The Colon Club

Hello Everyone,

Ever since I got this new stoma (ileostomy) I noticed it gets big and fat sometimes and then super small LOL. It's crazy. Freaks me out when its big, doesn't seem prolapse, maybe a little, but not a big deal. It really causes stress when I have to figure out bag size to adjust so when it gets big the stoma is not getting strangled if I make the cut hole smaller. Anyone else deal with this? Sometimes this causes leakage unfortunately because its hard to cut hole for one size, but maybe I am think wrong and stoma wouldn't get hurt if I cut hole to actually match the size of the stoma foundation.

PS I had ileostomy before without this happening and colostomy without this happening, this is the most recent surgery and new stoma had to be constructed.

Thoughts?

Rikimaroo

I don't have a stoma (yet?) but during stoma teach i was told that at first it will do that and then as things heal, it will get smaller and more manageable. They did tell me to cut the hole to size in the first few weeks and then it'll be stable when it heals. Hope someone more knowledgeable can provide more details.

MadMed wrote:I don't have a stoma (yet?) but during stoma teach i was told that at first it will do that and then as things heal, it will get smaller and more manageable. They did tell me to cut the hole to size in the first few weeks and then it'll be stable when it heals. Hope someone more knowledgeable can provide more details.

Yeah I knew that too, but this isn't my first stoma, I had an ileo before and then a colostomy then back to an ileo. It's kind of weird it gets fat and plump, then small, it fluctuates daily. Is there any special bags/wafers that adjust to the size. I will put in a call to my stoma nurse for sure, but wanted to get insight from others here.

Thanks,
Rikimaroo

Do you have excess thirst?
My first thought is you might want to be mindful of dehydration.
Dehydration pulls the water out of the colon and causes inflammation/irritation.

beach sunrise wrote:Do you have excess thirst?
My first thought is you might want to be mindful of dehydration.
Dehydration pulls the water out of the colon and causes inflammation/irritation.

Oh no I am not dehydrated I drink a lot of water LOL...Thanks Beach!!

I had no idea this was something that happened. I guess with DH's upcoming surgery, that's one more thing to be aware of! Did you get information from the stoma nurse, Riki?

it actually never happened to me until this 3rd stoma surgery. The last 2 stomas I had never grew bigger or smaller, usually just stayed the same. This is kind of nerve racking to see it big and fat and protrudes our more then normal, but it goes back down as well, either when I am lying down, it just has a mind of its own. It's really weird.

The doctor said its fine, as long as it doesn't come out too much which is called prolapse, but it seems no surgical intervention is needed as you can massage or press on it to make it go back in, gently press lol...IT's creepy and scary at the same time. I don't like it doing this. It also makes it difficult when putting the pouch on and keeping accurate measurements. Your husband probably won't have this issue.

https://www.med.umich.edu/1libr/Surgery ... dStoma.pdf

Mine doesn't look this bad, but that is what prolapse stoma means.

Scary1!
Riki

Claudine wrote:I had no idea this was something that happened. I guess with DH's upcoming surgery, that's one more thing to be aware of! Did you get information from the stoma nurse, Riki?

Good luck on DH's surgery next week! One thing DH should do after surgery is to make a couple of appointments with the stoma nurse to get personalized help in (a) techniques for setting up and changing stoma bags, and (b) procedures for stoma-bag management during air travel and public-transit travel, including the preparation of a stoma-bag emergency kit that can be carried as hand luggage while traveling. This is important, especially for air travel, since the toilets in airplanes are small and cramped and not convenient at all for stoma-bag emptying or changing.

Yes, you are absolutely right. My hope is also that by the time we travel - 4 weeks post-op - DH will have a good "sense" of his ileostomy, what works, what doesn't. And to go to SoCAL from here, we'll be taking two short flights, so hopefully DH won't have to empty the pouch in one of those cramped bathrooms!