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Doctor recommends PEG for treating Esophageal dysmotility
I’ve been struggling with eating for 9 months or so, and have lost a lot of weight and become very weak. When these symptoms started, I had to wait more than 6 months for a GI doc appointment despite being an existing patient. Finally saw her yesterday and am concerned about her recommendation for a PEG tube to stop the weight loss and build my strength. My symptoms are the following: inability to swallow due to even tiny amounts of food lodging in my throat, severe nausea, vomiting, pain in the center of my chest, abdominal cramps, constipation. It’s like I can feel every phase of the food’s journey through my system, and every step is painful. I’m miserable as a result. But I’m scared to death of the PEG. Has anyone had a PEG? What’s your experience been like? What about alternative ways of eating instead? Like a completely liquid diet?
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I'm sorry. I don't know anything about PEG, but as for the alternate liquid diet, I would suggest you run it by your GI? Maybe drinking Ensure, or similar drinks? Good luck!
P
Thanks for your feedback. I’m doing a couple of Ensures per day in addition to soup, yogurt and other soft foods. Can sometimes gag down a little meat. Anything I eat is very tiny amounts as I get full at the first bite or two. I can eat only 1/8 to 1/4 cup of anything at a sitting. I’m losing about a pound a week. At 5’6” and 113 I can’t afford to lose much more. The PEG feeding tube is being recommended as a means of stopping that loss. I know little about it. Just what I’ve read online over the last few days. Would love to know what anyone’s personal experience has been with tube feeding. I fear giving up any freedom I have, or the ability to travel even short distances due to a need to hook up to the system frequently to get nutrition. Is it possible to have a decent quality of life with a tube? If not, I would choose to just slowly die of starvation as I am now and try to enjoy whatever time I have left.
@inali
I had a gastric feeding tube placed after complications from gastric bypass surgery in 2014. I had it for a little over a year.
There are different types of gastric feeding tube systems. My stomach was divided from the surgery into a pouch .. my now stomach .. and remnant stomach. The feeding tube was placed in the remnant. I was placed on continuous feeding. After 10 months of continuous I started to reduce the feeding as I was able to eat more by mouth .. so I had free time off the feeding. I will add a photo of me with it and one of inside the bag.
Yes, I went to stores sometimes and to doctor appointments. It was awkward toting the bag around. No one stared at me or whispered that I could tell. I am the kind of person it would not bother me anyway. No one asked me questions except my doctors.
I am blessed to have a loving husband that helped me with my medications and preparing my food.
With syringe feedings there is no bag holding the food. So works differently. Both have the can nutrition and you will need water .. my bag system fed me the water, but after receiving meds directly in the tube it needs flushing as does with the syringe method.
Quality of life .. is in the eyes of the person going through it. Everyone is different. It is all in how you choose to look at it. I chose to do the best I could with the life put before me.
You don’t say why you have the esophageal constriction and I wonder what type of GI doc you saw? There are GI docs who sub specialize in the esophagus only and found usually at major teaching medical centers. I believe due to your weight loss your doc wants to reverse your failure to thrive and weight loss. If you haven’t yet tried a nasogastric tube for feeding it’s an option. The tubes are relatively thin and can be inserted and removed by you as feeding is needed vs. surgery for a PEG. Hopefully what ever you decide on it will be temporary.