25-year-old regional newspaper journalist Rachel Flint recalls that impact that a diagnosis of Crohn’s disease had on her adolescence, and the surgical procedure that was to later transform her life…
I was diagnosed with Crohn’s disease when I was 13, but had various symptoms for about eight months before that. I didn’t tell anyone about it out of embarrassment. I had chronic diarrhoea, blood loss, anaemia, fatigue, nausea and severe weight loss. Everyone thought it was an eating disorder. Looking back now, I think ‘Why on Earth did I not just say something?’
Things changed when we went on a family caravan holiday. At a service station I saw a sign about bowel cancer, listing all the different symptoms. When I saw that they all seemed to match what I had, I freaked out and realised that I had to tell someone because I could be dying.
Over the next few years I’d have major flare-ups, where I’d feel bad all the time for a couple of months, with crippling abdominal pains. Sometimes the pain got so bad that I’d pass out in a public toilet or find myself throwing up. The busier I kept myself the better things became, but I’d sometimes have to drag myself out of bed in the mornings. The fatigue and sleeplessness is what gets to you more than anything, what with the pain keeping you awake all through the night.
I ended up with good GCSE results because I was determined it wasn’t going to stop me, but it does stop you from being as adventurous as you otherwise might be. You can go places and do things, but your life is ruled constant thoughts about where and when you can go to the loo and what will happen if you have an accident.
For 13 years I took every medication they could give me. Most would work for a couple of months, before something went wrong and I’d have a bad reaction. They’d then put me on a different drug and I’d be okay again.
People always said, ‘Once you have the operation, you’ll be amazed at how much better you’ll feel.’ I’d always associated ostomy bags with old people, and didn’t want one at the side of my stomach that everybody would be able to see. In the end, I was rushed into hospital and told that having a subtotal ileostomy was my only option.
Out in the open
They took out all of my large bowel but left the rectal stump, which they brought to the surface of my stomach so that it could discharge through my skin in case there were any problems. They then brought the end of my small intestine out through my skin to form a stoma, which I keep an ostomy bag over.
It’s not perfect, but now I wish I’d had the operation 10 years ago. Compared to the problems I had before, I’ve just got to manage the pain of the surgery scars and the rest of my bowel. Besides, a lot of the disease’s damage is already done. I’ve got osteoporosis from years of taking steroids, as well as eyesight and skin problems, much of which is partly due to the drugs.
I wish I’d known how many other people like me were out there when I was first diagnosed. Blogs, Twitter, YouTube – none of that was around when I was a teenager. People are now openly talking about the things that so worried me when I was a kid that it almost killed me. Those who live with this disease every day are incredibly brave, and I don’t want to see anyone else suffer in silence or almost die from embarrassment because of it.
Around four weeks after the operation, after I’d been living in pyjamas for what felt like months, I just thought ‘You can live your life now, you haven’t got this thing holding you back.’ So I decided to do all these things I’d always wanted to, and to try and live my life amazingly from now on.
The list – 101 Adventures of the Stoma Bag Lady – is made up of fun adventures and unusual things, from trying to find all of Banksy’s works in Bristol and visiting China to bouncing down a road on a Space Hopper. I’m three months into my ‘read a book a week’ challenge, which is harder than I thought it would be!
My blog is now just short of 10,000 views, which is unbelievable. I never thought anyone would read it, but I’ve received amazing comments, some of which have moved me deeply and left me in tears. I started off wanting to tell people my story, hoping to help at least one person not feel alone. Now I’m part of an amazing community that has accepted me for who I am, warts and all.
About the condition
Ulcerative Colitis and Crohn’s are the main conditions known as Inflammatory Bowel Disease (IBD), and are usually diagnosed between the ages of 16 and 29; 300,000 people are estimated to have IBD in the UK.
IBD causes inflammation and ulceration in the colon and rectum (colitis) and other areas of the gastrointestinal tract (Crohn’s). The latter can cause a narrowing of the intestine, resulting in obstruction, or fistulising disease, where holes created in the bowel wall allow faecal contents to leak out.
Drug treatments can be used to suppress IBD symptoms, but there is as yet no ultimate cure. Some 30% of patients will not respond, or be intolerant to such treatments, while 50% to 70% of patients with Crohn’s Disease undergo surgery within five years of diagnosis.
Crohn’s and Colitis UK (working title for NACC – the National Association for Colitis and Crohn’s Disease) provides a support network and information resources for people and families affected by Colitis and Crohn’s Disease. Members and non-members alike can contact the charity’s information line with queries about all aspects of their condition by calling 0845 130 2233 or visiting www.crohnsandcolitis.org.uk
The charity is currently running the Me and IBD campaign aimed highlighting how, of the 18,000 people diagnosed with IBD this year, 10,000 will be young people aged 16-29. For more details, visit www.meandibd.org