Living With A Chronic Illness - Crohn's Disease

A chronic illness? A bowel disease? Me? Why me? – these were the constant questions I asked myself every day for three months straight. It’s hard to come to terms with something so life-changing, and not for the better.

I suffer from Crohn’s disease, a chronic Inflammatory Bowel Disease (IBD). I was diagnosed just over seven months ago, one month before my 23rd birthday. I was having the time of my life on my year J1 visa in New York City, when suddenly I had to cancel my internship and visa and come home straight away, as my insurance didn’t cover the treatment I needed in the States.

When I was diagnosed in May last year, every day was a struggle, especially since I was sick for the whole summer. I lost so much weight in New York between sitting in my apartment in Queens unable to move, eat or drink for two weeks straight. I was completely malnourished from constantly vomiting and going to the toilet, I was as white as a ghost and severely anaemic. I suffered from bad cramps and loose stool movements, and not the usual stomach cramps, it felt like someone was trying to tear out my insides. On top of that, I was constantly bloated, suffered from bad mouth ulcers, mood swings, hot and cold chills, weight loss, and the dreaded haemorrhoids. It was only in the last year that I started noticing a lot of blood in my stools (lovely I know). My whole body was in pain, from my joints to my muscles, and to my mental state. This led to me becoming quite depressed and anxious, making matters a whole lot worse.

I was taking several different medications at a time for over four months, but the worst of them all was the steroid called prednisone (anyone who has been on these can sympathise with me). These are truly the worst steroids in the world, I gained so much weight, I suffered from moon face, which made me look like a chipmunk (and not a cute one). I started receiving Infliximab (Remicade) infusions every 2 months, which is an auto-immune suppressant drug used to treat IBD. This was all going on while my friends were out enjoying their summer, it was the worst few months of my life! I also dealt with a bad infection (C-diff) that really affected my treatment, which set back my road to remission.

A lot of my friends didn’t really understand exactly what Crohn's was at first, same with my family and of course, I don't blame them, I barely knew what it was. To be honest, I still don’t think they really understand how it affects me both physically and mentally, I mean how can they? Cancelling plans last minute isn’t because I don’t want to see you or spend time with you, it’s because I genuinely feel like crap. My friends are off to the UK in February for a girly, booze-filled trip. As much as I would love to go, I know that my body would just crash and burn. The symptoms come and go, but mostly I do suffer with them, whether it’s pain, fatigue, constant bowel movements, or just not feeling happy and sociable in general.

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Cancelling plans last minute isn’t because I don’t want to see you or spend time with you, it’s because I genuinely feel like crap.

I don’t “have” to avoid certain foods, but I do and anyone with this disease will know what I mean by that. If I want to avoid pain and horrible symptoms then yes, I do "have" to avoid certain foods. For me, vegetables high in fibre seem to make things worse. A lot of the time it’s really mind over matter. Stress is a major factor and trigger for flare-ups, if I was to stress about what to eat and what not to eat every day, then I would probably be in a rut. Sometimes you have to treat yourself or simply include the types of foods that cause symptoms, I believe it builds up the strength of my body and digestive system. It’s funny how eating certain foods for me is a risk, but I’m willing to take them so that I can gain control over my body.

I also get a lot of people telling me how AMAZING and HEALTHY I look, and yes that’s a nice thing to hear, but it’s not necessarily the case. Some days I'll be sat at my desk at work in excruciating pain, hunched over, goosebumps and shakes going through my body and I look fine, absolutely fine. No change in colour, no redness, just the pain that hides inside my body. A lot of people don’t really understand exactly what IBD is, and I’m not one bit surprised. The publicity and acknowledgement of Ulcerative Colitis and Crohn’s disease in Ireland is shocking. No one knows how it’s caused, the right treatments to use, yet more than 40,000 people suffer from this chronic and life term illness! Something needs to be done, and that’s why last year I decided to volunteer for the ISCC (Irish Society For Colitis And Crohn’s Disease) to spread awareness.

When someone asks me what triggers the disease, I’m not exactly sure how to answer. I have been dealing with anxiety for a few years so maybe that’s a factor? When I was in New York before I got diagnosed, I was working six, sometimes seven days a week, on top of partying. I was torturing my body, so I can only imagine what that did to my overall health and wellbeing. In my opinion, genetics is definitely a major factor for me, my cousin has Crohn’s, my uncle suffers from psoriasis and my granddad had rheumatoid arthritis, all auto-immune diseases too.

The publicity and acknowledegment of Ulcerative Colitis and Crohn’s disease in Ireland is shocking. No one knows how it’s caused, the right treatments to use, yet more than 40,000 people suffer from this chronic and life term illness!

This disease has changed my life in many ways, but the one positive thing I’ll say about it all is that I have become a much stronger person because of it. I appreciate the small things in life, and even though I still have my bad days, this all could have been a whole lot worse. I try to live each day as a brand new day and remain positive. Hopefully that will get me through life a happy and (somewhat) healthy woman.

 

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Photo by Leon Biss on Unsplash


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