My Life with Ulcerative Colitis

My name is Aiyana. I am 21 years old, and three years ago I was diagnosed with ulcerative colitis. 

Before my diagnosis, I had little knowledge of the existence of ulcerative colitis, or even colon diseases at all. While I was having symptoms, I didn’t know what was going on. The diarrhea, the abdominal pain, the urgency, and defecating myself every now and then… These were the symptoms I had when I just didn’t know.

I remember the first time I defecated myself–or almost did. 

I had just come from a nice Qdoba meal by myself and decided to go to Target. After I finished shopping, I decided to grab some gas before I made my way home. I stopped at a Shell station, and I felt a tingly sensation in the pit of my stomach, kind of like it feels to be anxious, but the feeling was right in my lower abdomen.  That’s when I knew I had to use the bathroom. 

As I was pumping the gas, I looked up to the sky to see that it really looked like it was about to rain–not just rain, but pour. I waited inside my car and wondered if I was even going to make it home. 

When I heard the click, I got up, and suddenly it hit me. 

I quickly grabbed my wallet and keys and booked it inside to the bathrooms. It was urgent, and I needed the bathroom quickly. I got to the bathroom, literally shaking to take my belt off. I just barely got my pants off in time. It was almost an embarrassing moment. A very close call!

I would say that after that moment, I began to get concerned. When I got home that day, I told my mom about everything that happened. But she thought it was only due to me being anxious and stressed out. My prom was coming up, so I could see how she would assume that. 

After that almost embarrassing day, I had come to think that maybe I just needed to change my eating habits. So I decided to become a vegan for a bit. I think it helped a little bit, but I was still having some symptoms. 

It wasn’t until my first year of college when I saw that my stool had drastically changed, and my symptoms became much worse. My symptoms were so bad that sometimes it would be hard for me to get out of bed because I was in complete pain. The pain would sometimes feel better if I just laid in a sort of fetal position grasping hold of my stomach. There were times I would use the bathroom with urgency and the only type of stool to come out were blood clots. 

Once I noticed more and more passing of blood, I brought it to my moms’ attention again. She decided to get me into her office to get blood drawn. The test results they saw were alarming. My liver enzyme levels were very elevated. 

After hearing about my blood test results, I finally had an appointment with my physician. I made sure to mention all of the obvious symptoms, and she referred me to a gastroenterologist. 

My first appointment with this new word, the “gastroenterologist,” I did not know what to expect because at the time I still had no idea what a gastroenterologist was. To my knowledge at that time, my family has had no history of any gastro issues. (That was until a few years later, my aunt, my mom’s sister, was diagnosed with Crohn’s after me.)

My gastroenterologist was Dr. Whitney Jones, the founder of The Colon Cancer Prevention Project. Dr. Whitney suggested a colonoscopy as soon as I possibly could. So, that was exactly what I did. 

My first colonoscopy was not too bad. I don’t think I was nervous; more so I wanted to know what was going on with my body. I was just preparing myself to hear the results. 

After I finished with my first colonoscopy, I woke up with my mom standing next to me. The first thing I believe I said was, “I’m hungry.” Maybe that was just the anesthesia talking, or it could’ve been that I had water fasted the day before my procedure. 

The second thing I asked my mom was, “So what’s the verdict?” 

Dr. Whitney said, “She has moderate to severe ulcerative colitis. It’s an untreatable disease, but we can keep it under control. She will essentially have to take pills for the rest of her life.” 

After hearing my diagnosis, I was relieved to finally know why I was in so much pain, but also, I didn’t really think about it. So, I shrugged it off. 

That is… until I got home later that day. 

At home, I sat on my couch just thinking. That was when reality hit me. It hit me that I had this disease, it was a life-long disease, it was incurable, and I would have to take 3-4 horse pills (big pills) for the rest of my living days. 

I just cried. I was upset because I felt less than normal. Just thinking that this happened to me, I was overwhelmed. 

After three years of living with this disease, I’ve had some time to learn about my disease and many other colon diseases. I have done some research on individuals who have healed themselves completely or put themselves into complete remission due to just diet. Now, to be able to heal yourself from these diseases, if that is what someone really wants, you have to work for it just like anything else. There comes a lot of trial and error to it, so strength is a big part of that too. 

For a little bit, I did a natural holistic route. I took no medication. It didn’t work for me this time, but that does not mean I won’t try again. As I tried to do it the natural way, it was hard, but I also have a very busy schedule. 

When it comes to diets or lifestyles that can flare up colitis or Crohn’s, it really depends on the person. But there are some foods that are more likely to flare an individual up with a colon or gastrointestinal disease. Such as: 

Caffeine, dairy products, alcohol, drinks with carbonation, high fiber foods: which include, dried beans, fruits, whole grains, berries, peas, and legumes. Popcorn, because of the seeds which could disrupt the cell membrane integrity of the gut, foods that contain sulfur or sulfites, fatty meats, nuts, nut butter, and seeds, artificial sugars, many vegetables, spicy food, gluten. 

These are only a few foods that can cause a flare, but it does not pertain to everyone because everyone may not react the same to certain foods. I have heard that the vegan lifestyle is good for those who have colon abnormalities (again may not be for everyone). If a lifestyle or diet helps keep your symptoms at an all-time low, stick to it because that is what works for you. 

If I were to give any advice to those who have gone through something similar to me, I would say to keep your head up. Our insides may not be normal, but that is okay. Everybody is different in their own way, but don’t let your differences tear you down. 

It’s just an injured gut!

Aiyana is a summer intern at the Project and is pursuing a degree in Public Health at UofL. 

Learn more about Crohn’s disease and ulcerative colitis at https://www.crohnscolitisfoundation.org/.