My ms has destroyed my bowels and bladder…i discussed illeostomy or colostomy today…have i really got to this?..peristeen doesnt help…just wondering if anyone else had bowel ops or getting to that point…feel really down over it but cant carry on way i am
Hi there, I know just how you feel. I has two years of not daring to leave the house because of toileting issues. I am in a wheelchair but can still transfer myself into bed and onto the toilet on good days, but can’t move fast enough when I got the “urge”. Was having bad nights sleep because of accidents so I asked for help.
We went through the long proccess of district nurses coming twice a week to give me enemas,going in hospital with constipation problems etc. We had exhausted everything, and with my husband being my only carer and we’re both 72yrs I thought enough was enough and I decided to have a colostomy.
I had a lovely surgeon who explained everything to me, and he said he would try to do it keyhole but he wouldn’t know until he had the camera inside to see if it was possible.
When I came round I knew straight away that he had managed it because I couldn’t feel pain in my stomach area. I had been expecting to be in a lot of pain because it’s a big operation, but the nurses make sure that you aren’t left in pain. The op lasted 7 hours, because it takes longer to do it keyhole.
They soon have you up and about, usually you are in for 5 days. I had mine done in July and it’s the best thing I’ve ever done. I can now go out on the Access bus and go round the village and park on a nice day. I do manage the changing of my bag myself, and don’t think twice about it now. I have got my life back now, and so has my husband. Anything you want to know just ask.
What a lovely inspirational message Muriel. As a qualified nurse, its lovely to read that you’ve had such a major life changing operation and dealt with it in such a positive way. All the best to you and your husband…enjoy all your lovely days out together. Noreen xxx
Do you get the Pathways mag [MS_UK] ln to-days mag there is an article about a MS sufferer - who elected to have ileostomy and suprapubic catheter - as she was so fed up with both problems ruling her life - and as she was in a wheel-chair - it was so difficult for her to lead a ‘normal’ life. Both procedures proved to be remarkably trouble-free for her.
l have been offered the ‘procedure’ as l have little control of bowels. l had a suprapubic catheter 18yrs ago. Many times - l think l will go for it.
If it helps you get control of your life rather than being controlled by MS symptoms I would say go for it! Good luck whatever you decide. xx
There is also ‘Sacral Nerve Stimulator’ - google this. lt is for bowel/bladder control.
Im in a wheelchair and have progressive ms so things just going to get worse…tbh would just like it done but although registrar was yes the consultant may be a no…just fed up of the pain…thanks for the messages so kind x
How do i get the pathways magazine would love to read that article and show my consultant as hes useless with ms knows nothing about it and hadn even heard of peristeen and hes a bowel dr
Pathways mag is MS-UK.org - which used to be MSRC - lts bi-monthly - lots to read. freephone 0800 783 0518 -
This is where l first heard about Peristeen - 6yrs ago.
Thanks for your reply - You are an inspiration. So many of us have let our bowels/bladder rule our lives - and it also effects the family.
As l get older - l do fear not being able to care for myself - and a colostomy would give me more freedom.
I forgot to say that I also have a suprapubic catheter which I have had for 15yrs, At the time my consultant told me about the procedure, but my doctor advised against it. It’s been brilliant for me, and you aren’t searching for toilets all the time when you are out and about.
When you are in a lot of pain and the toilet problems are getting you down, you can listen to the advice from proffessionals, but there’s only you know your own body.
I am going on respite care to Southport for 2 weeks on Saturday, and this time I shall be able to go on the trips. Best of luck to you.