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Building Confidence with an Ostomy (w/ video)

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VeganOstomy
(@veganostomy)
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Posted by: dogtalkerer

vegan, re read the logic article from your friend you posted.  the comments you are making come directly from  that article.  look at your own membership, then look at UOAA memebership, very very small numbers compared to the vast number of stomas out there.  as the article states, your sample size  is way too small to be making the statements you are making.

Can you explain which statement specifically is problematic? I wrote what I did based on my five years of working directly with patients, nurses, industry and what's been reported in published research. 

I'd be happy to expand on specific points if you can tell me what seemed off. 

the predictions you are making about karens brother sound very biased  and without evidence.

Again, my statements come from years of working directly with people who have ostomies and those who care for people with ostomies. When I attend nursing conferences, they report over and over that many ostomates feel ashamed and embarrassed. But through my advocacy work, I know that there are still many who feel the opposite. 

 I've told very few people in the 10yrs I've had the stoma/bag.   I see no faults in doing this nor can I imagine any problems I could  possibly cause myself.

I'm glad you've been able to do that for the last decade. 

Let me give you an example of how hiding it might be problematic. 

Say you have to meet a client and you're running late because your ostomy leaked. You could apologize and make up an excuse (lie), but what if that happens again? What if your boss asks why you keep missing these appointments and meetings? I don't see lying as a viable option, nor do I believe that keeping the ostomy a secret will do any good. 

Say you take another ostomate who hasn't been having much luck getting their high-output stoma under control. This person may be embarrassed that they've had to cancel going out with friends, but they don't say why. They may lose friends who may be otherwise understanding. How will this benefit the person? 

I'm not saying that we should tell everyone and anyone, but going through great lengths to keep it hidden from family, friends or coworkers can and will backfire for most people. 

On the flipside, many people who are open report being happier, more comfortable, and receive more understanding from those around them. 

I see no reason not to be open if you're comfortable doing so.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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As I stated previous, I too will and do not judge any one for their choice to keep the ostomy a secret. But no matter how well this can be done it will cause problems like the ones pointed out by Eric. What about dating!! I would never have met my wife or had the normal amazing times I had if I had been hiding the ostomy. My job business could not have continued without people knowing, so was I to give it up. I could not have helped another ostomate I met shortly after my stoma who was in a bad way. As for trying to keep up or catch up with the strong! well some of the strongest people I know are the one who cope with and survive serious illness.

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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Same for me. People are of course free to do whatever they like.  

For me it is just part of me. I don't promote it or hide the fact that I have an ostomy. I am neither proud or ashamed of it. Just grateful.

All my family and friends know . They were also just happy I am alive.

People in my neighborhood noticed when I was sick and was not on my usual morning walk and knew I was very ill from my husband who was walking the dog alone. Many asked me about my illness when I returned after my surgery. I was forthright and gave as much info as they seemed to need or wanted.  The only thing that used to annoy me was when people asked ( understandably) what they could do to avoid it or what I had done to myself to get it. I patiently just explained about the autoimmune disease I had. 

So many people also had stories of IBD in their family. There are at least 6 people I have met that have stomas or who are still struggling with IBD. One friend told me of a great uncle who died of something that they called 'jumpy belly' at that time. IBD??? maybe. 

 

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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Karen
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Thanks, Eric. And I thought I went through some "body positive image" problems when I first got my insulin pump at age 9! It seems like body positive is an issue for many people with ostomies.

He made my "pinky swear" (and you know the sacredness of the sibling pinky swear) not to tell anyone or even mention it, so I won't. I guess there's worse kinds of secrets to have to keep.


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VeganOstomy
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Hi Karen,

Nearly everyone has some form of body positivity problems, with or without an ostomy. If he's not comfortable, don't push it. He may open up in the future, but it does have to be on his terms.

Take care, and thanks again for wanting to learn more.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Robert
 Robert
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Hi Eric!

I guess I'm just venting my frustrations here. I feel that there's still not much out there on impotency after ostomy surgery. I did try Viagra and Cialis, but to no effect. I checked out an ostomy support group near me, but the members were all a good 20-30 years older (I was the youngest one in the room).

Still, I have my health back. I look at what other people with ostomies are going though and I'm in far better shape. I'm in a cycling club and we do rides that are 40-50 miles in length, So that's something to be grateful for.


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VeganOstomy
(@veganostomy)
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Hi Robert,

I have to agree, actually. Not many men want to talk about it, and that's probably why the information isn't out there.

There are numerous studies highlighting this complication and there are quite a few treatment options, but they aren't discussed. 

Not sure when you tried those two drugs, but have you spoken to your surgeon (or urologist) about other options?  

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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