Navigating Tube Feeding Intolerance: Surprising Keys to Success

Hilarie standing with glass of blended food

When you’re told you or your loved one needs a feeding tube, it can feel confusing and overwhelming. It’s not what you anticipated, and if you have no prior tube feeding experience, it is hard to know what to expect. 

Suddenly there’s new equipment to learn, unfamiliar formula names, and more appointments to fit into your already busy schedule. Adjusting to this new way of receiving nutrition takes time, and many experience frustrations trying to find a well-tolerated plan.

Unfortunately, the typical solutions offered for tube feeding intolerance involve more medications, switching to different synthetic formulas, or slowing down the feeding speed by using a feeding pump. All of these adjustments make the plan feel more unmanageable and leave families feeling burnt out and tired.

If this situation sounds familiar, know that you’re not alone. Over the past 8 years working as a pediatric dietitian, I have encountered many families facing the same challenges as they navigate what I refer to as the spiral of tube feeding intolerance. 

It can be a daunting journey, filled with ups and downs, but there is hope. There are alternative approaches and surprising keys to success in managing tube feeding intolerance.

Whether you use formula, blended food, or a combination of both, this blog post aims to offer you valuable insights and strategies I’ve learned over the years, along with the wisdom and perspectives I’ve gained from the families along the way.

managing reflux with the consistency of your tube fed meals

woman standing at kitchen counter pouring blended food into bag

Did you know food consistency can play a significant role in managing reflux and vomiting?! This is something I learned a few years ago and completely changed the way I practiced. 

At the time I was working as a dietitian in a busy neurodevelopment clinic. Many families were burnt out trying to manage tube feeding intolerance and were looking for alternative solutions. One solution was switching to a blenderized diet, especially as more stories were shared on social media of people feeling better, getting off medications, and feeling a sense of normalcy when it comes to tube feeding.

As I helped more families transition to home-prepared meals or commercial blenderized products, we encountered challenges. The thicker consistency of the food did not work well with existing tube feeding equipment, so we resorted to adding more water to thin it out.

While this seemed like a logical solution, it actually worsened reflux symptoms for some of the children I worked with. As I started to delve into the literature to learn why, I discovered research shows viscosity can play a crucial role in managing reflux.

In hindsight, it makes total sense. Thicker food naturally sits heavier in the stomach and away from the esophagus, making it less likely to come back up!

woman holding jar of green blended food

If you or your tube fed loved one struggles with reflux, it can be helpful to avoid overly thinning your home prepared blended meals. If you prefer to use commercial formulas, it can be helpful to switch to products with a higher viscosity from Real Food Blends and Functional Formularies. These simple adjustments made a huge difference for many families I worked with. You can learn more about commercial products and what one may be best for you here.

Of course, providing this knowledge would be incomplete without strategies for effectively managing thicker meals. First, let’s address the challenges posed by pump feeding. Feeding pumps require a thin consistency to operate smoothly, which can be frustrating. 

bag of green blended food on counter

Many families I’ve worked with have shared their frustration with the constant beeping and errors, leading them to try a different approach – syringe feedings. 

What was surprising is many discovered that their child was able to tolerate these syringe feedings of slightly thicker food in less time than they what they could tolerate via pump!

Recently, a family I worked with shared their positive experience. Frustrated with their pump acting up with thicker food, they decided to try syringe feedings. They decided to push a small amount of blended food every few minutes, and were able to give her meal over 30 minutes total. 

They were so surprised by this as their daughter hadn’t been able to tolerate pump feeds any quicker than an hour with formula! This breakthrough was significant for them and gave them so much time back!

P.S. Here is another tip I shared with them. 

jar of orange blended food in bowl of warm water

If the home prepared meals are still too thick for syringe feedings, try gently warming the meals. This will thin the meal slightly, while also promoting better digestion and tolerance for the person receiving the meal!

Just remember, real food should never be kept in the danger temperature zone for more than two hours, including warming time. It’s essential to feed the entire meal within two hours of starting the warming process and avoid making it too hot, which could potentially harm the delicate stomach lining.

As always, consult your healthcare team before implementing any changes to your tube feeding plan. Their guidance and expertise will ensure the most suitable approach for your individual needs.

Constipation: Understanding the Impact on Tube Feeding Intolerance

Constipation is a common issue for people fed via feeding tube. This causes quite a bit of discomfort and bloating and can even hinder nutrient absorption.

To make matters worse, constipation often leads to increased reflux, adding to the challenges you face. Our digestive system may be complicated, but it’s also quite simple when it comes to waste management – it needs to be eliminated.

woman standing with several jars of blended food in different colors

In my experience, addressing constipation directly can work wonders in reducing vomiting and reflux. If you’ve noticed an increase in reflux, it can be helpful to take a moment to assess bowel movements. Have they become less frequent or harder to pass? 

If so, here are a few strategies that might offer some relief.

  1. Increase fiber intake: Fiber is crucial for keeping our bowel movements regular and maintaining a healthy gut. Many synthetic formula products lack real food, which contain natural sources of fiber and essential nutrients for a healthy microbiome. Adding these back into the diet can help to promote more regular bowel movements.
cans of pumpkin and garbanzo beans

A simple first step to alleviate bowel irregularities, whether using formula or blended food, is to add a small amount of prune juice or puree to the diet. 

A blenderized diet allows you to take it a step further, as you’re able to incorporate a wider range of nutrients and fiber. Many families I’ve worked with have found success adding things like flaxseed powder, kefir, beans, pumpkin puree or dried prunes. These items can work wonders in supporting healthy digestion and smoother bowel movements.

  1. Increase fluid intake: Adequate fluid intake is key to maintaining a well-functioning digestive system and preventing constipation. In my experience, slightly increasing fluid intake as tolerated can make a significant difference.

I know this is easier said than done, volume intolerance can present challenges in increasing fluid intake. However, many families I work with have found success in providing some or all of the water flush BEFORE the meal rather than after. Water typically absorbs quickly, so giving it on an empty stomach can be helpful, rather than when the stomach is full after a meal.

Pro tip: Fill a container with your daily water goal first thing in the morning. As you provide water flushes, draw from this container. This is a great way to track daily water intake, especially if there are multiple care givers!

As always, be sure to talk to your health care team about your specific fluid needs before making adjustments to your plan. 

  1. Increase movement: Movement matters too! For individuals who are non-mobile, gentle leg exercises on the floor or utilizing a gait trainer can stimulate the digestive system and encourage regular bowel movements.
  1. Keep a BM/reflux journal: To get a better understanding of what’s happening, it can be beneficial to keep a bowel movement and reflux journal. Many families inside Blended Tube Feeding Made Simple quickly see a pattern of increased reflux when bowel movements are less regular. This encourages them to stay on top of bowel regularity and we are able to make necessary adjustments sooner! 

Please keep in mind that each individual has unique needs and circumstances. While the strategies shared in this blog post have been beneficial for many, they may not be universally applicable or suitable for everyone. It is crucial to consult with your healthcare team before implementing any new approaches or making significant changes to your tube feeding plan.

colorful vegetables laying on a table

Finding Hope and Flexibility in Alternative Tube Feeding Approaches

There are many emotional and logistical challenges faced when managing tube feeding intolerance. If you’re reading this, chances are you’ve experienced frustration and burnout from solutions that only address the symptoms, rather than getting to the root cause.

If that is the case, I hope this blog post provides you with some hope! For so many, switching to a real food, blenderized diet has made all the difference. The beauty of a blended diet lies in its flexibility. Just like when you eat something that doesn’t agree with you, you avoid or limit your intake, right? 

young girl sitting on kitchen counter and holding a food tube and smiling

With formula, that flexibility is not there. Instead, you’re left to provide the same thing for every meal, every day, without the ability to make adjustments. 

I am not anti-formula, as I firmly believe that “fed is best.” Formula can be helpful for many reasons, and there should be no shame in using it.

However, it’s disheartening to see formula presented as the only option for so many, leaving those fed by a feeding tube to miss out on the benefits of real food. It’s essential to explore alternative approaches and strategies when faced with ongoing digestive issues. 

If you’re finding yourself stuck in the spiral of tube feeding intolerance, using real food for tube feeding can make a huge difference. If you’re not sure how to handle the conversation with your health care team, here is a free guide to help you prepare.

Remember, you are not alone on this journey. If your team is not sure how to support you, Blended Tube Feeding Made Simple is for you! This program makes it easy to try real food, offering guidance through every step so you don’t have to think about what to do. Plus, you’ll join a friendly and supportive community and have direct access to me, you don’t have to navigate this alone! If you have questions or need further information, feel free to contact me directly!

Take care,

Hilarie, RD, CSP

Hilarie holding a cup of fruits and vegetables

*Disclaimer: The information and education provided here is not intended or implied to supplement or replace professional medical advice. Always check with your own medical professional before trying to implement any information provided here

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