Ileostomy Question

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New Member

Date Joined Feb 2010
Total Posts : 11
   Posted 2/18/2010 6:36 PM (GMT -6)   
Greetings! I'm asking this question on behalf of my husband who has been an ileostomate for 10 months now. While he's adjusted admirably, there is one issue that is ongoing and causing him quite a bit of stress.
It seems that everytime he removes a bag in order to replace it, his stoma will expand. We aren't sure if it's the air hitting it, or if it's because he does it immediately after taking a hot shower. The problem is that once the stoma has expanded, he must cut a hole in his replacement bag that is big enough to accomodate it, but then once the bag is on the stoma will gradually shrink again and remain smaller, meaning the bag won't be a proper fit.
Any ideas? Why is his stoma expanding - is this common or normal?
Thank you so much for any help you can give us!

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 2/18/2010 10:55 PM (GMT -6)   
My Stoma looks like its alive lol it also seems to get bigger then smaller but I think its just working, moving the food through. I have a convex pre cut pouch and use a stoma collar to make sure I don't get any leaks and its been great. I too have only had my ileostomy for just under a year, so I learn new things all the time too. As NASCARon has said the moldable pouches I have heard are also great. Good luck and let us know how you go

New Member

Date Joined Feb 2010
Total Posts : 11
   Posted 2/19/2010 11:42 AM (GMT -6)   
Thanks very much for the info!

I will be sharing this with  my husband once I get home from work today.


Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 2/23/2010 2:17 PM (GMT -6)   
I think I must be having a similar problem... I'm only 1 month out of surgery, but I've gone through a mountain of "free samples". Among those free samples, the only pouches that worked really well had some sort of moldable technology like the Convotec, or even the Holister collar (New Image, I think it was, 14602) - it has this turtle-necking-ing effect that my Surgeon said is "exactly" how it should be.

All the other pouches eventually reveal skin. I need my turtle-necky kind!

My stoma also seems "activated" by hot showers. So frustrating in the general scheme of things!
28 yr old female
crohn's since 2004
every med.
ileostomy Jan 2010
wondering why I waited so long.

New Member

Date Joined Jun 2009
Total Posts : 15
   Posted 2/24/2010 9:29 AM (GMT -6)   
My stoma does the exact same thing. The movement is hypnotic in a goofy way. I would cut the hole bigger to accommodate the increased stoma size, but I used NO STING liquid bandage around the stoma in 3 layers letting it dry between layer application to prevent skin damage.

Now here is another off the wall solution I have tried to shrink up the stoma, is use a hair dryer and see if the stoma gets larger when warm air is applied, or use the cool setting to see if a cool breeze will shrink up the stoma so your husband can cut the hole smaller so he gets a better fit.

It has to be temperature change that effects the stoma for me because it changes no matter when i change the bag, after a hot shower, or in the middle of the night.

Veteran Member

Date Joined Dec 2008
Total Posts : 511
   Posted 2/24/2010 8:49 PM (GMT -6)   
A hot shower makes Penelope swell up too...I used to change my accessory after showering, but started changing it 'dry' (so to speak) and just use a wet wash cloth and then another dry one to remove moisture.  By changing my accessory this route Penelope seems to stay an average size and I'm finding my seal is lasting much longer.  I use the combination of Hollister 88300 (new image) and the Coloplast Eakin Seal (love them!).  For the Eakin Seal I stretch it a bit to fit Penelope's bottom half closest to my tummy, and then I cut it just in one place so I can lay it around her...Penelope is top heavy wink  
Oh and to keep my accessory dry during showers I use the 3M transparent's waterproof...and I get it from my medical supply place for $2 a roll.  I know there are covers that can be used for showers, but I just prefer not to...I rip the tape into several 1"-2" pieces and place them around the edge of my wafer area.  There is some moisture that can get through but it's a lot better than showering with nothing at all.  I get an average of 6-8 days of wear time with each accessory.
I'm glad your husband has adjusted to the life of an ostomate! smilewinkgrin
: )  Robin
29 year old Mommy of an amazing 2 year old and Wife for 3 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
"Your mind is like a parachute, it only works when it is open."  -Unknown

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 2/24/2010 10:23 PM (GMT -6)   
i had never noticed that my stoma got bigger but i think monday, i got in the hottub then in the shower and got out to change. And when i took my stuff off, my stoma was so long! i was like what the heck is going on???? then i thought about this topic and i was like, oh that makes sense, lol.
Anyway, i just always cut mine the same size which is a tiny bit smaller thanwhat it measures. then if its bigger from the heat, when it shrinks down it still fits.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

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