How it feels to live with a stoma

In the case of diseases associated with intestinal damage, it often becomes necessary for a person to install a stoma – this is an operation to remove part of the intestine outward. After such operations, people live with a colostomy bag on their stomach – temporarily or permanently. We asked Ekaterina Vlasova, the author of a blog about life with a stoma , to tell you how to live happily with a bag on your side – and not be shy about it.

Where did my stoma come from ?

My story began when I was 10 years old, I was in the fourth grade. My stomach started to hurt often. I hid this from my parents for a long time, because I was afraid to go to doctors, to go to the hospital. I began to lose weight, my health worsened. Toilet urges, like abdominal pains, have become very frequent.

Of course, my condition was noticeable to my parents, but I said that everything was fine with me. When everything got really bad, dad took me to the Tushino children’s hospital. There I was diagnosed with Crohn’s disease.

My parents took me out of the hospital before the end of the treatment, for some time I took pills, and then it came to naught. And, apparently, in the aggregate, the incomplete treatment in the hospital and the incomplete course of taking pills led to bad consequences.

At the age of 15, I got into the SCCH RAMS. My weight is only 28 kilograms, abdominal pain, which can be relieved only by going to the toilet: I go to the toilet 30 times a day. It was impossible to pull further. The surgeon tried to explain to me what a stoma is , that they live with it, that in time everything will be taken back. There was no other way out except for the operation. First, the small intestine was taken out and they tried to heal the large one. But the treatment failed. Then the large intestine had to be abandoned, it was removed. There was hope for the rectum and further creation of the reservoir.

Living with a bag on your side

This is how I, an ordinary teenager, began to live with a bag on my side. At that time I didn’t care much about what would happen next, I just wanted to survive and get rid of the pain. I didn’t understand what it was like: to live with the gut out. With a bag. It was scary to look at the intestines. In the hospital, the nursing staff was engaged in changing the colostomy bags, and at home I asked my dad. I had to get up at night, and with a guilty look, wake him up, ask him to change the leaked bag. I then hoped that the bag would be removed soon, and my stomach would be clean, nothing would interfere. But there were always some circumstances due to which it was impossible to return everything back. And over time, I just got used to it.

Ask me about three years ago, I would say that stoma is a rare phenomenon. But when I started blogging, I ran into people experiencing the same problems. Then I began to understand that there are a lot of people who walk with a stoma . It’s just that it’s not customary to talk about it openly. They are embarrassed, many find it hard to accept themselves, there is little information about such a life. People who face difficulties in terms of self-acceptance, ostomy care , life restrictions and permissions have absolutely no idea where to look for answers to their questions. Not every hospital tells and shows the right things. In this regard, our society annoys me.

I hope not to offend anyone, but I want to emphasize how you should not behave. There are people who do not have a stoma and, perhaps, never will, but they begin to ask: how to avoid surgery, what to do so that I do not have a stoma taken out , and other questions that directly relate to the ostomy person, but have nothing to do with healthy people.

In our chat, there are girls and guys with cancer, ulcerative colitis and Crohn’s disease. There have been cases that stomas were taken out after an accident, with unsuccessful operations on other organs. I tell my guys in the blog and in the chat: life does not end at the ostomy . Yes, it may be difficult to accept yourself. Yes, you may be afraid of your ostomy and care. Most likely you will be driven about by sounds. Enrages that the bag can come off at the most inopportune moment, and the contents can be on clothes, linen, on the bed. But for many, stoma is salvation and the only way out of a deplorable situation. Some are very much looking forward to this operation and live with a stoma all their lives, allowing themselves more than they had before. There are those who find it hard to put up with a bag on their side, they want to get rid of it as soon as possible.

You need to understand that after the operation, you must adhere to a certain diet, based on your disease. Further, if you are in remission, then you can afford more. For example, I allow myself everything that I love. Harmful and not harmful. Here everyone decides for himself, you need to build on your condition.

The big question is: is your stoma permanent or temporary?

If constant, then, in general, you can relax and enjoy life. Maintain good skin condition around your stoma and take care of your health. If the stoma is temporary, then you need to remember about the rectum. You need to do supportive exercises to tone the muscles so they don’t weaken. But first of all, you need to understand that your life has changed at least a little. Accept yourself. Accept your own body, understand that there are now some limitations, but life is not over. You can also go in for sports, swim, communicate, have fun.

You can go in for sports and sex. The first has limitations. You can not lift heavy weights and strain your stomach too much. But I know that there are overseas bloggers, bodybuilders with a stoma . As for sex, there are no restrictions. The main thing is that you feel comfortable.

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