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41,407 members
Nov 04, 2025

Newbie Alert… Simon, an anti-help group dude seeking a help group lol

This topic is about adjusting to life after unexpectedly waking up from a coma with an ileostomy and other medical challenges. The person sharing their story is navigating a new reality with the help of family and an online community. Here are some insights and advice from their experience:

1. After spending six months bedridden, they moved to assisted living and eventually convinced their medical team to let them return home. Now, they use a wheelchair, stair-lift, and mobility scooter instead of a car.

2. Daily life involves learning how to bathe, walk, eat, and manage dietary choices, as well as dealing with intimacy and body-image concerns.

3. A strong family network has been crucial, and discovering an online support community has provided reassurance, information, and humor.

4. They aim to share experiences and support others who are on a similar journey.

5. They have successfully managed two consecutive pouch changes lasting over 12 hours and are working on increasing wear-time.

6. Recently switched from Gabapentin to Pregabalin, which causes severe drowsiness, especially after evening meals.

7. The primary goal is to regain the ability to walk independently, with progress described as "slowly winning more than losing."

8. They continue to deal with tracheostomy-related trauma and nighttime flashbacks.

9. Considering future volunteering opportunities, such as with the Samaritans, once further recovered.

Advice and insights from the community include:

- You're not alone; many people avoided support groups until finding this online community, where shared experiences and humor can be a lifeline.

- Progress can be slow, so celebrate small victories like taking an unaided shower or climbing stairs to stay motivated.

- Free 8-week Zoom exercise programs from Colostomy UK, such as Somatic Chair Yoga and Mat Yoga, have been praised for improving mobility, flexibility, and PTSD symptoms.

- The Facebook page "Moving Mountains" can inspire a positive mindset shift, even if it's just a small change.

- Others have regained walking abilities within months to a year through rehab and persistence, and have returned to moderate chores and hobbies.

- Mental resilience is key: acknowledge grief, set small goals, and lean on fellow ostomates who understand the journey.

- When switching medications, drowsiness is common. It's important to adjust slowly under medical supervision and plan demanding tasks before evening doses.

- Humor, community, and a commitment to supporting each other are essential tools for recovery.
See full discusison
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