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41,453 members
Apr 24, 2017

Seeking fellow urostomates to discuss challenges and victories

This topic is about connecting with fellow urostomates to share experiences, challenges, and victories. The originator, who has been living with a urostomy for a long time, is reaching out to others who also "pee in a bag" to exchange stories and advice. Here are some helpful insights and tips shared by the community:

- **Travel Routine**: Before boarding a flight, it's a good idea to empty your pouch. During the flight, try to empty it again before it gets more than half-full. On very long flights, you might consider drinking a little less to manage the pouch better.

- **Activity Level**: Many have found that returning to activities like biking, swimming, racquet sports, and scuba diving about two months after surgery can be beneficial. Starting gradually helps both physically and mentally.

- **Packing Tip**: Always keep several complete wafer/pouch sets and a night drainage bag in your carry-on luggage. This is crucial because checked bags can sometimes be delayed for days.

- **At Home**: Some use a bucket under the night drainage bag as a precaution, even if leaks haven't happened yet.

- **Making a Leak-Proof Night Drainage System**:
1. Use a green rubber cap from a Bard Dispoz-a-Bag leg bag to seal the Bard night bag drain spout. This prevents spills if the spring clip opens.
2. Remove the night bag’s conical sampling port and insert the white connector from a Hollister urostomy pouch. Lubricate the parts by "huffing" on them and push together for a tight fit.
3. For daytime storage, snap the closed valve piece from any spare Hollister pouch onto the night bag outlet to keep air, odor, and insects out.

- **Extra Spill Protection**: Stand the night bag in a bucket and clip the hangers over the rim. If a leak occurs, only the bucket needs emptying, protecting your carpets.

- **Carry-On Supplies When Flying**: Pack all your ostomy gear for the entire trip in a medium-sized camera case or similar carry-on to avoid being without equipment due to baggage delays.

- **Managing Fluids During Flights**: Empty your pouch before boarding and keep an eye on its level. Some reduce fluid intake on long flights, while others maintain normal hydration since airplane toilets are available.

- **Overnight Options**:
1. With experience, some can sleep without a night bag, using a plastic mattress sheet and relying on their ability to sense when the pouch needs emptying.
2. Others continue using a night bag, especially if they produce a lot of urine at night or are light sleepers.

- **Heat and Pouch Wear Time**: High temperatures can reduce wear time. One member finds the Convatec two-piece system reliable in extreme heat but changes it more frequently.

- **Exercise and Lifting**: Many resumed activities like walking, swimming, running, and scuba diving within months of surgery. Surgeons may recommend limiting lifts to under 10 pounds. Using abdominal support belts and gradual strength training can help maintain fitness and protect against hernias.
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