Dealing with Leaks from an Inverted Stoma

Please help me. I have leaks constantly with an inverted stoma.

I wish I could give you some advice. Unfortunately, my experience is nothing like your husband's. But there are people here who should be able to give you some advice. The reason I am piping in is to thank you for being there for your spouse. He is very fortunate to have someone like you in his life to help him through a very difficult experience. I am lucky to have a wife who has been by my side every step of the way and helps me in every way she can. However, my path has been pretty smooth compared to what you describe in your bio. I hope you can solve this issue soon.

The only question I would have is about diet. Is he eating anything that should help slow down and/or thicken output? I eat a lot of potatoes, which help thicken things. So do bananas and pasta. Marshmallows can slow things down pretty quickly. This all doesn't help with the retracted stoma, but it can help with the messy changes.

Daniel

Hello,

From what you described, your husband needs stoma revision surgery. I don't know how easy or possible that would be in Canada, or if there is damage to the intestine that would prevent a revision. With the seepage and leaks you described, your husband must be absolutely miserable. A revision could be as simple as pulling the intestine out more and re-stitching it in position, or repositioning the stoma to a more stable area.

These are just band-aid tricks… as others have said, if it's staying inverted, he needs to talk with the surgeon. Do you have access to a stoma nurse in the meantime? When you are helping with the change, is he standing while doing it? If so, maybe have him lying down when you put it on so it's already in a different position. Do the leaks only happen when he's lying down? I remember after having a salad, it took 2 hours once before my stoma would settle down and I could get a new bag on; it was miserable. My 11-year-old (at the time) was the only one home to help me, so she brought me a whole roll of paper towels. Don't either of you be afraid to push and get the care he needs from the surgeon or whoever you can get a hold of. Has he tried potatoes or rice before going to sleep?

Hi - It looks like the Western or St. Joe's are the closest to you. I would opt for a trip to the Western because they probably have a couple of surgeons on call over the weekend. It also sounds like you might qualify for an ambulance, and that will get you into Emerge quicker. You could also try getting an ET nurse at: https://www.ostomycanada.ca/find-a-nswoc/ as they have a good support page. Best, Bryce

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You don't mention if you use a moldable seal or not.

Hello,

I also think you need to be seen by your gastro doctor or surgeon. I had the same thing happen to me when I was a young girl. My stoma was retracting inward … they actually closed me up on my right side and moved my ileostomy to my left side. Talk about scars :( I think you will continuously leak if you don't get it taken care of … good luck!

Be sure when you get time to post what product, treatment, or surgery was decided to help your husband. This will greatly help others with similar stoma troubles.

My stoma sticks out too much. Which causes its own problems. So I'm thinking of revision surgery too.

Hello Everyone:

Ostomy revision idea is excellent. I have asked a surgeon for a stoma specialist to assess my husband. Just waiting on the call.

Deep convex flange can be changed up to 2 times nightly due to leaks. I have my husband sit up in a chair all night in order to push the stoma out. Once he lays down, the stoma recedes and leaks and breaches around the flange occur.

We have started chemo, and diarrhea is problematic. I watch his diet closely and provide thickeners such as bananas and marshmallow products, to name a few.

I have different products to slow down the bowel. However, it can take up to 70 minutes and wads of gauze in order to mop up the poo before you can get a flange on, then later more gauze in order to get the pouch on.

My husband is exhausted.

We are all pulling for him. I hope you can get some resolution from the surgeon. This should be fixable, but it could also be more major surgery. Every time I hear stories like yours, I remember how lucky I was that my own problems were not due to cancer. Please continue to keep us updated on his progress. You must also be exhausted. You are also an angel!

Daniel

I'm wondering why some surgeons position the stoma low on the skin. Maybe for appearance?

The products ostomates use are well known. The biggest problem is leakage.

My stoma sticks out quite a bit, but it's no big deal... mostly just visual. As many ostomates have posted, short stomas are trouble, especially for ileostomy.