My IBD Story Part 2 – #IBDAwarenessWeek

This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?

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