Hi I’m looking for a bit of help please! I have MS and also renal failure (I am awaiting a transplant). My transplant surgeon recommended having a urostomy carried out prior to transplant as I have trouble self catheterising (I bleed and get frequent infections) but I was referred to a different urologist (my usual one said the op couldn’t be done by anyone in my health authority due to prior surgeries I’ve had) who said he didn’t do urostomies on people with MS as they can’t change their own bags! He suggested I had a supra pubic catheter fitted or continue to self catheterise. I pointed out that I managed to change my own bags when I had an ileostomy and I’m finding catheterising much more difficult but he just said no again.
My question is has anyone had experience of these forms of “drainage” and if so do you manage well ? (My left hand has altered feeling and lack of dexterity, but I can do most things if I can see my hand whilst doing things.). Thanks
I had a suprapubic catheter fitted in April & it’s generally pretty easy to manage. You can either have it attached to a drainage bag strapped to your leg, which will need to be drained when it’s full. Or you can have something called a flip-flo valve, which is basically like a tap, and you drain your bladder every few hours. With either option, at night you use a larger drainage bag, which can attach to either a leg bag or flip-flo valve.
You’d need to take off the night bag every morning, and leg bags need changing every 5-7 days. So If the urologist thought that you wouldn’t be able to change your bag with a urostomy, I don’t see why he thought a suprapubic catheter would be any easier. Could you ask for a second opinion? One advantage of an SPC over a urostomy is that it’s not permanent, and it could be permanently removed. But from what I can see, a urostomy is permanent & can’t be reversed.
I have’nt been on the site for a while,but i had to reply to your post.Ihave had urostomy for the past 24yrs,it as it good points and bad but am well used to it now,and nobody would know i have one.It was nice to get rid of all the infections i kept getting.If you want me to explain in more detail just ask what you would like to know.
Thanks Dan, I hadn’t thought about the night bag situation (don’t know why as I’ve had lots of catheters over the years!). Pardon my language but he was a " bit of an ar@e" and I actually think it’s all to do with money at the end of the day:(. I’m going to see my GP to see if she can offer any more suggestions as unfortunately my local urologist says he agrees with the other one and has discharged me!