Hi everyone I find this post quite embarrassing but here goes a couple of times when I have been out I have been caught out and have not made it to a toilet in time.I now have this problem that I get myself so worked up now that I have to check where I am going have loos if they don’t I will get worked up and feel I have to go.I just wondered if anybody else has had this problem and also if anybody has any suggestions for me.Thanks.
Had the problem too, but no solutions to it, I’m afraid. Would really appreciate it if anyone out there has any ideas.
Just reading through the other posts and I came across one on a “Sacral nerve stimulator”. This is a electric box you have implanted (I think) which can cure bladder and bowel problems. Worth a read, for the other person who posted on this.
Hi, no need to be embarrassed or feel you should go anon, as so many of us here have exactly the same problem.
I take oxybutynin to calm my bladder, but it isnt really doing the job now and i have many accidents. i`m going for an spc soon.
But as for the bowels…I havent found the right
happy medium for this one either. I go between constipation and bowel movements when I dont always want them.
But a few of us lot use something called Peristeen. It is a method of clearing your bowels, so you can be more in control. My GP wont give me it and sends district nurses in if I dont go after 5+ days and am in pain.
Google the name if you`d like to know more.
Hi Anons, no need to worry about being embarrassed - we’re always on about our bums and bladders on here! I have peristeen as I had frequent accidents and it is totally fab. I think your first step is a referral to a continence nurse so you can try some less invasive methods first as I did. When they didn’t work I was prescribed peristeen and it has totally eliminated the constant worry and I do it in the morning then that’s me set for the day with no prospect of any more accidents cause it’s all clean as a whistle with nothing to unexpectedly pop out!! Good luck and feel free to pm me if you want to know more.
I get what ya mean as I can be affected quite badly by this as it could hit up to 3 times a week. Then one week recently I got hit by it 5 times in as many days and that was the last straw for me. I asked for help and it came in the guise of a Peristeen. This is basically an anal irrigation system and boy has it made my life a lot easier, getting the problems done to about once a week now so I am a lot more confident about going out.
I am lucky enough to have a dedicated Community Neuro Team that works in the same offices as my MS nurse and she spoke to them about the problems and they came out to see me. IF you have something similar where you are it may be worth approaching them to see if they can help in any way shape or form. I certainly don’t know where I would be without their help right now.
I am little puzzled as to why you GP won’t prescibe you one as it is so much cheaper and cost effective to have one than having to call the nurse out all the time!
I know exactly how you feel because I’ve been there. I was so worried and distressed that it was literally ruining my life. I eventually worked up the nerve to speak to my Specialist MS Nurse about it and she couldn’t believe I had suffered in silence for so long.
With 1 phone call she arranged for the Peristeen nurse to come and visit me. It has changed my life. No exaggeration. I am now able to go on long journeys, meetings, workshops etc and feel totally confident that I’m not going to have any more mortifying accidents. There are no drugs or medicine involved. It’s just water.
I would strongly recommend it. It takes a little bit of getting used to but once you do it’s easy. I do it every 2 days and I’m fine with it. The difference is unbelieveable. There really is no need to go through this.
Speak to your MS nurse or feel free to send me a personal message if you want more details.