So you can read my IBD story here, I want this place to be somewhere to talk honestly about the disease and how it affects people personally.
Let’s break taboos and speak openly and honestly about how you were diagnosed, how you deal with IBD on a day to day basis and how it makes you feel. If you have any great IBD jokes, throw them in there too!
I would love for this place to become an interactive site with support and information along with a laugh or two, but I can’t do that alone.
It’s amazing that when you get talking about IBD most people know someone with Ulcerative Colitis or Crohn’s – if this is you or someone you know, please share!
Email me with submissions for your IBD story – tell me about your bad ass!
I run another blog called Pretty Little Peculiar and I first wrote this post on that blog, I got such a great response that it seemed only right that it should be my first post here. Please feel free to leave comments!
I suffer from a disease called Ulcerative Colitis – people usually stare blankly when I say that. ”It’s kinda like Crohns” I say and most people sort of get it. Both come under the same bracket of Inflammatory Bowel Disease (IBD) – not the same as IBS by the way.
I was diagnosed with Ulcerative Colitis 10 years ago and since then I have been hospitalised may times, had blood transfusions, taken so many types of drugs, had numerous colonoscopies (that’s a camera up your ass to the layman) and dealt with so many issues surrounding the disease.
Ulcerative Colitis affects up to 120,000 people in the UK, that’s about 1 in 500, so not as rare as you’d imagine. It affects the rectum and the colon (large intestine). Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. In addition, UC can cause inflammation in the eyes, skin and joints.
So as you can imagine it is a pretty embarrassing disease at times, we don’t tend to like talking about bodily fluids, especially if it is ones coming out of your bum. I used to be mortified about my condition, I hated to talk about it and it made me feel ashamed and disgusted with myself. But in the past ten years I have realised that it is nothing to be ashamed of and that if myself and fellow sufferers don’t speak out then the taboo will continue.
So I make a point of speaking openly and honestly about my disease. Family and friends are aware of my condition and are now so used to me chatting about the disease, the side effects and the medications that they are happy and comfortable talking and joking about it too. Joking about it probably seems weird to anyone who hasn’t suffered from a debilitating disease but honestly, there are times where if I don’t laugh, Id cry!!
I have recently been put on high dose steroids (prednisone) and the list of side effects from this drug is horrific! Click on the link to go to the NHS website for the full list but here are a few of the corkers…
Sound good? No, I don’t think so either. I am under a great IBD team from the hospital and have a specialised IBD nurse who I can call and discuss all my problems with. I spoke to her this week about the possibility of elective bowel surgery, with Ulcerative Colitis the ONLY cure is to remove the large bowel (this is not the same for Crohns as that effects the entire digestive system.)
Its a big step and one that I won’t take lightly, but I think I am getting to the point where it is affecting my quality of life and I don’t want to take any more nasty drugs!
I have also been thinking about setting up a separate blog about Ulcerative Colitis and IBD. I follow an awesome american blog called Inflamed and Untamed – be sure to check it out. But I am disappointed by the lack of young, funny and honest blogs in the UK for people like me. The Crohns and Colitis UK site is an absolute wealth of knowledge, please do take a look. But I want to speak to other people like me who are going through this. I want to be able to share my journey and hear other people tell their stories.