16. Crohn's: Patience

Period: June 2012 - August 2012

The primary focus of my life for the previous 12-months had the waiting for various appointments, but at least I now knew what was wrong with me. When I was doubled over in pain or vomiting I could at least tell people what was causing it now! Unfortunately, I didn't know much more than that and everything I read on the internet seemed to contradict itself constantly. I was in a state of limbo, not knowing what I could do to make the symptoms better and with no idea if and when there would be an end to this hell. My mental health was becoming more and more fragile and this was not helped by the steroids playing havoc with my temper.

I remember on one occasion the refuse collectors knocked on the door to ask if I would move my car (living in a cul-de-sac, parking is limited so even a kerb space is a prime spot!). Having got home from work at midnight I was still half asleep when my Mum woke me up.  I grabbed my keys and trudged up the hill to the car. I asked the chap if his colleague would back-up the truck slightly to give me room to manoeuvre. Not impolitely but perhaps cordially. As I went to get in the car I heard him mutter something about my parking. This was my first taste of steroid-rage - I just let RIP!!! Every profanity you can think of coming out of this tiny little woman was enough to leave the poor man rooted to the spot in shock. Once I had finished, I just got in the car, moved it and went back to bed to dwell on how little control I seemed to have over myself.

Every day was now a struggle, from dealing with diarrhoea every morning to wondering if I was going to vomit every time I ate. My weight was slowly dropping and I tried to eat as much as possible just to stop my Mum nagging at me. I had been forced to quit playing football in March and in July I had to reduce my hours at work. I was permanently exhausted and it was seriously taking its toll. I felt very lonely yet being with people just made me feel lonelier and I was too tired to enjoy myself when I did socialise.

At my next appointment in July I advised the consultant that the steroids hadn't made much difference, except perhaps to delay the symptoms getting worse. I was prescribed the anti-inflammatory drug Pentasa and went home again full of hope that it might work. It brings a nostalgic smile to face when I remember how blissfully ignorant I was back then - Pentasa is a relatively limited Crohn's treatment used to treat mild to moderate forms of the disease. Full with optimism that this would be the treatment to put this matter to bed, I set off to a music festival in mid-August, with a substantial supply of toilet roll and wondering if there would be anything on sale that I could reasonably expect to eat without unpleasant repercussions. Part of me still tried believed it was the things I ate that brought about my symptoms and that I could just get it under control with my diet. I suppose its a natural response of the brain, when eating seems to bring about unpleasant symptoms like pain and vomiting, it is only logical that food must be the cause.

Naturally, when setting up our tent for the festival, toilet access was the key priority and we pitched up overlooking a nice big block of smelly port-a-loos. On the second morning, I awoke to find a small queue forming at the toilets. As was the norm by this point, within a few seconds of regaining even the remotest degree of consciousness, I needed an urgent poop. I calmly joined the queue doing my utmost to stop the inevitable and I had made it to the front of my line, when a lorry pulled up and the driver announced these toilets were closed for cleaning and we would have to go over to the other side, where there was already a significant queue forming. Swallowing my pride, I promptly crept up to him and advised him that I had bowel disease and waiting any longer was not an option for me. Bless his heart, he shouted to his colleagues that they were to wait for me to finish and nodded me in. Although I enjoyed the festival as much as possible, it was a bit of a wake up call when I looked at the pictures and saw how sick I looked, all pale and gaunt.