Suprapubic Catheter

Primary progressive MS
1

Hi there,

I am new to this and am desperately seeking any answers or advice on behalf of my mother. Please bare with me if I waffle or if I dont make complete sense…

My mum is a MS sufferer and has been for the last 16 years. She has a suprapubic catheter fitted which was to eliminate the problems associated with toilet use and make that part of her daily living hassle free. However, it is becoming a daily battle and is making my mum very upset and at times embarassed as it does not work properly anymore. She has had it fitted for quite some time and it has been amazing but now it is constantly becoming blocked and causing the urine to bypass the catheter completely and causing her to become wet where it leaks out the traditionally way… The catheter is being changed at least 3 times a week now as it is impossible to unblock it and it is very painful for her to have it changed. She is having to wear pads in her underwear incase it leaks (which it almost certainly will) and as she is wheelchair bound and cannot dress, undress or wash herself, it is very difficult and painful for my mum when a change of clothes is in order, clearly this is becomming very upsetting for her.

The nurses have been amazing and are very gentle and symperthetic towards her but no-body seems able to give us an answer as to why the catheters keep becoming blocked. She has tried every catheter available (as far as we know) and is no on a silver coated one that was supposed to be better but again within a couple of days it is blocked again. She is having a bladder wash done at least twice a day and has started drinking filtered water incase it was something in the water causing the bladder to fur up or crystalise but nothing is working.

Is there anybody out there that has been through or knows someone who has had a similiar experience? does anybody have any advice or answers that may help? she is getting very dispondent now and as she is normally a very happy, upbeat lady it saddens me to see her suffering anymore than is necessary. Any help/advice would be greatly appreciated.

Thank you very much for taking the time to read this, I hope it makes some sense!

Lisa

2

Hi Lisa

I’m sorry I don’t know much about Supra pubic catheters but I’m sure you’ll get a better response if you post this on the Everyday page, just because more people go on there. Hope you get things sorted.

Lynne xx

3

Hi Lynne,

Thank you for your reply, I shall move my message now and hopefully find some answers.

Thanks

Lisa

4

Hi Lisa I’m going through the same with my mum she’s had MS since I was 6years old and I’m now 28 she is wheelchair bound and has a suprapubic catheter aswell which keeps blocking we don’t know why it keeps blocking though it just one of those things I think. It’s a foreign in their body aint it and doesn’t like it but if you ever need to talk I’m here to talk it would be nice to talk to someone in the same boat as me. I we have carers 4 times a day too If you could pop ur email address in I would be grateful Steph x

5

Hi Lisa The only person I know on here who has a supra pubic catheter is Campion who you will find on Everday Living. She may be able to help with advice, I don’t really know. I am so sorry for your mum. These bladder problems are so horrible. Hth Teresa xx

6

Only just seen your post so hopefully you have things sorted.

I have one and they found that I had bladder stones which were causing blockages, had them removed, huge difference!

The district nurses/gp should be looking into this as it becoming blocked so frequent is not pleasant.

Message me if you need any info.