Why are we fundraising for Crohn’s & Colitis UK? It’s a charity close to my heart. They have helped me a lot….
So, I tried to do this as a vlog to camera but it actually made me feel quite emotional. I was not expecting that!
Having had Crohn’s for over 25 years I thought I was on top of those feelings but evidently not. I have Crohn’s but Crohn’s is not me.
I struggled late in secondary school, with ‘dodgy guts’ and a tendency to faint in assembly, a trip to the doctor revealed severe anaemia and an off the cuff – it’s probably irritable bowel. She’s doing her A levels. It’s stress related. Eat more fibre. Get more rest……..
I tried! But by the time I was in first year at Uni at I couldn’t stay in a lecture for needing to rush to the toilet. I’d probably had diarrhoea 20 times before 10am. So off to the Uni doc I went. Urgent referral to consultant who wanted to admit me. I couldn’t. I had exams!
Bloods. XRays, Invasive tests & biopsies followed (if you know you know). And I was diagnosed with Crohn’s disease at the tender age of 20. I’d never even heard of it…….. Inflammatory Bowel Disease. IBD. An incurable disease. An embarrassing disease. A life long illness. (*see below for what IBD is)
I was put on a high dose of steroids which basically got me through the rest of my Physio degree.
Fast forward to final year. A stressful time. Finals. Dissertation. Job interviews. I graduated and got my first job at the Royal in Belfast and 3 weeks after starting I had a major flare up of Crohn’s and ended up in hospital for a month. Struggling to get the disease under control I tried everything over the next year. Special Liquid diets to rest my bowel (where I drank a set number of special meal replacement cartons a day. And nothing else.) More high doses of steroid. Disease modifying drugs. But nothing could get the pain and diarrhoea under control.
Last resort – major abdominal surgery to remove the diseased part of the bowel. A large part of my colon and small bowel was removed. I had a stricture so I was lucky the surgery happened, or it could have been an emergency.
So now I ‘live with Crohn’s’ I have had many flare ups since but as the treatments have developed over the years the management is different. Milder Steroids & Immunosuppressants treat flare ups. But what is it like in remission?
I have short bowel syndrome from the surgery resulting in vitamin B12 & folic acid deficiency. I still have chronic diarrhoea and have recently been diagnosed with Severe Bile Acid Mal Absorption. I have to take medication every day and every time I eat. I have shares (I wish) in Imodium!
Daily I have abdominal pain, nausea, diarrhoea and fatigue. I have inflammatory cysts on my sacroiliac joints that can give me pain, not daily but often. But you know what? I wouldn’t change my journey. It has shaped me. It has made me stronger. There are bad days, but so many good days. There are laughs. Toilet humour and tears.
As I’ve said I have Crohn’s but Crohn’s is not me.
What is Inflammatory Bowel Disease (IBD)?
Inflammatory bowel disease (IBD) is a chronic condition that affects the digestive tract. It’s actually an umbrella term for two main conditions: Crohn’s disease and ulcerative colitis.
Crohn’s disease can affect any part of the digestive tract, from the mouth to the anus, and it causes inflammation and ulcers in the lining of the affected areas. Ulcerative colitis, on the other hand, primarily affects the colon and rectum, causing inflammation and ulcers there.
Both conditions can cause symptoms like abdominal pain, diarrhea, fatigue, weight loss, and sometimes even fever. The exact cause of IBD is still unknown, but it’s believed to involve a combination of genetic, environmental, and immune system factors.
Treatment for IBD usually involves a combination of medications to reduce inflammation and manage symptoms. In some cases, surgery may be necessary to remove damaged portions of the digestive tract.
It’s important to note that IBD is different from irritable bowel syndrome (IBS), which is a functional disorder of the digestive system. IBS does not cause inflammation or damage to the digestive tract like IBD does.
in the UK, it is estimated that around 300,000 people have been diagnosed with inflammatory bowel disease (IBD). This includes both Crohn’s disease and ulcerative colitis, which are the two main types of IBD. The prevalence of IBD in the UK is one of the highest in the world, with approximately 1 in every 210 people being affected. It is more common in developed countries like the UK, and the number of cases has been increasing over the years.
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