Living Life to the Fullest: My Journey with an Ostomy Bag

From a young age, I was always on the go. I loved traveling, playing sports, and simply wandering around my beloved St. Petersburg for hours. In 2015, while in my second-to-last year of university, I decided to take on a full-time job. I didn’t want to miss any lectures, so I chose to work as a night administrator at a hotel.

The Beginning of the End

Initially, I handled everything brilliantly and didn’t mind sleeping only 2-3 hours on workdays. However, over time, the lack of sleep started to affect me. I developed a severe neurosis, constantly worrying about my job performance and fearing my boss’s disapproval. My health took a backseat, and I stopped taking care of myself altogether. Soon, I started experiencing the first symptoms of ulcerative colitis (UC). For a long time, I suffered from severe abdominal pain, and bloody diarrhea became a horrifying reality. My first hospitalization followed shortly after.

I received blood transfusions, IV drips, and high doses of hormones. Surprisingly, I didn’t panic. I thought it was just a simple stomach upset, something everyone experiences.

The Struggle Continues

After treatment, I returned to my normal life and forgot about the problems. But a few months later, the terrible symptoms returned. Although the gastroenterologist’s prescriptions improved my condition, I never fully recovered. I became accustomed to the abdominal pain and frequent bathroom visits.

I’m not one to sit at home and limit my activities due to discomfort. So, I continued working, frantically preparing for my thesis defense, and traveling. In the summer of 2016, I went to Belarus. Unfortunately, the relaxed countryside vacation with plenty of delicious homemade food did not suit my body.

Imagine going to the bathroom up to 25 times a day, accompanied by excruciating pain. I barely made it through that trip. But even after returning home, things didn’t improve. I developed a panic fear of going outside because I needed to use the bathroom every half hour.

A Long Road to Treatment

That’s when my treatment journey began. I saw various doctors, took countless pills, and tried to identify which foods worsened my digestion. Sometimes I felt better, but soon enough, I found myself back in the hospital.

In the summer of 2018, I underwent another round of treatment. Although not all problems disappeared, I felt significantly better. I was so happy that a couple of days later, I decided to meet up with friends. At that time, St. Petersburg was celebrating the FIFA World Cup final. The weather was beautiful, and everyone was in high spirits, looking forward to the game.

I remember wearing a thin, light dress that day. As my friend and I were riding the metro, I suddenly felt an intense pain in my abdomen—worse than ever before. I climbed the escalator in a semi-faint state, desperately searching for a bathroom. I rushed into a nearby café, ignoring the long line. At that moment, I didn’t care about explanations—blood was running down my legs!

Realizing the state of my dress, I sat on the floor and started crying. I was so desperate that I didn’t care about the people around me. Fortunately, a kind cleaning lady took pity on me and gave me a whole roll of paper towels. I undressed, wrapped myself in them, and started washing my dress, then tried to dry it with a hand dryer.

A Turning Point

I have many stories I’d rather forget, but the turning point was my trip to Europe. During periods of remission, I quickly returned to my active lifestyle. In the fall of 2018, a friend and I went on a short vacation—first to Portugal, then to Spain. Unfortunately, a couple of days before the flight, I felt very ill again.

I didn’t want to let my friend down or waste the money spent on tickets and hotels, so I stocked up on a large number of pain and diarrhea medications. Little did I know that my condition would become so critical that the pills would run out in just a few days! The entire trip was a blur. We walked a lot and visited local attractions. Despite the many interesting restaurants around, I tried to eat almost nothing to avoid using the bathroom.

The problem is that European establishments don’t let you use the bathroom without making a purchase—at least buying water. Oh, how much money we spent on water then…

Moreover, during the attacks, I couldn’t communicate with the waiters—the countdown was literally in seconds. In one such moment, I rushed into the bathroom of a bar in Lisbon, leaving my friend to explain the situation to the staff. Despite her words that I was sick and feeling very bad, the bartender started yelling at her and literally tried to break into the bathroom door to kick me out. We couldn’t resolve the conflict and had to flee the bar.

Honestly, that time I just wanted to return home quickly, and I didn’t enjoy the trip at all. After the incident with the bartender, I felt more humiliated than ever. Why should I have to justify and suffer from something I can’t even control?

By the way, in Russia, I never had such situations—everyone always tried to meet me halfway and help. I know that in the UK, there is a special card that people with UC can show even in the most expensive establishments, and they cannot be denied access to the bathroom. It would be so convenient if there were some unified document for patients like me, but alas, it remains only a dream for now.

Love and Pain

After returning to Russia, I finally decided to have surgery: another treatment option didn’t help, and the situation only worsened.

After long discussions with specialists, I decided to have a stoma. You’re lucky if you don’t know what that is. A stoma is an artificially created opening in the abdomen to which an ostomy bag is attached. This operation allows you to get rid of pain and frequent urges—to a person with a stoma no longer goes to the bathroom in the usual sense.

I counted the days until the operation and fantasized about how my life would change. Moreover, at that time, I started dating a young man and was on cloud nine from the sudden surge of feelings. By the way, about him: we met during the most severe period of my exacerbation, which couldn’t help but affect the development of our relationship. As you understand, due to the specifics of the disease, I couldn’t hide it from him for long.

On our first date, I explained to him that I suffer from a very serious intestinal disease—be prepared for this if you want to continue communicating with me, or leave. Fortunately, the young man took it normally and to everything that happened to me during the calls. Of course, this did not save us from misunderstandings and conflicts—it is difficult for a healthy person to understand what exactly is happening with the body of a patient with UC. For example, my chosen one for a long time could not understand why I want to make a stoma—he believed that after that I would not be able to lead a normal lifestyle and would become almost a bedridden patient. He is an athlete, so it was very important for him that I could be as active as he is. What to say, I myself wanted to live life to the fullest!

A New Life

In February 2019, I had the affected parts of my colon removed and a stoma placed. Already a day after the intensive care unit, I was transferred to a regular ward, and a week later I was discharged home. I was amazed at how quickly I recovered. I didn’t even need painkillers, and I could walk independently on the third day after the operation.

I was incredibly happy and couldn’t wait to start living my new life. I was looking forward to meeting my boyfriend, who supported me very much during this difficult period. I wanted to show him that I was still the same active and cheerful girl, and that the stoma did not make me disabled.

However, not everything was so smooth. Despite the support of loved ones, I had to face many difficulties and prejudices. For example, many people do not understand what a stoma is and how it affects a person’s life. Some even think that a person with a stoma cannot lead a full life, engage in sports, or have intimate relationships.

But I want to prove to everyone that this is not the case. I continue to travel, play sports, and enjoy life. I do not deny myself either my favorite food or intimacy. I want to show that a stoma is not a sentence, but a new opportunity to live fully and happily.

For more information on ulcerative colitis and ostomy, you can visit the Crohn’s & Colitis Foundation website.