Ostomy site pain and output

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Marie25
Posts: 40
Joined: Tue Aug 20, 2019 9:32 am

Ostomy site pain and output

Postby Marie25 » Sun Dec 13, 2020 8:02 pm

Hello All, back with another question...

DH next PET scan is due this month/early January. But in the mean time he is having some achyness and dull pain after eating large meals only. Just feels normal full after a regular size meal. He does have a large hernia at the ostomy site so we hope that is where the pain/discomfort is coming from. Lately his ostomy bag will fill more than usual after eating these large meals too. Any chance this is normal or likely the sign of a recurrence? I was deathly afraid of a recurrence back in July also but his scan was clear then. Will be anxious for the next few weeks untill we get his next PET.
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

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Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Ostomy site pain and output

Postby Green Tea » Mon Dec 14, 2020 4:25 am

Marie25 wrote:Hello All, back with another question...

DH next PET scan is due this month/early January. But in the mean time he is having some achyness and dull pain after eating large meals only. Just feels normal full after a regular size meal. He does have a large hernia at the ostomy site so we hope that is where the pain/discomfort is coming from. Lately his ostomy bag will fill more than usual after eating these large meals too. Any chance this is normal or likely the sign of a recurrence? I was deathly afraid of a recurrence back in July also but his scan was clear then. Will be anxious for the next few weeks untill we get his next PET.

First, a question: What kind of ostomy does your husband have, permanent or temporary?

Marie25
Posts: 40
Joined: Tue Aug 20, 2019 9:32 am

Re: Ostomy site pain and output

Postby Marie25 » Mon Dec 14, 2020 9:50 am

Green Tea wrote:
Marie25 wrote:Hello All, back with another question...

DH next PET scan is due this month/early January. But in the mean time he is having some achyness and dull pain after eating large meals only. Just feels normal full after a regular size meal. He does have a large hernia at the ostomy site so we hope that is where the pain/discomfort is coming from. Lately his ostomy bag will fill more than usual after eating these large meals too. Any chance this is normal or likely the sign of a recurrence? I was deathly afraid of a recurrence back in July also but his scan was clear then. Will be anxious for the next few weeks untill we get his next PET.

First, a question: What kind of ostomy does your husband have, permanent or temporary?


Permanent
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

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beach sunrise
Posts: 356
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Re: Ostomy site pain and output

Postby beach sunrise » Mon Dec 14, 2020 11:58 am

Hernias can cause pain obviously. Maybe some pre/probiotics to help balance the output?
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
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. Adding Everolimus soon.
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Green Tea
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Location: Nusa Tenggara

Re: Ostomy site pain and output

Postby Green Tea » Mon Dec 14, 2020 2:29 pm

Thanks for your reply. I have no experience at all with permanent ostomies, only with a temp ileostomy. I think you would be better off listening to people with permanent ostomies, but I can mention a few things here that pertained to my temp ileo.

1. Size of meals - I was told to have only small meals (snacks) 3 to 5 times a day, but never a big meal. Big meals, especially at night, can cause the stoma bag to reach capacity and burst in the middle of the night. I also learned, by experience, to always avoid drinking carbonated beverages because they generate a lot of gas in the bowel and tend to push stool out faster than normal, and they also fill the stoma bag quickly with gas.

2. Parastomal hernia - If a hernia has already developed, it may be possible to get some relief by getting an abdominal binder that is especially designed with a circular hole to surround and support the ostomy device.

Image

As for having hernia-repair surgery with a permanent ostomy in place, I wouldn't know what to say. My own parastomal hernia, which was quite large, was repaired eventually at the same time and in the same surgery when my temp ileostomy was finally removed.

For your husband, I think the best thing right now would be to get a well-fitted ostomy belt to prevent the hernia from getting any larger.

Marie25
Posts: 40
Joined: Tue Aug 20, 2019 9:32 am

Re: Ostomy site pain and output

Postby Marie25 » Mon Dec 14, 2020 11:28 pm

Green Tea wrote:Thanks for your reply. I have no experience at all with permanent ostomies, only with a temp ileostomy. I think you would be better off listening to people with permanent ostomies, but I can mention a few things here that pertained to my temp ileo.

1. Size of meals - I was told to have only small meals (snacks) 3 to 5 times a day, but never a big meal. Big meals, especially at night, can cause the stoma bag to reach capacity and burst in the middle of the night. I also learned, by experience, to always avoid drinking carbonated beverages because they generate a lot of gas in the bowel and tend to push stool out faster than normal, and they also fill the stoma bag quickly with gas.

2. Parastomal hernia - If a hernia has already developed, it may be possible to get some relief by getting an abdominal binder that is especially designed with a circular hole to surround and support the ostomy device.

Image

As for having hernia-repair surgery with a permanent ostomy in place, I wouldn't know what to say. My own parastomal hernia, which was quite large, was repaired eventually at the same time and in the same surgery when my temp ileostomy was finally removed.

For your husband, I think the best thing right now would be to get a well-fitted ostomy belt to prevent the hernia from getting any larger.


Wow thanks for all the great info. I will let him know!
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

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Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Ostomy site pain and output

Postby Green Tea » Tue Dec 15, 2020 3:03 am

For issues pertaining to colostomies, many of MissMolly's past posts give information and advice. If your husband has a particular problem related to colostomies that he would like further information on, he could first check to see if any of MissMolly's past posts cover the issue.

To do this, he can click on the link below.

MissMolly's Insightful Posts
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58013&p=456986#p456986

For more complex colostomy issues your husband could access the message board at ostomy.org or even register there to post messages on their board:

https://www.uoaa.org/forum/index.php

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Ostomy site pain and output

Postby PainInTheAss » Thu Dec 31, 2020 2:30 am

I had this happen my first time going out to dinner. I was doubled over with pain the next day, and almost the whole day. My daughter's friend came over and was very concerned that it was cancer. No, I just ate too much.

From what I understand, the colon shrinks some after this kind of surgery, so things like gas can be much, much more painful.

It seems that over time my colon stretched out or something, because I don't seem to be as bothered by big meals or gas like I used to be. On the other hand, my stomach may have shrunk over time to just get used to eating smaller meals. It's not very comfortable dealing with gas and that overly full feeling if you eat too much, so I might have become conditioned to eat less per sitting.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation


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