Richard is the founder of #IBDhour over on Twitter, has appeared on The IBD and Ostomy Support Show with me and my co-hosts, the founder of the blog Gutless Dick and I’ve been lucky enough to meet him at this years Purple Wings Charity exhibition.
It started with griping abdominal pains. Nothing major, perhaps a bit of bloating. Eventually as they didn’t stop, and the pain killers I had seemed to make no difference, I saw a GP. Irritable Bowel Syndrome he told me. Well, that made sense I supposed, my father had that, and he advised me to get some Buscopan from the chemist which helped when I had issues. That was in 2004.
In early 2005 I started getting some blood in the bowel when I went to the toilet. I ignored it for a while, then thought it might be piles so got some cream which did nothing. So I went back to the docs, saw a different GP who referred me for a colonoscopy. So I booked a few days off work, took the prep (and was glad that I wasn’t in the office) and trotted off to have a camera up my bottom. They couldn’t get very far, and I remember seeing lots of redness on the screen. They took some biopsies, and a few weeks later I went back to the GP (I think) and was told I had Ulcerative Colitis. I was given a prescription for some Mesalazine suppositories and that was about it – so it came as a great surprise when, after a short period of things getting worse and worse, and trips to the toilet increasing in frequency and urgency I found myself being admitted to my local hospital after a weekend of PredFoam enemas.
It was around this time that I realised Ulcerative Colitis was quite serious. The team tried various drugs to bring my colon under control – IV steroids, Ciclosporin (which is used to stop transplanted organs being rejected) and lots of pain relief. Every motion was a thick browny red- liquid, and the smell it made in the cardboard containers (it had to be measured) will stay with me forever. On my worst day I went to the toilet 13 times in the day time. As well as multiple blood tests, my swollen belly was measured daily.
After about 3 weeks, the surgeon decided that the treatment wasn’t working, and told me I’d need surgery to remove my colon and that I would have a stoma. The stoma nurse came around early the next morning and spoke to me briefly, but in the haze of medication I don’t remember much of what was said. She marked me up and I was wheeled down to theatre.
When I woke up I was in the specialist surgical recovery unit, one level below intensive care. I had an oxygen mask, a catheter, two wound drains, an epidural and at least one IV line for fluids and other drugs – I also had a big, clear plastic bag stuck over my new stoma. The odd thing was, through the pain and discomfort of the various tubes – I FELT BETTER. This is what happens when 4 foot of dangerously close to popping gut is removed from you. I had about 20 staples down my front, and spent a few days in that unit with pretty much 1-2-1 nursing – the best care I have had in any hospital at any time (and I’ve been in a few since).
My road after that was a bit bumpy – I had ilius so my bowel wasn’t doing anything from the trauma of the surgery and not helped by the opoid pain killers. I was started on fluids too soon and then vomited lots (and heard the consultant giving his team a dressing down just outside the curtain afterwards). Because I had been so ill I was given TPN – when you are fed via a drip because I had lost so much weight (about 5 stone) and then developed an infection so had to go back to theatre – I had a small bowel kink and became very ill very quickly. Then it was back to the surgical recovery unit.
A few days later, I was back on the ward and a military doctor, in uniform, came and drew the curtain around my bed. ‘Mr Harris, we did a swab in the operating theatre and have detected MRSA. We are moving you to a side room. Here is a leaflet.’ There may have been more to it than that, but what with the pain killers and all I don’t really remember. What I remember, this being 2005 and me not being very knowledgeable on the subject is that I thought I was going to die horribly as my flesh was eaten. A quick chat with a nurse reassured me this would not be the case, and I was given IV antibiotics, nasal cream and a potent body wash.
Now in isolation, I had to learn to walk again and rebuild my strength walking around the bed rather than up and down the corridor, and I was eventually able to eat again which meant my stoma started working properly and so I started to learn to manage it. I would eventually be discharged after 7 weeks in hospital. I had friends who didn’t know what was happening and thought they had somehow offended me. I got home, slept lots and continued to recover. Yes, I had leaks occasionally and it took a while to get used to – but that stoma saved my life, and I will always be thankful for it. It turned out to be number 1 of 3 – but that is a whole other story…
Thank you Richard I think you have dealt with everything incredibly well and kept your humour!