New Ostomy: Any help would be appreciated

Posted by zxyoma @zxyoma, Jul 15, 2020

I’m new to this site, and new to having an ostomy. My surgery was on May 10th, (Mother’s Day). I’m still experiencing lots of leakage no matter what I try. I found a support group not too far away, however they don’t meet again until September, I’d like to talk to someone before that. Any help would be appreciated.

Call your ostomy supplier. They can usually give advice. Also search on facebook. There are MANY active groups.

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May I ask you which kind of ostomy you have. Different things help with different kinds of ostomies. Don’t lose hope. This is a real learning curve as everyone has special needs.

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Ileostomy

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In reply to @ursamajor "Ileostomy" + (show)
@ursamajor

Thank you. My experience has been with my husband’s Urostomy. One thing they all have in common is the fact that the patient’s body (abdomen) keeps changing shape for a while after the surgery. Every few pounds gained or lost affects how the seal fits the body. Also, if the stoma protrudes then the discharge goes directly into the bag better than a stoma that is flush or even slightly below skin level. If it is recessed then a convex seal or wafer may do a better job. Hopefully someone with an iliostomy will reply and give you some help. Read back through old notes on the website. I know there have been some postings in the past.

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@zxyoma and @ursamajor, I'd like to add my welcome along with Katy's. I'd also like to invite other members who have had an ileostomy to joint the discussion, like @engelee @iamthekat @idino @msgtrebholtz

@ursamajor, what led to your needing an ileostomy?
@zxyoma, what type of ostomy do you have?

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@colleenyoung

@zxyoma and @ursamajor, I'd like to add my welcome along with Katy's. I'd also like to invite other members who have had an ileostomy to joint the discussion, like @engelee @iamthekat @idino @msgtrebholtz

@ursamajor, what led to your needing an ileostomy?
@zxyoma, what type of ostomy do you have?

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Had ileostomy due to jpouch failure!

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What kinds of products have you tried using? For example do you use a flat wafer or convex? Do you use a barrier ring or stoma paste? What kinds of products are you using on your skin? All of these can play a factor into how to handle leaking. You may be leaking due to where your stoma is located on your belly. Also how your stoma is positioned and whether or not it is flush with your skin.

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I HAVE A CHOLOSTOMY AND ALSO HAVE PROBLEMS AND COULD USE SOME SUGGESTIONS…..

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I HAVE CONSTANT DIARRHEA AND AM GETTING SO FRUSTRATED…..CAN ANYONE HELP?

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MY BAG FILLS UP SO QUICKLY I AM ALWAYS CHANGING IT….

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@allegro

I HAVE CONSTANT DIARRHEA AND AM GETTING SO FRUSTRATED…..CAN ANYONE HELP?

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Have you tried eating foods that can thicken your stool, such as applesauce, bananas or creamy peanut butter? This may help to slow down the diarrhea. If not, you may need to contact your physician to ensure you are not becoming dehydrated. What is the frustrating part? The constant loose stool or is there something else going on with you bag and pouch system?

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Have you tried using high output bags? These are larger bags meant for this kind of output.

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I have a colonoscopy, my surgery was in September so I am still in the learning process. My home care nurse determined a convex wafer would be best for me because my stoma is retracted and we tried a couple different ones. I still was experiencing leaks almost daily but at a visit to the ER due to bloody stool leaking, the on call doctor used Tincture of Benzoin to "glue" everything to my skin. My husband is the one who changes my appliance because I can't see to do it, due to the placement on my body. He first uses a crusting technique to protect my skin when it is reddened, and uses the tincture over that when dry. He also uses it on top of the seal before applying the wafer and bag. We don't use paste. This has been a world of difference for us. The tincture is most widely used before applying Steri-strips to a wound to help them adhere to the skin. Removing the residue from my skin is somewhat more laborious than it was before we started using the tincture, but it's worth it. We have gone from daily changes due to leaks, to being able to go 5 or 6 days between changes.

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@blinken

I have a colonoscopy, my surgery was in September so I am still in the learning process. My home care nurse determined a convex wafer would be best for me because my stoma is retracted and we tried a couple different ones. I still was experiencing leaks almost daily but at a visit to the ER due to bloody stool leaking, the on call doctor used Tincture of Benzoin to "glue" everything to my skin. My husband is the one who changes my appliance because I can't see to do it, due to the placement on my body. He first uses a crusting technique to protect my skin when it is reddened, and uses the tincture over that when dry. He also uses it on top of the seal before applying the wafer and bag. We don't use paste. This has been a world of difference for us. The tincture is most widely used before applying Steri-strips to a wound to help them adhere to the skin. Removing the residue from my skin is somewhat more laborious than it was before we started using the tincture, but it's worth it. We have gone from daily changes due to leaks, to being able to go 5 or 6 days between changes.

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Hi @blinken, I see this is your first post since joining. Welcome to Mayo Clinic Connect. Thank you for sharing your experience with the group. Going from every day to every fifth or sixth day is wonderful! Did one of the physicians suggest not using paste or was this a personal decision that just led to a better application of the wafer and bag?

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Not using the paste was my husband's preference. He does my appliance changes and found it much messier to apply and much less secure than the tincture. My home care nurses guided us from the start as to what products are available and demonstrated their various techniques. But it was only because an ER doctor used tincture of benzoin and supplied us with some packets to try at home that we found secure adhesion. My home care nurse had never heard of or thought of using that product in this application but she said she will definitely suggest it to other patients who might have adherence issues. You don't need to use very much and it can be a bit of a challenge to remove but it is worth the trouble.

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