Hello, my son has a ton of pain when gas comes out of his colostomy. His motility doctor said it may just be a sensory reaction because there's nothing "wrong" happening with his stoma. Anyone else have this issue?
Codybug
Mar 08, 2025 5:28 am
Past Member
Mar 08, 2025 2:45 pm
Codybug pain in the intestines and stomach or pain underneath the stoma?
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Maried
Mar 08, 2025 6:11 pm
How long has he had his ostomy? I remember when mine was very new. The expelling of gas hurt because I was still healing.
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SusanT
Mar 08, 2025 7:32 pm
I get a little discomfort with gas. It is really coming from the surrounding skin and gets worse if the skin is irritated. This is very momentary and does not linger. Irritated skin may have slight lingering effects but should quickly settle to what it was before.
I've also noticed pain sometimes when the gas is moving through my colon right before it comes out. I had this before the surgery, but it seems worse now for some reason. That pain is always transient and gone within a few minutes.
As Maried said, if the stoma is new, he is likely still healing. I know I had more pain early on.
If his pain is greater than what I'm describing, you probably need to check in with his doctor.
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eefyjig
Mar 08, 2025 11:17 pm
Hi Codybug, if your son's colostomy is relatively new, the pain may be from trapped gas and his body trying to get used to this new system. Moving will help this. I started to have pain after eating around 2021 or 2022, and my ileostomy was six or seven years old. The pain was very intense and improved when I expelled gas. One gastroenterologist told me it was my gallbladder, but the pain didn't go away after its removal. Another gastro told me my intestines were "sensing" pain after eating. Meds didn't help it. I never quite bought the second answer, and my gallbladder certainly wasn't the culprit. I never found any more suitable explanations. It has slowly improved to the point where I barely notice it. I still get a bit of pain when I eat certain things like nuts, but nothing as intense as a few years ago, and moving to expel the gas always helps.
Codybug
Mar 10, 2025 2:31 am
Thanks so much, everyone. Cody's 20 and non-verbal, and is cognitively kind of like a baby, so he can't tell me anything about the pain. I just notice him hyperventilating and squirming, and then gas comes out of the stoma. Your responses make a lot of sense - I will wait and hope it's better as it heals. Thanks again!