New to the Tube?

 

journey-begins-blog

If you’ve just received your first g-tube, understand that there is a learning curve.   Things do get easier.  Just like most things in life, with practice, we get better at what we seek to learn.

People say that life is a journey; they say its an adventure.

John Lennon said,  Life is what happens to you while you’re busy making other plans.

I hope this blog will be a help to you, as you begin your  (possibly unplanned) adventure.

 

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Its completely normal to have pain, especially  when you lay on your side.  This pain can last for months for  some people.

The stronger your abdomen muscles are when the tube is placed, oftentimes correlates to how much pain one feels during the recovery process.

Warming everything that goes into the tube helps with stomach cramping.  Warm the water too, not just food.  Not hot,  test it on the inside o your wrist, it should be body temperature, or slightly warmer.   This may be necessary for several months.

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MEDICATIONS AND SUPPLEMENTS

Make sure that your medication can safely  be crushed.   If your medication is a time release type of tablet, or enteric  coated,  you will need to ask your healthcare provider for a different version.

[A note in reference to time release capsules that contain the tiny beads:]

According to Ron Coppinger (the founder of the Adult GTube Feeding Group on Facebook:  “If it’s a PEG dangler (non-Balloon type)  then you can make a little alterations and be able to send down meds that are small bb type time release. To do that on a non balloon type dangler (Gtube) not any J’s. Remove the y-port adapter on the end of the dangler. You will need to clamp off the tube below the adapter though. This allows you to use a 60cc syringe directly to the feeding tube creating an opening about an 1/8 of an inch or better. Those little beads flow down once you open the capsue and then pour the beads down a dry syringe followed by a water flush. The integrity of the time relaxes stays as long as you don’t crush the beads.”

I don’t personally have experience using time release capsule medication, but I do trust Ron’s advise.  He knows his stuff.

I’ve found that tablets that resist crushing (they remain gritty and problematic) oftentimes dissolve more completely by just putting in water, and waiting a few hours, rather than attempting to manually crush. In fact, I can’t tell you the last time I crushed a pill!   I just pop it into a 10 or 20 mL syringe, add water, and let the pill dissolve on its own.

Medications and supplements  dissolve at various rates, some almost instantly, others a few hours or even overnight.   If its going to be a while before you take the medication, either because it is slow dissolving, or its just not time yet, pop it in the refrigerator until its time.

Gelatin capsules that encase powdered content are best opened, and contents poured into a container, and then water added.  The soft type gels have been the most challenging for me, and I avoid using this type of vitamin, or OTC medication.

Any small container that has a leak proof cap  will work as a medications cup.  When its time for a dose, you can just pour into an open syringe, and flush with at least 60 ml water after its all in.

Another option is to dissolve medication by dropping a tablet into an empty  small, slip tip syringe.  Hold your finger over the end, fill with water, and push the plunger in just far enough for it to stay in the syringe.  Wait for pill to dissolve.

If you have a low profile “button” type of tube, you may be tempted to inject medications directly into the device with a  a small syringe. The only button I am certain it is okay to do this with is the AMT Mini One (the manufacturer states in their literature that this is an acceptable method to administer medications).  I can speak from personal experience that it will most certainly  damage the anti-reflux valve on the Mic-Key and the Corflo cuBBy. The Bard button I am not sure about, but, as the button uses non locking straight tip extension feeding sets, I would assume that it would be fine to do this with a Bard button as well.

The following is a method  to administer using “y” port adapters.

If you opt to put in both syringes first before unclamping to administer the dose, that’s fine.  It alleviates the risk of forgetting to cap one side before opening the other.  But, its awkward to use two syringes that are both 20ml, and there is an increased risk that one will pop out due to lack of space Using a 20 ml with a 5 or 10 ml can work though. Alternately, you can inject into the medicine port, while the larger port is still capped,  Clamp the tubing,  remove the syringe and cap the small side, then open the larger port, insert syringe into that port, unclamp and flush with water.

If you have a  button type g-tube, the short 2″ medicine extension sets are great.

In the photo below, I show both a 20 ml luer lock tip syringe (for water flush) and a 10 ml slip tip syringe for the medication.   I know the photo says the extension set is 2″, and the extension sets offered by manufacturers for medication  really are two inches, but, this is a homemade version, and its more like 3″.  I didn’t notice the discrepancy  until after the text was saved on top of the photograph.

If you’re not using a short extension set, but longer tubing instead, its probably a good idea to flush with more water, using a standard 60 ml oral syringe inserted into the larger of the two ports.

Luer lock tip syringes make it possible to inject into the larger port with a small volume syringe. What this means, is you can use a short 2″ extension set with just the single bolus port, and still use small sized syringes to inject the dose.

I greatly prefer the single port short extension set, as the “Y” port adapters are just an accident waiting to happen.  If you use this type, it is imperative  that you always check to make sure only the port you are using is open, before injecting into the other one.  The mess it makes aside, it is so frustrating to begin to flush with water after putting the medicine in the small port, only to realize you didn’t cap the small port back up before starting the flush into the larger one.  When this happens, there’s no way to tell how much of the medicine has gone back out of the tubing, instead of its intended target.

 

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Syringe tip identification:

The 60ml syringe you  most likely were supplied with for feeding time with your tube has a tip called a catheter tip. This type of syringes is frequently referred to as an oral syringe.  Regardless of the syringe’s volume capacity, if the description says “oral” or “catheter” tip, this is the shape it means. It is shaped like a traffic cone.

A slip tip is a straight small tip, and can be offset, or in the center of syringe end.  A slip tip is sometimes called  regular tip.

A luer lock has a lug tip

Here is a photo example showing  syringes with different tips.

syringe-tips

What goes in must come out…

Regardless of whether you use a prescribed formula, or make your own food for the tube, constipation can be a problem. Some commercial formulas don’t even have fiber in them (one example is Osmolite 1.5).

First, Get enough water! Keep a daily diary if necessary, or set a timer to remind yourself until you’ve established a habit.

Add powdered magnesium citrate into your diet (citrate not oxide). The powdered form is easily mixed in water, it will fizz a little when it is first mixed in. Magnesium isn’t just valuable for the osmotic effect it has in our intestines, magnesium serves many functions. A number of studies have shown magnesium can benefit your blood pressure and help prevent sudden cardiac arrest, heart attack, and stroke.

Consider blending food, and including it into your diet, even if you wish to continue with formula as well.

“Real food” ingredients such as  pumpkin (solid pack pumpkin sold in grocery stores for baking) can easily converted to a consistency that can be used for tube feeding by just thinning with water or juice, and will assist with combating constipation—pumpkin also helps with the opposite problem, diarrhea.

Healthy fats like olive oil, coconut oil, or any other oils are necessary to replace the fat you used to have in your diet. They lubricate your digestive system, soften fiber, and have nutrients you don’t get anywhere else.  As tube feeding presents challenges with getting enough calories in, adding these, even if you are using formula, will help with avoiding constipation, and add to the quality of your nutritional intake.

Benefiber (or its generic equivalents)  is easy to add to any meal or water.  But, it is only soluble fiber, which can make you gassy in large amounts.  That is why using real food that has insoluble fiber (such as pumpkin) is good to include as well.

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SKIN PROBLEMS

How should your stoma—aka that tunnel in your body the tube goes though—appear?  What is normal?

The following is only what I’ve learned through personal experience. It is my opinion, and is not to be taken in place of seeking medical attention.

Know that some drainage is common in the beginning, and is expected.  If you have secretions, its a good idea to keep a cloth pad (or disposable gauze sponge) under the flange or button, to help keep the skin around your stoma dry.

Keep it clean, but don’t use harsh cleansers.  Never use peroxide, or alcohol.   Plain warm water, saline, or ph balanced baby wash works fine.

If you have dried secretions on the skin, gently remove with a q-tip or washcloth dipped in warm water or cleanser.

For the first three months or more, keep the weight of your tube off of the stoma (the tunnel through your skin to your stomach). Use tape to secure it, and I mean really secure it from movement throughout the day.  If you are allergic to tape, look into HY Tape, the adhesive on it is made from zinc oxide, and it is latex free. I posted a review of it  with links to the company so you can write to them for free samples.

After  those initial months, if you switch to a low profile button, you may be able to do away with any taping, except for times you will be very physically active and there is a chance the button could get pulled or otherwise experience a form of trauma  (and nighttime during sleep is  a good idea).  If you are staying with a long tube, it is still very important to keep the weight of that tube from causing friction in the stoma.  A popular method to manage the length of the tube while not in use, is to attach it to a lanyard that goes around the neck.  A retractable lanyard is especially nice.  If you start seeing any signs of inflammation, or a significant increase in secretions, its best to go back to taping it again.

When you’re using the tube for meals and water, pay attention to how much the tube is being manipulated where it goes into your body.  To keep the weight of the tube off of the stoma during meals I roll a washcloth up, and place it against the extension tube on the side that needs to be supported, and therefore reduce likelihood any incidental trauma.

 

If you are a side or stomach sleeper, and the tube is receiving pressure to one side or the other during the night, you can roll up a cloth (even on both sides if needed, and secure in place, at least for the first few months after getting your g-tube.

Foul smelling distinctly yellow or green discharge is not normal.  If it smells, or you feel poorly, or there is pain or a fever, then its time to put in a call to your doctor. When I’ve had an infection brewing, the odor  is kind of like how old dirty sneakers smell.  But, any foul odor is an indication that things aren’t right.

If you have redness, and possibly white patches (if you’ve ever seen thrush, you’ll know what I mean by white patches)   this could be a fungal infection.  Although you may not notice it having an odor, it may itch (or not) and be painful. Using a topical OTC anti-fungal is effective. Try to keep the area as dry as possible, Using a cloth pad under the g tube bumper, or button, will also allow more air to the skin in addition to soaking up secretions.

If you have pain and/or bleeding at the site, but no odor, then you’re probably either dealing with some stomach acid leaking onto your skin, or hyper-granulation tissue.

Some people have more issues with stomach acid leaks  than others.  I’ve rarely experienced it.  It will cause the skin  around your stoma  to be red and burned.  A barrier cream or spray is helpful to protect your skin.   Zinc oxide barrier creams commonly used for babies to protect from diaper rash work well for many.  Also, there are topical  formulations  such as Cavilon No Sting Barrier Film by 3M, that is a spray, and available at most drugstores. Another option is to try a Stomahesive powder.  This product, when applied to the area, turn into an occlusive gel when exposed to moisture, and  forms a protective barrier that protects the skin.

If you have quite a lot of skin burning from acid leakage, its best to consult with your doctor.  It’s not ideal, and can be reduced or eliminated  by adjusting how snug your g-tube fits.

If you continue to have exudate (other than just a tiny amount) after those first couple of months, its time to take a closer look at how you are caring for the site, and also to be more aware of what you may be doing during the day to cause  mild, but ongoing trauma.  Lifting heavy things, letting the weight of the tube be fully on the stoma, having a lot of movement of the tube within the stoma on a daily basis, all will keep the healing processes in limbo.

The formation of hyper-granulation tissue is common. It was always lurking in the shadows for me. To read more about how to treat, and banish hypergranulation, which is called by other names including proud flesh, granuloma, and overgranulation, there is an entire page devoted it this subject on this website.  Click on the tab for it in the menu section at the top of this page.

Managing excessive phlegm/mucus:

If you have swallowing difficulties, then the last thing you need is to have to struggle with mucus.

The subject of cows milk increasing mucus production is one of great controversy.  The research and debate continues.

Certain breeds of cows produce milk containing a protein called beta-CM-7. This protein can stimulate mucus glands in both your digestive and respiratory tracts.

Milk containing the beta-CM-7 protein could therefore very well stimulate phlegm.

It is estimated that at least 90% of dairy cows in the US produce this protein.

Goats milk does not ever contain beta-CM-7; so, it does not stimulate phlegm production. Additionally, goats  milk contains less lactose than cows milk, and often can be consumed without problems by  those who are lactose intolerant. Goat milk is also higher in caprylic acid than cows milk. Caprylic acid is a natural antifungal.

So, one option is trying goat milk and see if this makes a difference for you.

You can also try using the amino acid L- Cysteine.  I purchase it in powder form which mixes easily in water.  Here is an excerpt from Wikipedia: Acetylcysteine is a derivative of cysteine; an acetyl group that is attached to the nitrogen atom. This compound is sold as a dietary supplement commonly claiming antioxidant and liver protecting effects. It is used as a cough medicine because it breaks disulfide bonds in mucus and liquefies it, making it easier to cough up. It is also this action of breaking disulfide bonds that makes it useful in thinning the abnormally thick mucus in cysticand pulmonary fibrosis patients.

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I hope this at least gives you some helpful information to fall back on, as you begin your  experience with a feeding tube.   Please check out the other sections of my website, there is lots of information here. Under this same “New to the Tube” tab, there are two more pages with more topics that will be of interest to the newer tubies out there.

If you would like to contact me with specific questions or comments, you may use the contact form below, or click on the “contact us” button over on the bottom right of the screen.