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introducing myself and sharing my story.  

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zhtfreak
(@zhtfreak)
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Joined: 2 years ago
Posts: 42
May 28, 2018 9:43 pm  

Hello all,

 

I'm glad I found a community like this. I've got a couple of questions, but I figured I should post an intro, so wall o text coming...

 

I was a three month premie and because of that, am completely blind. It also caused some complications that required me to have what I now think was an ileostomy. They reversed it a month after I turned 13, in mid 1995. Up until then though, I had to deal with all the issues that come with an ostomy bag which was super embarrassing and even now, is kind of hard to talk about. In those early years especially, even being in school with other kids who were also blind, I felt very alone.

 

I was never taught to manage my bag on my own at all -- not even emptying it. That meant that I was really restricted in the activities I could participate in, because I had to either be with or be in close range of someone who knew what they were doing who could help me, and those were few and far between. The absolute worst was being pulled out of class every day those first few years of school to have my teacher empty my bag. when I was a few years older my mom tried teaching me how to do it, but she got frustrated and decided it was just easier to go back to doing it for me. 

 

That got me thinking... I wonder if some info could be put together to help a person without sight manage this stuff? Looking back now, I can see how someone like me could've been taught to empty, but I have no idea how you would change if you couldn't see. Heck, I didn't know till  I started researching this stuff that you can change your bag on the go. I never did that. 

 

I've always kept that stuff pretty well hidden, till my therapist got it out of me a couple months ago. I didn't expect that to help as much as it did. I've found a couple of forums including this one, and a lot of videos on YouTube that I binge watched for a while. It's incredibly helpful to know that there are other  people who deal with this stuff. That would been invaluable back in the 80s in those first years of school. It would've prevented, or at least minimized a lot of embarrassment. 

 

Thanks for reading...


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2926
May 29, 2018 3:03 am  

Welcome to the forums! 

I really appreciate you sharing your story. 

If you ever want to help me put together an article that can help other people who are visually impaired, I would love to do it!

I hope to see you around some more 😊

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
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Posts: 1601
May 29, 2018 3:49 am  

Hi And Hello, It takes a lot of courage to deal will issues like this and being able to open up to the right people takes courage in itself. Things have come along way over the years and more help and education is available. it would be a great gift to any one with sight issues for you to pass on experiences and how this could be managed better. you can never change the past but have a better future. I look forward to hearing more from you when you are ready to share.

ileostomy 31st August 1994 for Crohns


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zhtfreak
(@zhtfreak)
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Joined: 2 years ago
Posts: 42
May 29, 2018 7:19 am  

Thanks for the warm welcome. This is one case where the Internet is a wonderful thing. Before I told my therapist about it (which kind of happened by accident), I didn't tell anyone I'd had an ostomy unless I was with someone who was up on their medical terminology so knew what one is. I'm not going to run out and tell the world, but it's good to know now that more than I thought of the way I look at things points back to the shame I felt because I had an ostomy growing up.

Eric, I first found you through a pannel discussion you were a part of on someone else's YouTube channel. I emailed her to also ask about putting together some info for visually impaired folks but never heard back. That's what happens when people are crazy busy though. Lol

I

I have a writing background (I majored in journalism in college), so I would love to help put together some info for visually impaired people that you could share here. I'm also open to doing something like Skype or FaceTime that you could use in a video here and on your YouTube channel. I just want to help others in a similar situation to mine to not have to go through as much shame as I did. I would've loved to know back then that I wasn't alone.

 


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2926
May 29, 2018 10:02 am  

Yes! Thank you for being willing to help put this together. 

Let's connect via email so we can plan this. Can you email me at veganostomy@gmail.com?

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
(@dona)
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Joined: 3 years ago
Posts: 794
May 29, 2018 2:15 pm  

Hello Zhtfreak ,

Thanks for sharing your story and welcome to the forum. Its great to have yet again, another new point of view. We all get here so many ways, its pretty amazing and wonderful to be able to connect this way and hopefully help each other.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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zhtfreak
(@zhtfreak)
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Posts: 42
May 29, 2018 2:33 pm  

Eric, done :) I sent you an email earlier.


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danbh
(@danbh)
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Joined: 3 years ago
Posts: 86
June 10, 2018 12:44 pm  

Hi  zhtfreak,

I admire you, it takes courage to open up this way, with people you don't know.

My brother was also born premature, and was put in an incubator where too much oxygen was introduced, he is considered blind even he can still see just a bit, and even that is going away fast. My son also had an ulcerative colitus , and had an ileostomy for 6 months, at that time it was reversed, and doing fine. I have a colostomy, which is the easiest to manage. This one is for life time, and would not be reversed.

Everyone here (and Eric is great) would love to help in any way we can, so please ask any questions you have, any time.

I wish you all the best, and hope you can learn and empty the bag soon, as for changing the whole thing, that might be harder to do.

Regards

Dan

 


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Tony
 Tony
(@ileostony)
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Joined: 1 year ago
Posts: 229
June 1, 2019 4:04 pm  

Brian,

 

My heart goes out to you. Having to deal with this adversity is plenty hard as an adult. I made it all the way to 41 before I had to have my ostomy and thought that was an awful experience. If I had been a child, so wanting to please and to be liked as any child would, especially as a teenager, I don't know how I would have coped. Thank you for sharing your story with us.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
 LK
(@dlkfiretruck)
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Posts: 805
June 3, 2019 7:23 am  

I think embarrassment and bowels go hand in hand. A noisey stoma does not help much either.  I admire the drive our blind ostomates have and want to encourage you all to continue with this move forward to total independence with pouch business.  I almost fell asleep on the throne the other day while I was counting M9 drops I was putting in my pouch.  With my eyes closed, I realized that if I held my hands against my body in the same pace all the time I could drop them in and HEAR them land. I used my wrist and heal of my hands to be my guide for distance away from my body. I transfer M9 into a cleaned up bottle of saline nasal mist and it works great for drops and each refill lasts about 7 -9 days depending on Roses  output. I have tried it several times since and have had success each time.  All the best! Linda

Linda


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