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May 22, 2016

Ehlers-Danlos Concerns with Stoma Surgery After RNY Bypass

This topic is about someone who is preparing for stoma surgery and is dealing with some unique challenges due to having Ehlers-Danlos Syndrome (EDS) type 3 and a previous RNY gastric bypass. Ehlers-Danlos Syndrome affects collagen, making the skin and tissues very fragile, which complicates the use of standard ostomy products. Here are some helpful insights and advice for managing these challenges:

- The person is concerned about the potential damage from standard ostomy wafers due to their fragile skin. They are looking for adhesive-free options and ways to protect their skin.

- Fragrances are a problem as they can trigger asthma attacks, so they are seeking unscented or essential-oil alternatives for odor control.

- They are interested in connecting with others who have EDS or have undergone RNY bypass for shared experiences and advice.

- They are curious about testing skin tolerance before surgery to find suitable products.

Additional questions and information include:

1. They want to know if deodorants or perfumes are necessary inside the pouch and if unscented or essential-oil alternatives are acceptable.

2. They currently can only use Coban wrap and paper tape on their skin.

Advice and insights offered include:

1. Colostomy irrigation: After about six weeks, many people with a colostomy can irrigate once a day, which might allow them to go without a pouch or use just a stoma cap, reducing the need for adhesive wafers.

2. Non-adhesive pouching experiments:
- Some have created holders that gently press the flange to the abdomen using an adjustable ostomy belt, avoiding adhesives.
- Soft, non-slip rubber sheets can be cut to the shape of a wafer. These cling to the skin without glue but may not be secure for active movements.

3. Adhesive removal and skin protection if wafers are necessary:
- Medical adhesive-remover wipes or sprays can dissolve the glue, allowing wafers to be removed with minimal skin damage.
- An example is SALTS Healthcare “Wipeaway” adhesive-remover spray, though it is mint-scented.

4. Odor management without perfume:
- Many people do not use commercial deodorant drops; it is optional.
- Scent-free options include a few drops of essential oil, small breath mints inside the pouch, or other home solutions found in the forum’s “Tips From Ostomates” section.

5. Information resources:
- For Ehlers-Danlos basics and community support, visit ednf.org.
- The forum’s “Premium Content ➔ Tips From Ostomates” section offers additional ideas for odor control and skin care.
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