Friday, September 16, 2016

Top 10 Tips For New (and old) Tubies

Nutritional intervention via feeding tubes are a large portion of my daily life. Considering life before bolus syringes, mixing formula, and the presence of plastic end caps scattered about the house is bizarre. Simply speaking that statement would have been ludicrous during my tubeless days. Whether you are a tubie newbie or a tubie veteran, these Top 10 Tips For New (And Old) Tubies can be helpful. 

1.) Allow time before and after surgery to process becoming a tubie.

Illness is emotionally taxing. Symptoms, surgical pain, and a new medical "accessory," are all overwhelming. Being prepared only improves the situation.

2.) All surgery is rough. Feeding tubes are no different.

Realize that you WILL experience pain. Have the medical team create a medication plan to reduce discomfort. Pain management is essential. The amount of post surgical pain is not a universal experience. While I was fine with Tylenol afterwards, another may need a stronger medication.

3.) Protect the skin.

Use tube pads. My favorites have been from Julia's G-Tube Pads and Milostones. Julia's G-Tube Pads are comfortable in comparison to other brands I have purchased. The creator offers them in a variety of thicknesses. Milestones's tube pads are thinner, but incredibly cute. Fabric patterns with unicorns and polka dots have me sporting my tube in style!

Consider barrier creams for stoma leakage. First and second degree burns around the tube stoma are unpleasant. I live to tell. Silver Sulfadiazine is a prescription cream to heal burns. Neosporin is an over the counter option serving to aid in healing and used as a barrier cream. If healing existing burns is not the goal, protecting the skin with Vaseline is effective.

A huge factor in protecting the skin is proper tube sizing. Improper sizing leads to excessive leakage. Make sure stoma size is measured. It has literally taken three years of tubie life to determine my correct tube size, all due to the hospital's aversion to measuring the stoma with the proper device. The initial size of my first tube was 16 fr, 2.5 cm. It leaked like a sieve. Reducing the size to 2.3 cm to 2.1 cm, to 2.1 cm to 2.0 cm, and then 2.0 cm to 1.5 cm resolved the abnormal leaking. 

4.) Granulation tissue develops as the body attempts to heal the stoma.

There is no way to skirt around the issue. Burning the tissue off of the stoma using silver nitrate hurts. This method damages surrounding healthy tissue if not careful. There are alternatives though.

Place a few drops of tea tree oil on a tube pad. Leave it for a few hours. Tea tree oil was successful at diminishing granulation. Unfortunately, I am allergic. Shocker.

Steroid cream is not ideal, but relieves the pain and reduces granulation tissue.

A spice known as alum is effective too. Apply it directly with a Q-Tip after mixing with minimal water. Be cautious to only place it on the granulation tissue.

5.) DO NOT be embarrassed.

A feeding tube is meant to increase quality of life, not to deter living. Ignore the stares while feeding in public. Do not pay mind to the questioning glances when the tube is visible. Most of the population intends no harm. They are genuinely curious.

First Row: Mickey GJ Buttons; Button Deflated and Pulled Out
Second Row: NJ Tubes; NJ Tube Pulled Out
Third Row: PEG Tube, AMT GJet Button, XRAY of Tube Placement
6.) Invest in an AMT clamp.

There may be a night (or two...or three) when the tube obviously feels feeding the bed is more desirable than the GI tract. Formula bed baths are NOT fun. The AMT clamp prevents random disconnects that cause formula catastrophes.

7.) Feeding pumps are loud!

The sing song of feeing pumps are SO not music to the ears. This is especially true when trying to catch some zzz's or in the middle of a class lecture. The alarms sound for plenty of reasons, like clogs and air occlusions (aka "no food"). And sometimes, I am convinced it enjoys hearing itself as it alarms without a purpose.

There are not necessarily tactics to avoid the noise. In my experience the EnteraLite Infinity pumps are less problematic than Kangaroo pumps. In other words, the Infinity alarms less. It is also easier to carry. If able and know tube feeds are long term, consider purchasing your preferred pump online. It saves hassle with home health companies. eBay has them for cheap.

8.) Schedule time off the pump occasionally.

Any tubie will encounter days when remaining attached to an IV pole or backpack is a nuisance. Taking an hour or two off when possible is essential to mental health. I realize this is not an option for all patients with feeding tubes.

9.) DO NOT fear tube changes. 

While I am aware every situation is different, tube changes are rather simple unless there are extenuating circumstances. Tube replacements may only require a quick office visit to switch out a G or J tube button or to drop an NG tube. In some cases, all this is done at home.

Other cases, similar to my own, require interventional radiology to place an NJ or GJ tube that is threaded through the stomach and into the small bowel. X-Ray ensures it is in the correct position.Replacing my tube had me petrified in my early tubie days. All of my tube changes are done without sedation. The pain is short lived. It is far superior to anesthesia induced complications common with my condition. The entire tube replacement process takes approximately thirty minutes. Twenty of those minutes are setting up for the procedure.

If wanted, hospitals usually offer anesthesia.

10.) DO NOT avoid the nasal tubes if you have the option.

This advice is for newer tubies, which is why it is last on this list.

Nasal tubes, like NG and NJ tubes, are placed if only necessary for a short period of time. They are also a way to trial tube feeding prior to undergoing surgery. These temporary tubes determine if tube feeding is optimal for the patient. They reduce the stress of processes like finding the correct formula so it does not have to be done at a later date. They supply extra time to improve nutritional standing before surgery.

These are only the top few tips for tube feeding that come to mind. Does anyone have others to add?