I suffered from UC from 1981 onwards. I had two severe attacks in 1982 and 1995, which resulted in my hospitalisation. However, high doses of steroids worked well for me, and I was out of hospital after 10 days.
I had a colonoscopy in 1997 which showed that my whole colon was affected by the UC and had shrunk to such an extent that the doctor performing the procedure was well into my ileum and took several biopsies from there before he realised the problem. I found the whole procedure extremely painful and distressing. I could even see the light of the scope shining through my abdomen! I was advised to have the pouch operation, and my appointment quickly came through to see the pouch surgeon.
I was given a date for my operation (May 1997). However, in the previous few weeks I had received literature from the Red Lion Group which contained stories from people whose operations had not been very successful. This, along with the fact that I was told the Merseyside rep, Blanche Farley, was wanting her pouch reversed to an ileostomy put me off. I told the surgeon I no longer wanted the op.I continued with my visits to Dr Walker, the gastroenterologist at Fazakerley Hospital in Liverpool. My health was not brilliant, but I think you get to a stage where you have felt awful for so long that you think it is normal.
However, in my job as a registered sick children’s nurse, I was working full time shifts. This meant I was finishing lates at 11 pm and starting again at 7 the next morning. By the time I got home and had to be up again at 5.30 am, I was exhausted. As you will all know, I would not be sleeping those few hours, but would be up 4 to 5 times to pass small amounts of blood-stained motions.
On my days off, I had to force myself to clean the house and all the other tasks involved with looking after a husband who works long hours and has on-call duties. And three teenage sons who eat for England!
During one of my clinic visits, I spoke to Dr Walker about the op again. He again wrote to the surgeon, Mr MacKie, and I was given an appointment to see him very quickly, in March 1998.
However, before I saw him, the stoma nurse Maureen Stoddart came to see me, and I expressed to her my fears about the pouch being as bad as the UC. She put me in touch with Jenny Dobson, who had the pouch procedure two years previously, and she completely changed my outlook. The pouch had improved her quality of life 100%.
I had the first stage of my pouch on 7 May 1998. The first 3 days were very painful. I have a very low blood pressure all the time, the nurse on duty on my first night post operatively thought it was the result of my epidural, and so switched it off! You can imagine the agony I was in, as I had been in theatre from 10 am until 7 pm that night. The nurse who had come with me to observe the op said her back was very sore with having had to stand so long.
The rest of my recovery was uneventful. I left hospital on 21 May with my ileostomy. I had a few problems with leakage, and was very happy when it was reversed on 30 July. I had no problems post operatively: no pain, and my bowels started working perfectly straight way, and I have had no problems since.
I still use the toilet frequently, but there is no urgency. After my op, I was asked by my stoma nurse to speak to others about this surgery, which I gladly did. However, the surgeon did not seem happy about this, as he said I might give a wrong impression about its success, and I was not asked again. I returned to full time work in November 1998.
Morag Gaherty wrote in 1999:
Collette’s story illustrates perfectly the fact that everyone is different in whether a pouch works for them, and this is the point that the surgeon was making. It is certainly true that everyone who shares their experience with a potential patient must stress that what has happened to them may be completely different from what happens to other people, in both good and bad ways.
However, it does seem a shame that this surgeon’s potential patients are maybe being given an unnecessarily bleak picture of pouch surgery by being prevented from speaking to successful pouch owners as well. Had Collette not shared her fears with her stoma nurse, she too would still be living with a quite unacceptable quality of life, for fear of the alternative.
Very occasionally, I receive comments that Roar! presents too negative a view of life with a pouch, and I know that a large proportion of our members have a far more positive experience of pouch surgery – indeed, some find it enables them to get on with their lives without ever having to think about the pouch.
We do have a policy of presenting life with a pouch “warts and all”, because the Red Lion Group is a resource for those weighing up the pros and cons of pouch surgery. However, we are limited in what we can publish by the material we receive from our members – and, if only those who have problems write to us, then it is difficult not to give the impression that all pouch owners do have problems.
Just because companies only have a Customer Complaints department, and not a Satisfied Customers department does not mean they don’t have lots of satisfied customers – it’s just that they don’t write in to say so!
What I am saying is this: if your pouch has improved your quality of life, please take the time to write to us and TELL US