I'm a bit dubious about putting this on here, but everyone needs to go for a wee, right? A few months ago I had a catheter fitted…

Why did I need one?
I wouldn't say my problem is control - as lots of people with ataxia seem to find - I am able to hold it, just not always for 6 hours at a time (my PAs/carers call in every 6 hours or so). If I could go for a wee whenever I wanted then I probably wouldn't have an issue, but I use a hoist to transfer so the only time I can go is during the three times per day that my PAs come.

Now this was becoming a really big issue for many reasons - the pain and discomfort of "holding it" all the time; which lead to continual urine infections over the one year (and I mean continual - during the 12 months before having it I probably had 15 of them). Increasingly though I reached the point where I couldn't hold it anymore and I'd have to live with the indignity of wetting myself.

Options
I couldn't go on living with the situation as it was. One answer would have been to apply for a bigger Direct Payment so I could employ more PAs to help me go more often (I know many people in similar situations who have applied for 24-hour care). As someone who loves her independence I really want to continue with doing with my days exactly as I please and sitting in waiting for PAs to hoist me on and off the toilet would put a stop to that. Another option was to use really really big pads but the idea of relieving myself in a pad and then sitting in it for hours didn't do much for me. The other option was to have a catheter connected to a leg bag, and I had a foley catheter fitted shortly after seeing a urologist.

Sometimes the hardest thing about living with ataxia for me is that I feel I chose how to live and deal with it. It's a huge responsibility! As the years go on you just have to hope that the choices you make are for the best. In choosing the catheter I hoped I wasn't just choosing a greater level of disability. It seemed like the option most likely to help me to stay living as independently as I can and that's the most important thing to me, so I went with it with a dull undercurrent of panic about whether I was doing the right thing or not.

Just do it
When I first had it I found the first few weeks quite difficult as it was very uncomfortable and I had an infection, a few blockages and had to be recatheterised all within the first few weeks. I think this may have just been my body adjusting because things settled down and most tellingly of all I have since only had a handful of infections. After things had settled down I also felt so much more relaxed knowing that I can drink what I like without it being a problem and without having to risk sitting in wet clothes for hours on end, and so well now that I didn't have constant urine infections. I also slept lots better.

Having a supapubic catheter
I had a really good run with this foley cather. Howeber about 6 months after having it I started to have problems. I had a bad fall and yanked the catheter tube. A few days later I went on holiday to Norfolk and I was in a lot of pain and by the time I was in agony. In the next few weeks I called 2 ambulances and went to A&E myself. I couldn't live with the amount of pain I was in and they just kept sending me away with antibiotics for UTIs! Catheters are long very very thin tubes which are pushed down the urethra into the bladder and then the bit of the tube that sits in the bladder is inflated with water creating a little balloon which stops it oming out. When I fell I yanked the tube it pulled the balloon and it got stuck, causing the pain. I eventually spasmed the balloon down my urethra and out. Over the next week they put three new foley catheters in but the balloons kept coming out and in the end I was in so much pain and so fed up with it all that I refused to have another.

I then spent a few extremely uncomfortable few months using pads. Finally I had a very super supapubic cather fitted - these are  similar but they don't go through the urethra - in stead the tube goes through a little incision about two inches under my belly button and directly into my bladder. As a supapubic catheter doesn't go in via the urethra, muscle spasm which I'm prone to isn't an issue. It is recommended that the catheter bag is worn on the leg using straps however if I was to wear it this way I would be unable to reach the bag to empty it. So I put my catheter bag in a shoulder bag which I wear around my neck.