Living with an ostomy involves adapting to a new way of managing bodily functions, and it can bring up many practical questions. Here are some insights and advice from people who have firsthand experience:
1. Best Time to Change a Pouch or Wafer
- Many people find it best to change their pouch every 3-4 days for an ileostomy or every 2 days for a urostomy, often after a morning shower or bath when the stoma is less active.
- Some change daily, while others with good adhesion can stretch it to 4 days. In some cases, people change only when the pouch is full.
- Factors like heat, sweating, heavy activity, stoma shape, and product compatibility can affect how long a pouch stays secure.
2. Emptying Methods and Frequency
- For an ileostomy, emptying is typically done 4-8 times a day, often whenever urinating to avoid the pouch becoming too heavy.
- For a colostomy or urostomy, it can range from hourly (if output is high) to once daily. Some use irrigation to replace pouches with stoma plugs.
- The process involves unfastening a clip or Velcro tail on the pouch, leaning over or sitting facing the toilet, draining, wiping the interior and outlet with tissue, and re-clipping.
- Some people rinse the pouch each time to help control odor.
3. Bowel Control
- Generally, there is no voluntary control over bowel output, especially with an ileostomy.
- Those with a colostomy who use irrigation can achieve more predictable empty periods.
4. Daily Limitations and Work-arounds
- Heavy lifting and contact sports are often avoided to reduce the risk of hernias or leaks.
- Sweating, hot weather, or water sports can loosen wafers, so frequent changes or waterproof supplies may be needed.
- Energy levels, strength, or stamina might be lower after surgery, and emotional adjustment and body-image issues are common.
- Clothing adjustments, like choosing waistbands above the pouch and avoiding tight jeans on the stoma, can help.
- Having access to a restroom is both a practical and psychological necessity.
5. Intimacy and Sex
- Most people report normal sexual activity, with success depending more on confidence and partner acceptance than on the appliance.
- Tips include emptying the pouch beforehand and using support garments or smaller "mini-pouches" if preferred.
- About 10% of men may experience erectile issues if the prostate was removed.
6. Pregnancy and Parenting
- Women with ostomies can conceive and carry pregnancies, with several examples of mothers with ileostomies or colostomies.
- Obstetric care should monitor pouch placement as the abdomen grows, and C-section scars near the stoma may complicate future deliveries.
7. Products and Set-ups
- Options include 1-piece drainable pouches with bottom clips, 2-piece moldable convex appliances, pouches with Velcro tail closures, sustainable (reusable) pouch systems, and irrigation equipment with stoma plugs.
8. General Tips for Healthcare Providers
- Each person's routine is unique, and trying different products is normal.
- It's important to listen closely to individual concerns, such as skin issues, seal longevity, and lifestyle, rather than applying a one-size-fits-all approach.
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