Struggling with Leaking Convex Stoma - Need Advice

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julies1229
Jul 11, 2012 3:35 am

I was diagnosed with rectal cancer ten years ago and ended up with a permanent colostomy. I had no problems until I developed a hernia. I had a hernia repair and a stoma revision done about a month ago. I went from a nice little stoma that was very easy to pouch to a convex stoma. I am having so much trouble trying to work with this new stoma. It leaks all the time. I have never been so depressed. I have to go back to work in a few weeks and I am terrified. I have been working with the stoma nurse in my surgeon's office. She pulls out her McGuyver bag and whatever she puts on me ends up leaking. Her response when I call her is to come back in and she will "figure something out". I don't know what to do. Any suggestions would be appreciated.

funnygurl
Jul 11, 2012 4:13 am

Have you tried the FlexPro flange and Sensura pouches by Coloplast? They work for me and I had leak problems. I also use a paste adhesive on the flange for good measure. Contact Coloplast and they will send you samples.

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This site has been a blessing for me in learning how to cope with and navigate this journey as an ostomate. I have a colostomy as a result of a perforation in my colon since May of this year. I don't know yet if it will be permanent or reversible. The people on here have provided me with so much advice and information about living with an ostomy that I don't think I could get anywhere else. You all have given me hope and a place to come to for support. I still struggle with acceptance, but know that it will come if I am patient. Patience has never been my strong suit! Also, I love all the humor, although it really pissed me off when I first came on here. Thanks to all of you.

Texas Girl
Jul 12, 2012 3:25 am

So sorry to hear about your problems, but I too have a hernia and was wanting to do the surgery and try to fix it. But I have heard of problems with the surgery. So do you suggest not having hernia repair surgery?

julies1229
Jul 16, 2012 3:02 am

Unfortunately, I did not have a choice. I was really having problems with obstructions. I was not prepared for the stoma revision and the changes that I am dealing with. I am hoping as I heal - this stoma will be easier to work with. Make sure you go to a really good surgeon and talk with them about all of the things that may change after surgery, such as stoma revision or even stoma relocation. The good news is that I don't look like I am smuggling a grapefruit in my pants anymore! The contours of my stomach are much more even. Good luck.

Texas Girl
Jul 17, 2012 3:01 am

Well, truthfully, my doctor doesn't want to do the repair. She said it will all be fine and just name it and go along with it. Well, that's easy for her to say!! The plastic surgeons don't want to do surgery because I am a smoker. They say it won't heal. So my hernia just keeps getting bigger and bigger every day. I have both a colostomy and a urostomy. So they say there really isn't anywhere to move my stoma to. I so wish that I could meet people in person with the same disabilities that I have. I know I could learn a lot about all of it that I don't know. I just get up every morning doing the same thing. I don't know any other way of doing it. I do not irrigate, I don't know how (and kinda scared). I am from Texas. My doctors are at MD Anderson in Houston. Where do you live and go to the doctors at? Hope it all works out good for you. Have a great night.

 

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TerryD
Jul 19, 2012 4:39 am

Your stomach is more even? I would like to hear more....your description of smuggling a grapefruit in your pants made me laugh as that JUST SO describes how I feel! Did they have to cut you open again to do the hernia repair and revision? Or did they go in through the stoma to fix hernia?

Sorry...I know my questions are not helping your original post.....anyway Hollister does a convex flange that may help, have you tried it? The number is 14804 I think and if your nurse calls or you, they should send a sample. I use it with the adapt barrier rings number 7805...rarely have a leak....hope this might help...

Green Eyed Lady
Jul 23, 2012 3:03 pm
Hi! I have an ileostomy where the output is mostly liquid. The barrier rings mentioned have really helped me from my flange leaking. My stoma has become somewhat flush with my skin, so it is hard to stop leaking when most products do not stick to the wetter areas of the stoma. I'm using a pre-cut, 2-piece system, where the flange is flexible yet convex to help stop the leaks. On top of this, I add barrier rings (instead of paste). They're a bit expensive...but well worth it! I'm able to swim and shower without weakening the flange, so I can wear it up to 6 days. I don't know if this will help you, and I know that everyone's stoma is different, so I can only hope this might work for you. I believe that a convex flange and barrier rings might just help you out. Good luck!
sooziq
Jul 21, 2015 9:06 pm

I know your post is 3 years old, but how do you swim without a pouch and barrier falling off? I used to swim a lot with an old appliance, a Marlen pouch, and a reusable faceplate. I have had an ileostomy since 1977. I had to switch to Coloplast Assura 2-piece and have not been in the pool since. I'm afraid it may fall off. I got an ileostomy from UC and changed the appliance 3 years ago due to weight gain and different rules with SS Medicare than when purchasing on your own! Plus, the Marlen reusable is kinda outdated and hard to find.

Thanks for any information.

Susie Fountain

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