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Life with continence problems

Nick Beedle

Open Door - November 2008 pages 12-13

Nick Beedle Nick Beedle

I was diagnosed with remitting/relapsing MS in 1999 at the age of 29. I was virtually fine until January 2004 when I had a major relapse that affected my ability to walk and everything else below my waist.

For a bloke, this is an unpleasant subject; but when I say everything below the waist, I mean everything. There were incontinence issues and erectile dysfunction which, mixed with losing the ability to walk and loss of balance, made me pretty dismal (more to the point, not like a man!).

What does not like a man mean? Well, really, where can I start? Not like a man is basically what it says on the can. This affected my mental state and wellbeing. At the time, we had just completed potty training with our 3-year old, so it was embarrassing to discover that I had to relearn the process myself. It also removed my feelings of worth as a Dad. How could my 3-year-old manage this, and not me? That is one of the distinct disadvantages of MS; you have to relearn many previously inherent skills, most of which are possible, but something like this occasionally requires more assistance.

Due to embarrassment, my inability to stay dry kept me housebound for almost a year. Eventually I approached the doctor and many solutions were tried: a variety of pills were prescribed and I tried limiting my liquid intake (I know now that this isn't a sensible solution!)

So what happened next? Most of this time has been scrubbed from my mind in a haze of embarrassment. However, between May and July 2004 the MS nurses put me in touch with Fran, an incontinence nurse, who came and visited me at home. How did I feel about a home visit? I was thankful that someone was coming to me as opposed to me going to them. My lack of desire for leaving the house unfortunately also extended to hospital visits. However, I had been warned about what was to be discussed and this was extremely scary!

The meeting was the opposite of scary. My wife was also involved with the discussion (although my son was sent to watch television). Fran introduced the process of self-catheterisation and showed us some catheters. Thankfully they weren't completely alien items, as we had had to use them on our son who was born with Hirschprung's Syndrome - a bowel disorder - but they had to be inserted into a different hole!

Once the talk was over, the product needed to be demonstrated - my wife was excused this bit! Fran took me into the upstairs bathroom (more space) and I showed her my willy. Very carefully, gently and slowly, Fran talked me through using the selfcatheter, including how to get past the 'sticking' point of the sphincter. I've been told that many men faint at this point, but I only went extremely pale.

Fran left me with a selection of catheters. I started with a size 14 and this was uncomfortably large; I have since moved down to a 12. A 10 does the job, but it's incredibly slow. Fran made regular phone calls at the start to see how I was managing the situation. However, I took to it well, so a further visit wasn't required. At this point I was also referred to a consultant urologist. More explorations ensued, including one in the front and one in the back (make of that what you will!).

My routine: initially it was twice a day - once on waking and once before bed. This gave me a good night's sleep with occasional nocturnal wees needed. This varied with the amount of water I was able to get rid of (at one point, I did measure my output).

Two years ago I went to the Malvern Flower Show and by chance met another man with MS. Firstly he told me about FES*, but secondly he also told me about a drug called desmopressin+. This shuts the kidneys down each night and keeps you dry with confidence. The doctors had never heard of this, but it is in the book and is listed to cure night wetting for children and in small writing (also useful for MS patients). My wife thinks this is fantastic, but it is a bit of a passion-killer.

Life does change, however, although I am sometimes slow to realise this. After a discussion with the doctor about my urge incontinence still not being 'cured' I now catheterise three or more times a day. First thing in the morning, before any long car journey and before bed at night. I still work four days a week, so travel to and from work. This requires an extra siphoning before I come home.

So, where does this leave me now? I catheterise three or more times a day. For a long time, I did consider that I had regular bladder infections - it got so regular that the doctor supplied me with antibiotics to keep at home for whenever necessary. However, most samples don't show infection which led us to look at diet. It is only within the last two months that I have discovered that all citrus irritates my bladder causing me to wee more. This is what previously made me think I had an infection. Thankfully I can still eat curry and drink beer, so my life isn't completely over! Unfortunately I have had to ban chocolate, but that isn't due to singular incontinence, for me, it solves the other kind. I now eat lots of ginger nuts instead.

Although I no longer limit my liquid intake, I am careful about drinking past 9 o'clock at night. This is a requirement of the desmopressin (it can only be used one hour after the last drink), and I start the day with a cup of hot water instead of tea.

The future's bright; my wee is no longer orange. My neurologist is considering upping my diagnosis to secondary progressive, but I'm damned if I'm going to let it get me down. I'm a cussed bugger (and I'm a cussed bugger's son).

Notes

* FES - functional electrical stimulation. A device to help with foot drop. For more information, see the MS Trust's FES factsheet

+ Desmopressin should be used with caution. Only one dose should be taken per day, with no fluid for 1 hour before and 8 hours after use. People over 65 or those with diabetes, heart or kidney problems should not be prescribed desmopressin. It should not be taken in conjunction with diuretic or blood pressure medication.


Resources for people with bladder and bowel problems

MS Trust

Read, order or download the MS Trust's Bladder problems factsheet
Read, order or download the MS Trust's Bowel problems factsheet

Bladder and Bowel Foundation

The Bladder and Bowel Foundation (B&BF) is a charity providing information and support for all types of bladder and bowel related problems, for individuals, their families, carers and healthcare professionals.

Bladder and Bowel Foundation website

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