Colostomy: I hate this thing!

Posted by coloncutter @coloncutter, Apr 24, 2025

Does anybody else think that having a colostomy bag is worse then spending time in prison. I hate this thing

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I cut the hole in my flange a bit bigger than my stoma because my stoma waxes and wanes according to some inner rhythm that is a mystery to me. What helps me remain free from leaks (as long as it lasts from one flange to another) is the Eakin ring which goes just under the flange. I stick it onto the underside of the flange with just a smidgen intruding into the cut hole. This smidgen is turtlenecked to the front of the flange which results in any bare areas of my skin being covered and protected from any rough edges in my cut out hole. The VON (Victorian Order Of Nurses...Ontario and I think Nova Scotia still has them) taught me this one. I use the thicker Eakin ring but have some sample thinner Eakin rings to try next.

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Perhaps with an eurostomy things are different. If I cut the hole bigger more skin is exposed and it gets very irritated around the stoma. Using a belt helps keeping it secure and prevent leaks. In my case I find it works best not to cut it bigger. I have tried doing it in the past.
Everyone is different. It’s whatever works best for you.

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Profile picture for fckaiser @fckaiser

@dona46 I used to cut the hole for my stoma at 1.5" in diameter which fit snuggly around my stoma. I had some leakage problems so I increased the size of the hole to 1.75" and stretched the wax ring hole to fit the base plate. For some reason this helped with not having leakage problems any more. It would seem that making the hole bigger would increase leakage problems but it didn't. I don't know if the close fit on the stoma caused increased pressure on the adhesive on the base plate and led to leaks. It could be that when the stoma spasms as it does sometimes that it puts pressure on the adhesive. The looser fit helps that. My leaks are very minimal now. Hope this helps you. Give it a try and see.

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@fckaiser Thanks for the explanation. My illiostomy stoma is much smaller. It’s about 1 inch. I have been working to get wax rings to fit close. I’ll have to give a larger opening a try.

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You are welcome. My wax rings from Hollister (number 7805) start out with a 5/8" hole and I have to stretch them to get the size I need. I just keep rotating them with my fingers and stretch them so the hole is the size I need (about 1 1/2" diameter).

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Profile picture for piki @piki

I'm fine with the colostomy, but then I'm female, very old and long married. What I have ended up with besides the colostomy is a permanent urinary catheter. Now that I do hate!! To me it is a prison so far. I'm hoping that time will soften the effects some. Cannot imagine being in a real prison.

Sorry you are having problems.

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@piki my husband just got a colostomy. I am the one draining it as he has tremors and can’t do it himself. We’ve gotten into a routine of checking it morning, noon, and night, and I’ve found ways to clean the bag with a spritz of warm water (Dr approved this) to loosen stool sticking to the bag. In my husband’s case, he has advanced colorectal cancer, and I look at the colostomy as extending his life and giving him greater quality of life. Before the colostomy, he was running to the bathroom several times an hour and had explosive watery diarrhea along with mucous and blood caused by tumor and obstruction. He still has the tumor/mucous/blood but no more explosive diarrhea.

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Profile picture for kalliope56 @kalliope56

@piki my husband just got a colostomy. I am the one draining it as he has tremors and can’t do it himself. We’ve gotten into a routine of checking it morning, noon, and night, and I’ve found ways to clean the bag with a spritz of warm water (Dr approved this) to loosen stool sticking to the bag. In my husband’s case, he has advanced colorectal cancer, and I look at the colostomy as extending his life and giving him greater quality of life. Before the colostomy, he was running to the bathroom several times an hour and had explosive watery diarrhea along with mucous and blood caused by tumor and obstruction. He still has the tumor/mucous/blood but no more explosive diarrhea.

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@kalliope56 So sorry that you are both facing such tough times. Your husband is lucky to have you as his caregiver. My husband is a great help to me also. You would probably benefit by joining one of the excellent Facebook forums dedicated to helping folks with ostomies. I belong to the Canadian Ostomy forum and it's been a tremendous help to me both with answers to my questions and also with support. All best to you both.

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Profile picture for kalliope56 @kalliope56

@piki my husband just got a colostomy. I am the one draining it as he has tremors and can’t do it himself. We’ve gotten into a routine of checking it morning, noon, and night, and I’ve found ways to clean the bag with a spritz of warm water (Dr approved this) to loosen stool sticking to the bag. In my husband’s case, he has advanced colorectal cancer, and I look at the colostomy as extending his life and giving him greater quality of life. Before the colostomy, he was running to the bathroom several times an hour and had explosive watery diarrhea along with mucous and blood caused by tumor and obstruction. He still has the tumor/mucous/blood but no more explosive diarrhea.

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@kalliope So sorry I have bad arthritis and cannot empty a bag easily I now use a Coloplast one piece disposal bag and just put new bag on each time It has made my life much easier

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Profile picture for fckaiser @fckaiser

@piki I am 77 years old and have had a stoma since my colon removal 7 years ago. I at times had problems with leakage around the base plate until I started making the hole bigger in the base plate around my stoma. Now I don't seem to have any problems. I discovered if I drink beer or wine I get leaks more easily so I think the alcohol is melting the adhesive on the base plate so I am more careful about that now. My stoma protracts out every once in a while and I don't know why. Sometimes it happens if I am working hard and lifting heavy items. Other times it just does its own thing. In 3 o4 days it shrinks back to normal size. I empty 6 or 7 times a day. I change my bag every 4 days because going longer can cause leaks. Overall I am satisfied with the stoma but wish I didn't have it of course. It is better than the alternative of always feeling discomfort and pain in my lower abdomen from serious ulcerative colitis and never knowing if I would feel better again.

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@fckaiser Hi. I'v had my colostomy for about two years. It behaves well when I avoid being too casual about changing bags.
I notice you talk about "working hard and lifting heavy items" and I find these and other activities cause the pouch to drift around, sometimes covering the edge of the stoma itself. My stoma nurses are pretty helpful in general but they don't seem to want to discuss 'protection'. There are several systems on sale but, at their prices, I don't feel like experimenting with all of them.
Our two conditions are not the same (I've had about 1/3 of my colon removed due to bowel cancer) but it would interest me to find out if your activities also cause the bag to move about. Have you tried any forms of protection / cover?

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Profile picture for alyner @alyner

@fckaiser Hi. I'v had my colostomy for about two years. It behaves well when I avoid being too casual about changing bags.
I notice you talk about "working hard and lifting heavy items" and I find these and other activities cause the pouch to drift around, sometimes covering the edge of the stoma itself. My stoma nurses are pretty helpful in general but they don't seem to want to discuss 'protection'. There are several systems on sale but, at their prices, I don't feel like experimenting with all of them.
Our two conditions are not the same (I've had about 1/3 of my colon removed due to bowel cancer) but it would interest me to find out if your activities also cause the bag to move about. Have you tried any forms of protection / cover?

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@alyHi, thanks for your note.

I use a Hollister 2 piece Ostomy skin barrier tape (part number 14603) to which I attach a Hollister wax ostomy barrier ring (Part number 7805). The skin barrier tape has adhesive that attaches to my skin and the wax ring seals around my stoma. To the skin barrier tape I attach the Hollister drainable ostomy pouch (Part number 18013). It just snaps on the skin barrier tape ring for a secure seal. It is drainable which I end up emptying 6 or 7 times a day (depends how much you eat).
With the skin barrier tape adhesive attached to my skin there is no rotation. It stays put and perfectly fit to my stoma. The bag sometimes rotates a little but that does not affect my stoma. I use a stoma belt around my waist to hold the bag. I usually change my appliance every 4 days because I have found waiting longer I get leaks out the side of the skin barrier tape that adheres to my skin. This system works very well for me. Of course there are "accidents" sometimes where I get leakers but that is just life. I don't have to limit my physical activities very much. In the summer when you sweat a lot sometimes the adhesive lets loose because your skin is sweating but not too often. Hope this helps you. Best Regards, Fred

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I hate my bag also I can have a reversal but my Dr. Said he would have to open me up again and I almost died when they opened me up the first time. I'm so undecided ,but hate cleaning the bag out and going places you have to make sure you have enough bags and if you have people with you, you feel bad if they are waiting on the bathroom .

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