More Traveling with Your Feeding Tube

I’ve combined two steps for traveling together on this post. My other recommendations are broken down into three previous posts.
This is so crucial I probably should have begun with this post. Take a note from your doctor on official stationary or Rx form verifying you are a tube feeder. The enteral system looks like a bomb fuse as you pass through an xray. Don’t get yourself strip searched because your “picture” looks weird. My doctor’s note helped me get through the Las Vegas airport and allowed me to take my water on the plane with me. TSA employees will love you when you hand them that doctor’s note.

Your final step before traveling: packing the “feed bag.” If you’re an experienced tube feeder, you already know how to do this. But if you’re new, there are certain must have’s for the feed bag. Pack soft, absorbent towels. The flour sack towels from Sam’s are perfect. Soft, very absorbent, light weight. Pack about three of four of these. Throw in a plastic glass to put your Jevity, Ensure, etc. in. Pack two syringes. The extra is insurance that the first always works. Grab a handful of rayon sponges. Don’t forget the tube itself, if you are using a Mickey button. A couple of cans of food. A bottle of water for flushing your tube, button, and rinsing out the glass. Do this religiously. You don’t want your tube, syringe, or button getting clogged while you’re traveling.
A quick caution about your bottle of water. When you pass through airport security, they may confiscate it. If possible, make sure the bottle has an unbroken seal. But if they snatch it up anyway, you can always buy additional water on the plane if you feel the need to eat in flight. Good luck finding a place to do this.
So why bother with all this gear if you can’t use it anyway? Because you’re going to appreciate it the minute you leave the airport. And your food is immediately accessible instead of rummaging through your luggage to find it. Besides, if you get stranded or you flight gets delayed, your food is with you.

Would I go overseas as a tube feeder? Perhaps if I were young, adventurous, and traveling with a spouse or friends who understand my limitations. Still, the restrictions of tube feeding would make me hesitate a long minute before I committed to an overseas ticket. The issues of time and privacy are big ones for me. But if they’re not issues for you, Bon Voyage. Send me some pics to post in the comment section.

Traveling With Your Feeding Tube, More Advice

More travel advice for the tube feeder
What do you absolutely have to have before you can leave home? A travel bag, a back up tube system, and note from you doctor. Let’s deal with the back up system first.
Stuff happens at the most inopportune times. It’s a rule of life. Plastic becomes brittle. Valve covers break. Tubes get clogged. We’re not talking about your car, though it sounds like it. What do you do if you’re in Italy and your tube balloon deflates and won’t reinflate? That’s why you need a backup system. You don’t want to head into an Italian emergency room hoping they have an enteral feeding system available for instant installation. Imagine how long you’re going to wait in the Italian ER while they document your insurance. And then you may discover they don’t have a matching enteral system. Your friends are really PO’ed for all the travel they lost sitting with you, and you’re going to be homebound on the next plane anyway. Because you can’t eat w/out a tube system.
Prevent that by ordering an extra system. It will fit in the bottom of your suitcase. And it’s insurance that your tube stays trouble free. I’ve never needed my backup system…because it’s always with me.
You also need plenty of syringes and rayon sponges. Lots of sponges. Cobblestone streets, jerky taxi rides, bumpy bus outings, they’re all going to irritate your tube area, and you’ll be grateful for the soft comfort of the rayon sponges. Change them frequently. And take a little Neosporin, just in case.

If you ignored my previous post and bought a dream flight ticket anyway, good for you. But, as it gets closer to departure day, you’d better answer some questions to avoid disaster later. Will your food travel with you? At a minimum of five cans a day, more if you’re walking around being touristy, you’ll need thirty five cans of Jevity per week. Have you picked up thirty five cans? They are HEAVY. Are you going to pay to have them shipped to your destination? If you’re flying in the US, your nutrition provider can ship to a different address so it’s there when you arrive. But how are you going to move all that food if you change locations during your trip?
Shipping it overseas is even a bigger challenge. You’ll pay a veritable fortune with no guaranteed your food won’t get lost or delayed. You can’t declare yourself on a serendipitous diet and just lose a few pounds. You’ll be in the hospital after two days. Perhaps you can substitute a powdered food, carry it with you and mix it when you arrive. Or confirm the availability of Ensure in the country you’re traveling to. If either of those options is workable, then I say, “Buy that ticket to Finland or St Petersburg, or Florence. But take a few more precautions before you leave.”
I’ll deal with those in the next post.

Come Fly w Me and My Feeding Tube

The following posts will deal with travel advice for tube feeders for both domestic and overseas flights. The posts were prompted by a reader who asked this question: can my friend fly to Italy after having a feeding tube inserted. And can she go just two to three weeks after surgery? Her doctors say if she’s going to Italy she must do it now …or never. Can she do it? What are some of the problems involved?
I didn’t want to answer this because my answer would be a dream smasher. Besides, if her doctors aren’t concerned, should I be?
Doctors don’t educate you carefully on the how to’s of tube feeding, not because they’re busy or don’t care. But because they haven’t experienced the challenges. But, in the last two years, I have learned some tricks that make traveling with a tube much easier.
Are these tricks enough to insure a successful overseas trip? I’ll let you decide as you read my tips.
First, the privacy demands of tube feeding limit how long you can fly. Tube feeding necessitates lifting your shirt or unbuttoning your blouse to plug in the tube. Once connected, you can drop the shirt and discretely feed yourself. However, a passerby can easily see the tube dangling from under your shirt. They also see your thumb pushing the syringe. You look like you’re pumping drugs directly into your stomach.
Even a short flight for the tube feeder is problematic. The early check in time means you’re adding at least an hour to your flight on the front end, and picking up your bags after landing adds even more time on the back end. So if your flight is two hours, you’d better figure on at least four to five hours of public time. A tube feeder will be running on fumes by then. And being hungry is so different for you. Your stomach doesn’t just rumble. Your whole body shuts down: foggy thinking, weakness, apathy, confusion, crankiness.
For short flights you can prevent those symptoms by eating two cans before entering the airport. But longer flights are still a challenge. Once you enter security, you’re done eating til you come out at the other end. So double your food intake before entering. I am wondering if you’ve declare yourself handicapped when you buy your ticket, will the airlines provide a place for you to eat, either on flight or in the airport.
If they don’t, you’re relegated to the public bathroom, and nothing is more disgusting than eating in a bathroom, any bathroom. Imagine drinking an uncovered milkshake in a toilet stall. The single time I was forced to eat in an airport bathroom stall, I visualized every particle floating in the air landing in my glass of Jevity. Avoid that nauseating experience by planning ahead.
Tomorrow’s post will cover Advance planning for getting your food to where you’re going.

Caringbridge.org A compassionate use of technology

It’s said that every evil produces a good, that every action has an equal and opposite reaction. Certainly my discovery of Caring Bridge is not equal to the death of my former student, but it is a good thing to come from that tragic loss. Because www.Caringbridge.org connects families and friends, both close and distant, to a person they care dearly about, Caringbridge is an imcomparably good technological development.
Sadly I discovered Caringbridge when I logged onto Facebook where I found a message from a former student notifying everyone on the Texas High list of the critical condition of ex-student Judge Jim Hudson of Texarkana, Ark. I immediately created a Caringbridge account and was able to read each entry from the time Jim developed sepsis from an abdominal surgery until the sad news posted by Jim’s family of his passing. I was also able to post a message to Jim, whom I’d lost contact with over the years.
I am no expert on the possibilities within the Caringbridge site, but I can certainly see where it will be useful to my family and friends one day when I am facing a recurrence of cancer or whenever death presents himself in the guise of a different illness or physical shutdown.
And I want each of you who reads this post to bookmark Caringbridge.org because Caringbridge offers the triple benefit of keeping you abreast of health news on those you love, giving you a place to send messages directly to the caregivers and family, and reuniting you with lost friends in the a sort of “six degrees of separation” experience.
Add Caringbridge.org to your favorites for when you need it later. It’s the best of compassion and technology combined.

Alcohol Raises Your Risk, Ladies

During my first marriage, which lasted thirty-eight years, my husband and I hardly went a night without at least two, maybe even four drinks, along with more cigarettes than I could even count. Although I’ve reduced my alcohol intake from at fourteen drinks a week to one drink a week or less, it was too late to stop the ball I had put in motion.

But if you can cut your alcohol to zero and snub out your last cigarette…forever, you’ll cut your risk of esophageal cancer substantially. Please, please, protect yourself. This is a lifestyle cancer. Change your lifestyle and save your life. Here’s the first of many articles on the internet about the connection between esophageal cancer and alcohol . www.cancer.org/downloads/PRO/alcohol.pdf

Preventing new esophageal tumors

Because esophageal cancer has a high rate of return during the first two years after treatment, it might be useful to know that black raspberries seem to be a deterrent to tumors. I’m going to find some black raspberry powder today. What can it hurt.

January 2009

Researchers from the Ohio State Comprehensive Cancer Center fed rats either an anthocyanin-rich black raspberry extract or whole black raspberries, and report approximately the same level of prevention for esophageal cancer with each form.

“Our data provide strong evidence that anthocyanins are important for cancer prevention,” said the study’s lead author, Gary Stoner, PhD. The results were published in the journal Cancer Prevention Research.

The Ohio State researchers used F344 rats and divided them into six groups. The groups consumed diets supplemented with: whole black raspberry powder (five percent); an anthocyanin-rich fraction; an organic solvent-soluble extract (these three diets all contained about 3.8 micromoles of anthocyanins per gram of diet); and organic-insoluble fraction (containing 0.02 micromoles of anthocyanins per gram of diet); a hexane extract from the raspberries; and a sugar fraction. The last two diets contained minimal amounts of anthocyanins.

The animals consumed these diets for two weeks before being treated with a compound called N-nitrosomethylbenzylamine (NMBA) that is known to induce the formation of esophageal tumors.

Stoner and his co-workers report that the anthocyanin-rich extract was nearly as effective in preventing esophageal cancer in rats as whole black raspberries containing the same concentration of anthocyanins.

The researchers noted that the organic-insoluble fraction also showed some anti-cancer activity, indicating that compounds other than anthocyanins may be beneficial. They added that they are currently attempting to identify what these compounds may be. The other diet groups showed no benefits.

Cancer Prevention Research 2(1):84-93, 2008

More Advice on Your Feeding Tube

     The referral stats on my blog have so many questions about feeding tubes and how life is with them. Even though I’ve written a couple of feeding tube entries, I’m going to do another and address some these questions.

     Most important to remember is, when your doctor says you need a feeding tube, it is not a death warrant. Let me reiterate: IT IS NOT A DEATH WARRANT. Sorry to scream at you. But I really, really want you to hear that.

     The purpose of a feeding is not to sustain you until you die but to get the most balanced nutrition to your body that science can design so that you can live and perhaps overcome your disease. Not everyone on a feeding tube is terminal.  

     I am finishing my second year on my feeding tube. So I’m very experienced in tube feeding, and I’m not about to die. I’ve used a feeding tube for two years because radiation destroyed most of my salivary glands and left my throat so scarred that it’s difficult to swallow food.

     With that said, let me address a few questions that sent people to this site. One was “how long can you live on a feeding tube.” The answer is: as long as God intends. The canned food for your tube is so balanced and nutritious that in the time I’ve been using it I have not had a single cold or the flu. Not once. That tells me I’m getting an absolutely balanced diet. No variety. That’s certain. But balanced. I use Jevity but have also used Carnation High Calorie Breakfast as well. The CHCB gave me over 500 calories a can, but it was so rich and had a tendency to nurture an oral yeast infection.

     Once that began, the infection wouldn’t respond to treatment until doctors put me on a special blend of canned food for diabetic patients. That reduced my sugar intake and starved the yeast into submission, but I didn’t thrive on that diet at all. I wasn’t sick. I was just weak all the time. Finally, I got brave enough to return to Jevity and have done well ever since.

     Another question on the stats page was, What can you eat through a feeding tube?

Bonus Side effects of Hyerbaric Diving

In case you’re new to my blog, or you’re a loyal reader who’s lost the thread of continuity because I’m not timely about blogging, I should probably remind you why I opted for hyperbaric treatment. It was supposed to prevent necrosis, rotting of the bone from radiation and implants done too soon. I’ve already covered the first day of treatment, so let’s move ahead a week or two. Today’s entry is about the side of hyperbaric treatment that makes all the claustrophobia and pyrophobia (is there such a word for fear of fire) worth it. The $144 I spent on toll fees, and the $500 in gas, and the sixty hours enclosed in an acrylic cylinder terrified and barely able to breath. All worth it.

 

I won’t know for another six months or so if hyperbaric worked for the reason they gave it to me. But let me tell you about the side effects that no doctor talks much about because they can’t guarantee these will happen. These side effects are so life altering that, if I could afford it, I’d buy Michael Jackson’s used (eeeeewwww!) hyperbaric chamber, and I’d be in that thing seven days a week.

Two Tips for Pain for a Mic-key Button Site

I had to have my Mic-key button replaced Tuesday morning. I had delayed this for at least a month longer than I should have because I’ve had enough of pain and didn’t want any more. However, the bottom connector fell off the tube, and the tube plastic had become so brittle I feared it would crack in pieces, spilling the contents all over the floor. So, it was time.

I had already ordered a new button kit identical to the old one, or at least the numbers were identical. Turned out the tubes are not interchangeable. And the buttons themselves are not identical either. This new one has a higher profile and the cap does not snap near as securely as the old button. The clamp on the tube is larger and not as easy to manipulate. But I didn’t have a choice anymore. I needed a change.

So Tuesday was Tubeday.

When my doctor examined the tube site, he was unconcerned with the redness and irritation. I warned him that the site was very tender and the tube change could be quite painful. He replied that it wasn’t going to hurt him a bit.

“We’ll see,” I replied. “You haven’t heard how loud I can scream.”

I closed my eyes tight and struggled with the pain of having the first Mic-key deflated and removed and the second inserted and inflated. When it was over, and I finished wiping tears from my eyes, I actually felt better at the tube site than I had in months. Even the dull and constant ache had disappeared.

Until last night.

Shortly after I pumped a can of Jevity into the tube, followed by a few shots of water, the site began to burn, a searing, knifing pain that throbbed off and on, getting more intense with each pulse. A “ring of fire.” I found myself clutching a kitchen counter to keep from dropping to my knees in pain.

Remembering that my doctor had said the irritation around the tube site was caused by acid, I wondered if a Tums might solve the problem. Within ten minutes of dissolving one in my mouth, I had relief. This morning, shortly after pumping a Jevity, I felt a tell-tale burn. I wouldn’t give it a chance to turn into yesterday’s torture. I popped a Tums and within three minutes the pain stopped. I had found a solution to the problem of acid around the tube opening. And it’s good for me too since Tums acts as a calcium supplement.

A second tip for dealing with tube pain is one I’m going to implement this afternoon. My doctor suggested painting the opening around the tube with Maalox. He said to stir the Maalox until it becomes paste-like, then dab it around the opening, under the button itself, with a Qtip.

I hope that, if you’re having problems with your tube, these two tips will help. They are sure making my life a lot more comfortable.