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Ostomy support group I attended, and a question

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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
Topic starter  

I found a small group that meets monthly in my city. Nice to meet other ostomates; one of the guys told me that if I should ever run low on supplies again to call them, that they help each other (thank you Linda LK for that time you did). 

A man from Colopoast did a presentation,and here is where I have question: he talked about parastalsis, and stomas changing/moving during that. I mentioned that I have a lot of movement back of the stoma, that I can feel it and ever hear it sometimes (not when my pouch is filling). Nobody else in the room had ever heard of this. …. Has anybody here at VO? My stoma works well, and I don’t have problems with it.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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(@john68)
Joined: 7 years ago
Posts: 2058
 

Hi Ll, Great news about the support group 👍 . Yes Like you’re saying i have been experiencing this as well. I would describe mine as a full feeling. Other than that I don’t have any problems. Would like to hear more about what your speaker had to say.

ileostomy 31st August 1994 for Crohns


   
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Tigerlily
(@tigerlily)
Joined: 4 years ago
Posts: 421
 

I have the same sensation. Sometimes the movement even wakes me up; the contractions are particularly strong if I’ve eaten a lot of fibre. I suspect that most people can feel this, but since ostomates are more likely to be attuned to it, we are much more likely to pay attention to it than non ostomates. It’s kind of like breathing - we don’t really notice it, but we are more likely to pay attention if we start meditating.

Glad that you found an ostomy support group. They can be so helpful.

 

Laurie

Just a semicolon


   
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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
Topic starter  

The presenter brought samples, and explained and passed them around. He was very personable and interested in us, kept us engaged, and was especially kind to a woman with a very new iliostomy - he said “we especially want to wrap our arms around you today.”  

I have tried some Coloplast samples a few months ago, myself, and didn’t like them as well as the Hollister that I am used to, but I didn’t say that! The Coloplast barrier rings, though, are pretty nice, and also those C-shaped strips (he gave us some of those to try out). 

I met a woman there I had seen before at a book club event - we didn’t know then that we were both ostomates, both have colostomies, both from cancer. Hers was eighteen years ago, which was so heartening  to me.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
Topic starter  

Another thing is there were several guys there, and most of them sat together. The lady I was sitting with said they have a sort of “man club” and get together all the time for fun. I think they are retired.

PS - Eric, I seem to be unable to “like” comments; the option no longer shows. Have I inadvertently turned something off, do you think?

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Bill Bell
(@bago)
Joined: 8 years ago
Posts: 68
 
Posted by: @llholiday

PS - Eric, I seem to be unable to “like” comments; the option no longer shows. Have I inadvertently turned something off, do you think?

You may not be logged on if you don't see the "like" thumbs-up.

Bill
Ulcerative Colitis... Ileostomy June 2016


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
Posts: 4372
 
Posted by: @llholiday

PS - Eric, I seem to be unable to “like” comments; the option no longer shows. Have I inadvertently turned something off, do you think?

It moved to the left side on a recent forum software update. Looks like a thumb now. I'm not a fan of the change, but I don't have control over that.

I will revert back to the old way if the option comes up too in the future.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 11 years ago
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Posted by: @llholiday

I mentioned that I have a lot of movement back of the stoma, that I can feel it and ever hear it sometimes

I get that too. I caulk it up to normal at this point. LOL

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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LLNorth
(@llholiday)
Joined: 6 years ago
Posts: 562
Topic starter  

@veganostomy found it, thank you!

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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glenn.giroir
(@glenn-giroir)
Joined: 5 years ago
Posts: 298
 

I get all kinds of things happening behind and around my stoma (in my abdomen).  When I take a bagless shower, I can feel the muscle of my small intestine tighten as I am about to pass output.  I think my small intestine is very close to my abdominal wall near my stoma.  I can feel things move through my abdomen near my stoma.  I can feel it inside and I can feel it with my hand.  When in the shower, if I press on that area lightly, I get output immediately.  So, I think most of mine is output related.  I used to worry about everything the year after my surgery.  Now, nearly 3 years from my surgery I have come to accept that all stomas are different and mine has its own way of doing things.  I'm not herniated, and everything works incredibly well, so I don't worry about weird sensations, lumps and bumps that come and go.  I figure I'll know if something goes wrong.  Take care!        

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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