www.incontinentsupport.org

I see this forum has been very quiet recently - I hope that's a good sign and that everyone is managing well.

I have MS and have been incontinent and a wheelchair user for nearly 30 years. More recently I have noticed that the bladder doesn't properly empty and, sometimes, gets as hard as a football but still fails to empty. I have been adopting the technique of pushing firmly against the bladder and continuing so as to make sure that the whole of the urine is empty. I was alerted to the problem when I got a urinary tract infection and have since had another.

I am awaiting an appointment to see the urologist and am wondering if I can persuade her to do a sphincterotomy (cutting the external sphincter and bladder neck) to allow a free flow of urine. I would be interested to hear from anyone who has had this done, though, as I am interested in just what so of flow I might expect - i.e steady drip or squirts or what.

Thanks for any information

Well, after a long wait I got an appointment to be tested. After emptying my bladder, (or what i thought was emptied) I still had some 500mls left. now I have to wait to see the urological surgeon to see what she thinks and what can be done.

More later...

Hi wheels,
From my experience, the only way to ensure that you will completely avoid retention is by using a re-adjustable sling. I underwent (2010) a this sling surgery because I wanted to solve my SUI definitively but also to avoid urine retention and bladder infection, and because with it I can visit my doctor whenever I need it and adjust it without re-operating again... If the sling cannot be adjusted, you will be living with it until you get re-operated, with all the associated problems that this will have. Hope you're getting well.
BM

Thanks for the reply. I have an appointment with the urologist quite soon so that's something I could mention. however, having been incontinent for 30 years and needing drainage in place all the time I am still hoping to just have the sphincters dealt with as it ought to ensure good drainage.

I am a wheelchair user so I imagine my different posture all day will affect drainage anyway.

Finally, an update now I have seen a urologist and a specialist nurse!

I got tested a while ago and it showed I was retaining 500mls or so even after bladder emptying. The suggested way around this by the urologist is to use intermittent self-catheterisation. I have ended up with these catheters which not only work well but are very discreet. I have found I only need to empty the bladder every 5 hours and I stay dry all day. More or less bliss and not wearing of bags, sheaths or nappies either. However, I am not convinced the benefits will last so I am just keeping my fingers crossed.

If things don't work out, the urologist suggested botox injections into the sphincters might improve flow and obviate the need for the catheters but he didn't sound too hopeful. I am going for 3 months for the moment so I'll be back to update this as time goes on.

wheels5894

Feel your self-lucky only self cathing.
I to have retention and use to self cath but now I use a Foley catheter full time.

I have a Neuropathy called CIDP that is quite serious and causing all kinds of problems. It attacked my bladder and bowel. The bowel I been have able to keep control of most of the time but bladder not so lucky.

CIDP is similar to MS in that it attacks the nerves out side the spinal column and MS attacks the nerves in the spinal column.
I can still walk but for long outings I do use a wheelchair both manual and sometimes a power chair. When in the house I use forearm crutches to get around.

I have been using a Foley for three years now. There are good and bad that goes along with using them but sometimes necessary.
At first I had a lot of infections but as I learned more about caring for them I been infection free for over two years now.

I have not had Botox but I have enquired about it and I have limited knowledge about it so I won’t make a comment.

I hope everything goes well for you.

2lyle

Sorry to hear of your problem, 2lyle. it sounds tough. If you have infection problems there is the possibility of the supra-pubic catheter - it has to be inserted through the abdomen so is a little surgical procedure but pretty quickly the body builds a channel for the catheter and they are easy to change for yourself - easier than the normal foley one's anyway. Might be worth looking into as they are, presumably, more comfortable that the other ones.

My self cathing is going well - I am managing 5 - 6 hours between cathing which is a much as I dare leave it. It overflows if it gets too full. I probably drink too much! Anyway we had a warm day (yes, Scotland has warm days!) so I have been in shorts all day thanks to not have a bag strapped to my leg!

I too am retaining about 500ml. I had a renal ultrasound done and I had a lot in there. I have a urodynamic test coming in two weeks to see how much I'm holding. I had one done last year and she took out 600ml. My Urologist is talking a super pelvic catheter. I want to try a Foley first. I can't self cath because of bleeding and pain. My hand don't work so well to handle it anyway.

Your urologist is talking about a supra pubic catheter - one that is inserted through the abdomen wall. Although it seems a worse choice that the urethral catheter there are definite advantages to choosing it.

• A supra pubic catheter doesn't get infected anything like as often as a urethral one - I used one for some years and never got an infection.
• Despite a small operation to insert the first catheter, catheter changes are easy and painless and simple to do oneself.
• It leaves one's 'equipment' free for other activities (sex).

Really, go for the supra pubic - you won't regret it. Also ask about a catheter valve. It's a tap to put on the end of the catheter so that you can just empty the bladder when it is filled, so you don't need a drainage bag attached all the time.

Thanks a lot for the info. It is just scary hoping that I would make a right choice. I know it can be reversed. I had a kidney infection last year so I am going to need something. When I go I only get about 100-200 ml at a time.