On a bus from Be'ersheva
Important Assistance

The Bladder and the Bowel

Reading that back, it has a certain lyrical quality. Sort of like, The Owl and the Pussycat.

Or what about a pub name? Meet you at the Bladder and Bowel for a quick pint.
Sorry, but as hard as I try I canít make that work. Damn Ė didnít mean to crack a silly pun over a topic that lacks its own joviality. Nothing to smile about.

Constipation that is.

You must get your stomach to work three times a week, my neurologist told me. He Itís easy, said my urologist.
Hey, hold on. I have problem with my bladder. And granted my tummy doesnít work so often. All I need is some more fibre in my diet. I try to make light of my perpetual constipation.

But it is uncomfortable. And dangerous if your stomach doesn't work for days and days. And days.

So how do I get my tummy to work? I once had a surgeon phone me to ask my advice before operating on a patient who had multiple sclerosis. So, come on already. How do I get my tummy to work?

There is a formula which does work for me. This formula works for me but I cannot guarantee it will work for everyone.

1. Routine. Come what may Monday, Wednesday and Friday are the days my stomach has to work. I have to give myself about two hours for it to work and for me to wash afterwards. It might take you less time or more time.

2. Take something that will move "the rubbish" through your system, the night before. I use lactulose in the evening. I have also taken two tablets of Dulcolax in the evening. Timing is important. I try to take my tablets about 12 hours before my tummy needs to work. I find that I must use one of the two for a few weeks and then switch to the other.

3. Use a suppository in the morning. That will really get the system working. I use a Dulcolax suppository which usually works about half an hour after it has been inserted.

4. Don't sit on the toilet immediately. Sit on a chair, or your scooter or wheelchair until you know that your tummy will work. I think that the added pressure when you sit on a chair somehow helps to get the tummy moving.

Some people, unfortunately, become incontinent and have little can't control over the movement of their bowels. I remain continent so my advice is for those who have some control.

So now my tummy does work. It is exhausting work, but nevertheless of vital importance.

Important Assistance

There is something that I hurriedly skipped over. Use of a commode.

It is very exhausting having to go to the toilet. Part of the difficulty with my bladder and bowel, was that it was exhausting having to go to the toilet. Raising the height of the toilet by fitting a commode over it, made a tremendous difference. I chose a commode that was light, could fit over the toilet, if necessary could fit a bucket instead fitting over the toilet, and was portable. Why did I choose that sort?

In another section I discuss going to hospital for a cortisone treatment. I got the marvellous idea of bringing my own commode after reading an Oprah magazine. The magazine focused on comfort and lying in bed in hospital the magazine itself was of great comfort. Moreover, I wondered what would give me comfort in hospital. A light bulb moment. My comfy commode from home. Wouldn't it be wonderful if I could get my tummy to work while sitting on a comfortable seat? So my mother brought me my commode and it made a tremendous difference. I wrote to tell Oprah magazine and my letter was chosen as the letter of the month. I won the prize. A Mont Blanc pen. I use that pen to sign my books and even though my writing is terribly un-even I sign my name with aplomb.

With my Mont. [By the way, that is said with a nonchalant tilt of my head and a self-deprecating smile].

What fun!

On a bus from Be'ersheva

I remember sitting next to an elderly woman on a bus in Israel. She and the bus driver were having a heated argument. No, I can't stop the bus - he was insistent.
We were travelling from Be'ersheva to Jerusalem. A trip of a couple of hours through arid terrain.
Please, she cried
Why didn't you go before, he yelled back.
Others joined in cajoling the driver to stop.
I sat holding the woman's hand. She gripped me tight - I could feel her anguish.
He did eventually stop by some dry trees and shrubs and she ran out with alacrity.
I think most of the passengers were too busy debating the delay to notice her drop her pants by a bush.
Her relief was palpable as she climbed back in.
A small incident. But I often remember her when, with teeth clenched, I hurry down the corridor to the toilet.
Out of all the symptoms I think incontinence is amongst the most distressing. But it is controllable.
When I first went to my urologist I was distraught. He carefully measured my bladder response and prescribed the drug that gave me back my dignity.
Incontinence can be controlled but it is another limitation. Where is your loo? I ask friends before I go to visit. Up a flight of stairs? No go.
Sometimes I go to a place where the public loo is superlative. Room to manoeuvre my scooter (free of stored clutter), grab rails, basin properly positioned. And clean.
Now isn't that beautiful, I sigh.
so what is the worst that can happen with your bladder?
Undoubtedly incontinence.
At home alone without someone to help me get changed. And cleaned. I hated being left alone at home for that reason only.
And what about at work?
Now that is something else. I had just gone to the loo, my bladder was empty. So I thought. But then I needed to go again but more urgently now. Damn. I stood up ready to rush, but it was too late. And Annie, one of the women who cleaned our Centre (that is the Centre for Russian Studies, University of Cape Town) was in my office and just stared at my face which must have been a picture of anguish. And embarrassment.
"Will you help me please, Annie. Will you help me clean the mess up and please don't tell anyone", I hurriedly finished in a whisper.
It was cleaned up.
I no longer drived but I had to get home to change. I know, Maureen. So I went up a floor to the History department and in a rush explained to my good friend why I had to go home. Would she help me? Undoubtedly.
I love my friend Maureen. We were soon giggling as we hurried out like two errant school girls.
I went home, had a shower and came out to find Maureen explaining to my father who she was. Do you know how embarrassed I was, Maureen asked me on our way back to work. But my Dad as always took the stranger in the lounge in his stride. So what is worse than incontinence?
Incontinence diapers.
As time went on the incontinence tablets were not doing the job sufficiently well. So I took to wearing diapers. The pull up ones. They look so cute on toddlers, but on me?
There is nothing worse than sitting with a wet nappy. I fully empathise with babies and toddlers. If I could have, I would have joined their screaming and crying. Only difference is they get control of their bladders. And therein lies the crux of the problem.

Bladder control is fundamental. It's one of the first controls a child has. It's normal and natural. What a feeling of power. Independence. Fundamentally critical for exploration and interaction in the wondrous world unfolding for the child. And to have that taken away is denigrating and frustrating. To wear a diaper that doesn't quite absorb a full bladder is humiliating. To wake up in the morning with a wet diaper sets the tone for the day. There must be something better than this.

I spoke to my urologist. There must be a tablet that will keep me dry. Surely.

It took my urologist two hours to convince me that there was another way.

No. It is not so bad. Granted, I am finding it increasingly exhausting to get on to the toilet and off. But I bought a special commode that raised the level of the toilet so it is not so terrible. And my mother doesn't mind coming to help me out of bed and onto the toilet. Three or so times every night. And I can use the commode in my bedroom which will make life so much easier. And there always is a diaper.

Eventually he convinced me. A catheter. But that is for someone, more down the line, I reasoned. No he assured me. Grande.

Well, if I'm going to use a catheter I am going to make a fashion statement out of it.

And so I have. The bag I put my catheter bag into is lovely.

I now have a suprapubic catheter. More permanent. But so much more comfortable. I am more prone to bladder infections, but they are manageable. It's goodbye to diapers. And good riddance. I can drink much more water which gives me energy. And I can drink tea, caffeinated. And coffee. Cafť latte.