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Stoma Size Changing  

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oriharakaoru
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September 11, 2018 9:11 pm  

This is definitely more of a comment than a question, but I just had something completely weird happen. I've had an ileostomy since 1992(!) and it has pretty much always looked the same. It's shrunk in circumference over the years, but never in length. Like, it moves, obviously, but just now when I was changing my bag I had the scare of my life.

I when I took my bag off, the stoma was almost flat to my abdomen. I was like !!!!!! It was honestly scary. I've never seen it like that before. I was literally like "should I call my doctor like right now???"

So I try and go through my bag change like normal (much harder to position the wafer correctly, I discovered), and as soon as everything is in place, the stoma pops right back up! I was like!!!!!! !!!!! !!!!!!!! Sorry, it was just really frightening but everything seems to be fine now?? Aaaarrrrggggghhhhhh Come on, ostomy, I just need you to lie low and be part of my "normal" - I don't want to worry about you!


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Dona
 Dona
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September 11, 2018 10:21 pm  

Hi,

That happens to me too, although I have only had the stoma for 3 years. It would be quite surprising after that long! As long as it works, right?

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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john68
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September 12, 2018 1:55 pm  

Hi All, that's a strange one, i know that a stoma pulling back is a sign of a blockage but this don't seem the case form what you folks are saying. i notice my stoma will wriggle and twist when i am changing but never pulling back to tummy level. Dona you say that this happens you with no signs of any problems. When is happens does it last long?

ileostomy 31st August 1994 for Crohns


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Marcie
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September 12, 2018 2:31 pm  

Hi John, Nellie (stoma) does this also--only when she is ready to give out a big blow out--I see this only when changing her dress. like she is upset--pouting I call it so I keep an eye on her during this changing time and have everything ready to bag her one.. :-) I see for me anyways-- stomas are air senative.. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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VeganOstomy
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September 12, 2018 3:03 pm  

When my stoma goes flat, it generally means I've got a blockage or one coming soon. There are other reasons why it would do that, but that's been the pattern for me. 

Do you normally wear a clear or opaque pouch? I ask because it's possible that your stoma does this normally, but you simply haven't been able to see it if you're wearing an opaque pouch all day :) 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
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September 12, 2018 5:54 pm  

I have a question…….and bothered by it...………

The area around my stoma (not the stoma) but the 3-4 inches around it has protruded outward.. like it Is just hanging out there-- if it gets any longer? my pouch will be not touching my skin if I stand up-- but it is NOT at or near that performance as of yet.   have seen my Dr.  Is there any information I should bee reading up on for possible affect of this?? I don't want to be surprised with a surgery or something worse.  I want to be able to handle what ever it COULD be..?????????  help??????

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
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September 12, 2018 6:35 pm  

John,

Yes my stoma just is sometimes flush with my body. Doesn't seem to be the result of anything I can figure out.

It started about 6 months or so ( maybe a year) after I got my stoma. Then I got leaks. Then I talked to a stoma nurse and started using a light convex wafer. Problem solved.  The slight downward pressure around the base of my stoma caused by the convexity  keeps it from going any further 'down'. It still does the telescoping thing, but it doesn't seem to cause me any difficulties.

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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sjlovestosing
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September 12, 2018 7:59 pm  

Hi all,

I've had my stoma go flush, but usually when I am showering, and that's been happening for at least three months. Also, I do use a light convex system - that seems to keep things in order. I have a slight "bowl" where the stoma is, which is the reason I use a convex system. So far, no blockages.

Stella


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john68
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September 13, 2018 1:28 pm  

Hi Dona and Stella, knowing that this is normal and that the convex wafer works brilliant :-) 

Oriharakaoru that must have been a shock to find this happening but may be as Eric says it could have been some thing the stoma has been doing.

Marcie I would have the stoma nurse/Doctor take a look.

 

ileostomy 31st August 1994 for Crohns


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oriharakaoru
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September 13, 2018 10:00 pm  

I wear a clear bag, so I see it all the time. It's always the same size! (roughly) Luckily things have seemed to have returned to normal since Tuesday. Thank god. And no blockage either. Really weird.


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VeganOstomy
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September 14, 2018 9:33 am  
Posted by: oriharakaoru

I wear a clear bag, so I see it all the time. It's always the same size! (roughly) Luckily things have seemed to have returned to normal since Tuesday. Thank god. And no blockage either. Really weird.

It's probably nothing, but if it continues to happen and/or you have other unexplained changes, I would speak with a stoma nurse just in case.  My stoma has done some wild things temporarily, so I can understand how shocking it must be to witness something out of the ordinary happening with yours. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Linda Knelsen
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September 14, 2018 1:41 pm  

I have had it happen when my stoma seems to have fallen out. By a good two inches in length. She would just hang there looking sassy. Just like a Once I thought about it, I realized that, once again, being malnourished from malabsorption, I have been loosing fat off my body without trying. So, I figured out that my stoma area must have also lost fat, giving her more room to protrude.  Her color and liquids were the same. I gave it a two or three days, and then when I saw my doctor, he said that I was likely right as nothing else had become evident.  About a week later, she went back to her normal size. That was a first in 12 years of stoma life. Thanks for the entertainment Rose! 


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Kathleen
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September 18, 2018 3:29 am  

Hi Marcie,

I just posted a new topic -"Ileostomy-loop of intestine has protuded through stoma opening etc....  "

Cannot find anything on the forums but what you describe is what is happening to my husband- I think. Hope to get some more info on this.

Katy


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