwards!