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May 15, 2012

Life as a Wheelchair User: Seeking Connection and Sharing Experiences

This topic is about someone who is living with a colostomy, uses a wheelchair, and is dependent on a Supra Pubic Catheter (SPC). They are looking for companionship and practical tips to make life a bit easier. Here are some insights and advice shared by others:

- The person is wheelchair-dependent and has a routine of going to bed early and waking up in the early hours of the morning. A Disability Support Worker helps with daily care, including preparing coffee and changing the bed if there are any leaks from the SPC.

- The colostomy pouch needs to be changed every 48 hours to prevent blockages. The stoma, affectionately called "Bubbles," is usually quiet but can sometimes become very active.

- Due to limited mobility, daily bowel stimulation is crucial. The routine includes taking Movicol twice a day, along with lactulose syrup and pear-juice concentrate.

- There is a desire to meet others in similar situations to share experiences, enjoy activities like going to the cinema, and find companionship, either in Melbourne or online.

- The person uses a 24-hour clock, a habit from time spent in a convent. They have a nickname, "Schnecke," which means "snail" in German, reflecting their slow mobility. Having lived in Australia for 42 years, they consider themselves a true Aussie.

- They have lost function in their right hand, making one-handed pouch changes challenging but manageable. Colostomy irrigation might not be possible without professional help.

- The current routine with laxatives is working reasonably well, with typical output every second or third night. However, there is concern about typing accuracy due to hand limitations.

Here are some pieces of advice and insights from others:

1. Some members suggested trying colostomy irrigation to reduce the frequency of pouch changes and gain more control, though professional assistance might be necessary.

2. Experimenting with different ostomy appliances or brands could help better manage high-volume output.

3. A practical tip for winter is to keep indoor heating on and dress warmly to combat cold Melbourne mornings. Sunshine can also help improve mood.

4. Emotional support is important, and members offered humor, empathy, and invitations to stay connected online, highlighting the importance of companionship.
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