Bladder incontinent

I have progressive ms which now after 14 days years has put me in a wheelchair to get about. I am bladder incontinent and was wondering if any of you females out there have had a suprapubic in your stomach

Hi Australia4,
I did have, but mine kept by passing and I decided to have it taken out, bypassed 9 times in 3 days, if it hadn’t have been for this I would have kept it, I have Botox injected every 4mths into the bladder and self catheter, which for me is better, my consultant has told me though that in time I will have to go back to a suprapubic. Hope you’re doing ok,
Jean x

Welcome to the forum. I’m not female but have similar continence problems.
I have had PPSM for the same time and am now , same as you, in a wheelchair.
I was assessed for incontinence and the doctors put me on Mirobegron / Betmiga. It seems to give me back control so that I can catheter myself without having a permenant one fitted. If you can catheter yourself why would you need to have a suprapubic one fitted?

Hi Fuzzyduck,
I can self catheter but I have to be hoisted onto my bed to do that which is the problem. If I had the pipe in with a tap at the end (not sure on the correct name) I could be away from home, find a wheelchair friendly toilet and empty my bladder that way. Which would mean I could live a sort of normal life.
My only issue now is I have to wait until September for an appointment with the consultant (unless I can get on a cancellation list).
I thought I would ask questions with people who are actually living with the situation

Hi Greenhouse, I didn’t realise bypassing was a thing.
Could you feel the pipe in your stomach, did it hurt. I was wondering what it was like when you bent forward.
Also I wear leggings, would they be a problem or does one have to wear loose clothing with the suprapubic?

Hello everybody,
I need to clear up catheter aplication in my mind.
There are 4 types of catheter usage. No doubt somebody will come up with other methods, however, we’re all open to new experierences.
There are 4 main types of catheters:
Suprapubic catheter
Indwelling catheter.
Condom catheter.
Intermittent self-catheter

I’ve experierenced indwelling and intermittent catherterization but not the other two.
My question is if you have to have a permenantly fitted catheter why have a suprapubic insertion which is likely to cause greater possible infection rather than indwelling.?

Hi Australia4,

No I couldn’t feel the pipe in my stomach and bending wasn’t a problem for me either. As far as the bypassing goes, for me it was the catheter that’s changed on a weekly basis, the one attached to the suprapubic that was the problem, that kept getting pushed off, my urologist said the catheter company that made them were having problems, so where you are that may not be a problem, depending on the supplier. If it hadn’t have been for this, I would have kept it in, but I didn’t want to be outside and this happened, my urologist has told me that down the line I will need it doing again. I also wear leggings and this wasn’t a problem either, I just tucked it away, you can also have leg bags for going out, I didn’t want that, but I did wear the night bag, this for me and my hubby was a game changer, no up and down during the night, anyway good luck to you, I’ve read you got to wait until September, lets hope for you there’s a cancellation.

Jean x

Hi Jean, we seem to live in a postcode lottery country, I don’t know what company my area would use.
I do have a telephone appointment with an urology nurse coming up, she is just checking how I’m getting on with self catheterisation (twice a day) as I kept getting UTIs. I now take a slow release antibiotic which seems to keep them at bay. I will chat with her about the suprapubic and see if she can bring the appointment forward with the consultant.
Thankyou for the chat.

Hi FuzzyDuck,
I didn’t fancy the one that you leave in. As I imagine when I do a slide transfer into my car seat that gets turned out of the car and I can slide transfer on and off it into the wheelchair (not very good at doing them). I’m waiting for a wheelchair accessible car so that I don’t have to do that. I think I would disturb it and it get pulled out. I realise it’s a major procedure suprapubic and an area that has to be kept clean.
If only I could stand and get to a toilet things would be a lot easier.
I am paying for physio to help me stand again.
Thanks for mentioning all the different things that can be done to help the bladder.

Hi Australia4,

I self catheter and have Botox injected into my bladder every 5mths, I have to self catheter 8 times in a 24hr period, which is better than before I did any of this, I went to the loo around 18/19 times a day, horrible. I know the suprapubic will come again and as long as the catheter company have sorted things, then I will be happy with that. Lets hope your nurse can get your appointment moved sooner, just out of interest, what part of the country are you in ?
Jean x

Hi Jean,
I’m in Benfleet , Essex.
I’m looked after by Southend Hospital.
Whereabouts are you.
I wear incontinence pants.
I have had Botox in the bladder a few times which worked quite well at the time.

Hi Anne,

I’m in Huddersfield West Yorkshire and I’m under the Huddersfield Royal, MS nurse is Audrey, speak with her twice a year and in between if I need to. I only wear a small pad, as the Botox really helps me, I still had this when I had the suprapubic in and that worked really well for me, just a shame about the bypassing. Good luck Anne and have the best day you can.
Jean x