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Jul 25, 2014

Seeking advice on intimacy with ileostomy - overcoming limitations

This topic is about managing intimacy concerns, controlling odor, and building confidence for someone living with a long-term ileostomy. The person sharing their experience has been living with an ileostomy for seven years and is looking for advice on how to handle these challenges, especially in the context of dating and intimacy.

Here are some helpful insights and advice:

1. **Odor and Leak Prevention**
- Persistent odor might indicate a micro-leak or a worn-out pouch. Odors are not normal if the seal is intact.
- Consider reducing the wear-time of your pouch, as 6–8 days might exceed its design limits and lead to odor.
- Rinse the pouch after every emptying by keeping a squeeze bottle of water in the bathroom for a final flush.
- Try using liquid deodorizers like M9 Drops or similar products by placing several drops in the pouch after each emptying.
- Deodorant lubricating gels, tablets, and charcoal pouch filters can also help if they suit your output.
- A pouch cover, cloth cummerbund, or ostomy waistband can conceal the clear bag and absorb any minor odor.

2. **Supply and Cost Tips**
- Contact manufacturers for free samples of closed-end or opaque pouches, filters, lubricants, paste, and seals.
- Check if your region offers subsidies for supplies through health ministries or ostomy associations.
- Suppliers often have less-expensive opaque pouches; trying different brands may help you shorten wear-time without increasing costs.
- Consult with an ET/WOC nurse to ensure the correct flange size and explore different pouch options.

3. **Clothing and Appearance**
- For men, wearing dark or patterned shirts during intimate moments, using pouch covers, or a stretchy waistband can keep the appliance hidden and secure.
- Loose boxer shorts, pleated trousers, or jeans worn slightly low can avoid pressure on the stoma.
- Women have found that strategic lingerie or camisoles can completely hide a pouch, and similar garments exist for men.

4. **Sex and Disclosure Strategies**
- Plan ahead for intimate encounters by emptying and rinsing the pouch, applying fresh deodorizer, and using a secure support garment.
- Many partners are accepting when approached with confidence and honesty. You might say, “I had lifesaving surgery that left me with an ostomy; it’s managed and won’t affect you.”
- Consider mentioning the ostomy before clothes come off, when mutual trust has begun to build.
- Dating another ostomate can remove the need for explanations, and specialty dating sites and forums can help with this.
- Remember that rejection can happen for many reasons, and the ostomy is just one aspect.

5. **Psychological and Lifestyle Boosters**
- Engage in activities that boost self-esteem, like buying new clothes, starting new projects, online dating, or volunteering.
- Use forums for venting and sharing experiences, as candid discussions can normalize concerns.
- Take small, continuous steps like short outings, meeting new people, and practicing disclosure wording to build confidence over time.

These insights aim to help manage the practical and emotional aspects of living with an ileostomy, especially when it comes to intimacy and dating.
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