Living with an Autoimmune Disease: My Body’s Battle Against Itself

Living with a Dangerous Disease: The Physical and Psychological Struggle

Living with a life-threatening illness is not only physically challenging but also psychologically taxing. In Russia, the number of complex, life-threatening diseases diagnosed each year is increasing, posing significant challenges to both existence and societal integration. One of the persistent issues in our country is the diagnosis of autoimmune diseases, which, according to statistics, affect 20-25% of the population in various forms. Today’s story is about a young woman who has lived with ulcerative colitis for many years, battling her own body’s rejection of itself.

Elena’s Story: A 23-Year-Old from St. Petersburg

Ulcerative colitis (UC) is an autoimmune disease where the body fails to recognize a part of itself and attempts to reject it. In my case, it’s the intestines. From my experience, not all doctors understand the origins of this disease, and in provincial areas, it often goes undiagnosed. I was a young girl with eating disorders and panic attacks, minding my own business, when suddenly, during a trip between cities, I fell severely ill. We had to rush to the nearest town at breakneck speed.

It was the first week of January, so my parents and I attributed it to food poisoning. The next day, I felt better, and the fear subsided. After the holidays, I returned to school and resumed my regular eating schedule. That’s when my intestines started to fail. Initially, I felt unwell, but then I began losing a significant amount of blood.

Thanks to my regulated eating schedule, I could somewhat control the timing of my vomiting episodes. However, with each passing day, I felt worse after eating. After a week, we finally decided to see a doctor. Since I was under 18, we went to a polyclinic where we were not welcome due to a conflict with the chief physician. I remember that when I was very young, this doctor’s favorite diagnosis for me was ARVI (acute respiratory viral infection). She never treated me for anything else. Her misdiagnosis nearly turned my bronchitis into pneumonia, and the asthma was an added bonus. There was no one to complain to about the chief physician, so we had to navigate the system.

The Struggle for Diagnosis and Treatment

My grandmother, a woman hardened by bureaucracy, tried to arrange for me to be admitted to the local hospital for examination through her connections. The chief physician insisted that we first needed a conclusion from a surgeon, specifically from the surgeon at our polyclinic, which required a referral from our local doctor. As a result, my grandmother wrote a complaint about the local doctor, who reluctantly wrote me a referral and said something nasty as a parting shot.

However, we never made it to the surgeon. Our neighbor, the head of the neurological department at another polyclinic, helped us and took us to a surgeon. The surgeon said that my condition was not within his expertise, and the chief physician of the hospital added, “Well, since there is no hemorrhoids, there is nothing to treat. Come back in a month if you don’t get better.”

By February, I had lost 7 kilograms. My parents lived in Chita at the time, and my mother managed to arrange for me to be admitted to the regional hospital, where the department head was a distinguished practitioner and Honored Doctor of Russia. For another month, they could not diagnose me, although they took tests every day. However, since they prescribed Salofalk, a medication commonly used for symptoms like mine, I started to improve.

It was not until the end of February that I finally began receiving proper treatment. I continued taking Salofalk, a medication that suppresses the immune system and prevents the body from rejecting its own cells, in my case, the intestinal cells. Salofalk is quite expensive, and in Chita, they wanted to switch me to a generic version, but it made me nauseous.

Like any other potent medication, Salofalk had its side effects: hair loss, brittle nails, and a significant deficiency in folic acid. To put it into perspective, pregnant women typically take one full tablet of folic acid a day, but I had to take two to three tablets with each dose of Salofalk. I had to take folic acid for a long time because I could not consume fresh vegetables, which are rich in this vitamin.

In St. Petersburg, where I live now, everyone is treated with Salofalk. Its side effects are considered non-critical and can be managed with additional vitamin intake. Fortunately, I have not had to undergo any surgeries, but I regularly need to have a colonoscopy. This year, due to a flare-up, I have had two colonoscopies in the last six months.

Living with Ulcerative Colitis

There is a condition called irritable bowel syndrome (IBS), where the intestines cannot digest coarse food or food it considers coarse. This is usually fiber, which remains inside the body and rots, leading to frequent or infrequent bowel movements, accompanied by bloating and severe pain. IBS can be a concomitant problem with intestinal diseases like mine or Crohn’s disease, and it is treated with similar medications.

I found out that Salofalk is often prescribed for ulcerative colitis. However, it was prescribed to me much earlier than my diagnosis was confirmed. In fact, a whole commission was assembled to determine my diagnosis. With this disease, I was the only one not only in the department but in the entire hospital. They even brought students to see me as an example of someone with severe anemia.

It is terrifying and sad that I lost a lot of blood while being denied treatment. Because of this, I still cannot return my hemoglobin to normal levels. As for the treatment itself, it was not as scary as it seemed—minimally invasive. The doctors could not understand what was wrong and where all the problems were coming from, so they did not know what to do with me next. Every two days, they took blood from a vein, every three days from a finger, and urine and stool samples twice a day. They performed an ultrasound of the abdominal organs every week.

The difficulty was that UC typically appears in women after the age of 30 and is very rare in men. It is also uncommon in children, and since I was treated by pediatric doctors, this was a rare case for them. There was no one in my family with autoimmune diseases. I never took any laxatives to lose weight or anything else that could have triggered the disease—it was a mystery to everyone.

As the doctor explained to me, they only treat patients up to the age of 18. Since doctors do not strive to share information with each other, which is characteristic of Russia, they do not know how the disease progresses in those who have grown up with it.

After a month of treatment in the hospital, I was discharged. However, for the remaining year and a half until I turned 18 and could no longer be treated in a children’s hospital, I traveled to Chita every two months to see the doctor. I returned to school at the end of April and quickly caught up on what I had missed.

The Impact of UC on My Life

UC and the stress it caused had a significant impact on me. For two years, I could not coordinate with my new body. I bumped into people and objects, and my intellectual abilities noticeably declined—I literally became dumber. On average, it takes me three to four times longer to understand something complex than it used to, which significantly affects my studies at the university—I could not pass the mathematical analysis course at the physics department.

I have learned to manage my body, and the clumsiness even started to add a certain charm. However, the decline in my intellectual abilities is a catastrophe. The ability to think quickly and solve complex problems is very important to me, and I struggle with it now. It is very difficult. I cannot go to a teacher and say, “I’m sorry, I’m sick, and I’m not very smart. I will understand what you are saying in about a month.” They would tell me to get lost, and they would be right. I know I can do everything; I just need more time.

My mental state is directly dependent on what I eat. Learn more about ulcerative colitis from the National Institute of Diabetes and Digestive and Kidney Diseases.