Stoma – artificial bowel or bladder opening

What is a stoma?

The word stoma is from the Greek and means “mouth” or “opening”. In medicine, it refers to an artificial opening that was created surgically into a hollow organ, such as the intestine or bladder. This diverts stool or urine through an opening in the abdominal wall into a bag.

Stoma as last resort?

The fact is: A stoma does not hold the top spot on the “list of priority measures”. The fear of limitations in daily life and of an aesthetic 'blemish' makes the decision difficult for those affected. Only when conservative treatments such as dietary changes, medication and minimally invasive surgery have failed is a stoma considered.

“In some cases, patients wait up to 10 years and test all possible alternatives before a stoma is recommended. From experience, a stoma could have been a solution for many affected individuals much sooner to improve their quality of life.”

Karin Gläsche Mehar, care expert for wounds and stoma at Swiss Paraplegic Centre (SPZ) in Nottwil

In Switzerland, around 3,500 stoma surgeries are performed each year. According to estimates, approximately 7,500 people in Switzerland live with a permanent stoma. The number of wheelchair users who have a stoma is not statistically recorded. “At the SPZ, we support approximately 15 patients with a new stoma each year”, reports Karin Gläsche Mehar.

What should be considered when deciding for or against a stoma?

The fears and concerns, the type of surgery, and the appropriate stoma system vary from person to person. For stoma expert Karin Gläsche Mehar, the following points are central:

• If bowel management or bowel evacuation becomes increasingly exhausting, time-consuming (more than two hours a day), cumbersome, and unreliable, affected individuals should urgently contact a medical centre. This centre must be knowledgeable about spinal cord injury and have its own visceral surgery department or maintain a good collaboration with relevant experts.
• During the consultation with a trained stoma specialist, all questions and concerns can be addressed, including topics such as partnership and sexuality.
• It is helpful to seek conversations with so-called peers or self-help groups. The partner or family members should also be included in the decision-making process.
• Psychological support helps to mentally prepare for the surgery or to cope with the new situation.
• The stoma surgery must be well planned:
  • Which part of the large or small intestine should the stoma be placed on?
  • Which area on the abdomen makes sense to avoid complications in the usually seated position? This is especially crucial for individuals with spinal cord injury, as self-care is essential for maintaining maximum independence.
  • This also includes marking the stoma or trial-fitting a bag.
  • Pumps in the abdominal wall (for spasticity or bladder emptying) affect the placement of the stoma.
• The selection of innovative and reliable supplies is extensive. Consulting with an independent stoma specialist helps to find a suitable system for personal requirements and compatible adhesive material.
• Care experts specializing in spinal cord injury at ParaHelp provide support after the surgery, even at home.
• Affected individuals can exchange experiences in various forums, for example, regarding everyday tips. In English, there are, among others, Meet An OstoMate, the Macmillan Online Community, as well as various groups on Facebook, etc.
• Numerous online platforms provide free guides. A small selection:
  • Factsheets and information booklets from Colostomy UK
  • Resources library from the United Ostomy Associations of America (UOAA), including the “New Ostomy Patient Guide”
• Several helpful books are available in stores, for example:
  • Compilation of books and resources from the Ostomy Canada Society
  • “The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies” by Barbara Dorr Mullen and Kerry Anne McGinn
  • “Positive Options for Living with Your Ostomy: Self-Help and Treatment” by Craig White
  • “So Much More Than My Ostomy: Loving My Perfectly Imperfect Body” by Ellyn Mantell
  • “Personal Best: From Rock Bottom to the Top of the World” by Adele Roberts
  • Tip from Karin Gläsche Mehar: The bestseller “Gut” by Giulia Enders brings the digestive tract out of the shame corner.
• A stoma is always an individual matter. It is important to discuss all the options for and against a stoma. Those affected should be sure that they want to undergo the procedure.

“Every person has different needs, which makes individual counselling all the more important.” Karin Gläsche Mehar, care expert in wound and stoma care at the SPZ Nottwil, informs a paraplegic patient about choosing her stoma supplies.

What are the advantages of a stoma for people with spinal cord injury?

• Less time spent, more flexibility: Long time spent sitting on the toilet can be eliminated. Additionally, dependence on caregivers and aids can be reduced. With proper hand function, stoma supplies can also be changed on the go.
• Higher quality of life: Active participation in life is facilitated. Especially for individuals with tetraplegia, a stoma can have a positive impact on self-esteem, as manual evacuation is no longer necessary and no external intrusion into their intimate space is required. In fact, a study showed that around 90 % of respondents were satisfied with their stoma.
• More diverse diet: Generally, only foods that are highly gas-producing or fibrous need to be avoided. Food intolerances are identified more quickly.

“Although a stoma can significantly improve quality of life, it is not a panacea. Bowel regulation with known methods and techniques remains important. Additionally, the surgical procedure and stoma care can cause complications. In individuals with spinal cord injury, hernias can develop due to weakened abdominal muscles. Furthermore, skin problems can arise due to material intolerance or when using leaking systems.”

Karin Gläsche Mehar, care expert for wounds and stoma, SPZ Nottwil

Most frequent reasons for stoma surgery

As long as our digestion functions well, we pay little attention to it. However, the gut is our “second brain”. For pedestrians, bowel or bladder cancer, chronic inflammatory bowel diseases such as ulcerative colitis or Crohn's disease, bowel obstruction, fistulas, incontinence, injuries, or poor general health are among the main reasons for a stoma. In wheelchair users, additional factors come into play:

• Problematic bowel management: In the majority of affected individuals, disturbances in bowel function (faecal incontinence and/or constipation) are the reason for a stoma surgery. The problems can also arise due to the level of paralysis, as a person ages, due to new conditions, or as a result of medical or medication-related issues.
• Pressure ulcer: The surgery for an open pressure sore near the anus usually requires an emergency stoma placement. This may sometimes be removed later.
• Quality of life and independence: The stoma often provides individuals with spinal cord injury with greater freedom. Tetraplegics with sufficient hand function regain their independence through a properly placed stoma.

What types of stomas are there?

There is a distinction between a permanent stoma and a temporary stoma.

• Ileostomy: artificial opening of the small intestine
• Colostomy: artificial colostomy with the following subtypes:
  • Ascending colostomy (on the ascending colon)
  • Transverse colostomy (on the transverse colon)
  • Descending colostomy (on the descending colon; the most common form in spinal cord injury)
  • Sigmoid colostomy (on the sigmoid colon, the second-to-last part of the large intestine)
• Urostomy: urinary stoma

Types of colostomata in the different sections of the colon. (Source: Blausen.com staff (2014). «Medical gallery of Blausen Medical 2014». WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436, Wikimedia Commons, CC BY 3.0)

What is a stoma made of?

Basically, a stoma supply consists of three components:

• A soft and flexible plate (flat or curved)
• An opaque bag made of textile fleece (closed bags, drainage bags and urostomy bags)
• An odor filter made of activated carbon.

In a one-piece system, the adhesive plate is directly welded to the bag. Two-piece systems consist of an adhesive base plate and separate bags that are attached to the fastening ring of the plate.

The choice of the appropriate system depends on the individual needs, abilities, and body structure of those affected. Stoma therapists are knowledgeable about which products ideally match their preferences, existing fine motor skills, or any allergies.

By the way: Our modern supply systems are based on the creative solution of a nurse from Denmark, who developed a self-adhesive bag for her sister in 1954.

Does the diet have to be changed with a stoma?

In just 0.46 seconds, Google returns 154,000 search results for the question “diet with a stoma”. However, to this day, there are no scientifically substantiated findings and dietary recommendations for those affected.

Despite countless (well-intentioned and often contradictory) pieces of advice, renowned nutritionist Diana Studerus recommends a simple rule: to eat intentionally. Those who have no complaints should eat everything and enjoy it without restrictions. Ideally, attention should be paid to the so-called plate model: one to two fistfuls of vegetables, along with one fistful each of starchy and protein-rich side dishes.

“Many stoma wearers avoid certain foods because they fear discomfort such as cramps or bloating. This poses a risk for malnutrition.”

Diana Studerus, nutritionist MSc SVDE

If digestive issues arise, it is advisable to pay closer attention to them. Often, so-called functional digestive complaints occur in connection with the placement of the stoma—but also years later. These arise from a complex interplay of the gut microbiome (gut bacteria), the gut-brain axis, and dietary components. For individuals with spinal cord injuries, a differentiated assessment of functional digestive complaints is sensible.

Nutritionist Diana Studerus herself suffers from chronic inflammatory bowel disease and has specialized in nutrition with a stoma. In the picture, she is giving a lecture at the Stoma Day of ilco Switzerland.

Many people with functional complaints feel that certain foods can significantly exacerbate their symptoms. Scientific studies show that in about 70% of cases, lactose (milk sugar), fructose (fruit sugar), polyols (e.g., sweeteners in gums or candies), and oligosaccharides (longer sugar molecules from wheat, garlic, legumes, etc.) can worsen the symptoms.

In this case, a low-FODMAP diet can help. As a diagnostic diet, it can assist in identifying the trigger or triggers of the symptoms. When appropriately adjusted, the low-FODMAP diet can be used in the long term to reduce digestive problems. The FODMAP app can be helpful to support self-implementation in daily life.

Also, very fibre-rich foods such as asparagus, green beans, celery, fennel, corn kernels, tomato skins, mushrooms, grape seeds, membranes of citrus fruits, nuts, popcorn, or peels of fruits and vegetables can lead to stoma blockages. Instead of avoiding these foods, they can be peeled, finely chopped, and well chewed.