Thank you to all who commented on part 1 on this subject. To be honest, I don't have many ideas of my own, though my occasional problems in these areas mean that it is something of great interest. Some close friends must think that I am the only person they know who can get really excited by bladder and bowel issues!
So when Melanie Reid started referring to the problem in her national column in The Times, I paid attention. Her column of 10 September, 2011 was entitled - in her tongue-in-cheek, self-deprecating way - her "performance review". She was 18 months into her new existence as an almost total tetraplegic following her riding accident. When she said that she no longer dreaded bowel melt-down thanks to a clever new system called Peristeen, my attention picked up. With some research I discovered that Peristeen is a self-administered anal flushing system system that enables you to empty your bowels once a day under your own control. It's made by a US company called Coloplast.
I don't have a problem very often, but as fellow-travellers will attest, once is once too many. So the idea of being in control rings the right bells for me. Being anxious isn't good, and I am determined not to fall into the avoidance trap. I am planning to discuss this with my bladder and bowel consultant when I next see him (soon).
I have listed all the links that might be helpful at the end of this blog, but let's get back to Melanie.
Towards the end of her article she then raises the other continence issue - bladder problems. And that's where it got really interesting. She points out that the technology of the indwelling catheter was introduced in 1937 and has not been improved since then.
Of course, I suspect that many (or most?) of us with AMN - men or women - do not have the level of severity with bladder problems that necessitate the use of catheters - either indwelling or intermittent. (But correct me if I am wrong on this - and maybe we should have a poll on the subject?) Catheterisation carries the risk of introducing infection, though the indwelling catheter seems to be much more of a cause of this than the intermittent variety.
I have had the training for intermittent catheterisation but decided that I would manage without it. My reasons were that my urine retention was fairly small (typically 100 ml or less) and a suspicion on my part that the process of insertion and then removal might actually introduce more infection. So far, I seem to managing well without self-catheterisation.
But, to pick up again with Melanie. She points out that some thoughtful scientists and technologists have now combined to try and address the problem - visit 21ccp.org/ where you can register your interest. Even if you don't need help at present, it's a terrific initiative and deserves support.
And then, the really amazing thing that happened was that The Times itself decided to highlight the issue, in one of their leader articles on 10 Sept 2011. Must be a first for a national newspaper, campaigning for solutions to waterworks problems! Finally, that article provoked a letter to the Times from a number of scientists and medical technologists, all from UCL in London, supporting the need for research and describing what they were trying to do.
So Melanie seems to have single-handedly kick-started a revolution in the treatment of these troublesome issues. Good on yer, Melanie!
I'll finish this blog now, as you will probably be keen to read Melanie's column, the Times leader and the letter to the editor. I have also put in the other links referred to above, and one or two others of interest. One specific final one to mention is the Bladder and Bowel Foundation, a U.K. charity devoted to supporting people with these problems. Membership is £10 a year and I have signed up. With the exception of Coloplast, these are all U.K. - based organisations, but I hope they are also useful for non-U.K. members.
With every good wish,
Chris
Melanie's article, 10 Sept 2011: db.tt/RIRnu75Y
The Time's leader article, 10 Sept 2011: db.tt/oDfR8zja
Letter to The Times: db.tt/9sgyLS74
Coloplast, the company behind Peristeen: coloplast.com
21st Century Catheter Project: 21ccp.org/
Blog of an MS sufferer who uses Peristeen: bit.ly/Ky4Ift
Bladder and Bowel Foundation: bladderandbowelfoundation.org
