Friday, February 03, 2017

Colostomy Irrigation Speech.

When I secured this debate, I had not realised that it would be so close to World Cancer Day - on Saturday. Given the close connection between my subject and cancer, I could not have chosen a more appropriate date.
I begin by paying tribute to the colostomy nurses at the Royal Shrewsbury Hospital, particularly Tracy Lunt, my personal stoma nurse, who helped me through a difficult time in my life and who encouraged me, and introduced me to colostomy irrigation 14 years ago. I also thank colostomy nurse, Julie Powell, who telephoned me late one evening this week to help me to prepare, after hearing that I had secured the debate. Colostomy nurses are special people, drawn to an unglamorous job that involves helping and encouraging people at the most difficult time in their lives.
 I imagine the subject of this debate is not often the subject of debate in Parliament. Madam Deputy Speaker, you have been an MP for longer than I have and may remember another occasion, but I do not. As far as I know, this may be the first time that this subject has appeared on the Order Paper.
I had best begin with some explanation of why the subject is of such importance to me and to many other people—we do not know how many people because the subject is not talked about much. It is difficult to know how many people are irrigators, how many could be irrigators or how many would be if encouraged and helped by a sympathetic introduction process. At this point, I should introduce the background to my interest, which derives from bowel cancer. Colostomy irrigation has given me the freedom to live a full and active life. I will mention bowel cancer quite a lot because of its close connection with colostomy irrigation.
I am an ostomate—a person with a colostomy. I have owned my colostomy for almost 15 years, since undergoing an abdominoperineal resection to remove a cancerous tumour in 2002. I did not want a colostomy, but the alternative at the time was a far less attractive prospect. It was perhaps the most traumatic event in my life. I was uncertain about the future or, indeed, whether I even had a future at all. It certainly gave me a good understanding of how others feel in the same situation. I consider myself to have been extraordinarily lucky in that I made a full recovery.
One of the key reasons for my good luck and full recovery was that my cancerous colorectal tumour was diagnosed early in its development, before the disease had spread to my liver and elsewhere, when full recovery would be much less certain. Unsurprisingly, I have been a champion of early diagnosis ever since, and played a role in promoting bowel cancer screening programmes in Wales, when they were introduced a few years ago. The campaigning charity, Beating Bowel Cancer, is currently leading a campaign to reduce the age at which screening is offered from 60 to 50, as it is in Scotland. Instinctively, I support early screening, but I realise that it serves no real purpose unless accompanied by the availability of sufficient endoscopy capacity.​
Colorectal cancer, or bowel cancer, as it is commonly known, is one of the most common forms of cancer, with 110 new cases diagnosed every day. It is a traumatic shock for many when the tumour is first diagnosed, but the cancer is completely curable if caught early enough. It is possible to recover and do some fairly crazy things. For example, after recovery, I initiated the establishment of the Welsh parliamentary rugby team. In passing, I should say that, rather shamefully, our first game versus the Lords and Commons parliamentary team degenerated into a full-scale brawl, which received much coverage in the national media, and that is when I first met the hon. Member for Newcastle-under-Lyme (Paul Farrelly), a Labour MP. I went training with the late, great All Black Jonah Lomu, who had also suffered life-threatening illnesses, in preparation for that game. My friends, of course, think it was even crazier to seek election as a Member of Parliament.
The final introductory point I want to make concerns the title I have chosen for this debate. Until recently, I used the term “colonic irrigation”, like most people, but it is too often associated in the public mind with a lifestyle choice available in health and massage centres—a practice I have never really taken much interest in—so I now use the term “colostomy irrigation”, which has no such associations, and which accurately describes the process.
My speech has three main purposes. First, I want to explain what colostomy irrigation actually involves—what it is. Secondly, I want to explain why I decided to become an irrigator. Thirdly, I want to explain why I am seeking to raise the profile and awareness of colostomy irrigation, which is something I have been doing for 14 years. This Adjournment debate is the best platform to raise awareness that I have ever secured.
First, on the actual process, I am constantly surprised by how little is known about it. Even people suffering illnesses such as colitis or bowel cancer, who face the prospect of a permanent colostomy, seem to know little about the procedure. A colleague MP with a background in the clinical profession approached me today and said that not even all colostomy nurses know about it or encourage it. It seems not to be thought suitable for polite conversation; the human mind seems to go into “block” mode if the subject crops up.
However, the process is very simple. All it involves is hanging what is in effect a polythene bag, containing 1,000 to 1,500 ml of warm water, on some convenient hook—I usually use the bathroom curtain rail. One of the problems with smart modern hotels is that there are often no convenient hooks. Luckily, I am a farmer by background, so I am quite practical and naturally given to improvisation, and a coat hanger can be quite a handy hook. The water is then allowed to run by gravity, via a polythene tube, into that part of the lower bowel that my brilliant consultant surgeon left me with after surgery in 2002. Then, the water is allowed to just run out naturally; there really is not much more to it than that. The biggest downside is that the irrigator has to remain in the same location for about 45 minutes, but with complete freedom to read, write, telephone, prepare speeches for Adjournment debates, do sudoku, watch TV and a whole host of other things.
I want to emphasise that the process is not suitable for all ostomates. There can be insurmountable physical and, indeed, mental barriers that mean irrigation is just not possible. There are additional bits of equipment, such as commercially available water pumps, that replace simple gravity, but my experience is that they are not usually needed.
There is another point of interest here—certainly to me and, I think, to the Minister. I am told that while a very small percentage of ostomates in the UK irrigate—less than 5%—a very high percentage do so in the US. That is thought to be because all the equipment associated with wearing a colostomy bag is free in the UK but has to be paid for in the US—1,000 ml of water comes free.
Secondly, why do I irrigate myself? When I am asked, I give the same answer as when I am asked why I voted to leave in the EU referendum on 23 June—it could one day become a pub quiz question: what is the connection between the EU referendum and colostomy irrigation?—and that answer is to take back control. I wanted to take back control of my own body and not allow my colostomy to rule my life, which it could well have done. I did not want to have to wear a colostomy bag. I wanted to continue my public life without being concerned about an “active” colostomy at inconvenient times. I can irrigate when and where it is convenient for me to do so. I take the decisions, not my colostomy. I have—as, indeed, have all the other ostomates who irrigate—genuinely taken back control.
Thirdly, I turn to the main reason why I am raising the issue in this debate. Having experienced the extra freedom, self-confidence and control that colostomy irrigation gives me, I want to encourage other ostomates to think about doing the same. I must emphasise that it does not work for every ostomate, and, in any case, it is a matter of choice. It is not a question of what one should do; it depends on what one can do and what one wants to do. All I want to do is to suggest to ostomates who have never thought about irrigation to consider it. There will be a few uncertain days to begin with while the body familiarises itself with the process, but, with the guidance and encouragement of their stoma nurses, they too may find the freedom and control that colostomy irrigation brings.

The background to every colostomy is some form of clinical need, involving fear, trauma, great uncertainty, great need for relief from pain or even simply a desire to stay alive. World Cancer Day is on Saturday, and I am really grateful that I have had the chance to play a small part in making life better for at least some of those who are suffering from the implications of bowel cancer.

3 comments:

Anonymous said...

Well said Glyn.
Speaking as a J-pouch owner, my current GP doesn't know what it is! before I told her, there are no ostomy nurses at my side.
I deal with it-oddly enough since 2002 same as you, but on my own.
Pob lwc ffrind. x

Anonymous said...

Well done to all the people that have had bowel cancer and taken this or any other option

Anonymous said...

very helpful information which I will pass on to a family member