My Life With Crohn’s Disease: Hospitals, Hopelessness & Heaven-Sent Support

Photo Courtesy of Wedaeli Chibelushi.
This article was first published in 2018
I spread my coat over three tough plastic chairs, lay down on the makeshift sofa and started bawling. Wailing like a soap star, snot dripping everywhere. I’d just been told by an A&E doctor that this was probably it; my Crohn’s disease symptoms had become so unmanageable that I would need an ileostomy which is where the small bowel is diverted so it evacuates through an opening in the tummy. A special bag is attached to the opening (stoma) and will collect the waste products that usually pass through the colon and out of the body through the rectum. All this is to say that as I write this, I haven’t taken a poo for over a year.
Over 9,000 ileostomy procedures are performed every year in the UK, for various reasons. My reason? I have severe Crohn’s disease, a lifelong condition where parts of the digestive system become inflamed. Symptoms range from diarrhoea, stomach aches and fatigue to depression and anxiety. There is no cure.
My small bowel had granted me terrible quality of life, yet the thought of having a chunk discarded in a life-changing procedure felt like the end of my world. I cried uncontrollably until an elderly couple on the opposing plastic seats consoled me. They gradually calmed me down, then the woman slipped £10 into my pocket "for a taxi home" and hurried off before I could protest. This neatly encapsulates my life with Crohn’s: hospitals, hopelessness and heaven-sent support.
My memory of life before Crohn’s is pretty hazy. I’ve racked up 23 years on this Earth but memories of the last 10 are all-consuming. After suffering from stomach pains, diarrhoea and extreme fatigue for around six months, I was diagnosed with Crohn’s in September 2008. I’ve never felt so relieved. Doctors had put a name to my troubles and, moreover, they told me my condition would be 'manageable'.
The doctors didn’t lie – since my diagnosis, I’ve 'managed' Crohn’s well enough to excel in my GCSEs and A-levels, graduate from uni and now work a job that I adore. On the other hand, I’ve had no control over countless hospitalisations, operations, mental health issues, medication failures, A&E visits and more recently, an emergency ileostomy surgery.
I was euphoric for three or four days after the operation. Morphine had me FaceTiming loved ones, telling them how great I felt and showing off my cool new stoma and fresh scars. But that mood could only last for so long: the morphine tapered off, I was discharged and forced to acknowledge that a stub of intestine was chilling outside of my body. Emotional rollercoaster is a gross understatement. Beginner bag issues (like leaks) fuelled my anxiety and changing the bag every couple of days disgusted me. I felt undesirable after a guy unwittingly told a gross-out story about his friend sleeping with a girl who had a stoma.
I can’t pinpoint the exact moment that I started to love my bag. Was it after (one of many) pep talks from a lovely stoma care nurse? After registering the likes of Gutless and Glamorous and Hannah Witton? Or was it when I faced the facts: this beige, floppy pouch and pinkish piece of bowel saved my life.
Not only had the ileostomy saved my life, it had changed it too. While at uni, I spent several mornings leaning against a bus stop, internally screaming 'Why can’t I be you?' at energetic students managing the 30-minute walk to campus. Now, I can walk for hours. When needed, I can even run for the bus. I used to look at the many old faces in hospital wards and feel disheartened... I’d squandered my youth, gone straight from childhood to debilitating illness.
Today, I’m the most 'youthful' and social I’ve ever been. I have a healthy-looking Google Calendar, and at the same time Crohn’s has taught me to relish my own company. The illness has made me extremely motivated. Had I not been diagnosed, I doubt I’d be so attuned to the love of my friends and family.
In some ways, Crohn’s has made me a better person. However, the trauma it’s caused is deep and lasting. I struggle to be in or near hospitals, places like my old uni halls remind me of physical pain and I’m constantly anxious about being fired because of my disability – as I have been, twice. Therefore, despite being encouraged to, I could never accept Crohn's as a natural part of me. It’s more like an alien that’s invaded and polluted my world. I do, however, love my ileostomy bag. It’s given, rather than taken. When I glance down at the right side of my belly, the future seems like a real possibility.
Don’t get me wrong, the ileostomy isn’t a miracle cure. The surgeon’s lopped off a huge problem area, but there’s a small chance of Crohn’s attacking the rest of my digestive system. Also, the operation wasn’t successful the first time and was repeated five months later. I still take a lot of medicine and struggle with nutrient deficiencies. It’s not a guarantee, but my bag has given me positivity, a virtue I couldn’t afford otherwise. I wish I could contact the elderly couple from A&E and tell them that in hindsight, the ileostomy didn’t warrant so many tears. I wish I could tell them that my bag and I have become quite attached, and that I couldn’t imagine life without it.

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