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Ostomy: Adapting to life after colostomy, ileostomy or urostomy
It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.
Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?
Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?
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Since 2018, Mom has been battling Stage 4 Colon Cancer. She is currently recovering from surgery and now has a colostomy bag. Although she is an established patient at Mayo-Phoenix, we live in NM and admitted here to a local hospital via ER over 2 weeks ago.
Her bag continues to leak large amounts and no one seems to know how to get it to stop. She has a large incision and the leakage is seeping into her incision and pooling at her belly button. We are working on request transfer to Mayo-Phoenix.
Does anyone know if there is a colostomy specialist that can help us? I fear she could end up with a severe infection.
It’s been 14 days since her surgery.
Hello @sfedders and welcome to Mayo Clinic Connect. So sorry to hear about your mom. It is great that you have reached out for support and to connect with others as you go through this with her.
To start, you will notice that I have moved your post into an existing discussion on ostomies so that you can more quickly connect with members such as @engelee @katydid77 and @jfsbndr who have previously shared about leaks and may be able to share more with you about their experiences.
What cleaning protocol(s) are you using to keep the area clean? What was shared with you upon discharge?
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1 ReactionIs she using barrier strips around the bag? These helped immensely when I had the same problem. Also found that a magic bag heated in the microwave and applied immediately after changing the bag helped the seal.
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1 ReactionVery important to make sure that the surrounding area around the stoma is very dry before applying the appliance. Also, I had to switch products to find one that is relatively reliable. They all seem to link every now and then and some more than others. I have used barrier strips, but have not had much luck w/ those. Keeping the stoma area clean and dry before applying the appliance seems to work the best for me.
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1 Reaction@sfedders . My husband has a Urostomy but I’m sure all kinds of bags have problems with leakage. As others have said, the skin must be dry. We use a hair dryer on low heat, then apply Nasacort (otc nasal spray) to help protect the skin, then dry again with hair dryer. While doing all of that, hold the bag with seal under your arm to warm the seal. Apply the bag and hold it in place for at least 30 seconds.
Take heart —- everyone here is ready to help.
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2 ReactionsThank you. Great suggestions, I’ll give them a try.
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1 ReactionMy husband had the same problems with his new colostomy a few months ago - it was leaking every day! We finally got an ostomy nurse who examined the failed seal and recommended a different kind of bag and belt system to hold it tight against his body - it worked wonderfully and still does, he's not had an emergency since. We also use extender seals for added protection, very easy. Don't despair, the trick is working with someone who will thoughtfully look at her situation and recommend the right appliance/system.
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3 ReactionsI had problems with leaking and sore skin for a year. Finally supplied with convex seals.
I haven’t had a leak since using them. I hope this helps
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3 Reactions@sfedders, how is your mom doing?
I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.
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