Seeking Connection and Support After 40 Years of Chronic Illness

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kurly
Jul 01, 2013 9:48 pm

Hi everyone, I'm still learning how to navigate around this site. I've actually never been very active with online support, or any support for that matter. I've always dealt with chronic illness by putting on a brave face and a smile, but after 40 years, I'm spent, so here I am. I'm pretty reserved and quiet around people I don't know. I've had an ileostomy for six years (and still hate the little f***er). Diagnosed with UC in 1976. J-pouch in 1999 after years of being steroid dependent and horrible flare-ups. Chronic pouchitis until emergency surgery in 2007 for pelvic abscesses. The UC is "cured," but then there is a whole different set of issues to deal with. In spite of all that, I have met a lot of my goals over the past 40 years. I have 2 children and a small grandson who is the greatest love of my life. I was a healthcare worker for 20 years but have been unable to work for the past year. Frequent obstructions and high output are keeping me close to home. I guess I'm looking for a new purpose, a way to reinvent myself, but I'm not sure what I want to be when I grow up, or what I can be. Time to reach out. Anyway, just want to connect with others who have traveled the same road. Share some laughs, maybe a few tears.
Is swearing allowed on this site? I swear. A lot. Only around grown-ups though.
g

mild_mannered_super_hero
Jul 02, 2013 10:57 am
hey, and welcome to the site.....

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Past Member
Jul 02, 2013 1:47 pm

I think the short answer is "Mostly." Welcome.

WOUNDED DOE
Jul 02, 2013 6:05 pm
Welcome to the site kurly

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  Lots of good people to talk to in here and share tips, experiences and woes with

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~Doe
Slow momma
Jul 02, 2013 8:59 pm

Hi kurly... Welcome. I'm new here as well. I've only had my ileostomy for 3 months, so I am trying to get used to this stupid bag.... I've been through the emotions of it all and wanted to throw in the towel many times, but with the support of groups like this, it lets you know you're not alone and others are there to help. Barbara

 

How to Manage Emotions with LeeAnne Hayden | Hollister

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kurly
Jul 02, 2013 10:37 pm

Thanks for the welcome, everyone!
gina

Jupiter
Jul 03, 2013 4:54 am
Welcome to the party.
Primeboy
Jul 03, 2013 5:31 am


Reaching out is a great start. If you could turn the clock back in your mind and think about what choices you wish you had made, what would you want to do with yourself now? Perhaps it may not be too late to find and realize a piece of that dream. Actually, I think there's much merit in reinventing ourselves a lot more often. You'll find people here who can help and people here you can help, sharing the same road but with a few laughs and tears along the way. Welcome!    PB
Bikergirl
Jul 03, 2013 10:29 am

Welcome to the site! I am new to this site as well, but certainly not new to the life of an ostomate. I was blessed with my "Lil Buddy" 28 years ago, next month. Still have days where I'd rather not have it, but thankful for the life it has given me!

I too am trying to reinvent myself. Lol. Do I want to go up? Heck no! Hopefully, we all will be well enough to enjoy each and every day as we try to figure this life out.

Happy 4th Celebrations!

Mare

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Penguins7
Jul 03, 2013 11:56 am
Hi Kurly.  Welcome aboard.  I am fairly new here also and this site has been awesome to connect with all kinds of people who have similar experiences. People are so willing to help. Keep you chin up and things will get better.  I guess the bottom line is we will never really like the pouch but the key is we have to accept it and for me I was so sick for 3 years with a flare. Now 6 months after the surgery I am working full time again and golfing 3 days a week. Good luck. Rod
firedup
Jul 03, 2013 12:07 pm

Welcome to the site, Kurly.
It took me 18 years to find a site like this, and I am grateful for it (I've been here a year). There's some great information and wonderful people here. Like others, I'm not thrilled with this pouch, but it's much better than the alternative, and I can do more than before I got it.
Have a great day!
Gail

christiesdad
Jul 04, 2013 1:39 pm
Kurly,

Yes indeed, welcome in. However, you will be warned about me!

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. But it is all in good fun and I will try to be kind. Heh, heh.



Jack