Practical Guide 3: My Appendicostomy (MACE) Strategy: Trial, Error, and Finding Balance

Important Medical Disclaimer:

The following content is based solely on my personal experience and is shared for informational purposes only. I am not a medical professional. Everybody is unique, and what works for me may not be suitable for everyone. Please consult with your doctor or specialized nurse before making any changes to your irrigation routine or medical care.

​Introduction

​I want to share my personal routine and the lessons I’ve learned through trial and error. My primary diagnosis is incontinence and chronic constipation. I hope these observations serve as helpful ideas, but please discuss them with your healthcare provider first, as every situation and diagnosis is different.

1. ​ The Routine: Timing and Equipment

​Morning Preference: I perform my irrigation every single morning. While some prefer evenings, I choose early mornings so I don’t have to plan my social life around the procedure. It’s become my “me-time” with a cup of coffee.

​The Setup: I use the standard bag and flush system provided by the hospital where I had my surgery.

​The Solution: I typically use 500ml of water at approximately 38°C (body temperature) with medium pressure.

2. ​Fine-tuning the Solution (The “Formula”)

​Preventing Water Absorption: When using only water, my body sometimes absorbs it, leaving solid waste behind. To counter this, I add a pinch of salt to the solution.

​Macrogol 4000: Once a week, I add a small amount of Macrogol 4000 (about 15-20% of a standard oral dose) directly into the water. It softens the waste without causing aggressive bowel movements.

​The Glycerin Lesson: I tried adding glycerin, but it was too aggressive for me—it caused painful spasms and leakage hours after the procedure.

3. ​The Procedure and Post-Care

​Duration: The whole process takes 30–40 minutes (the last 10 are just to be safe).

​Preventing Backflow: I always close the stopper on the flush as soon as the water is in to prevent backflow. I remove the tube with firm pressure only after all water has drained.

​Skin Care: I clean the site with gauze and saline. To manage daily secretions without irritating the skin with large bandages, I use a makeup cotton pad cut in half, tucked behind the button.

​Clothing: I prefer high-waisted pants that sit above the button to avoid constant rubbing or snagging.

4. ​Diet: The Internal Engine

​Fiber and Hydration: I start every day with well-soaked cereal and milk. Fiber is crucial, but it requires massive amounts of water to move; otherwise, it can create a blockage.

​Thirst Management: I struggle with feeling thirsty, so I have to force myself to drink. I also take a daily probiotic.

​The “No-Go” List: Beans, nuts, and spicy food (learned the hard way).

​The “Glue” Factor: I love bread and pastries, but I try to limit them as they act like “glue” in the intestines. I stick to home-cooked meals whenever possible.

5. ​Managing a Crisis (What NOT to do)

​I once experienced a 3-4 day blockage with severe spasms. In a panic to fix it quickly for work, I tried a desperate strategy:

​The Good Idea: I took a double dose of oral Macrogol the night before. This helped soften the “plug.”

​The Bad Idea: The next day, I performed three consecutive 400ml irrigations.

​The Result: It broke the blockage and avoided an “accident” at work, but it irritated my intestines so badly that I had “empty” spasms for two weeks. I survived on water for days and needed heavy doses of antispasmodics and magnesium.

​The Better Way: If you are blocked, stay home for a day. Use a single glycerin flush instead of forcing multiple water irrigations.

6. ​Travel and Troubleshooting

​Travel Tip: Always carry a “go-bag” with all supplies and include a self-adhesive wall hook for hanging your irrigation bag in hotel bathrooms.

​Understanding Pain: * Sharp pain at the stoma site: Usually means solid particles are near the opening.

​Spasms after the procedure: Often means the water bypassed the waste instead of pushing it out.

​Success Sign: I know it’s a successful session when my stomach feels “flat” and starts gurgling at the first sip of water afterward!

​I would love to hear your “tricks.” What has been your best (or worst) experience with management? Please share your tips in the comments—I’d love to compile more of your ideas into a second article on this topic. Let’s make our daily lives a little easier together.

 You can read my story here: The Journey