This topic is about someone who recently had an emergency loop ileostomy after a failed J-pouch and is finding it challenging to adjust to life with a stoma. They are experiencing frequent leaks, high output, sleepless nights, and concerns about their lifestyle. Here are some helpful tips and insights shared by others who have been through similar experiences:
1. Sample and Choose the Right System
- Reach out to companies like Coloplast, Hollister, and Convatec for free samples, especially convex barriers.
- Consider products like the Coloplast SenSura Mio 2-piece Adhesive Coupling system or the Convatec 2-piece convex flange.
- Two-piece systems can make it easier to check the stoma and fix leaks without removing the entire flange.
2. Leak Prevention and Pouch Change Routine
- A convex barrier can help prevent leaks on flat abdomens.
- Use pure soap like Dial and avoid soaps with moisturizers.
- Change your pouch first thing in the morning when the stoma is less active.
- Follow a routine: remove the old wafer with an adhesive-remover wipe, wash well, keep the skin dry, warm the barrier to body temperature, apply paste around the opening, press firmly, and finish with durable tape for extra security.
- Always close the pouch tail and empty it when it's one-third full.
3. Dealing with Ballooning and Gas
- Attach an OSTO-EZ-VENT to the pouch to vent gas during the night.
- Consider reducing carbs or taking anti-motility medicine like Imodium to manage output and gas.
4. Diet and Output Control
- Follow a low-residue diet while your gut adapts, which may take 6-12 months. Include foods like applesauce, chicken, pasta, rice, and well-cooked vegetables.
- Stay hydrated and consider electrolyte drinks if needed.
- Some strategies include stopping eating after 3-4 p.m., eating a larger breakfast, and having a few marshmallows before bed to thicken output.
5. Better Sleep
- Combine an earlier last meal, marshmallows or Imodium at night, and pouch venting to reduce nighttime emptying.
6. Clothing and Comfort
- Most pre-surgery clothes can still be worn; initially, choose loose or high-waisted items.
- Leggings, yoga pants, dresses, and skirts can provide comfort and support without squeezing the pouch.
7. Going Out, Travel, and Exercise
- Start the day with a fresh pouch/flange and carry a spare pouch, tape, and extra underwear.
- Check and empty the pouch frequently.
- Once leaks are under control, regular travel and activities are possible.
8. Skin Care Preferences
- Some people prefer using adhesive remover, while others skip it.
- One method is to use no soap around the stoma, just hot water followed by cold, then a skin-prep wipe, stomahesive powder, convex flange, and paste under the opening.
9. Mind-set
- Progress involves trial and error, and most issues can be resolved with improved products.
- Try to view the ostomy as something that enables you to live rather than limits you. Reach out for support, ask questions, and be patient with the learning process.
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