When we started this blog, one of my main fears was further surgery leading to a bag. This was because of my experience last year.

Yesterday, we received an explanation (not complete but far better than we’ve had so far) of what happened with the ileostomy bag. Apparently it wasn’t (as I understood it) the stoma which retracted but the skin around it which started to “necrotise” die in other words because bile (which has the action of caustic soda) was seeping on to the skin. I didn’t think to ask how that happened. He said that it was a known possible complication but he had never seen it himself and neither had the stoma nurses.

When the bag hadn’t been sticking and they reported the condition of my skin he’d believed that I had some sort of allergy to the adhesives so he recommended different ones and different methods of affixing the bag.

He had had it reported to him by the nursing staff on the ward that I was just not trying to manage the bag myself and indeed had fainted the first time I had seen the wound during my first lesson in how to put it on. He didn’t say this directly but the implication was there (which I felt all along as I have said on numerous occasions) that this meant I was somehow nervy. In actual fact there was a good reason why I had fainted.

The night before the first lesson a lady had arrived as an emergency admission. That morning we’d got talking and after a while she told me that she was one of the Ripper’s surviving victims. She said that she didn’t tell many people about it but somehow felt she could talk to me. She told me the story of that awful, awful night and showed me the scars from what he had done to her. Remember I am a week away from a dreadful operation and feeling vulnerable. I held it together in front of her because I felt so sorry for her (she was an absolutely remarkable woman who I became very friendly with BTW) but about ten minutes after I’d had this experience the stoma nurses arrived to take me to the bathroom to have the first lesson. As I stood up from the wheelchair I was in a terrible state, I should have told them there and then I didn’t feel up to it but I gritted my teeth and tried to get on with it, failed and fainted. I didn’t feel of course reveal this woman’s story to them. So I think they presumed I fainted at the sight of the wound and the thought of what I had to do.

The consultant said that I have always “presented as a very nervous and anxious patient” which is of course absolute b*llocks, the same b*llocks which had MrC described as “abusive” by one of the staff nurses when we disagreed with her about my drawing the curtains around my bed. Mr C stuck up for me on that but we didn’t spend too much time on it.

The consultant went on to explain that after a week had gone by where no progress had been made in my managing the bag he and the ward Sister had come to be tough with me as a method to try to spur me into doing it. That was the point I described in my blog when I spent the whole night crying and very nearly decided to kill myself as I had access to my own tablets. Next day I wrote him a rational letter setting out the case that the stoma nurses weren’t able to affix a bag that lasted more than a couple of hours & that I feared going home if they couldn’t do it.

He then (for the first time) came and examined the stoma site and discovered the necrosis of my skin. He actually said that then he “felt awful” and reminded me of how then he’d been every day, did the earliest reversal he had ever done and had given me excellent care. Our letter is also the only complaint he’s had in 25 years. I don’t feel he’s a bad bloke, I never have which is what made it all so hard. I wish we’d taken in a hidden recorder yesterday though.

When I told Kate (my daughter) about me supposedly being a nervous and very anxious patient she was outraged by that suggestion. “It’s obviously him covering his back about why he hadn’t looked at the stoma earlier.”