Continence - some thoughts (part 1)

I have been reading a lot in recent blogs and questions that refer to problems with bladder and bowels. I therefore thought I would write about this issue as a blog, since it is something that affects all of us with AMN.

The first thing to say is that continence affects most people with a neurological disorder, whatever it is. Patients with Multiple Sclerosis or Parkinson's are people who come with continence problems just like ours. So we are not alone.

Continence - or the lack of it - is a subject that patients fairly naturally don't want to talk about a lot. It's OK if "getting caught short" is the kind of joke that might feature in stand-up comedy routines, but we know that the real thing is no joke. And managing the the problem is something we all develop routines about.

With me, I know not to be far from a toilet first thing in the morning after eating breakfast. The Saturday morning shop which Sheina and I do quite early is an example. I don't eat anything before I go out, just to be on the safe side, so I could eat a horse by the time we get back home.

What I have realised is that the issue of managing continence seems to be something that has received insufficient attention from the medical community and the medical technology specialists.

It's also an issue that we as patients need to speak up about a lot more. So I was particularly pleased when a newspaper columnist that I read each week brought the topic to a national readership. The writer I refer to is Melanie Reid, a columnist for the Times. Two years ago, in April 2010, Melanie, who was a keen horsewoman, suffered a dreadful riding accident. It left her, in her own words, going "in the space of 15 minutes [..] from someone whom I considered to be a fairly high-achieving mistress of her universe to what looks like a tetraplegic".

In the face of such a terrible event, Melanie has managed to keep writing a highly engaging weekly column. The column has become her story of how she has dealt with, and continues to cope with what had happened. In one of her columns she railed against the lack of medical progress in dealing with urinary and bowel incontinence, which, for her, has suddenly become a major issue.

Anyway, I thought I would mention Melanie as a way of getting a little into the continence discussion. Her columns have become a must-read for me each week, as her courage and lack of self-pity in the face of such an awful shift in her life circumstances is truly inspiring. I hope you find them so as well. I plan to post a few for you to read, and next time I write I will use the article she wrote about bladder and bowel issues. Meanwhile, here is a link to the very first piece she wrote immediately after the accident. Note that this downloads a Word document when you click. Let me know if you have any difficulties opening it.

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All the best

Chris

8 Replies

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  • Thanks for this article, Chris, it's very moving. I recall having those thoughts myself. Incontinence of bladder and bowel are definite problems for some of us ... I had to discontinue a medication recently ordered for me because of almost immediate, devastating, bowel incontinence. Tizanidine (sp?) was the devil for me, although many do take it successfully.

    I look forward to reading more from Melanie when you can offer it!

    JoAnn

  • Hi Chris, I also read Melanie's column and find it very uplifting when feelin down. I am on 10mg Solifenacin daily for urgency and have found it a great help with my bladder problems but have the exact oposite with my bowel which is very sluggish. My neurologist told me years ago its related to the problems I have with my muscles in my lower limbs which do not respond due to the damage to my spinal cord. I suffer with constipation even though I am on a high fibre diet (well ok pluss lots of chocolate!) and Firbergel and if I go more than twice a week I am lucky. Not sure if I have read Melanie's account of her problems so off to read it now.

    Thanks

    Hillary

  • Chris, I appreciate your choosing of this topic and your openess. I have found a way to have some control over bowel incontinence. I had a doctor years ago recommend glycerin suppositories. I have been able to train myself a structured time to go each day using these to help things get started. There is no leftover impact after the initial use. First thing in the morning and I can go the rest of the day without worry as long as I eat food that does not upset my stomach. It takes a little time to get to a routine. They can also be used anytime you feel the urge but cannot close the deal. I hope this is helpful.

  • Hi Mike

    Thank you for your contribution and for sharing your personal experience on this subject. I appreciate this, as will others, since finding practical solutions to the problem is what we look for. I will be seeing my own specialist consultant soon on this subject so I will see what he thinks about your approach.

  • Chris, if possible, please share your findings. As we have pretty much known, medical advice in the US and in England often take different paths. I am curious to hear.

  • Mike - yes I will!

  • Chris, I, just, loved reading this article! Reading this article was, extremely, helpful! FYI, I'm, just, leaving you this comment as TIME HAS BEEN AND IS MY ENEMY; HENCE, I, NOW, HAVE THE TIME TO DO THIS!

  • Hi Relay

    Thanks for this - I am glad it has been helpful.

    All the best

    Chris