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Jul 16, 2015

Seeking advice on parastomal hernia repair and feeling lonely - Need someone to talk to

This topic is about dealing with a parastomal hernia that developed after ileostomy surgery. The person is trying to decide between surgical repair and managing the hernia conservatively, while also seeking emotional support due to feelings of loneliness. Here are some insights and advice shared by others:

1. Hernia support garments:
- Many people find relief using a hernia belt, with NuHope belts being frequently recommended. Other options include general ostomy/hernia belts and firm support underwear or body-shapers like Spanx, which can be found at stores like Walmart.
- Wearing these belts daily can help manage the bulge and might delay or even eliminate the need for surgery.
- Belts are also useful after surgery to protect the repair.

2. Conservative management tips:
- Gentle manual massage can help ease the intestine back inside and reduce discomfort.
- Be vigilant for signs like increasing pain, vomiting, or rapid enlargement, as these could indicate strangulation and require emergency care.
- Stay active within your comfort zone, eat healthily, and avoid heavy lifting or straining to prevent worsening the hernia.

3. When to consider surgery or seek opinions:
- It's advised to get a second or third opinion, especially from surgeons experienced in complex stoma work or at large medical centers like the Mayo Clinic.
- While there are risks such as a high recurrence rate and potential mortality, some have had successful outcomes with skilled surgical teams.
- Surgical techniques include laparoscopic repair, mesh reinforcement, and possibly relocating the stoma. Recovery can take several months with strict post-op care.

4. Personal experiences with repair:
- Positive experiences include resolving pain and sickness after repair, with improved quality of life and self-esteem.
- Negative experiences involve complications like hernia recurrence due to lack of mesh use, and some surgeons may be reluctant to re-operate after complications.

5. Reasons some choose to avoid surgery:
- If the hernia is manageable and not painful, some advise against surgery due to potential complications.
- Chronic conditions like diabetes or poor healing can make non-surgical management more appealing.

6. Emotional support strategies:
- Engaging in online forums, reaching out to fellow ostomates, and sharing experiences can help combat loneliness.
- Simple daily outings, maintaining interests, and helping others online can improve mood and reduce feelings of isolation.

7. Key take-away themes:
- It's important to balance the risks and benefits individually, as there is no one-size-fits-all answer.
- Quality, well-fitting support belts are essential for conservative care.
- Seek expert surgical opinions if symptoms worsen or strangulation is suspected.
- Emotional support is crucial, and many offer ongoing contact to help with this journey.
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