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Calling fellow Ostomates!

Hi everyone!

Well it’s another warm day and my legs, like so many more of you out there it seems, are refusing to work properly again!

It wasn’t long ago that I would walk along the cliff tops on the way to a giant boot fair on a Saturday afternoon, walk round and round, and round then back home along the beach to get ready for dancing the night away at the club. Now, I can’t walk to the kitchen to make a cup of tea without holding on to furniture and walls to keep myself upright and then losing half of it by shaking so much on the way back. Good Lord!

Wondering if there Is anyone, like myself, trying to cope with this MS malarkey and have an ileostomy/colostomy too, where being cut from sternum to pubic bone was the only option in an emergency op.

I only ask as I think I’m right in thinking that I would not have half the problems I do were it not for the fact that I’ve been cut so much. I’d love to know how you’re coping with everything and whether you’re getting any kind of help.

My MS Nurse had suggested that any type of exercising to build up my core muscles etc. would not really work so would be useless, so have not pushed myself to do exercises; but I’m now left struggling to hold myself up straight, walk etc., I’ve got a lovely six pack… of flabby muscle!!

Luv Loopy Linda x

I don’t doubt your MS Nurse is well intentioned, but a strong core is what keeps us upright and definitely worth doing some simple exercises in my opinion. Whatever you can manage is an awful lot better than doing nothing.

https://www.mstrust.org.uk/understanding-ms/living-ms/lifestyle/exercise-and-ms/exercises-people-ms/core-stability-exercises-a

Hello Linda

I’m an ostomate. Colostomy in my case. Last June. And my stomach / core is so lousy after surgery I bloody hate it.

What type are you? Colo or Ileo?

Mine was planned, not emergency. If you do a search on My Colostomy, I wrote a whole long piece about why I’d had it, what it was like and then a bit of an update later on. I don’t think there are loads of us on here, ostomites that is. Not that I’ve come across anyway.

My situation is different I think, I’ve had MS for more than 20 years and haven’t been able to walk much since a nasty relapse 6+ years ago. So I was already lacking in the core region. (And had an SPC operation last March which was a bad move - had it removed 6 months later!) But you’re right, my legs are extra crap in the unseasonable (!) hot weather.

When did you have your op? You’re not supposed to even try to exercise core muscles for at least 6 months after. So be guided by your MS nurse / physio / stoma nurse.

Yes, it’s truly rubbish being unfairly extra fat around the middle. And you know it’s not down solely to chocolate, biscuits and booze! Obviously there is a bit of that, but still…

I actually did start doing some very mild and gentle core exercises a few months ago, but have given up for the heatwave duration. Just like I’ve cut out a lot of walking, or I could say it’s given me up!

Good plan to ask for a roster of ostomates.

Sue

Hi there,

I have SPMS. DX 2012 so a pretty swift ms deterioration from skiing, dog walking, aerobics, cycling etc…to tricycle, cane, self propelled wheelchair, stroller, 3 wheeled scooter, 4 wheeler all terrain job & RWD motorised Scooter. Currently almost leglass!

This ms business stinks!

I think it depends when you had your abdominal surgery. If it’s within 6 months, you shouldn’t attempt core exercises. It can lead to an incisory hernia.

Which can be a major problem.

Sue