A Year in the Life of Ulcerative Colitis
By: Leena Alawaid
Companion Magazine Contributor
I was diagnosed with ulcerative proctitis – a form of colitis, just a year ago this month. When I first got diagnosed it was bittersweet. It felt so good to finally put a name on the illness causing me so much fatigue and pain, but I remember being terrified. I didn’t know how bad my colitis was, but I remember watching my brother struggle through his first few years of being diagnosed with Crohn’s disease and I knew just how debilitating it could be. The night that I got diagnosed I was out at a local show with some friends and had a diet coke to drink. When I got home I remember feeling so sick and as though someone was twisting my insides so tight. I undid the button of my jeans and thought that maybe they were too tight. Just as I was about to go to the washroom I dropped to the floor in pain and immediately began vomiting as well as pooping (I’ve learned to be super comfortable with this topic now) all at once.
I remember trying to shout my friends name for help, but I was in so much pain that I just lay there helpless tearing up a bit. I dragged myself slowly into the shower and rinsed myself off. When my friend finally turned the corner in that direction to check on me I was laying in the tub in pain, crying, pale and sweaty. They begged me to let them take me to the hospital, but I refused. I was 100% convinced that somebody must have drugged me at this show and I was embarrassed to go to a hospital. I felt so irresponsible and I was mad at myself. I took two Advil (which was not a smart idea) and tried to sleep it off. I was awake for 8 hours in the same state, if not worst, before my friend decided to call 911 and explain the scenario, which led me to finally go to the emergency room. In the emergency room due to family history, they immediately drew blood to check my CRP levels, which were extremely high.
I was lucky enough to get through colonoscopy, biopsy, specialist appointments, blood work and a final diagnosis within that month.
I thought that getting the diagnosis would mean things would get easier, but there is a lot that comes with this disease that people are unaware of. I was put on hydrocortisone, as well as 5 ASA. The steroid was a rectal injection since I have Proctitis and the oral method was not as effective once it reached the inflamed area. I was constantly in pain and would go to the washroom a minimum of 18 times a day – this led to my first major issue, which was quitting my job and dipping into my savings to get by. I realized there was a long road to recovery ahead of me and that this was the best for my health.
The next trial I faced was losing friends due to me appearing uninterested in social outings. A lot of people don’t understand that I could be fine one day and in complete pain the next. They thought I was pulling myself away from them, but the reality was that I was exhausted from the medication, I wasn’t absorbing nutrients, I couldn’t physically sit there with them at a restaurant or movie without being interrupted about ten times to go to the washroom. Nothing about these outings seemed to interest me anymore. Not to mention I always had to take an injection at night and I didn’t want to do that or explain that to everyone.
These are very common struggles someone with IBD will discuss, but I found that mental health and Colitis went hand in hand for me and that was a topic that I didn’t find a lot written about. Before my diagnosis I was 5’5 and weighed in at 102 pounds – I was extremely small. I didn’t realize that this was because I wasn’t absorbing nutrients due to this disease. I was so used to being this small and when I would visit family they would always mention that I was “too small”, but I remember just getting offended and not realizing it.
Looking back now I can understand how I didn’t look so healthy. After being put on the hydrocortisone I started gaining weight quickly, I am at an average weight now, but it is still more than I am used to and this affected my mental health much more than I thought it would. I had to up my dose of my anti-depressants because my depression got worst, and then after finally feeling good enough to eat again and absorb nutrients I developed a fear of food.
. I stopped my medication because I couldn’t handle it mentally. I would constantly find myself looking at women on social media with “perfect” bodies and thinking they must be so happy. They must have a great life. I thought this would never be me, I will never feel happy again. To me, I thought I would rather feel sick and go to the washroom in pain than to gain all this weight. It was a lot for me to handle at the time – education, work, sports, mental health, body image, a new diagnosis, friendships – it all seemed like way too much.
I think there is a huge issue around a disease like Crohn’s / Colitis that goes hand in hand with mental health and it is rarely spoken of. I sought various ways to communicate with people that may be going through the same thing, but I found it very difficult. I felt alone and although it sounds dramatic now, I remember thinking I would never feel comfortable or happy again. I thought my only options were to be unhappy physically or mentally in order to fight this disease.
Now, I can say that I have come a long way and have managed to find a balance between my mental health and my care with Colitis. I am still currently on 5 – ASA, as well as my Sertraline for my depression. There are still days that I wake up and feel exhausted or question if I will fully accept the changes in my life due to this disease. I know a lot of people that say their illness taught them so much, and there is no doubt in my mind that it has made me a stronger person. However, I knew a life before this illness and learning to accept all the changes have been quite challenging. I have found different coping mechanisms, such as art therapy and have started up my own mobile art therapy service known as ArtTherapyHFX in hopes of reaching out to people in similar situations. I am slowly learning to adjust and accept this road.
Most importantly, I am learning to acknowledge that I don’t have to be mentally strong every day in order to be physically strong. I am learning to accept the changes that I’m facing and take it day by day.