Recovery – Part 2

After my second emergency operation I was back into the surgical recovery unit briefly, then back to the ward. I don’t remember huge amounts about it, until one afternoon, I was visited by an infection control nurse.

I’ve already detailed the whole story in this post but I shall summarise a bit for you.

I had MRSA. It was unclear if a visitor had brought it in or if I had picked  it up in the hospital, but I had it. At first I thought this meant I would die, and that ignorance is a problem, but I was given a course of antibiotics (Vancomycin) a special body wash, and nasal gel. I was put into a side room and barrier nursed – visitors also had to wear aprons and gloves, and be even more though with their hand gel use.

I still had to do physiotherapy – learning to walk again and it was quite isolating being on my own and not chatting to other patients in the bay – but it did mean I got better sleep. The rest of the hospital stay was fairly uneventful. I had my staples removed, and was eventually allowed home, about 3 stone lighter and trying to get used to life with an ileostomy bag.

There followed a few weeks of dressing changes, a few scary moments when I blacked out due to anaemia, and slowly building up my strength – progressively longer walks, being knackered just from having a shower, getting rid of the MRSA and getting back in touch with friends.

One story always makes me chuckle now – a friend from uni, who I spoke to on a fairly regular basis – thought they had somehow offended me as they hadn’t heard from me, to eventually after about 6 weeks get a voice mail from my mum explaining I was in hospital. This was pre-Facebook!

So having spent 7 weeks in hospital, now it was time to start rebuilding my life – finding a job, getting benefits sorted (I was self-employed at the time so no sick pay) getting off the painkillers and steroids – and this all went quite well. Some leaks and the odd big explosion, but all was good. I started working, in December 2005 as a youth worker in Peterborough and was able to return to fencing. Without a colon, things seemed to be much better. However, I was not finished yet…

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, support CCUK & the ia by donating at my Virgin Money Giving page

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

Writing my Stoma Story

So I’ve been thinking about my fundraising plan. Not that there was much a plan, I just decided to give it ago. And so far I have raised £40, so thank you to the people who have already donated. The surgeons haven’t even sliced me open yet!

Anyway, I have created a category for these fundraising blog posts – Stoma Story – so if that is what you are interested in, then click on that to find them. My other blog posts are quite interesting too though.

I’m planning to try and write as much background as I can before the surgery in January, baby permitting. I think I need a post about:

Symptoms & diagnosis

First surgery

Life with a stoma

Pouch surgery & complications

Pouch advancement

Drugs, drugs and more drugs

The beginning of the end

Abscesses & fistula

Life with a failing pouch


And I think then we’ll be good to go with the surgery in January, and you’ll be able to see how things have developed. I’m also going to do a post along the way about how the two charities I’m raising money for have helped me, and how if you are living with IBD in the UK, they could help you too.

Thanks for reading, and if you are able to donate, you can do so at

Fundraising launch!

In May 2004 I was diagnosed with Ulcerative Colitis. I didn’t really know then what it was, and in August of that year I was admitted to hospital when a severe attack took hold. After several weeks and lots of drugs, my colon was removed, leaving me with a stoma, and using an ileostomy bag to collect my poo.

The next year I had an internal pouch formed, and had several months of further problems, and eventually further surgery. Things were good for a while, but in recent years I have had problems with abscesses, fistulas and infection, and some other related unpleasant side effects. Tonight I walked around our close with my son trick or treating, and when I got back I was in pain and bleeding.

So the surgeons have been consulted, and the pouch is going to go – in January. Well, that will be the first step.

I’m going to be blogging about this surgery and recovery, and filling in what has happened to reach this point. Inspired in part by the #getyourbellyout campaign, I’m going to be fundraising as I do this awareness raising for two charities that have given me support over the years – The Ileostomy & Internal Pouch Support Group (the ia) and Crohn’s & Colitis UK.

If you’d like to make a donation, you can visit my fundraising page at

If you have any questions about what is going on, then please leave me a comment or get in touch via Twitter.