I would be annoyed; I have issues with my surgeon too. It's like they don't want to fix what's broken since they did the original surgery.
kylees0480
Jul 27, 2025 3:58 pm
walter.sharpless
Jul 27, 2025 4:02 pm
Hi Ashtonilleo,
We're in a similar situation with my wife's ileostomy. We're using Hollister products mostly, and next month we'll have two years in fighting this battle. The reasons why they can't "redo" my wife's would put you to sleep. Here's what we have learned at the school of hard knocks:
- Convex barrier ring, cut to fit as closely to the shape of the stoma as possible. If yours is deeper, you can stack these barrier rings. The goal is to get as close to the stoma, both in depth and shape, as possible. Some of what I call bases (the square thing that the bag attaches to) have convexity built in.
- Use extenders; we use a Y shape on the outside of her abdomen and a C shape on the inside. This will help, but not stop, your movement from unsealing the edges of the base.
- Use the crusting technique you were hopefully taught at the beginning: powder and barrier spray, to protect the skin around the stoma.
- Hollister, Coloplast, and Convatec are all very generous with samples and support. You can make an appointment with an ostomy nurse and email her (or him) pictures of your stoma to get good advice on what you might try. I was on the phone this week with the one from Hollister for an hour and a half.
I didn't mean to "101" you here. You likely know or have tried much of what I'm suggesting, so my apologies if I'm covering old ground with you. It has taken us far more experimentation than I would have imagined to get this beast tamed (still not fully). I wish you the very best with yours, and this community is SUPER helpful, understanding, and kind. You'll get lots of great advice and encouragement here. GOOD LUCK!
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
Maried
Jul 27, 2025 5:39 pm
Make sure you tell your new surgeon or anyone that will listen. This is causing you great pain and great mental distress.
Many in the medical profession do not react to things they see as inconvenient.
But mental or physical pain seems to get action.
Try to find a surgeon who is experienced and compassionate in this type of surgery. Do not use the same one if possible.
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infinitycastle52777
Jul 27, 2025 7:06 pm
I don't blame you for feeling frustrated. I think I would too. They should know better than to put your new stoma so close to the site of the old one. Even my doctor made sure that wasn't the case for me. You need a new doctor, one that knows what they are doing. Then address the issues. You might have to have your stoma on the left side instead of the right side to get away from old scars. It might be hard for you at first to adjust to, but if it stops the leaks, it could be worth it.
Words of Encouragement from Ostomy Advocates I Hollister
TerryLT
Jul 27, 2025 8:56 pm
Hi Bluejay, What reason did your surgeon give you for saying your situation could not be fixed? I would be looking for a second opinion. It's not acceptable to have to live with a flush stoma that is not manageable.
Terry
Bluejay
Jul 28, 2025 5:07 am
There was no reason. And it doesn't matter about a second opinion. All doctors protect each other. I was with this girl who had breast cancer, and the doctor told her she had to have it removed. I told her to get a second opinion, and when she did, the second doctor told her to go back to the old one. He wouldn't even look at her.
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TerryLT
Jul 28, 2025 8:01 pm
I am sorry you feel that way about doctors. I don't agree with you, as I've had very positive experiences (and some not so great), and I have a lot of respect for my surgeon. You've obviously had a bad experience, and it's colored your opinion of all doctors. What a shame. We do need to advocate for ourselves, but if you aren't willing, things will stay as they are.
Terry
Mausia
Jul 28, 2025 9:00 pm
I have problems with high output also. I set an alarm every 2 hours so I can wake up and dump. I have had so many leaks that I never go anywhere without supplies and an extra outfit. My surgeon is making plans to refashion in late October. But a couple of major things I did that helped me greatly: I now use a high output bag with more of a plug on the bottom so it hooks into a nighttime bedside bag, like a Foley bag. Okay, cleaning out in the morning really sucks, but it's better than waking up with goobers all over me. I also started using a “Stealth Belt” ordered from Amazon. I now have like 4 of them. They hold the weight of your bag so it's not pulling at all. If you do leak, it catches a lot of the goobers. And last but not least, if I want to eat things that are questionable about stopping things up, I eat them no later than lunch; that way it has time to get through before going to bed, so dinner and nighttime snacks are only things I know will flow through okay.
Hope this gets better for you. You know, maybe go to the GI and tell him you need a new surgeon.
Debi
Pooter
Jul 28, 2025 10:27 pm
Make sure your surgeon knows to make your stoma stick out one and a quarter inches.
Mark B
Jul 28, 2025 11:00 pm
Dear ashtonilleo, in my experience, the ostomy bag makes a huge difference.
When I was in the hospital after getting an ileostomy, the hospital provided ostomy bags with a convex connection that kept the stoma from retracting, and the bags were extremely durable and virtually never leaked or failed.
Regards,
Mark
Not Now Kato
Jul 30, 2025 9:09 am
I'm in the U.K. I also had a retracted stoma and could never get a seal. My surgeon didn't hesitate to refashion it. Get onto your surgeon again, and if they still refuse, find another one. You shouldn't have to live like this.
Do you still see your stoma nurses?
If you do, get them on board. They will help you by writing to the surgeon.
Axl
Jul 30, 2025 12:29 pm
Yay .... Good for you, kiddo. What happened ...
Did you rip them a new one or go elsewhere??
Bluejay
Jul 30, 2025 1:20 pm
I went to my stoma nurses, and it was them who told me that my surgeon wouldn't do it. That was my thought: go to the stoma nurse and show them what I was talking about, and they would help me by talking to the surgeon. But they wouldn't.
ashtonilleo
Jul 30, 2025 1:47 pm
I just told them straight I told them mentally it's wrecking my head, and they wouldn't let an animal suffer that way, so why a human?