When I showed this to my adolescent daughter, she covered her mouth and ran out of the room. She said she felt sick.
Marysia is 39 years old and has been living with a stoma for three years. She’s used to it, but says she belongs to the group of patients who have gone through the hell of depression because of their stoma.
“When I got colon cancer, I was more afraid of it than I was afraid of chemotherapy,” she recalls. – After the surgery, I was under the illusion that I was only exposed to it for a moment. That they would shove that bowel stump sticking out of my stomach again. The ordeal with the bags will end. Today I know that I will live with my stoma until I die. And what? And I will live is the most important thing for me.
– A stoma (an artificially produced fistula) in this case is a connection between the large intestine and the abdominal cavity – he explains Andrzej Nowicki, MD, PhD. – Having a stoma allows the patient to discharge the contents of the intestine outside (into special pouches that the patient attaches to the skin) when this is not naturally possible.
The most common cause of a stoma is colorectal cancer, but it can also cause other conditions, such as anal cancer, malformations, injuries or complications in abdominal diseases. When the surgeon makes an opening for the small intestine during the operation, then we are dealing with ileostomyand in the case of the emergence of the urinary tract – urostomy. There are patients who have two types of stoma at the same time.
If the stoma is properly made, provided with the appropriate equipment, and the person who has it physically and mentally adapted, then he lives normally after the surgery. A stoma is not a disease, but a change in the anatomy of the body.
Marysia is reluctant to recall her memories of developing cancer and staying at the oncology ward.
– It cost me a lot to deal with this trauma. Account for that time – he says.
For the stoma interview, she decided to cheer up the other stomas and their families, but she does not want to be overly optimistic at the same time.
– Everyone experiences the disease in their own way. I know a young man who, with an ostomy pouch stuck to his stomach, is not shy to enter the lake in the summer. He is very active in sports and socializing. And praise him for that! – says the woman.
– I do not have the same mental strength as others. I accept my stoma but will never like it. It is true that it is not as restrictive as some people think. You can work with your stoma normally, play sports, make love. The problem is in the head. I had to learn how to handle bags for a long time. For the first few weeks I was assisted by a stoma nurse. She showed what and how, she explained patiently. Even so, I was very nervous about her visit. I was ashamed. I felt as if she had come to rewind me. I had remorse that I was not coping. The breakthrough in my case was … the delivery of new bags. I started using bags with a carbon filter that absorbs unpleasant odors. I have perfected the handling of their replacement. I felt confident enough that I gave in to my daughter’s urging to show her what my stoma looks like. I have no regrets towards her for reacting like that. She immediately apologized to me, hugged me and said that she loved my stoma because thanks to her she has my mother with her, alive. We cried.
– Thanks to new technologies, ostomy bags can be self-adhesive directly to the skin or combined with an adhesive disc, and changing the bag requires a snap-fit connection with the disc – says Andrzej Nowicki, MD, PhD. – The frequency of their replacement depends on many factors, e.g. diet, peristalsis, but not more than 2-3 times a day. Tap bags are used for loose stools.
However, as ostomy nurses note, the best bags will not fully fulfill their role without the patient’s proper approach, i.e. a reliable and responsible approach to personal hygiene in the new edition.
– I am grateful to my nurse for the knowledge and human approach to me as a person who found herself in a completely unexpected situation – says Marysia. – A very stressful situation, full of discomfort and negative emotions, extended the process of adapting to new conditions and reconciling with them. My nurse not only taught me how to handle my stoma (for example, I had inflammation of the skin around my stoma for some time after surgery and she explained to me how to cure it and prevent such conditions in the future), but also had a therapeutic function. I’ve never seen any impatience on her face or – God forbid! – a grimace of disgust. I know from other ostomates’ reports that such behavior happens.
At www.stomicy.org you can find a lot of valuable information about the stoma prepared by specialists. We learn from it, inter alia, that; Operations that result in the creation of a permanent or temporary stoma are among the most burdensome. The consequence of the surgical intervention is loss of the anus and / or loss of natural excretion functions. If the stoma is permanent, it is a psychological burden due to the irreversibility of the situation. A temporary stoma is a ‘suspension’ between operations. The difficulty in adapting arises from the fact that people are reluctant to adapt to transitional situations. People with a temporary stoma worry that it may remain permanent.
– At the beginning, I hated my stoma and long deluded myself that I would only have it for a while – explains Marysia. – In order to come to terms with the new situation, I went to a psychologist and it all took a while. I know that not everyone can afford such a luxury, which is why I appeal to ostomy families: be supportive for your relatives. Don’t make fun of them, don’t embarrass them, but also don’t pretend that nothing happened! Even if you, like my daughter, do react emotionally, don’t deny it. It’s normal for your stoma to come as a shock to you as well.
Marysia emphasizes that understanding the relatives towards the stoma brings great, psychological relief. It gives him confidence and allows him to return to normal life as quickly as possible.
– I already told you about it: people are different and everyone experiences their stoma in their own way. My husband did not cope with my illness. We’re divorced. Does he call sometimes to ask how I feel, if he could help me with something? However, being together is out of the question. An insurmountable barrier was created. Maybe it was his separation from me as a woman that caused me to lock myself deeply. I know that many ostomates have little resistance to having sex with a loved one. The bag is not a problem. However, I do not dare to undress in front of a man. It’s stronger than me. Therefore, there is no optimism in me. Because you can function normally with a stoma, but sometimes something happens that stops you in one place. My illness stopped me like that. In sessions with a psychologist I learned to accept a stoma, but I can’t like it.
In one of the online forums, a discussion about the stoma broke out. It shows how much reliable information is still needed to overcome the circulatory distortions, e.g. that stomas emit an unpleasant smell, that the bag can spill at any time and is disgusting, or condemns a person to sitting in four walls.
Iks Igrek wrote: After all, a healthy person has to wash himself, touch his intimate parts with his hands, change the sanitary napkins with his apologies and wipe his honorable four letters. A healthy person also sweats, takes care of physiological needs, etc … I will skip the detailed descriptions, because everyone knows what I’m talking about. A healthy person will sometimes (also apologize) let go of this and that. Sorry for the literalness. A healthy person also stinks and is disgusting if he does not care about hygiene. My husband has a stoma and so what? It’s not disgusting because it takes care of itself.
- For stoma hygiene, you can use Anusir anal and stoma cleansing foam from the Medonet Market offer.
And Anka adds: An artificial problem! I have had a stoma for several years on a permanent basis, so I know what I am talking about. The stoma is (or at least it should be in the normal world) the biggest problem for a stoma. I do not understand people who do not have a stoma and are disturbed by ostomates, that we kind of stink, change bags, touch food, etc. Stupid! As if healthy people did not wipe their four letters, did not cook food later … And as for the bad smell of people or their apartments, I have never heard greater stupidity. It does not have any smell, because the bags that have been produced for years do not let the ‘bad smell’ leak through. And between us speaking, as you must know, our stomates’ feces’ smells’ rather of what we eat, rather than stinks like the feces of ‘healthy people’. So this is an artificial problem. You can make love with a bag as normal as without a bag, go for walks, work, go on trips and mostly eat everything. And those who treat stomas as lepers should be ashamed, because we are the same as you, or maybe better, because we have gone through a lot and we are able to understand other people and pay attention to them. Greetings to all ostomates. Head’s up!
– I have been living with a stoma for three years and I observe that – although very, very slowly – public awareness of bowel and rectal diseases is growing. Despite this, I still feel the usual human rudeness very painfully. I can’t understand how you can make fun of ostomates, and yet there are plenty of people like that.
Jerzy Truchanowicz from Białystok is the only climber in the world who reaches the summits having the first disability group. For years he has been living and cultivating his passion with an emergent stoma.
In one of the press interviews he said: Stomia, i.e. an artificial anus, is not a reason to hide or hide in four walls. This is the same prosthesis as a cane, crutches, false teeth, an eye or a leg. Unfortunately, most patients in Poland cannot cope with this problem. Another thing is that an intolerant society does not make it easy for them. So they hide their disability even from their families, thus depriving themselves of much-needed support. Certainly the necessity to live with a ballast on the stomach and all the consequences of this fact is a serious burden on the psyche. For many patients, this situation is the end of the world. They become depressed, believing that nothing awaits them in their lives anymore. “
For Jurek Truchanowicz, the disease became a challenge.
Tekst: Joanna Weyna Szczepańska