Jean writes about how the Red Lion Group helped her find out more about the pouch operation.
In the month of June 1998 I had non-stop diarrhoea and bleeding from the rectum. After days of no appointment available at my doctor’s, I asked my daughter to drive me to the local hospital, where the duty doctor admitted me saying I had ulcerative colitis.
“What happens now?” I asked. He told me they would give me a course of different kinds of medication to see if they could improve my situation and monitor my bowel movements.
What a humiliating business that was, having to inform the nurse each time I had a bowel movement, which was – I might add – duly inspected, discussed at length and details then entered on my medical notes.
The weeks went by, my weight dropped to 7 stone, I had three blood transfusions, I was losing my hair, the pain was unbelievable. And there was no improvement in my ulcerative colitis.
I then had a visit to my “bed space” by five men in white coats informing me that they had tried all possible ways of treating the condition with medication, but to no avail. My only option, they told me, to ultimately save my life and render me free of pain, was surgery. This involved fitting a “bag”, until a reversal might be possible in a few months’ time when my health was much improved. I signed the relevant forms and the ileostomy was performed in August 1998.
Out of hospital, months later, I was much better, and on my second visit to my surgeon, I discussed with him the possibility of me having a pouch operation.
His advice was very wise: “You realise you will never be the same. There could be leakage to deal with and other minor problems. Go away, make enquiries, read about it, do your homework and then come back to see me.”
Help! I could not find anybody that had had the first op, let alone the second. I badgered my friends, read everything I could lay my hands on relating to it, made lots of phone calls, and was a general pest to one and all.
My stoma nurse sent me a magazine called Roar! I rang the Chairman’s number and spoke to him and his wife Morag, two extremely nice people (Ed: I promise I did not put this compliment in myself!), who were able to help with some of my questions. I have since joined the Red Lion Group as a member. My nurse also told me she had spoken to a Mr David Irving-James, also from the Red Lion Group, who would be willing to speak to me in connection with my operation.
I rang David, mentioned my nurse, and asked him if he knew of anyone who had had the pouch operation, as I was doing my homework prior to seeing my specialist. Well, David could not have been nicer. He sensed my unease, and by the time the conversation was almost at an end, I was made to feel like a long lost friend. He offered to visit me at my house, which he duly did 3 days later. He brought along with him a lady called Gill Hawkes, who had her pouch op in September last year.
Between them, they answered all my questions honestly, allayed my fears and provided some very relevant and useful information. David also advised me to get the best person for the operation if possible. I told him I was going to tell my consultant that I had done my homework and wanted to go to St Marks to have Professor Nicholls perform my operation. Both my visitors laughed because they too were under St Marks.
Before this article is published, I will have been to St Marks to see Professor Nicholls. I am not “out of the woods” yet. I may be rejected for the operation, but I do not wish to end on a negative note. If at the end of the day my stoma has to stay, then so be it. My stoma gave me back my life, and wonderful people like David and Gill are on the end of the telephone willing you to enjoy every aspect of it.
In 1999 David Irving-James wrote:
I am sure a number of you can relate to Jean’s story and I hope that this article brings home to readers the importance of having capable and willing members who are available within the regions to help those who are considering pouch surgery.
It is a big leap into the unknown, especially for someone whose stoma works very well: exchanging a known acceptable quality of life for an unknown quantity is not an easy decision to take, as many of us know.
The advice, support and views from an existing pouch owner are so valuable to a person facing a decision that will affect the rest of their life. Of course, it is important to remember that everyone’s experience is different, and no potential patient should be given the impression that what has happened to one pouch owner will happen to them. Nonetheless, the more people’s experience they hear, the better able they will be to make an informed decision.
I am pleased to say that Jean has now heard that her pouch operation will be going ahead soon, hopefully before the end of the year.