Hi, I’m Jim from the UK. I live in a small village near London. When I’m not gripping the porcelain throne I try my best to hold down a challenging career in international management consultancy.
I was diagnosed with UC 3 years ago at the age of 33. One day I filled the khazi (sorry – very British word) with a slick of blood and went straight to hospital. A couple of days later a smiling GI announced I had UC, told me to take some drugs and I should be fine. 3 years of chaos later and I’m on the precipice – it looks like its surgery for me.
Some more about me:
I lead a pretty stressful work life (not ideal when you have a stubborn case of UC), which involves a lot of challenging projects, travel, long hours and long meetings with scary CEOs. That said I really enjoy my job and have somehow managed to keep going through some dark days.
What else? Well, I have a great wife and two crazy kids, and much of my spare time revolves around them. I’m a white collar boxer – a great tension release – recommended to all fellow hot heads. I love the countryside and my garden. I keep chickens, grow vegetables, write when I find the muse, and recently set up a small food business on the side – although UC forced me to give it up.
I’m a bit of a stress head, and think too much and talk too much. I love life and for the sake of my family, as well as my sanity, determined to stop letting UC run the show.
I’m currently suffering urgent bloody movements, about every 3 hours or so. My legs ache. I have a fat face thanks to too much prednisolone. I’m unnaturally tired and grumpy.
So Long Colon Story:
Until recently I thought my UC tale of woe began 3 years ago when a GI told me I had a disease I had never heard of. However I soon realised that it must have begun much earlier. I hadn’t had a formed poo for at least a decade, which I just put down to too much curry and beer. I also remembered that I passed blood twice while a student, both times after drinking a bit too much. At the time a doctor told me to stop worrying and eat some greens.
Years later the blood wouldn’t stop – that’s when I realised something was deeply wrong. I flared 3 years ago and have been battling UC ever since. The only drug that works for me is prednisolone, which I have been taking on and off from the moment the flare went apes*it. No other drugs worked, and I have been denied funding for Infliximab (Remicade) by the good old NHS.
I was hospitalized last summer, and have had 3 serious ‘mega flares’ within my baseline of constant flaring. I have tried the SCD diet. No joy. I paid for costly fecal transplants taken from the bowel of some sort of Greek god of an athlete. No joy there, except my poo smelt expensive. I tried a course of home brewed fecal transplants provided by an amused friend. Again no joy, except the realization as to how surreal life had become spending my time blending turds.
I tried vitamin e enemas, extra virgin olive oil up the bum and down the hatch, lots of VSL#3 and kefir (which do have a slight impact).
Bottom line (excuse the pun), I’ve had enough. This isn’t a hobby I asked for and I do not want to spend decades obsessed with what is coming out of my backside. There are other things to do.
I’m close to going for elective surgery – I’ve done my research and know that it won’t be easy and will change my life for good. But, heh, my life changed for good 3 years ago.
I rationalize my decision like this:
– I don’t want to spend up to 20 times on the toilet a day losing blood, crippled by pain, and driven to tears
– I don’t want to spend my life popping pills, which have a systemic impact, and slowly degrade your health
– I don’t want bowel cancer
– I want to be there for my family
– I want to be able to commit to my future without worrying about being hospitalized
– I want to get on with life even if that means adapting to a new reality
– I’ve tried as many ‘alternatives’ and drugs than I’m prepared to try. Period, as the Americans say.
So there it is. I’m probably heading to the operating theatre in the next few months. This is my way to beat this disease (not for everyone I know) but the right solution for me.
I hate having UC. But it has taught me some things along the way. I eat healthier, which is never a bad thing and I’m more determined than ever to live life. I can thank UC for that.
I also want to thank Adam for this invaluable resource. Everyone’s experience of UC is different and their solutions will be different – this website really underlines this. Well done Adam you’re a UC superstar.
I’d love to hear from anyone out there in a similar position to me, or who has had the surgery (j-pouch) and how they are finding it.
What I’m taking at the moment:
– 20mg prednisolone
– 1600mg mesalazine 3 times daily
– 200mg Azathioprine (Imuran)
– Lovely home brewed kefir
– Host of vitamins
– Calcium and lots of it
written by Jim
submitted in the colitis venting area