All About Feeding Tubes

We have finally reached the point where I need a feeding tube. I have been putting this day off for a very long time (nearly 2 years) despite several GI doctors telling me I would need a feeding tube if I could not manage at least 1700 calories everyday on my own. On a good day I consume about 700 calories and I don't have many good days (and I am still far from my goal intake).

Accepting that I need a feeding tube has been a process. It's a big deal. It's a huge change for me and I wanted to reach a place where I felt at peace with the decision. So I stalled and stalled and kept pretending like I would be able to find ways to consume enough calories to nourish my body. But....it wasn't happening. And I knew that. I am underweight. I have little to no energy. My body has been without steady nutrition for far too long. We have tried everything there is to try. It's time.

I wanted to write a post to explain feeding tubes in more detail and discuss some misconceptions with feeding tubes that exist so as to hopefully help people better understand.

There are different types of feeding tubes...
Types of Feeding Tubes 

• Nasal Feeding Tubes - NG, NJ, ND - tube enters the nose (N) and travels down to the stomach (G), jejunum (J) or duodenum (D). Feeds can be given through these tubes and they can also be used to decompress the stomach (NG). 
• Jejunum = small intestine 

• Abdominal tubes
• G-Tube - most common type of feeding tube. They are placed directly through the skin and into the stomach. Those who require tube feeding for more than 3 months are likely to receive a G-tube. A G-tube may consist of a long tube, sometimes called a PEG tube, or a skin-level button. 

  

Mic-Key button

• GJ-Tube - very similar to G-tubes, they enter the stomach directly through the skin using the same site or stoma as a G-tube. There are two ports, one into the stomach, and one port with an internal tube that extends into the small intestine. The G port allows for venting to release pressure from the stomach. The longer internal tube allows feeding directly into the small intestine (jejunum- "J") for those who cannot tolerate gastric (stomach) feeds (as is usually the case with gastroparesis)--feeds are given more slowly through the small intestine. This is the type of tube I have!

  

GJ Mic-Key button

• J-Tube - tubes that are directly placed into the small intestine. These are seen in patients with delayed stomach emptying as delivering feeds into the jejunum (small intestine) bypasses the stomach completely. They require surgical placement. Feedings must be given slowly. 

There are SO many reasons why people need feeding tubes and I couldn't possibly cover them all.

Reasons for Feeding Tubes
Here are some reasons:

• Upper airway disease or obstruction 
• Gastroparesis and delayed intestinal motility 
• Cystic fibrosis and other lung diseases
• Prematurity 
• Failure to thrive 
• Congenital heart defects and other heart conditions
• Metabolic disorders 
• Endocrine disorders
• Malformations/diseases of the gastrointestinal tract 
• Intestinal obstruction
• Neurological/neuromuscular impairment 
• Cancer and chemo
• Renal problems
• TBI (traumatic brain injuries)
• Dysphagia (difficulty swallowing)
• Coma patients 
• Special needs patients 
• Various autoimmune conditions 
• Post-op patients 
• Cleft palate 
• Severe reflux with aspiration 
• Genetic conditions 
• Dysautonomia/autonomic dysfunction 
• Connective tissue disorders (EDS)
• Craniofacial conditions 
• Nerve damage 

As you can see...feeding tubes are used for far more than just gastrointestinal/stomach problems. 

Many people have no experience with feeding tubes and there are many misconceptions about them...

Common Myths/Misconceptions about Feeding Tubes 
#1 When you have a feeding tube you can't eat
While it is possible that individuals with feeding tubes cannot consume anything by mouth, many people with feeding tubes are encouraged to eat as much by mouth (orally) as possible. So yes, even though I need a feeding tube to ensure that I am receiving adequate nutrition (as I am not able to consume enough on my own), I am allowed to/encouraged to eat food.

A feeding tube takes the pressure away from force feeding myself and dealing with the consequences (vomiting, abdominal pain, bloating, etc.). And yes, I do miss food and I do want to eat food even though I no longer feel hungry and struggle to tolerate it.

#2 Everyone with a nasal feeding tube has an eating disorder 
This is simply not true. Nasal feeding tubes are typically used for patients who require a feeding tube for less than 3 months (they can be used longer but the discussion of placing a surgical/abdominal tube then comes into play). They are also used as a trial step to ensure that the patient tolerates feeds.

#3 Feeding tubes are permanent 
While it is possible that someone may need a feeding tube permanently, some patients improve enough to where they no longer need the tube. Everyone is different. Their reasons for needing a tube are different and therefore, it's a decision made between the patient and healthcare team if/when the patient is ready to stop tube feeding.

#4 Feeding tubes are only given to people who are underweight 
There are so many reasons why people need feeding tubes and not all of them have to do with weight.

#5 Feeding tubes are an easy fix
Feeding tubes are not a simple or easy fix for most people. They are a lot of work. It is not as simple as placing a tube and giving yourself nutrition. Some people do not tolerate formula/feeds well, they can can cause pain, infection, skin breakdown, and a host of other issues. The body doesn’t always like having a foreign object lodged into it. It can be a lifesaving measure, but it is not easy or simple.

#6 Feeding tubes are a cure (all of your symptoms go away)
Feeding tubes are not a cure. They do not magically make all of your symptoms go away. Similar to the answer above, not everyone tolerates formula well and you can still experience nausea, vomiting, pain, bloating, etc.

#7 You don't feel hungry when you have a feeding tube
Some people may not feel hungry due to the nature of their medical condition, while others still do feel hungry. Again, everyone is different. This is not a one-size-fits-all tool.

#8 Feeding tubes restrict what you can do
No, not at all. Kids and adults can lead relatively normal and productive lives with feeding tubes. You can remain active in sports, you can swim, you can work, you can exercise, and travel with a tube! Note: this is in regards to a feeding tube not another medical condition that may prevent any of those activities.

#9 Healthcare providers know everything about feeding tubes
Unfortunately, not all healthcare providers have experience with feeding tubes and some are downright clueless. Parents and patients often know their tube best and figure out the tips and tricks to making life with a feeding tube easier.

#10 Feeding tubes are only used if you're dying or near the end of life 
Please refer to the list above about reasons why someone may need a feeding tube. Feeding tubes are tools that help people consume adequate nutrition when they are not able to themselves (for whatever reason). They can be temporary or more long-term but they are not only used for people who are dying or near the end of life.

If you have questions about feeding tubes I encourage you to ask me! 

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Gastroparesis and Delayed Intestinal Motility

I have had GI issues for a long time, though it was always episodic and seemed to fall within the realm of Irritable Bowl Syndrome (IBS). As a result, I never really felt I needed to be evaluated by a gastroenterologist. However, in the Fall of 2016 that changed.

In Fall 2016 I began to (gradually) experience nausea with every meal, which sometimes led to vomiting. I also experienced abdominal pain and cramping, bloating, and belching. I had no appetite. My primary care physician referred me to a local GI, who did a bunch of tests but came up without any clear answers. Over the next year I lost a lot of weight and we still did not have any answers so my primary referred me to the Mayo Clinic to be tested for Autoimmune GI Dysmotility. It was believed that I had a motility disorder and seeing as I present systemically with a lot of autoimmune issues, AGID seemed to fit. The Mayo Clinic is currently the only institution that offers the AGID panel.

In Fall of 2017 I traveled to the Mayo Clinic for 2 weeks of testing and evaluation. I had a number of tests including a gastric emptying studying, small bowel and colonic transit study, autoimmune GI lab panel, anorectal manometry, and autonomic testing.

After a year of searching we finally had answers. I was diagnosed with gastroparesis and delayed intestinal and colonic motility. Simply put, nearly every portion of my digestive tract was delayed. This led to a backup of contents in the stomach and explained all of my symptoms. While we have a diagnosis, we do not know the cause. With my history it is possible it is due to EDS, POTS and/or an autoimmune process. One of my autoimmune labs from the AGID panel at the Mayo Clinic did come back positive but it is not a specific marker, it simply indicates that there is "something" autoimmune happening in the body (we knew that before I went to the Mayo Clinic). So while we cannot definitively confirm that my motility issues are from an autoimmune process, we also can't rule it out either.

The digestive tract is like a plumbing system. Each part of the digestive tract has its own specific function in digestion. When everything works properly, food travels down the esophagus and into the stomach where it is broken down into small food particles suitable for the small intestine. Once in the small intestine, the muscles work to push the food through all 22 feet and into the large intestine (colon). The process continues until the nutrients have been absorbed and waste has been expelled from the body.

In gastroparesis there is a delay in stomach emptying. With delayed intestinal motility, the small intestine has a difficult time moving food through in a timely manner. And with delayed colonic transit, the colon also struggles to move things along. This leads to a backup and symptoms of nausea, vomiting, bloating, feeling of fullness after just a few bites, abdominal pain, belching, lack of appetite, weight loss and malnutrition.

It is not clear what leads to gastroparesis, though a lot of patients with EDS and/or POTS have delayed motility.

Treatment is also tricky. Some people are able to manage their symptoms with diet changes and/or medications that promote motility. Others may reach a point where a feeding tube is necessary in order to provide the body with adequate nutrition when they are unable to do so on their own.

I have tried a liquid gastroparesis-friendly diet and every medication available at this time. Unfortunately, we have not had much success. The next step would be a feeding tube when/if my team feels that is the best option. If we end up going the feeding tube route, I would have a GJ tube placed.

My next follow-up with GI is in mid-August. Hopefully I am able to maintain my weight in the meantime.

I have added a section on Gastroparesis at the top of the blog.

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