Are you dealing with an artificial opening of the colon? Karsten Hain shares how the stoma changed his life.
- 4 Minutes of reading time
- 27 January 2025
- Anita S.
Fred Astaire, Napoleon Bonaparte, and Pope John Paul II – the list of famous people with a stoma (also known as an ostomy) is long. Yet, an artificial bowel or urinary opening remains a taboo subject for many people. However, a stoma can be a life-enhancing measure – for paraplegic Karsten Hain, it was even lifesaving.
Stoma – yes or no? A wheelchair user shares his story
Karsten Hain has been paraplegic since 2010: complete paraplegia at Th2 with associated bladder, bowel, and sexual function disorders. Two years after his motorcycle accident, he underwent a so-called augmentation cystoplasty to restore bladder function. This bladder replacement (neobladder) is created from a piece of the small intestine. “After the bladder surgery, my bowel management was completely disorganized; I suffered from incontinence and cramps.”
For over five years, Karsten desperately searched for a solution and underwent countless examinations and treatment attempts: colonoscopy, MRI, CT, various medications and laxatives, as well as conventional and alternative therapies, and aids like toilet seats and anal irrigation systems. Nothing helped.
“The time investment and the burden were immense. I could neither work nor do anything. I was constantly afraid and became socially isolated. The pressure of suffering was so great that I developed depression and even thought about suicide.”
Karsten Hain, paraplegic with stoma
Karsten Hain now lives in Locarno. Neither the stoma nor the wheelchair prevents him from enjoying his life.
“For God's sake, I never want to have a stoma!”
For Karsten, the term stoma was nothing new. His childhood memories of his aunt with a stoma reinforced the negative reputation of the artificial bowel opening: You can see it, you can smell it, and it's not secure anyway. Specifically, those affected mostly deal with these concerns:
- Fear of leakage: The material doesn't adhere properly, or the pouch leaks.
- Negative body image / less attractive: The fear that the stoma will become an (additional) disability is significant. The idea that bowel movements or urine will flow from the abdomen is also negatively perceived. Many worry about being regarded as “disgusting” by their surroundings.
- Uncertainty: There are concerns about complications or that the material may not be skin-compatible, or that one might smell the stool or urine.
With his fears, Karsten sought discussions with various specialists in stoma consultation, gastroenterology, and visceral surgery, as well as with people who have a stoma. “The stoma consultant near my then-place of residence encouraged me and showed me how easy stoma care is to manage. Today I know: The negative image of the stoma is based on prejudices.”
“Better a bag on the belly than a tag on the toe”
In 2017, the then 43-year-old opted for the surgery of a mesh-reinforced end colostomy. Before the operation at the Lucerne Cantonal Hospital in Sursee and during his two-week stay at the Swiss Paraplegic Centre, Karsten Hain was intensively supported by the stoma expert Karin Gläsche Mehar. She has worked in Nottwil for 25 years and furthered her education in 2002 as a wound and stoma care expert.
There are basically two types of ostomy systems for the “bag on the belly”:
- One-piece system, where the adhesive plate is directly welded to the pouch.
- Two-piece system, consisting of an adhesive base plate with a fastening ring and separate pouches.
The stoma consultation concluded that a one-piece system is ideal for Karsten's belly shape and lifestyle. And the modern stoma care is convincing: it is reliable and secure, skin-friendly, and odor-neutral thanks to the activated carbon filter.
“I should have had the operation much earlier! The stoma has changed my life by 180 degrees: I have regained my quality of life and joy of living.”
Karsten Hain
What are the benefits of a stoma for people with paraplegia?
Karsten Hain beams: “For me personally, the stoma is a life-changing gain!”
- Time investment: Previously, he spent around five hours on the toilet and relied on aids. Today, he changes his stoma care anywhere in just two sessions of five minutes – without the hassle of transferring to the toilet and even while on the go in the car.
- Nutrition: Before the stoma operation, his diet was heavily restricted. Today, Karsten eats a varied diet and only avoids foods that cause significant gas or are high in fiber. He recognizes food intolerances immediately.
- Quality of life: His anxiety and panic attacks, social isolation, as well as his depression and suicidal thoughts have been replaced by joy in living: today he is active and relaxed, engages in activities and travels a lot, and is even able to work again.
Especially for individuals with tetraplegia, a stoma can have a positive effect on self-esteem, as manual bowel movements are eliminated and there is no longer a need for external intrusion into personal privacy.
To help alleviate taboo and reduce fears, Karsten Hain became a moderator at the Swiss Stoma Day in 2019 and openly shared about his life as a wheelchair user with a stoma.
“Risks and side effects” of a stoma
As with all surgical procedures, complications or limitations can occur with stoma placements. However, for Karsten, the positive effect of the stoma is so significant that he overlooks the minor “side sounds.” Due to the absence of the sphincter muscle, gas sometimes escapes, occasionally loudly. “In the past, I would have been mortified; today, I speak openly about it. Additionally, I suffer from spasms if the gas doesn't come out.”
And what about partnership and sexuality? “I have met women who see me as a person and not just as a wheelchair user or stoma bearer.” The fact that the pouch could be visible under his T-shirt doesn't bother him either. Karsten smiles: “It could also be a fanny pack or a wallet.”
What do you think – is a stoma a taboo for you? Do you have experiences with an artificial bowel or bladder opening that you would like to share with others?