I have never spoken to people about my journey with Colitis. Burying the horrid details is how I coped. I was dealt a nasty hand and I played the game with what I had.
For me to raise awareness about this disease I need to unearth some horrible events that have happened in my life.
Now it’s not going to be pretty and some of you may feel that I am a) unearthing some horrible details that should remain private; b) that the details are a little too gross for causal reading.
Let’s just get some things straight, for people to understand how devastating this disease is you need to know the gory details.
For other people who suffer with IBD, they need to be aware that there are people out there who are going through some rough times and it’s perfectly okay to feel like your whole world is unravelling at your feet. So yes, these posts will be a little heartfelt and a touch graphic, but if you would prefer not to read, then that is your own choice.
It took me a while to realise something was wrong. First it started with mild cramps and occasional nausea when I ate.
I thought it was down to stress; I had been working on a new project at university and was pulling 12hour days, then going out drinking afterwards.
Then I got this bizarre feeling where I urgently needed the bathroom but then nothing would happen.
Even when I noticed blood in the toilet, I still ignored it.
It wasn’t until I went to the bathroom one day to find the only thing in the toilet was blood that I thought I should get myself checked out.
Low and behold, the only way to check out any problems with your backside is indeed, to check the backside.
April 2008 was the first of many, many rectal examinations. I am now immune to any exams in the below region, though I do believe that I should get a lollipop for my efforts.
After being forwarded to the gastro team, we spoke about what it could be, his suspicions were IBD but we would have to make sure whether it was Crohns or Colitis and the only way to check is a sigmoidoscopy (camera up le bum)
I was coping with everything pretty well, the urgency was getting a little worse but nothing major and I hadn’t lost too much weight.
The bleeding however was getting worse and I was feeling very exhausted.
One afternoon after a particularly troublesome day I found I was passing huge clots of blood, like 50pence pieces and bleeding very heavily. Confused as to what was happening, I walked to the sofa and curled up into a ball. Having no one to rely on at university I was feeling very scared at this point.
I called my mum and she told me to go to a&e, tears streaming down my face I said I didn’t want to go without her. Being a relatively healthy child/teenager I’d only gone to the hospital a handful of times and even then it was with the support of my mum by my side.
My housemate took me and I was so grateful, she sat with me the whole time and even came with me when I had my examination.
First housemate to see a little bit more of me than she intended and on a completely sober basis as well.
I never really said thank you to her properly. It was a small gesture but to me a great one. I have no idea how I would be able to cope if I was by myself.
The Dr had his suspicions that it was Colitis and sent me away with a cocktail of medications. Steroids, pills to help cramps, tablets to help the acid imbalance, Mesalazine to help reduce inflammation. I was on, if memory serves me correctly, 24-28 tablets a day in my early stages.
This all happened before I was properly diagnosed; I will share with you the lovely details of my first sigmoidoscopy in another post.
I still hadn’t told many people what was going on, especially as I didn’t think it was a major deal. Something that I would have and perhaps go away with time.
I didn’t realise that the only way to cure colitis is to take the large intestine out. I was still quite naïve in my thinking, as you are at that age, believing that you are invincible.
I used to take my health for granted, something you think you will always have.
April 2008 was the beginning of a long journey, nearly 4 years on and I am still trying to get onto a path that will lead me back to a pain and med-free state of health.