What it is like to live with a stoma

How I got a stoma

My story began when I was 10 years old, in the fourth grade. My stomach started hurting a lot. I hid it from my parents for a long time because I was afraid to go to the doctors, to go to the hospital. I began to lose weight, my well-being worsened. I had to pee, as well as abdominal pain, very often.

Of course, my parents could see my condition, but I told them that I was fine. When things got really bad, my father took me to the Tushino Children’s Hospital. There I was diagnosed with Crohn’s disease.

My parents took me away from the hospital before the treatment was finished, I took pills for a while, and then that went away too. And apparently, the combination of under-treatment in hospital and an incomplete course of pills led to bad consequences.

At the age of 15 I was admitted to the NRDC of the Russian Academy of Medical Sciences. My weight was only 28 kilograms, I had abdominal pain which could only be relieved by going to the toilet. I had to go to the toilet 30 times a day. I could not take it any further. The surgeon tried to explain to me what a stoma was, that people lived with it, that with time it would all be taken back. There was no other option than surgery. At first my small intestine was taken out and they tried to heal my large intestine. But the treatment failed. Then I had to give up my large intestine as well, it was removed. There was still hope for the rectum and further creation of a reservoir.

“The large intestine had to be abandoned as well, it was removed.”

Life with a bag on my side

That’s how I, a normal teenager, started living with a sack on my side. At the 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 my intestines out. With a sack. It was scary to look at my bowels. At the hospital, the nursing staff did the changing of the colostomy bags, but at home I asked my dad to do it. I had to get up at night and guiltily wake him up and ask him to change the leaky bag. I hoped then that the bag would be removed soon, and my stomach would be clean, with nothing in the way. But there were always some circumstances that made it impossible to put everything back in. And eventually I just got used to it.

If you’d asked me three years ago, I’d have said a stoma was a rare occurrence. But when I started my blog, I ran into people going through the same problems. Then I began to realise that there are many people who walk with a stoma. It’s just not something people talk about openly. It is embarrassing, many people find it hard to accept themselves, there is little information about this kind of life. People who find it difficult to accept themselves, to care for their stoma, and to accept the limitations and permissions of life, do not know where to find answers to their questions. Not every hospital tells and shows the right things. Our society annoys me in this respect.

I hope not to offend anyone, but I want to make a point about how not to behave. There are people who don’t have a stoma and probably never will, but they start asking: how to avoid surgery, what to do so I don’t get a stoma, and other questions that relate directly to the stoma person, but have nothing to do with healthy people.

There are girls and boys with cancer, ulcerative colitis and Crohn’s disease in our chat room. There have been cases of stomas being taken out after an accident, with botched operations on other organs. I tell my guys on the blog and in the chat room: life doesn’t end with a stoma. Yes, it might be hard to accept yourself. Yes, you may be afraid of stoma and stoma care. You’ll probably be worried about the sounds. It is annoying that the bag can come off at the most inopportune moment, and the contents can end up on your clothes, underwear, or on the bed. But for many people a stoma is a lifesaver and the only way out of a deplorable situation. Some look forward to the operation and live with the stoma for the rest of their lives, allowing themselves more than they had before it. There are those who find it hard to put up with the sack on their side and want to get rid of it as soon as possible.

You have to understand that after surgery you have to stick to a certain diet based on your condition. Further, if you are in remission, you can allow yourself more. I, for example, allow myself everything I like. I allow myself everything I like. It’s up to each individual to decide, based on his or her condition.

An important question: is your stoma permanent or temporary?

If it’s permanent, then you can relax and enjoy life. Maintain a good skin condition around the stoma and take care of your health. If the stoma is temporary, you need to take care of your rectum. You should do supportive exercises to tone the muscles so that they do not weaken. But first of all you need to realise that your life has changed at least a little bit. Accept yourself. Accept your own body, understand that there are some limitations now, but life is not over. You can still exercise, swim, socialise, have fun.

You can do both sports and sex. There are limitations in the former. You can’t lift heavy weights or put a lot of strain on your stomach. But I know there are overseas bodybuilder bloggers with stomas. As for sex, there are no restrictions. The important thing is that you feel comfortable.

The main thing I want to say is: don’t give up on yourself. Don’t cave in, afraid of the world around you. And know that you are not alone. You just need to find an environment that will support you.



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