Continence - some thoughts (part 3 - and FINAL!)

[COwithAMN]

I have been meaning to finish what has turned out to be a three-part review of my experiences and thoughts regarding bladder and bowel issues. My last piece on this subject was written on 12 June 2012. Almost a year, then! My pretty lame response is that part of that time was taken up with hospital visits, which as you know, if things are non-urgent, can be quite slow.

My bladder and bowel consultant listened to my worries and arranged for me to have a series of tests that basically try and determine how the bowel and rectum is behaving, given that it is impacted by the nerve loss that affects us all.

The procedures were all fairly uneventful and certainly not in any way painful or uncomfortable. The first was an endoanal ultrasound - here’s a description birminghambowelclinic.co.uk... This measures the muscle structure around the back-passage. The result – everything normal.

The second procedure was a bit more specific. A probe with balloon attachment is inserted and various measurements are made of voluntary contractions after coughing, or after inflating the balloon. These measurements were about assessing the electrical sensitivity of the rectum to stimulation. This time the result was that my anal sensitivity to electrical stimulation was reduced, and there was indication of external anal sphincter dysfunction.

Hmm. All of which is presumably normal for someone who has had AMN for getting on 30 years!

I’m glad I had all that done, but I suppose I have to admit I don’t feel all that further forward. Moreover, the only suggestion proposed by the consultant when I reviewed the findings with him was that I should try taking small 50 mg does of loperamide in syrup form. Loperamide is the active ingredient in the branded product Immodium. (In the US, Diamode, Imogen, Imotil, Imperim, Kaodene A-D, Kao-Paverin Caps are the brands according to the Mayo Clinic). So I now have a bottle of loperamide which my present rate of consumption will last me the rest of my life!

I am not convinced about the loperamide route but I guess it should be useful prior to travel. Until I looked, I didn’t realise how this drug works. It’s actually another mild opioid which slows down the passage of food in the intestine.

The other thing I discovered from this particular investigation was that Peristeen – which I had some hope about – is of no use for my situation. Basically Peristeen is used for spinal injury patients. When the nervous system is damaged through spinal injury, the normal autonomous processes like the way the intestines function can stop entirely. Hence, spinal injury patients rely on manual anal irrigation, and that’s what Peristeen can do.

There’s one final strategy I want to describe which was successful for me. Last year, my wife and I were successful in getting some tickets for the Olympic Games in London. But I was fretting about the potential toilet problems beforehand – would there be enough, would they be easy to access etc? So I adopted this strategy: if I call the Olympic Day O-Day, then I tried to have a bowel movement two days before (O-2). On the day before (O-1) I ate very little – no high fibre breakfast, a bit of protein. And on Olympic Day I was home-free – no urgency for the bathroom. I stuck to just little water as well. It worked brilliantly. So I now have a self-management strategy that I should be able to use again when travelling.

So now I think I have said enough about bladder and bowels for a very long time! I do want to finish with another plug for the Bladder and Bowel Foundation in the U.K. The latest issue of their journal dropped through my letterbox today. It has lots of useful articles in it. I also spotted mention of this – a new clinical guidance from NICE (National Institute for Health and Clinical Excellence) on “Urinary incontinence in neurological disease, Management of lower urinary tract dysfunction in neurological disease (Guideline CG148). You can read the patient version at publications.nice.org.uk/ma... and the full clinical version at publications.nice.org.uk/ur... If you have to speak to a clinician on this subject, it’s worth reading these first. The patient version is especially useful, and covers many aspects including the use of botox, antimuscarinic drugs and other treatments, and questions to ask your doctor.

Sorry this has been a bit long; I think I am done with writing about bladder and bowels for quite a long time!

Best wishes,

Chris

[Dave381]

Hi Chris,

Apologies tis reply is a bit late, but I've only just seen your update. I'm 32 years old and was diagnosed with AMN a couple of years ago having had symptoms for about 4-5 years. Like many of us I have suffered from bladder and bowel problems. I'll stick to the bowel problems for this reply otherwise I could go on all day! I have problems with constipation and occasional incontinence (not a good combination!). It sounds like I had the same tests as you, with all my results being normal except for being able to voluntarily hold on which makes sense. I was told that was typical for someone with a neurological disease. I was under Dr Emmanuel at UCH and it was recommended that I try Peristeen. I've been using it for about two months now and after some getting used to it now works very well. It gives you a bit more control over when you go and avoids the constant bloated/full feeling I had before. It might be worth going back and asking to give it a go? Of course I'm no expert and maybe it isn't right for all of those with AMN but it has certainly had a positive effect for me.

Dave

[COwithAMN Administrator AMN EASIER Volunteer in reply to Dave381]

Hi Dave

Thanks for taking the trouble to reply on this perennial subject! Your reply is interesting. Actually, I saw a Registrar working for Dr Emannuel. He was good and explained things well. But the one difference with your situation was that I did not have constipation - if anything, I tend to the opposite. I think it was that that persuaded the Consultant to suggest Loperamide as a way to control loose bowels. So I suspect that they won't be keen on Peristeen for me. But your experience makes me want to try again as you suggest. It seems to me that something that gives me some better control at least when travelling has got to be a good thing.

Since you were at UCH can I assume you are a patient of Dr Lachman?

[Dave381 in reply to COwithAMN]

Actually now I think about it the other AMN men I have spoken to tend towards your issue rather than mine.

Yes I'm seeing Dr Lachman, every 6 months to a year at the moment with yearly MRIs.