Hello and welcome to the second instalment of “Let’s Be OstoMATES” This time we are hearing from Paul.
Where to start its about 1987 and had been ill awhile but at 17 was more interested in going out but with diarrhoea and pains and sickness like you couldn’t manage for days after I’ve been drinking but just so at that age well I’ve overdone it but I had a good night. Until one day had not been toilet for days, being sick and in pain you could not imagine and in which the GP immediately sent me to hospital and found obstruction which was one of hundreds over the years.
So I had an operation to fix it and got better in 1989 I met someone, I just never thought of going into my back story of being ill as at this time was better and after 6 months we got married. Everything was going fine for a few years I had a few upset stomachs overtime they still didn’t know it what was going on I hoped nothing, then I found a doctor who knew about bowels but at that time then really did not know much about bowel disease but after a few months of tests I had Crohn’s disease. My wife stuck by me for weeks in hospital not going home till I was better. I started to become ill more times than I was feeling better which made me depressed and I didn’t want to go out, so they took away all my large bowel due to the Crohn’s disease.
Which I still had but something was not right but I had found a GP that was good to talk too he sent me for more tests as in between that time I had that and had septicaemia twice due to fistulas which I had never heard of either. So I spent more and more time in hospital at this time I had over 30 operations and after months of scans and tests yes I did have Crohn’s disease, but no large bowel obstructions. Over about 9 years I had a further five operations for septicaemia, fistulas and flares up of Crohn’s disease, to then one day a doctor came into the room with the results of my tests and bowel biopsies. Which they then had found out I had Ulcerative Colitis to a double whammy as my future problems were just starting up again. The doctor said they couldn’t figure out what causes it so they decided just eat takeaway every once twice a year.
Slowly over time I have 1.2 metres left of bowel which means I’m really finding it hard as have to empty it 30 to 40 times per day and night which means I get very little sleep due to leaks and bags coming off. So I made the hardest decision of my life, after 23 years of being married to the strongest, most loyal wife that would do and did do anything and everything from cleaning me up in the night. She herself even spending weeks in hospital, for example she even spent 9 months in Manchester when they sent me to the intestinal failure unit she lived in a room not much bigger cupboard with a microwave, kettle and a toaster. Yet she still refused to go home so we could stay together but slowly she became a carer which I did not want so I let her go. I forced her to have to leave and try and make a life for herself without being a nursemaid. We are still in contact everyday but it’s just hard as things have taken a turn for the worst last year and my kidneys have started to fail.
Which lead me to be placed in loris hospice where I was told I had days to live, these diseases are silent killers and they come with other things such as I have got arthritis spondylosis osteoporosis and kidney failure. They are trying to talk me into doing a new treatment which means I would be on a feed for 24 hours a day 7 days a week, but might get one day off but with this comes more problems. They just don’t know if the problems out weigh the benefits. Often people think because you look fine on the outside and they don’t have a clue what’s going on wrong in the inside. I find now in Alaska per month I’m sleep sleeping more longer leaving the house for less and less, I see less and less of family and friends. I seem to have cut myself off from them, which I know is probably the wrong thing to do but I just can’t. I am fed up of fighting, I just wish they would find something to help people at the start of it so they don’t get to this point. I wouldn’t wish this on my worst enemy.
I have even thought about going over to America as the healthcare is out of this league, but the cost of funding it is high. I have been told that here there isn’t much left they can do as there is so little bowel left and its in such a poor condition.
Thank you Paul, I am sorry you have had such a tough time with everything. Can I just add that he pointed out to me that there is a year between the photo above and this one.