Ileostomy And Multiple Sclerosis

Belinda

Dec 27, 2007 4:15 pm

Anyone out there with the strange combinatio of ileostomy and Multiple Sclerosis. Am I unique? Belinda, England

Butterfly

Jul 13, 2009 4:08 pm

Hello Belinda...I notice you posted on here ages ago and had no replies.

I'm in England too...

After lots of health problems I was told I was probably miss diagnosed with F.M. and C.F.S. and possibly have M.S.

After saying that... my health has improved dramatically these last few months after another diagnosis of Acidosis which meant the acid in my blood and tissues was making my immune system work against instead of for me. A long standing problem.

I have had a stoma since 2005 and got married four months later.

I don't know how much your M.S. effects your daily life and having a stoma. You have a lot to cope with.

I wish you well and if you want a chat I'm here!

Regards Butterfly.

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Posted by: w30bob

Hi gang,

I was thinking what a great resource this site has been for me since I found it. It would have been really helpful, but maybe a bit scary, to have found it before my ostomy, but that's water under the bridge. But I got thinking about it, and now I'm questioning why doctors and hospitals don't provide this site's contact info to any patient even considering an ostomy today. And how can we change that so potential ostomates can learn about the road ahead for them by getting on here and asking questions before the docs go chop-chop. How exactly do you get all hospitals to provide their patients specific information, like this website?

I just happened to find this site something like 4 years after my ostomy when I Googled "ostomy forum" or something like that. But I never found it during previous searches.....so I found this site pretty much by pure luck. We need to find a way to make this site available to new or soon-to-be ostomates......as that's when we really need to commiserate with fellow ostomates. Anybody have any thoughts on how we do this?

Thanks,

Bob

Belinda

Jul 13, 2009 4:23 pm

Hi Butterfly, How very nice to hear from you. Sounds as if you've had plenty of problems too. I started with MS when I was 15, but didn't get it diagnosed until I was 40, during which time I was written off as a hypochondriac -nobody could have so many different symptoms etc. Went through relapsing/remitting stage and am now at secondary progressive. Should by rights be in a wheelchair by now, but I'm not, though can't walk further than round the house and garden. Got UC when I was 55. It got worse, then much worse, and ended up with an Ileostomy and Winnie the Poo was born. Had to have Barbie Butt done 3 months later. Oh what fun!!! Love my garden though and all things to do with wildlife and photography etc. Live with my brother in a bungalow in Scarborough. Right -that's more than enough about me. How about you? Thanks so much for posting. Belinda.

Ostomy Accessories – When And How To Use Them

Hollister

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Butterfly

Jul 16, 2009 10:50 am

Hi again Belinda....having computer problems. am trying to send you longer message.

I haven't forgotten!

Regards Butterfly

Past Member

Feb 23, 2022 3:01 pm

Hi Belinda,

Our MS diagnosis stories sound very much alike. I've had MS since my teens, diagnosed at 40, when I transitioned to secondary progressive. I also have RA, OMR and GCA, the auto immune alphabet.

I have a Colostomy. All that we each have is a lot to deal with!

Ileostomy and Multiple Sclerosis - Anyone Else?

How to Adjust to Life with an Ostomy with Bruce | Hollister