Living with a stoma: limitations, self-acceptance, and the Ukrainian context

What is the problem?

A stoma is an artificial opening created surgically after the removal of all or part of the intestine. It is put on the front abdominal wall and intended to remove intestinal contents collected in special bags. 

The most difficult thing about living with a stoma is a lack of information, offices, and specialists. There are also no communities for ostomy Ukrainians. So when a problem or question arises, there is no one to ask. In addition, this topic is taboo in Ukrainian society.

What is the solution?

War increases the number of people with all kinds of injuries and diseases. Accordingly, the number of people who need a stoma is also increasing. Rubryka decided to look into this issue and talked about life with a stoma with stoma specialist Anna Firsova, psychologist Victoria Yakovenko and writer Yulia Yarmolenko, who had to experience this surgical intervention personally.

The range of diseases and conditions that lead to the need for a stoma is large. Stoma is an option:

• after removal of intestinal tumors;
• in some cases of peritonitis;
• with acute intestinal obstruction, which developed as a complication of cancer, inflammatory processes in the intestine;
• with chronic inflammatory bowel diseases — non-specific ulcerative colitis, Crohn's disease, ischemic colitis;
• surgery of multiple stab or gunshot wounds of the abdominal cavity.

According to various sources, there are from 50 to 70 thousand people with stomas in Ukraine, and according to stoma specialist Firsova, this figure is constantly growing. The reasons vary from oncology, chronic digestive system diseases, and, recently, injuries to the abdominal cavity during hostilities. According to the World Health Organization statistics, the formation of an intestinal stoma is the objective end of the operation in 65% of emergency operations on the colon.

How does it work?

Life with a stoma doesn't always start easy. With the appearance of a stoma, many things change, both physically and psychologically, but you can learn to live with it and live fully.

As practice shows, in the first days after surgery, adaptation to the new version of yourself is particularly important. "At this time, my task is to convey to the patient that physiological changes in the body will not significantly affect the quality of life," says Firsova. "After all, all the problems are in our heads, and so are the barriers." 

A person remains the same person as before the operation. Only the person chooses whether to live today and now or to hide within the four walls. 

The specialist adds that among her acquaintances with stomas is a teacher at a Kyiv university who lectures and goes to the pool, a pediatrician who treats young patients, and many others who prove that a stoma is not a reason to give up.

As for practicality and aesthetics, the stoma is red and moist from the outside, similar to the mucous membrane of the oral cavity. The first 6-8 weeks, it will be swollen, then it will decrease in size. There are no nerve endings on it, so there is no pain either. If you take care of it properly, you can do anything with a stoma: do sports, have sex, get pregnant and give birth to children, work, travel, and have fun.

In the case of Yulia Yarmolenko, the stoma was created due to peritonitis — inflammation of the lining of the abdomen. The surgeons removed part of the damaged intestine but could not sew it up immediately because there was a high risk of repeated peritonitis. Yarmolenko had to wait a few months for the intestine to heal, after which it could be sewn back together.

"My life has not changed after colic stoma — already three weeks after the surgery, I went on a business trip to Lviv, " Yarmolenko recalls. 

According to her, the only thing that has changed is the constant search for quality pouches, cosmetic products for stoma care, constant Googling of stoma information, and, of course, the diet.

It is through the stoma that stools and gases are removed. A person does not feel urges and cannot control the process of excretion. The contents of the intestine enter the drainage bag (colostomy bag), which must then be replaced or emptied. Firsova says that modern devices and means for caring for various types of stoma make it possible to achieve maximum comfort and exclude uncomfortable situations.

Before choosing a receiver model and related accessories, consult with a stoma specialist or, in the absence of one, an oncologist or surgeon. The choice of stoma care products depends on several factors:

• type of opening;
• location;
• features of the skin;
• state of bowel movements;
• person's wishes.

The ileostomy — the contents of the small intestine — has no smell, and the smell is characteristic only of the colostomy (the removed end of the large intestine) and if there is contact of the contents of the bag with the environment. A remedy for this case is neutralizers, which are poured directly into the bag and neutralize the smell.

"Modern, high-quality calorimeters should not allow odors to pass through," says Firsova.

Most of them have a filter that releases only air and neutralizes the smell. If there is a smell, it means there is a violation of the tightness between the skin and the colostomy bag's plate — a sign that replacement is urgently needed. There are auxiliary care products, such as paste sealant, for better tightness.

From Yarmolenko's experience, filters are sometimes defective, and they can let the smell through.

"The bags sold in Ukraine are not of very good quality. I was given ones provided as humanitarian aid, which were much cooler," Yarmolenko shared with Rubryka. "Frequent change of bags rescues."

Firsova confirms that hospitals often provide stomas of a not-so-good quality, but in pharmacies, the products are quite high-quality. The financial issue remains open — providing yourself with high-quality products is a rather expensive pleasure.

"Choose food carefully. Diet is an individual matter — everyone has their own preferences," says Yarmolenko.

In general, what people with a stoma should consider is the effect of each product on the digestive process.

• Eggs, beer, carbonated drinks, cabbage, mushrooms, legumes, onions, and chocolate contribute to gas formation.
• Foods such as garlic, eggs, spices, fish, onions, and cheese significantly increase the smell of intestinal gases.
• Salad, yogurt, lingonberry, spinach, and parsley have the opposite effect.

"Now, after the intestinal reconstruction, I have more restrictions than with the stoma," Yarmolenko adds. "I will not say that the diet is sad. It is healthy."

Yarmolenko shares that her diet mostly consists of cereals, broths, boiled lean meat, baked fish, stewed vegetables, and baked apples. Drinks include tea, uzvar, a national Ukrainian beverage, cooked with dried fruits and berries, and water. 

Fried, spicy, fatty, fast food is not allowed, and neither is alcohol. Food should also be consumed in small portions, but often. Sufficient hydration and physical activity are necessary because the intestine loves movement.

Previously, after intestinal surgery, most patients had to live with a stoma for the rest of their lives, but today everything has changed. The latest technologies for restoring the intestine help ensure a quality of life for patients.

Yarmolenko's stoma was closed after 4.5 months. But in each case, it is different. If the rectum, a large part of the intestine, is removed, for example, due to oncology, then often the stoma remains forever. Then you need to register for disability. However, if the length of the intestine is sufficient, recovery is possible.

According to Firsova, among wounded soldiers, a stoma is usually closed after five to eight months, as an injury to the abdominal cavity leads to urgent surgical intervention. In conditions of urgency, the recovery and healing of internal seams are longer.

In one article, it is impossible to tell in detail about all the nuances of stoma care. To make life easier for Ukrainian stoma patients, Firsova created a two-hour guide on caring for a stoma together with Inspiration Family, a charitable foundation for supporting adult cancer patients. The entry at this link has everything to do with an intestinal stoma and its care.

Even more useful solutions!

"A person perceives themself in the integrity of the image. When this integrity is violated, it becomes a trauma for any person's psyche, says psychologist Victoria Yakovenko. Currently, the number of people with one or another injury is increasing in Ukraine — both military and civilians suffer from the horrors of war.

How to accept a new image of yourself? It is better when there is someone who supports you. It is also essential to know your possibilities in rehabilitation after an injury.

Today, medicine has many resources to help you start living a normal life as soon as possible. However, the rehabilitation process can take quite a long time because each injury has its characteristics. What can help along the way:

1. A sufficient amount of information about your condition, prospects, etc.
2. Social support.
3. It is important to share your emotions and to live them qualitatively and ecologically.
4. To restore the resource, you can choose a hobby. It is helpful to dream and plan your life after rehabilitation.
5. It is useful to learn something new because it is a resource for mood, development, and further integration into society.
6. Physical activity in any form.
7. It is useful to consult a specialist for psychological support in difficult cases.

Psychologist Yakovenko offers a list of films that will help in understanding the processes that take place inside a person who is going through the path of bodily loss and recovery:

• "I dance inside myself." France 2004
• "Love you forever." Denmark 2002
• "Elephant Man." USA 1980
• "Magic of Belle Island." USA 2011
• "My left leg. Britain" 1989
• "Untouchables." France 2011
• "Butterfly Circus." USA 2009

"Knowing about a stoma helped me a lot," says Yarmolenko. "I have seen people with stomas before. I had minimal information, so it was easier. If I woke up after surgery with a stoma and heard about it for the first time, it would probably be a shock, and it would be much more difficult to accept myself with a pouch on my stomach. The funniest thing is that I've been working on a children's book about poop for the past year and a half."

Now she has an idea to make one of the characters with a stoma to normalize this topic and give children and parents more information, because of the war in Ukraine, there are more and more people with stomas."

In Yarmolenko's opinion, the support of loved ones is very important for a person with a stoma: "The people closest to you can help you accept yourself with a stoma and not have problems with self-esteem. That's what happened to me. My family supported me so much that I was not ashamed of my stoma, and I was not afraid to speak and write about it on social networks."

Now the writer dreams of having free brochures with all the basic information for ostomy patients in surgery departments of Ukraine. I am ready to participate in their creation, at least interviewing stoma specialists and translating all this into simple, understandable language.