Matthew did very well on the Poopinator for a time. Then slowly it stopped working and he began backing up again. We had to put him back on Miralax, added Lactulose, Senna Plus, Enemeez and eventually the Peristeen pump. Each addition brought some relief for a time but then stopped working. He ended up back in the hospital for yet another clean out in October and to complete some much needed testing. After a Sitz Marker Study, we came to the conclusion that there was no specific areas of colonic inertia . His infectious Disease doctor highly suspects the backing up of his bowels was the cause of the g-tube stoma infection and the GI doctors are suggesting an Apendicostomy.
So here we are caught between a rock and a hard place. Matt eats most of his blends by mouth but gets meds, extra water, the Poopinator and an overnight feeding of green smoothie. Because of issues with his immune system, having an Appendicostomy done most likely would increase his chances of infection. On the other hand, after 16 years of major GI issues, I can’t see how I could maintain his nutrition and medication regimen without the g-tube.
So now I am on a mission. Delay or completely avoid another surgery. He has been drinking a blend throughout the day that contains hemp milk and it seem to bring him some relief. Then it came to me: Why not give him a straight shot of it with The Poopinator? It might have a better effect that way.
- 4oz of the original recipe or any combination of the foods listed in The Poopinator
- 1oz of hemp milk
Directions: Mix well. Warm the mixture and give as a bolus at the fastest rate that is tolerated. Flush with at least 10cc of water. If the volume is too high, reduce the solids before reducing the hemp milk until a tolerable volume is reached.
Please remember this: Medication and/or surgical intervention is not a failure on your part (somehow I think I’m talking to myself here). The goal is to do whatever it takes to give our loved one(s) the best quality of life possible. Blended whole foods is by far the best choice over formulas but sometimes it’s just not enough. Hang in there and don’t quit!
Coconut Chia Seed Pudding
One thing about fresh coconut milk: It only lasts about 4-5 days in the refrigerator. So once you make it , you will want to get the most out of your fresh batch before you have to freeze what’s left. Since I already have the chia seeds out when I’m making Matt’s oatmeal, I always make some chia seed pudding. This is one of my favorite snacks and it’s easy to make.
- 2 Tablespoons of Chia seeds
- 1/2-2/3 cup of fresh coconut milk
Put the Chia seeds in a small mason jar. Add the coconut milk and stir until they begin to absorb enough of the milk to be suspended. Cover and refrigerate for 1 hour. The Chia seed pudding is good for about 4 days but, I guarantee that it won’t last that long. Enjoy! Makes 2 servings.
Food Tip: This snack is high in protein but also high in fat. Eat it sparingly especially if you are making your own coconut milk.
Time Tip: Freeze the coconut meat in 6oz portions. When it’s time to make your milk just defrost and blend.
Money Tip: Coconuts are not that expensive. They tend to run about $2 but the price drops around Thanksgiving and Christmas.
One of the objections health professionals have for not using home blended meals is food-born illnesses. Though they are justifiably concerned, it need not be a road block to good nutrition. Individuals who must or choose to use a feeding pump don’t have to be excluded from enjoying the benefits of a whole food blenderized diet. Where there is a will, there’s a way.
Take this scenario, for instance. You have to go to work or school and you choose to bring your lunch. Do you get to your lunch break and toss your nutritious lunch in the trash? No? Why not? Because it’s been in your lunch box with an ice pack all morning, you say? Exactly! We don’t think twice about for those that eat orally. So, when I was faced with the same issues, here’s what I came up with:
- Find a lunch box that will fit your feeding bag.
- Cut a whole in the top of it to thread the loop through so that you can hang it on the IV pole.
- Cut a whole in left side to allow the tube to exit and connect to the pump.
- Add Bag filled with the feeding and ice packs front and back.
- Zip up the lunch box and start you feed.
It is best to start with a cold blend if you can. That way the food stays fresher longer. Depending on how long the feeding runs, you may need to replace your ice packs.
If your pump came with a mini backpack, you may use it but I had a hard time fitting ice packs in with the feeding bag. If anyone reading this has figured it out, feel free to add your idea to my comment section. If you need something more portable, you can get a regular backpack that has sections to hold the lunch box and the pump so the tubing doesn’t get kinked. Nowadays they usually have an opening for headphone wire. If not, adapt it yourself.
At first I was afraid to do this thinking the blend would upset Matt’s stomach because it was too cold. Then I realized that, by the time the food got to the extension tube, it was room temperature. Besides, we eat cold food all the time without even a thought. He as not had any issues. As with anything you do with your tubie, when you try something new, watch them closely. Look for signs of discomfort and stop the feed if there are any.
I hope, pray and dream of the day when manufacturers of feeding pumps get on board with those of us who choose food over formula.