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“If you hate to see my bag on my stomach, I will understand”: How I live with a stoma

SOMETIMES HUMAN INTESTINAL ceases to function normally. Then the surgeons make a small hole in the patient’s abdomen through which part of the intestine is brought out. This is a stoma. It is necessary so that food waste falls into a special removable bag. With such a system, they usually go for a year – then the stoma is closed. But in Katie turned out differently. She told how she had been living with a bag on her stomach for nine years and why she was in no hurry to remove it.             

I was a teenager when I first felt wild pains in my stomach. For a long time I hid it from my parents, because I was sure that they would take me to a doctor, and I was mortally afraid of hospitals.        

When my mother found out that I was so bad, she took me to the churches, to the font, to the priests, grandmothers who pray and whisper. My father could not stand this self-medication and sent me to the hospital, where I was diagnosed with Crohn’s disease. It is an autoimmune disease, the causes of which are still unknown.         

Then I have treated intestines, but not until the end. It became easier, and I abandoned this business. And the condition only worsened. At fifteen, I looked like a man from Buchenwald and weighed 20 kilograms. When I went to the hospital for the second time, the doctors said that I needed to remove the stoma. The surgeon, drawing on a piece of paper, explained that I would have something like a pimple on my side , from which food would come out . Of course, I didn’t want any stoma : I was sixteen and wanted to be beautiful. But there was no choice , because by that time my intestines were littered with fistulas that would never have grown on their own.                           

As soon as I had the operation, I felt lightness and freedom from pain. But I didn’t enjoy my new life for long. Three months after I had a stoma, my mother died of breast cancer. Nobody knew about her incurable disease. And she herself did not want to be treated, because she believed that if she was destined to live, she would live, and preferred to travel to monasteries. In addition , then school exams were waiting for me. And everything was so superimposed that I did not have time to accept my body . I just wanted to finish school, bury my mother and figure out what to do next.                       

At first I was scared to look at my stomach. The food waste didn’t bother me as much as the lump of intestine I could see. I was squeamish about changing bags, so my dad did it. If the bag leaked at night, I went to him. It was a shame, but then I got used to it.        

About what I ostomy, I knew very few people. Several relatives and a couple of university girlfriends. Once I stayed overnight in one of them, and in my protok bag. I stained her parents’ bed, and I was terribly embarrassed. And a friend just threw the laundry into the wash – and that’s it. But to me until now not by myself to remember this story. And there was a lot of that, and even now it can happen.                     

I was squeamish about changing bags, so my dad did it. If the bag leaked at night, I went to him. It was a shame, but then I got used to

The doctors said that soon it would be possible to close the stoma. But the operation was constantly postponed because therapy did not help. And in the end, the stoma remained. Yes, I wanted a beautiful belly , I wanted to walk in a separate swimsuit, but at the same time I understood that only thanks to the ostomy I was healthy, I could study, meet boys and eat whatever I wanted.          

By the way, it was the relationship with the guys that played a big role in self-acceptance. I told all of them about the ostomy just before sex. Apparently, she was afraid that they could escape if this fact surfaced earlier. But none of them merged.       

It was the same with my future husband. Before our first sex, I told him that if he hates to see my bag, I will understand. But he said he didn’t care. Then we met for a long time, and a few weeks before the wedding, he told his mother about my illness. She asked him what and how, and he replied that I was an ordinary person, just with my own problems. Now his relatives treat me normally, but sometimes they can say to hide behind, because they do not want me to shine a bag in public.                      

And my husband accepts me for who I am. He saw me without a bag. I understand that he is a close person to me, but still, seeing someone else’s shit is not very pleasant. Therefore, I try to hide behind, especially if I am wearing a transparent bag. And when we quarrel, I can reproach him, they say, why was it necessary to choose such a patient. He closes and grumbles that the stoma has nothing to do with it. I never asked directly how he felt about my stoma, but I am grateful that he is with me and I am not alone.                           

When it comes to sex, there are no restrictions for me. Everything is possible: even on the stomach, even while standing, even lying, even under the shower, even BDSM. The main thing is not to injure the intestines. Anal sex is also possible. True, it differs from what happens in healthy people, because my rectum is only seven centimeters long, plus over the years it has managed to overgrow a little. But what difference does it make if everything suits me and my husband?           

Our second child was recently born. For the first pregnancy I did not prepared: do not be inspected and is not to be tested. It was a complete surprise for my husband and me . The doctors scolded me for being irresponsible, told me how I can do this if I have a stoma.           

But despite this, the first time it was easier to leave nine months than the second, even though we had planned it. When I was carrying my second child, I had complications in my kidneys, and in the last stages it was so bad that I was afraid to never get out of bed. I mentally prepared that they would do a caesarean for me, but, like with the first baby, I gave birth to the second myself.                  

Six months after the birth of my first child, I had an obstruction. I had an operation, after which I had to stay in bed. And so, lying in bed, I caught myself that I would like to talk about the ostomy, share life hacks and help those who had just been taken out.        

I asked my husband how he would react to what I write on Instagram about my illness. At first I was concerned that on this know his friends who have signed. He said, “You are my choice, and friends are friends.” But then I didn’t have the courage to publish the post. And only a year later I decided on it.                   

Yes, I talked about it, but still, sometimes I want to hide half of my belly in photographs. It’s one thing to say I’m an ordinary person, and quite another to take a sexy photo, sticking out your stoma. This is difficult for me, because I always think about what others will think.       

Although two years ago I was even more constrained. Then I tried in every possible way to cover the bag, wore something baggy. There was a time when I brazenly photoshopped a stoma. There is a photo where I am in a swimsuit and shorts, and my stomach is clean. I erased the bag because I was ashamed to show it.         

I sometimes want to hide half of my belly in photographs. I always think about what others will think 

People can be bothered not only by the sight, but also by possible sounds and gas formation. Subscribers write to me: “Katya, I do not go out into the street, because I can hear something gurgling.” And I want to shout to them: “Don’t worry, you can’t hear anything! People on the street are busy with their own affairs and thoughts, they do n’t care what your gurgles are. ”              

I want to show that the fears of ostomists like “no one will love me ” and “ I will not have anyone ” are in vain. Some ostomy women listen to me, but men are more insecure after surgery, consider themselves ugly and sick.            

Doubts are usually experienced by people who need to walk with a bag on their side for a year or two, and then they will have their stoma removed. And I have been living like this for nine years. Probably, I would also like to sew everything up, but, most likely, this is impossible, because my rectum has not been working for many years . It is not difficult to close the stoma, but what the consequences will be and whether it will be better from it is not clear.            

Now I choose comfort and even found advantages, for example, I do not need to run to the toilet every three to five hours . Plus I can eat and drink whatever I want and in any quantity. But those who are closed stoma need to adhere to a strict diet and limit themselves to some physical activity.           

Do I like the stomika has its own problems, for example, there are situations where the bag came unstuck in the subway or on the street. I had to pinch it somehow or put something on it in order to reach the toilet and change it. But at the same time, I am not very worried about the appearance.          

I guess I always had a little high self-esteem, although I never considered myself better than others. I am not the coolest and I do not live richly, but I understand that first of all I can breathe and raise my children.

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