Tuesday 13 September – Ileostomy

After my operation, the surgeon explained that he had performed an ileostomy (not a colostomy). The reason for this was that it was easier and quicker for him to expose the small intestine (as opposed to the large). This was because I was a ‘big chap’ (medical term for ‘fat bastard’) so my gut is covered by loads of fat. Harsh but fair. The benefit of this was reduced recovery time and being able to start chemotherapy quicker.

I spent a week in hospital recuperating. The surgeon initially estimated ‘3-4 nights’ while the nurse who did the pre-op checks said ‘8-10 days’ while the insurance company authorised 5 nights accommodation (full board).

The main problem was the stoma bag kept coming detached for various reasons; the area was still raw, tender and moist which hindered the adhesive effect. Also, the stoma was not located on the large black circle the stoma nurse had drawn on my tummy but lower down close to my belly button. This meant the bag had to attach to a fold and crease in the skin rather than a flat area.

It didn’t seem to matter who changed the bag. Whenever I stood up or sat down, exerting pressure on that area, I was perpetually nervously checking the bag was intact and there was no tell tale leaks. Occasionally, the bag lasted 24 hours but mostly I found myself calling for assistance to change the damned thing. Initially, that need for help from a nurse, in itself is quite embarrassing although as they kept reassuring me ‘Please stop apologising – its our job’.

When I was discharged,this frustrating problem continued and this period was probably my lowest point so far. I felt relatively strong and healthy but I could barely walk to the paper shop as I simply could not rely on the stoma bag.

Thankfully, after two weeks at home, with some home visits from the excellent stoma nurse and experimenting with different styles of bags and accessories, we managed to nail the problem and eventually the bag was reliable and could last one or even two days before it needed changing. Better still, I chose when to change it instead of running to the bathroom clutching my tummy to avoid soiling the carpet like a newly purchased puppy.

Friday October 7 was a big milestone for me. I had to attend a consultation with a doctor at the Royal Marsden hospital in Fulham. I took a taxi there and afterwards decided to catch the bus home.

It may seem like a trivial thing but it just felt great to be stood at a bus stop next to normal people. None of them knew I had a stoma. No one gave me a second glance as I went upstairs. I felt like a normal person again.