H. BLADDER

H. BLADDER

My advice

Really this is an area you need medical advice on but you also need to pay attention, and learn about it yourself so you can have a discussion with the medicos about what is best for you rather than just being told. You are the decision maker, not them. If you educate yourself you can make a better decision.

My experience

I had an autonomic bladder for over 20 years. I used penile sheaths (often called uridomes), attached with an adhesive and connected to a leg bag. I was able to roll the sheath half on, put the adhesive on then roll the sheath over the adhesive.

This system worked quite well. I had almost no urinary infections during this time. I did have accidents where something would go wrong and I would end up wet. These occurred about every 3 or 4 months, often at inconvenient times, so it wasn’t perfect.

More recently I had to change to a supra – pubic catheter. A community nurse has to change this once a month. The advantage is I no longer have any leaks, the disadvantage is I have had appalling problems with bladder infections.

This change has been a very bad backwards step for me. This is why my advice is that you need to educate yourself in addition to getting medical advice. This allows you to question advice that is proposing a solution for a problem you do not have, or proposing a solution that has side effects that are worse than the problem you currently have.

In my case my bladder did not empty completely for the whole 20 years I was using uridomes. During this time many doctors said I should get a catheter. When I asked why they said because not emptying is bad. I said why, they said it gives you infections and then you get kidney damage. I said I dont get infections. When I start getting them I’ll listen to you.

That saved me a lot of trouble for over 20 years. As soon as I got a catheter, because the not emptying issue finally became extreme, everything fell apart. I had infection after infection for three years and had to stop working so I can drink enough to keep the infections away.

I even put a water drinking app on my IPad which is designed to remind you to drink as often as you program it to. It also allows you to record how many glasses you have drunk. I set it up so it buzzes every hour during the day and tells me to drink.

It helped but not a lot. I continued to get sick although less frequently, so i was able to go back to work three days a week at a lower, less busy, grade. This certainly helped me manage being sick but also halved my income.

Eventually i got so tired of being sick all the time i started on prophylactic antibiotics – that is permanent antibiotics to keep the infections away. This appeared to work well as i stopped getting sick and remained symptom free for almost 6 months.

However, at that point i started to get some symptoms – the dysreflexia which i had come to associate with an infection. I was quite concerned as i was already on antibiotics so i thought i must be a resistant bug – whichh is bad news, as it can mean a stay in hospital.

Over those few years i had often got the dysreflexia and assumed it meant infection so just started on antibiotics. Sometimes I had wondered if it was just irritation of my bladder wall by the catheter rather than an infection. however as the antibiotics had always appeared to work i dismissed the thought.

Now faced with this new situation of a possible resistant bug i thought i really need to clear up this question before ramping up to super antibiotic designed for resistant bugs. i decided to test the irritation theory by increasing my dose of anti-bladder spasm medication (ditropan) before changing to the super anti-biotic.

it worked. i have had occasional dysreflexia but nothing compared to the past and no infections. So far it is looking really good.

Pictures:

lots of water appears to be critical if you have a supra-pubic catheter

the uridomes I used for many years

CLICK HERE for a good piece by Streetsie on his experience with supra-pubic catheters

Here’s what the experts say

spinal injury network

apparalysed

rehab team

CLICK HERE for a long list of products related to sheaths and catheters

Rule number 8 – Take control of your own health