Ileostomy and Multiple Sclerosis - Anyone Else?

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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.
Posted by: Nini4

Well,  I  hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression.  He  ticked me off,  but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive. 

I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best. 

But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped,  and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring.  It was then I made myself get out of the dark, and get my sh*t together.  

Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances,  l not only survived but thrived. 

I think of all the years I had suffered with such extreme pain, barely functioning,  and the many hospital stays and how that is all behind me now.  (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)  

So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all.  My Angels, each one of you. 

 And as the Grateful Dead famously said,

"what a long strange trip it's been!"

Im so happy I'm tripping with you all.


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.
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!  

 

 

My Ostomy Journey: Jearlean | Hollister

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