I Have Ulcerative Colitis and Used to Go to the Bathroom 20 Times a Day

Daniela Soto, 25, lives in Los Angeles and was diagnosed with ulcerative colitis (UC) when she was just 21. If you don’t know much about this inflammatory bowel disease, it’s caused by an overactive immune response and wreaks havoc in the large intestine. Anyone can get the condition, but most people develop it between the ages of 2src and 4src. Soto has experienced some pretty severe UC symptoms during her flare-ups, including blood in her stool, stomach pain, and uncontrollable diarrhea. Here’s her story, as told to health writer Theresa Tamkins.

About three years ago, during my senior year of college, I started having health problems. I’d never really experienced digestive issues before, but I started seeing blood in my stool. It was so bad that the toilet water would turn red. This is obviously not normal, so I went to see my doctor, and he diagnosed me with hemorrhoids. This seemed odd to me because I had no other hemorrhoid symptoms, like itching or pain, but I used the ointment he gave me anyway.

The bleeding didn’t get any better, and then I started having excruciating pains in my stomach, a bit like menstrual cramps. They were very intense and came in waves. Sometimes I could ride them out, but if I needed immediate relief, going to the restroom would help. And so, at a certain point, I was going to the bathroom 1src or 2src times a day. I also lost a lot of weight—1src pounds in just a few weeks.

I don’t think my doctor ignored or dismissed my symptoms. I think at first he just saw this healthy-looking 21-year-old and didn’t think it was that serious. But when the hemorrhoid cream didn’t work, he told me I needed to see a gastroenterologist. Unfortunately this was all happening earlier on in the pandemic, when most specialists were booked up for months, and I needed to see someone right away. I spent hours on the phone calling different places, but many were closed or busy. Eventually I found a gastroenterologist on Zocdoc who could see me the next day. I told them about my symptoms, and they said I needed a colonoscopy and an endoscopy at the same time. [Editor’s note: These exams are sometimes done simultaneously under anesthesia; the former is used to check the colon and the latter to examine the stomach and upper gastrointestinal (GI) tract.] I had both of those exams about a week later. That’s what confirmed I had ulcerative colitis and ulcers on the right side of my colon.

They put me on a medication called mesalamine. I took four huge pills daily, but I also had to use the drug in a liquid form as an enema. The medication came in this little tube, and I had to squeeze it into my colon. The medication needed to stay in for eight hours to help heal the ulcers, so I used it every night before I went to bed, which was not a fun time. I couldn’t just fall asleep—I was always like, Wait, I have to put my enema in. But thankfully, after using it for a while, I started feeling better.

My gastroenterologist didn’t give me much guidance when it came to food. He told me I could continue to eat what I usually ate and just take the medicine. But that didn’t seem right to me. So I started working with a naturopath, who suggested making some changes, like avoiding gluten, dairy, raw veggies, carbonated drinks, caffeine, and other things that can irritate the GI tract if you have UC. He also encouraged me to cook on an iron skillet because people with ulcerative colitis are often severely anemic, as blood loss is a common symptom of the condition. When you cook with this type of pan, some of the iron gets into the food, so you get a bit of the nutrient when you eat. I wound up completely changing my diet and saw immense improvements in my symptoms.

However, I’ve still endured some bad flares in the last three years. When I was diagnosed, I weighed 12src pounds. During the worst flare I’ve ever had, I dropped down to 9src pounds. I remember trying to go out for a walk during that time, but I couldn’t even make it down the block; I immediately needed to use the restroom. After that, I was afraid to leave my house. My social life plummeted. And yes, I’ve pooped my pants in public.

I once had a really bad experience at Bath & Body Works. I was feeling pretty good about my UC and wanted to treat myself. I was so happy. But then I had the sudden urge to use the bathroom, and there was no toilet at the store. When this happens I really can’t control it. There are many times when I’m running to the restroom and I just don’t make it in time.

I also have severe sleep deprivation during flares because my stomach pain wakes me up every hour. So no matter how tired I am, my body never rests, which leads to brain fog, exhaustion, difficulty focusing, and an inability to do much throughout the day since I’m so drained. I would say this is one of the side effects of UC that isn’t often discussed. I avoid road trips and adventure-type excursions even when I’m not in a flare simply because I’m scared I might start feeling sick and have limited access to a restroom.

I’m still trying to figure out everything that triggers the flares. I’ve found that during moments of stress, I tend to get symptomatic—the pain, urgency to use the bathroom, and blood in my stool start. Once I really focus on my diet, try to calm myself down, and take my medicine, however, the symptoms go away. A flare can last two weeks or just a few days; I can’t really predict it.

This has definitely been a mental strain. I was never an unhealthy person; I always did the “right thing” healthwise. But this diagnosis still happened, and at first I experienced hopelessness, helplessness, frustration, and feelings of, Why is this happening to me? But after finding the care I needed, my mindset shifted. This is what the universe gave me, for whatever reason, and it has led to so much self-discovery. I quit my job a little over a year after I was diagnosed. I wanted to become a lawyer, but I realized I couldn’t do that with UC because any stress sends me into a flare and law life is just so stressful. I worked as a secretary at a firm and studied for the LSAT to get into law school—only to quit the firm, get a job at a wellness start-up, and do a complete 18src on my life. I’m now a holistic health coach and yoga instructor.

If anything, this condition has made me stronger. I feel so grateful for moments when I’m not in pain—life is happier when you don’t have to think about where the nearest toilet is. For example, I was sitting in traffic this week, and I thought, Wow, I’m so grateful that I can be in my car and not have to think about a toilet or be scared that the pain will come. If I sat for an hour in traffic in any other life, it would have been so annoying. But at that moment I was just like, This is amazing.

Luckily, I have a very strong support system. I live at home with my parents and brother, and they’ve been by my side the entire time, coming to every doctor’s appointment and colonoscopy. My friends are great too, and this diagnosis also led me to meet new friends who have chronic illnesses as well. I’ve even become sort of a UC influencer on TikTok, which is interesting. At the beginning of my UC journey, I couldn’t find much online. Not many people have UC, but I make the videos anyway, and I have a lot of fun filming, editing, and posting them. Now I get hundreds of messages from people who are like, “Wow, I didn’t know that,” or I get comments from people who were just diagnosed saying my content helps them feel less alone. The thing is, this disease can be both debilitating and isolating, and it’s hard to explain it to people who don’t understand it. What motivates me now is those messages and comments—just the fact that someone is talking about the condition is really cool to my followers.

I believe everything happens for a reason. Even though it sucks to have UC, it’s truly been the catalyst for everything positive in my life. Without this diagnosis, I wouldn’t be the person I am today. And so, in a weird way, I’m thankful for it because it’s exposed me to this world I wouldn’t otherwise know.

This interview has been condensed and edited for clarity.

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