My incontinence mess

I have a medically severe form of inflammatory bowel disease which affects my large intestine and other parts of my body.

In the middle of last year I had to renew both DLA and ESA. This was fine. I am in the support group, and continue to be and will be reviewed next year. The DLA was kept and made indefinite. For both benefits, one of the main reason for the awards was faecal incontinence. Certainly for the ESA it is probably the reason why I am in the support group.

Towards the end of last year I became very ill, and as my life was under threat, I had a temporary stoma surgically put in place. My large intestine was separated from my small intestine and an outlet for the contents of the small intestine created, called a stoma. The large intestine was left in place. I was cheerfully informed that this would 'rest' the large intestine and that it would no longer do anything.

My recovery was slow, excrutiatingly painfull, and not as expected. I nearly starved to death. I also noticed that I was still running to the toilet all the time and having accidents in my sleep, large, ugly accidents. I was, at first, told this would stop after a few days. But it hasn't stopped, several months have passed. This is aside from terrible leakage from the stoma bags (which is not relevant to this posting).

I have noticed that the wording of the ESA assesment material says something to the effect that they define a person as incontinent as long as they do not have a stoma. I have a stoma and my incontinence symptoms have considerably worsened (but not in a way which would increase my benefit awards or redefine them in, as far as I can tell).

I pass large amounts of mucous and blood, completely without control, day and night, from my back passage. It soaks through my clothes and there are no effective pads as it is mostly mucous and slime. Lots of it. It has now been acknowledge by my consultant and the surgeon that the stoma has done nothing at all to help, but they can't reverse it unless they can get the incontinence of blood/mucous under control.

Also, and secondly, I have had every medical treatment available for my illness, either they haven't worked or have had life-threatening side-effects for which I have been hospitalised. I have reached the end of the road for medical treatment, for now.

I am extremely anxious about the whole issue, and I do not know whether just to carry on as I am, as my symptoms haven't change (only worsened), or whether I should contact the DWP. I am under the care of the local continence service and monthly visits to the consultant.