Dysphagia, or difficulty swallowing, is a common condition among stroke survivors, often requiring the use of a percutaneous endoscopic gastrostomy (PEG) tube for nutrition. When my mother first received her PEG tube, it was a moment of mixed emotions. First, I had to make the decision for my mother to have the surgery for the PEG tube. It was a life-altering procedure, but she needed the nutrients, and doctors were blunt about the fact that she would not survive without it. There was so much fear and uncertainty with every decision I made about what the future would hold. Learning to help my mother adjust to her PEG tube took several months.
Why the PEG Tube Was Necessary After a Stroke
A severe stroke can impact the brain’s ability to control swallowing muscles, increasing the risk of aspiration pneumonia (Suiter & Leder, 2008). A PEG tube bypasses the mouth and esophagus, delivering food directly to the stomach, ensuring that stroke survivors receive essential calories and hydration without the risk of choking (Ojo et al., 2019).
Adjusting to PEG Tube Feeding
Learning how to manage a PEG tube is overwhelming at first. The daily routine of preparing liquid meals, ensuring proper hygiene, making sure equipment was ordered, and preventing tube blockages takes time and practice. Some key lessons I learned during this stage included:
- Hydration Is Crucial – Dehydration can be a serious issue for PEG tube patients. We made sure to flush my mother’s tube with the doctor’s recommended amount of room-temperature water before and after feedings. We had to double-check the amount of water we were giving my mother to ensure she would not become dehydrated. Temperature was important as well—if the water was too cold, it could shock her system, and if it was too hot, it could burn her (Metheny et al., 2012).
- Matching Meals to the Individual – We had to ensure that every meal was packed with essential vitamins, proteins, and fats to support her recovery and maintain body weight. My mother had pre-existing bowel issues, so we made sure the meal supplements accommodated this.
- Commercially Prepared Liquid Formulas – Brands like Ensure Enlive, Jevity, and Boost provide balanced nutrition, often recommended by doctors and dietitians (American Society for Parenteral and Enteral Nutrition, 2021).
Common Challenges & How to Overcome Them
- Tube Clogs – Prevent blockages by flushing with water before and after each feeding and after medication. Make sure medication is crushed into a very fine powder before pushing it through the tube, and double-check with a medical professional that the prescribed medication is not time-released. Contact a nurse if clogging cannot be fixed, and never try to use excessive force, as it can cause damage or issues (Metheny & Meert, 2004).
- Digestive Issues – If diarrhea or constipation occurs, adjusting fiber intake and staying hydrated can help. Probiotics and prebiotics may also aid digestion and improve gut health (Bested et al., 2013).
- Emotional Struggles – Eating is a social and emotional experience. Finding ways to make mealtime engaging, like sitting together or playing music, can help.
A Step Toward Recovery
While the PEG tube stage was challenging, it was also a crucial step in my mother’s healing process. This period gave her body the nutrition it needed while her swallowing muscles recovered. We celebrated small victories—the light in her face when she swallowed that first bit of food was encouraging, validating, and exciting. After months of no food or drink, I know her mouth was parched, and that taste of food was divine.
This stage of dysphagia care requires patience, education, and support, but it is not the end—it is just the beginning of the journey toward eating again.
Next Steps: Transitioning to Thickened Liquids
In the next post, I’ll share how we moved from PEG tube feeding to thickened liquids, the challenges we faced, and tips for making this transition smoother.
If you’re a caregiver navigating PEG tube feeding, know that you’re not alone. Have you experienced this stage with your loved one? Share your thoughts and experiences in the comments below!
References
- American Society for Parenteral and Enteral Nutrition (2021). “Enteral Nutrition Overview.” ASPEN
- Bested, A. C., Logan, A. C., & Selhub, E. M. (2013). “Intestinal microbiota, probiotics and mental health: from Metchnikoff to modern advances: Part I – autointoxication revisited.” Gut Pathogens, 5(1), 5.
- Metheny, N. A., & Meert, K. L. (2004). “Monitoring feeding tube placement.” Nutrition in Clinical Practice, 19(5), 487-495.
- Metheny, N. A., Stewart, B. J., Smith, L., Yan, H., & Diebold, M. (2012). “Factors associated with tube placement errors.” Nutrition in Clinical Practice, 27(6), 738-745.
- Ojo, O., Keaveney, E., Wang, X. H., & Feng, P. (2019). “The effect of enteral tube feeding on patients’ health outcomes: A systematic review.” Nutrition Reviews, 77(8), 549-573.
- Suiter, D. M., & Leder, S. B. (2008). “Clinical utility of the 3-ounce water swallow test.” Dysphagia, 23(3), 244-250.
Beyond Stroke Survival 
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