This topic is about the challenges some people face with sex, pain, and self-image after having a permanent ileostomy. A woman who has lived with a permanent ileostomy for 20 years shares her experiences and struggles, hoping to connect with others who might feel the same way. Here are some of the key points and advice shared:

1. She experiences ongoing pelvic and abdominal pain despite medical checks and treatments.
2. She has a history of perianal pain due to Crohn’s disease or ulcerative colitis and a previous surgery.
3. There is a fear of an appliance accident during intimacy, as she once had a pouch clip open during intercourse.
4. She misses the pre-ostomy "bathroom break" excuses that used to interrupt intimacy.
5. She struggles with self-image, feeling "ugly and damaged," even though her husband is supportive and reassuring.

She is curious if others with ostomies feel similarly and seeks advice on overcoming these challenges. Here are some helpful insights and advice shared by others:

- **Preparation and Securement**
- Empty and clean the pouch before intimacy.
- Consider using crotchless underwear or strapless elastic halter-style waistbands to keep the pouch flat, hidden, and stable. Often, partners do not notice it.

- **Positioning and Alternatives**
- Try different positions that avoid putting pressure on the appliance; many find being on top works well.
- Remember that intimacy can include touching, holding, and oral or manual stimulation—penetrative sex is not the only option.

- **Mind-set and Communication**
- Intimacy is about love; partners usually focus on each other, not the stoma.
- Look into your partner’s eyes and accept their perception of you; letting self-doubt take over can be more damaging than the appliance itself.
- Share all stoma-related information with your partner; openness can reduce anxiety for both of you.

- **Pain and Medical Follow-up**
- Chronic pain and low libido might be linked to medications or hormone levels; continue working with doctors to address these issues.

- **Self-image Reinforcement**
- Remember that you have survived major illness and surgery; celebrate your resilience rather than focusing on perceived flaws.
- Stay positive—life is too short to worry about what others think.