How many times did you walk into a public toilet after someone and couldn’t stand the smell? How many times did you curse or call someone names because s/he was occupying the toilet for too long? Has the thought of them having a serious chronic disease ever crossed your mind? I bet it didn’t. You have never probably noticed how embarrassed and ashamed they were whilst walking out and seeing someone entering the toilet after them, or perhaps seeing the massive queue of people that has just gathered around giving them the worst look ever.
People often say that they could never defecate in a public toilet. I get it, the uncomfortable feeling of other people ‘hearing’ you, judging you and giving you looks. I never liked to do it myself but sometimes when I’m out of the house I have no choice. I suffer from a chronic disease called Ulcerative Colitis, which together with Crohn’s Disease is part of the Inflammatory Bowel Diseases (IBD). What it means is that at one point of my life, when I was 21 to be exact, my large bowel started attacking itself, thinking there was an infection whereas there wasn’t really one. Following this it started attacking healthy tissues causing inflammation and exposing me to heavy diarrhoea with blood and mucus. One day I was fine, the next I couldn’t get out of bed. I was weak, exhausted, couldn’t eat nor drink anything as it just passed through me. Everything seemed to irritate my sensitive insides, however, I had no clue about it at that time. I simply thought it was a bug that was going to go away after a week or so, but it didn’t. What triggered it for me was stress, due to the amount of exams and written assignments I had to undertake at my year abroad university, and probably the fact that they were all in French. I didn’t go to the doctor in France even though my friends were trying to force me to. I guess I already knew that it was something serious and I didn’t want to stay alone in France for Christmas. So I went back home, to Poland and my parents took me straight to the GP who completely neglected me. Then there was the hospital visit where I was referred to an outpatient clinic. My dad got very frustrated and decided not to go there but instead made a private appointment with our old GP who suspected either IBS or IBD but wanted me to see a specialist for further tests. The only problem was the fact that it was 24th December, Christmas Eve, and we had to wait until 6th January for the specialist appointment. So with some dietary recommendations, some medications and pain killers I was able to survive Christmas and New Year’s Eve. Luckily my family was there for me. Although very caring and supportive, they drove me nuts treating me like I was an egg just about to crack. When I finally got the appointment with the specialist, his first question was how much weight did I lose, followed by when can I come to the hospital. I lost more than 5kg which doesn’t sound that much but for somebody only 5’1” (155cm) tall and usually weighing around 50kg it was quite noticeable. After having a colonoscopy done, the gastroenterology team discovered I suffered from severe Ulcerative Pancolitis which is a form of Ulcerative Colitis in which the whole colon (from the cecum to the rectum) is affected by the disease. Unfortunately (or fortunately) the extremely high dosage of corticosteroids that I was given, helped and the plans of trying biological treatment on me weren’t an option any more. I’ve had my ups and downs ever since, some more painful and severe than others but luckily I didn’t require any further hospitalisation (and I hope it stays that way). Despite that I suffer from side symptoms which affect my life on a daily basis such as recurrent flare-ups, abdominal pain, weight loss and weight gain (due to corticosteroids), extreme fatigue and most probably inflammatory arthritis (will get to know for sure in January). I may be fine in the morning, but in agony few hours later. The disease is completely unexpected. Moreover, I need to watch out what I eat and avoid certain foods that I know will make me suffer later. I need to watch out for stress so that it won’t trigger another flare up.
Living with IBD is a constant struggle. It’s an invisible disease so I may seem perfectly normal on the outside whereas my insides are at war, fighting yet another battle. The risk of developing bowel cancer is high as well. This week (1-7 December) is Crohn’s and Colitis Awareness Week, a chance to shout out and educate people about this long-term chronic conditions that affect over 300,000 in the UK and millions more worldwide. This is my shout, my war, my everyday struggle.
Please visit for more info http://www.crohnsandcolitis.org.uk/
…and remember, never judge a book by its cover.