How wrong can you be?

So I went on my merry way with my suppositories (mesalazine) doing OK. The diagnosis was in May 2005. In August, I was supporting The UProject a residential for young people at an outdoor education centre. Sleep was scarce, and my guts were unsettled. I was popping Buscopan for IBS for the cramps and was going to the bathroom more than I wanted to. That Friday I want to see the GP who prescribed some Prednisilone foam enemas, and said it was the Ulcerative Colitis, go back if things got worse.

That Saturday I went one trip to York with a group of young people. I remember at lunch time finding a toilet in Burger King and spending quite a long time there. I don’t remember anything about Sunday.

On Monday I was taken to GP by my mum. I didn’t say much. The GP looks at me and sent me to hospital. And I do mean just looked. No real tests or exam. I was I recall quite pale and clammy. I was admitted to Peterborough District Hospital, and that was the end of my summer. I was to be in hospital for 7 weeks.

I was told I was having a severe flare of my ulcerative colitis – at least that was what most of the doctors thought. One doctor was keen to ensure that possible gastroenteritis was explored because of the residential project the week before, but this was soon ruled out. The dosage of steroid I was on was increased, lots of blood taken to check inflammatory markers among other things. One of the things that was done regularly was to measure around by belly to see how swollen it was – and it was pretty swollen.

When the steroids didn’t work I was given cyclosporin – a drug used after transplant to stop the body rejecting the new organ.Whilst this was helping, progress was not fast enough, and so after about 3 weeks the surgeon came a calling and told me that my colon needed to be removed, and a stoma formed (a sub-total colectomy). At this point I was going to the toilet to open my bowels 10 – 13 times a day. I don’t know if you are familiar with the Bristol Stool scale but I was a 7. And a blood stained 7 at that. I was losing weight, was weak and really very very ill. I don’t really remember, because I was pretty out of it. I remember it being a Sunday that the surgeon cam along and told me this was going to happen. The stoma nurse came around an drew a cross on my abdomen where my ileostomy (small bowel) would be coming to the surface.

So I said goodbye to mum and dad as I off to theatre, asked the surgeon to  give me a shark bite finish, and some time later woke up in the surgical recovery unit (which incidentally gave me the best care of any hospital ward I have been on so far) with an oxygen mask and three tubes – a catheter, wound drain and naso-gastric tube (tube to the stomach that goes down the nose), a 12 inch/ 30 centimetre incision down my middle that was now stapled up, plus a couple of drips and an epidural for pain relief. Oh, and a big clear plastic bag over my new stoma to catch my bodily waste.

Although I was quite out of it with the pain relief and coming out of the anaesthetic there was one bizarre feeling – I felt better. And the reason for that? 150cms/ 60 inches of diseased colon had been removed from my body. I was told afterwards that when they opened me up, it was evident that soon my colon would have exploded (not the medical term) and that would likely have killed me – stool in the blood is not a good thing after all. So for me, as is the case for many IBD sufferers who need emergency surgery – my stoma saved my life.


This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, supported CCUK & the ia by donating at my Virgin Money Giving page

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