Humiliating, crippling, painful and confusing… These are the best words I have found to describe ulcerative colitis (UC), which is an autoimmune disease that causes inflammation in the large intestines. For years, I have had stomach issues – from severe diarrhea, to stomach pain and rectal bleeding. I chalked it up to Irritable Bowel Syndrome (IBS) or anxiety and stress. However, last year, the symptoms began to worsen and I knew it was time to seek a second opinion.
After having a colonoscopy in February 2017, I was diagnosed with the chronic illness. At the time I did not understand what that meant and honestly, I did not have time to deal with it and went about my life as usual. I was working as a journalist in New York City and sometimes I barely had time to eat lunch, let alone focus on an illness I had never heard of. My doctor at the time also did not really explain what colitis was and did not make it out to be a life altering illness. But after months of ignoring the problem, I have now realized it can no longer be brushed under the rug, as the symptoms have worsened and are taking over my life. Ulcerative colitis is a disorder where the immune systems attacks the body’s own cells.
The immune system targets harmless bacteria inside the colon and attacks its tissue, causing the intestines to become inflamed. This inner battle causes pain, bleeding, the urgent and constant need to go and fatigue. All of these symptoms have left me crippled in bed for days or hunched over on the toilet for hours. It requires constant doctor appointments, numerous blood tests and taking multiple pills everyday. And what triggers it? No one knows. Flare ups (when symptoms are heightened) can be brought on by stress, taking the wrong medication or certain foods. Because this illness is still new to the medical world, specialists do not know what causes it nor is there a cure, except for having a section of the intestines removed.
With colitis still being a mystery, I and others suffering have to do their own research in order to understand the Dos and Don’ts. However, I have also found that this is not a cookie cutter disease. Foods that my body does not like may be fine for others. There is a lot of conflicting advice and when I come across inconsistent information, I cut it out of my diet just to be safe. Altogether, I have eliminated dairy, fatty meats, acidic fruits, fibrous vegetables, soy, whole nuts and seeds and sugars.
Not only do I suffer physically, such as screaming in pain on the toilet and sleeping the day away because of blood loss, colitis has also had an affect on me mentally and emotionally. There is a constant fear of having an accident in public or eating something that will trigger a flare up. What has also made this more difficult, is that from the age of 16 to 27 I battled bulimia – an eating disorder where one binges and then purges. Every day was a constant battle with food and my body. I was a slave to the porcelain throne, and although I have recovered from the eating disorder, I am in another battle with my body and food, but again, relying on the toilet for relief. But I just remind myself that if I can beat bulimia, I can make it through this.
Another symptom of ulcerative colitis is weight loss. I know what you’re thinking, but for me, losing weight is a nightmare. Not only do I wonder if people assume I am purging again, but I am very much into fitness, so this part of the illness has really hindered my progress. I spend almost the entire day eating, but because my large intestines becomes spastic when I eat, all of the calories I consume are quickly eliminated. And the fatigue I experience is a whole other monster. There are days when taking a shower seems like too much of a task, so heading to the gym is sometimes impossible. But it has taught me that missing a few days here and there is nothing to beat myself up about. I have also learned that I need to truly listen to my body. When it says rest, I do it. Fitness has been a big part of this life with UC, as it is my way of showing my body who’s boss!
You may look at me and think “she doesn’t look sick”, but colitis is an invisible illness and that is why I wanted to share my story with you. I want people to know that these symptoms are not just IBS or a sever stomach bug that will eventually go away. It is not a result of a bad diet and myself and others suffering are not lazy nor are we hypochondriacs. We have a life-long illness, in which there is no cure. I have read personal blogs written by others suffering with colitis and although we may approach this battle differently (some have chosen prescription medication, while others have taken the natural route) we do have one thing in common – we are warriors. We will not let this disorder ruin us or define us, but will become stronger because of it. And it is time to bring awareness to ulcerative colitis with the hopes of finding a cure.