Stoma Size

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Rikimaroo
Posts: 394
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Stoma Size

Postby Rikimaroo » Mon Mar 28, 2022 10:18 am

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
Last edited by Rikimaroo on Mon Mar 28, 2022 10:33 am, edited 2 times in total.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

MadMed
Posts: 123
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Stoma Size

Postby MadMed » Mon Mar 28, 2022 10:29 am

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.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Rikimaroo
Posts: 394
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Stoma Size

Postby Rikimaroo » Mon Mar 28, 2022 10:35 am

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
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
beach sunrise
Posts: 647
Joined: Thu Mar 05, 2020 7:14 pm

Re: Stoma Size

Postby beach sunrise » Mon Mar 28, 2022 5:45 pm

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.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 394
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Stoma Size

Postby Rikimaroo » Tue Mar 29, 2022 10:07 am

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!!
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stoma Size

Postby Claudine » Thu Mar 31, 2022 10:27 am

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?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

Rikimaroo
Posts: 394
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Stoma Size

Postby Rikimaroo » Thu Mar 31, 2022 4:49 pm

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
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

User avatar
Peregrine
Posts: 41
Joined: Tue Mar 01, 2022 1:18 am

Re: Stoma Size

Postby Peregrine » Sun Apr 03, 2022 2:31 am

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.

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Stoma Size

Postby Claudine » Tue Apr 05, 2022 10:28 am

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!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11


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