Continence - some thoughts (part 2)

[COwithAMN]

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

[StevenSims]

Hi Chris,

Last year my Urologist checked my U and E's and the levels were not very good, he arranged for me to have a Urodynamics test and this showed very high pressures in my bladder ( off the chart! ) they told me if I didn't self catheretise myself at least 4 times a day the pressure will kill my kidneys! It wasn't very pleasant at first but I had no choice! I've been using them now 6 times daily since April last year and I can honestly say I wouldn't want to be without them! I saw my Urologist the end of May and my U and E's are now perfect! also especially before a long journey and bedtime I know my bladder is empty! I have however had a UTI which is not very pleasant with Addison's! but 1 in a year is not bad!

I think it would be a good idea for all Amners who don't see a Urologist regularly to have their U and E's checked?

I have not looked at the above links yet but I will with interest!

All the best

Steve

[mariagno]

The subject of self catheterisation is very interesting. Basically from what I have been told over the years it breaks down into two paths. First, the inability to void the bladder. As Steve pointed out, pressures can not only be very uncomfortable but also can hurt the kidneys. Catheterisation obviously makes sense. The other side is inability to stop the flow when the bladder becomes only slightly full. Obviously, the latter is very inconvenient and causes stress with the only solutions being absorbent under garments, external collection devices, or bladder medicines to control spasms. I have been looking into a device that has apparently been around for years but no one has ever told me about it. It is called Interstim by Medtronics. It attaches to the Sacral nerves that control the muscles for the bladder and bowel. I go in for evaluation in July and will share any results.