#World IBD Day: Carly’s story

As a young tween, at 14 years old, the only thing “wrong” with me was that I got bad headaches sometimes. That was until I started experiencing serious pain in my belly when I needed to go to the bathroom. Things escalated from there and I would continue to experience terrible symptoms for two years before a diagnosis.

During your freshman year of high school typically you worry about if you’re wearing cool enough clothes, talking to your crushes, and having sleep overs with the group of friends. Instead I worried about if I was going to have an accident while sitting in class.

First it started with the belly pain, then it went to diarrhea, then so much blood that it looked like I murdered someone in the toilet. My mom took me to the best child’s hospital in our area and for two years they did every test imaginable to see what was going on (they probably should have figured it out in the first 5 minutes of meeting me for the first time but I’ll touch on that in a minute). So, for two years (the middle of 9th grade to the middle of 11th) I suffered with these super embarrassing symptoms that NO teenage girl wants to talk about. I got so many tests and labs done that I think I just went numb to the fact that they were poking and prodding at me all the time and blocked out most of it. I remember getting sooooo many blood tests, doing stool samples, ultrasounds, MRI’s, and probably even some CAT scans in there somewhere.

In the beginning, I went to a small charter school where everyone knew everything about everyone, and it was hard to hide the fact that someone was leaving the room VERY often to use the bathroom throughout the day. In the middle of my sophomore year, I switched to a larger public school because we moved. That was a lot easier to use the bathroom without being noticed by many because there were so many different students and each class was full of a different group of students.

It got to the point where this children’s hospital was not finding any answers for me and my symptoms were just getting worse and worse. Eventually I couldn’t retain any nutrients from anything I ate or drank because it just came right out. I spent a week in the middle of junior year in bed because I was so dehydrated and just had zero energy. I got up to go to the bathroom and I laid back down and slept until my body woke me up again. My mom called an adult GI doctor that she was given the number to by a family friend, praying that he would see me even though I was a teenager. As soon as Monday came around, she called and spoke to him on the phone about my situation, it was that day that he literally saved my life. Just by my mom describing to him what was going on with me and the fact that she has Ulcerative Colitis (something the children’s hospital clearly didn’t take into account), he immediately told her he feels like I had the same thing. I remember my mom struggling with some health problems when I was younger and going to the doctor a lot, but I had no idea what was going on because I was too young.

He immediately called the hospital he was affiliated with that I was coming, and he admitted me right away. That night was such a blur because I was so tired and weak. I usually have such bad anxiety with needles and hospitals, but I let them put my IV in and everything without even wincing. The next morning, he performed a colonoscopy (my first of many) and confirmed that I indeed have Ulcerative Colitis. He told my mom that the condition I was in when I first came in the night before was dangerous. I was so dehydrated that if I was an older person or baby, I would have died. So, for the next week, I spent my days in the hospital getting my strength back and finding the right medication that worked for my body. I was on 4 pills of Lialda once a day, which was a new medication that you only needed to take once a day (which was awesome), and the dreaded Prednisone. I got out the day before Christmas Eve (thanks colitis) but thankfully that also gave me more time to rest because school was out for winter break.

From that day on, it was a rollercoaster for many years. When I graduated and went on to college, my UC was still not completely under control. Every morning when I woke up, I would go multiple times (it was worse in the morning for some reason). It’s hard to avoid 8am classes your first year of college so I was stuck with taking a few of those. I had an accident in the car on the way to campus once or twice which was so belittling. I felt so defeated and embarrassed when that happened. None of my friends experienced anything like what I was dealing with and my mom didn’t really talk about her experience that much.

I had one awful professor who called me out one day for leaving the room 3 times during an 80-minute class period. After the 3rd time I came back, she stopped teaching and gave the whole class a lecture on how it wasn’t appropriate to be leaving class to go smoke and that if she continued to see people leaving the room so much she would report/fail us for poor attendance. I was boiling, sitting there in my seat because I knew she was talking about me. No one else had left the room on this particular day. I was so angry that I went up to her after class. If you know me, you know I HATE confrontation. I went right up to her and I said, “Just so you know I have a condition where I need to use the restroom a lot. It’s called Ulcerative Colitis.” With that I walked away and cried the whole way home. I told my mom and the next day she called the dean at the school to talk to him about this professor. She was so angry that this professor did that to me. The dean was so nice and so accommodating and made a note on my record that stated I could use the bathroom whenever and however much I needed, and it would stay there the remaining time I went to that school. After that I had no issues what so ever and that teacher never talked to me the rest of the semester.

I didn’t have any terrible experiences after that either except when an older woman I worked with at the department store thought I was pregnant, but it was just because I was on Prednisone (ugh). That was embarrassing and made me feel fat, but I knew it wasn’t something I could help. I spend a lot of time on and off Prednisone trying to get my symptoms under control, and I gained a lot of weight using it and hated every minute of it.

I think I was 21 when my colitis started to go into remission. I still had small bouts of it here and there but nothing like the full-blown disease. I have since been in remission and I am now 28. I get very small flares that I just have deal with and push through when I get too stressed or if there is a large change in my life.

Along with colitis, I also have anxiety and depression. I didn’t get diagnosed with those until I was 23. I think they are a product of something else I experienced in my life and not my colitis but when I get small flares they are brought up. My anxiety gets REAL when I am in a flare, no matter how big or small, and I have to go out in public. I get terrified of having an accident/ not being able to find a bathroom in time. My depression then rears its ugly head because I get down about having a flare in the first place. It makes me feel mentally/emotionally and physically terrible.

Overall, I am doing very well at the moment. I have started studying yoga and it has done wonders for my UC, anxiety and depression. I am trying to start a healthier diet now that I am in remission and want to stay that way. I am way more concerned about what I put into my body but in the best way because I know how crappy my body can feel, and I want to fuel it full of good healthy nutrients. My mom and I do the Take Steps Walk for Crohn’s and Colitis each year in Philadelphia to raise money for research. I have also recently started an Instagram page (@learning_to_breatheee) where I am sharing my UC journey, along with my study of yoga and dealing with anxiety and depression. After 12 years with this disease, I am finally proud and open about my experience with it. I look forward to meeting people with similar situations and am no longer ashamed.

I have since graduated with my associate’s and bachelor’s degrees and work as a nanny and substitute teacher until I find a full time teaching job!