Ok so i need help… i have primary progressive MS. I started to experience bladder issue’s last August and firstly was cathaterised for retention this proved to be a nightmare as the cathaters blocked every few days or bypassed or id get an infection it became so bad theu were being changed every tw9 days and i was unable to even sit down so the decision was taken to place a supra pubic cathater in November. This made the situation much worse it failed to drain and i had constant pain and recurrent severe infections ive now had this re sited 4 times and still the supra pubic is bypassing and causing me pain and infection. My quality of life is just non existant im 33 years old. I have ask to be considered for urostomy surgery but told by my hospital rhis is only done here for bladder cancer so im trying to find as much info and support as possible to back up my case for a second opinion. The mental distress alone this is causing me is unbarabke now does anyone have any help or advice or links to blogs or evidence to help me.
Have you / are you able to, use intermittent self catheterisation?
I had a supra pubic a couple of years ago and lasted 6 months with it, I had constant infections and a wound infection that wouldn’t improve and eventually when I saw the urologist, she said I can take it out now if you want. ‘Yes please!’
And that was that, catheter out and back to ISC. Mostly without problems. I’ve just had an infection, the second one within 3 months (although I’m wondering whether the first one ever properly cleared up as I had 3 different antibiotics and I never really seemed to get quite right).
My hands at pretty crappy, but I can manage to ISC. So I suppose it depends on how much mobility and dexterity you have as to whether that’s an option for you.
I can see the doctors point about using urostomy only for bladder cancer. It is quite a radical way to sort out bladder retention.
Have you considered Mitrofanoff instead? Or has it ever been suggested? It’s where a new aperture for emptying your bladder is created, preferably using your appendix, or a piece of bowel where the appendix has already been removed or is otherwise unusable. You then empty your bladder using a catheter several times a day, similar to ISC but from the front, so theoretically easier to do. I considered it, but decided against it just now because I could envisage them having to use bowel and having discovered just how much mucus is created by the bowel, I could see problems ahead with draining mucus (using bladder washouts). If you’re interested have a look at https://www.mitrofanoffsupport.org.uk/
Best of luck whatever you are able to do. Bladder problems are a misery, and one which so many of us have had to live with.
Thank you for the reply, i am not able to self cathaterise at all which is a problem my dexterity is quite poor as im also epileptic it can be a problem i will look into that thank you im so miserable at the moment i feel just at the lowest ive ever been
I can imagine that you’d need a certain amount of dexterity for a urostomy too. Apart from anything else, changing a stoma bag (of whatever type) needs a certain level of dexterity. But I’m sure it’s easier than doing ISC. And at least you’d be doing it in front of you rather than from the urethra.
What a nightmare you are experiencing. Badly behaved bladders are a torment.
I found this site: https://urostomyassociation.org.uk/ I don’t know if you’ve already seen it. I do wish you the best of luck in persuading your urologist to do the urostomy.