Since so many OCF posters do end up with a PEG, at least temporarily, I'm sharing my experiences last week on getting thru security with a PEG and Jevity. I had my doctor's note of medical necessity, I triple checked the TSA website, so I thought I was prepared. Despite the website, there was no special line or procedure - the TSA officers thought that was sort of funny when I asked and they just said get in line with everybody else, please sir.
I only had four cans of Jevity 1.5 as carry on. The bag of syringes and feeding bags was no problem, - all plastic. They pulled me aside at Dulles, swabbed the cans to make sure they weren't explosives, then opened one can and did a reactive strip test to confirm no explosives or acid. Then they had me put the open can down my feeding tube - good thing I don't embarrass easily as hundreds of people kept streaming by. So pretty easy going out from DC
At Albuquerque airport though, the TSA person botched the tests and declared that Jevity was indeed an explosive. Two supervisors and an emergency response team later, she admitted perhaps it had been a mistake. I had already pulled my shirt up to show the feeding tube before they frisked me despite them saying: keep that shirt down since I knew otherwise they'd pull the PEG tube out. I kept my cool, and just smiled the whole time and soon enough after the second round of tests, the pat down and when more tests on my hands for explosive residue came back negative, the same drill. Pour the open can down your feeding tube and you're good to go,
In retrospect, I'd probably just go hungry next time and race to the nearest supermarket after landing and buy Ensure Plus rather than try and bring any Jevity in cans. The TSA folk were polite and did say they confiscate Ensure etc despite doctors notes, and only prescription medicine like Jevity, etc is allowed on board after a supervisor approves. None of them would even read my doctor's note nor wanted copies.
I had no problem buying Ensure Plus to substitute for the Jevity 1.5 which would have weighed over 33 pounds for a week's worth and left no room for clothes.
Bottom line, the PEG itself posed zero TSA problems as it does not set off any alarms etc but the cans of Jevity did.
The patdown/frisk ended okay since they could see the tube going into my stomach but otherwise might have ended badly.
Charm

Oh Boy!!!! Leave it to you Charm to start a ruckus


You were very smart to have pulled up your shirt and showed your accessory. Otherwise I would be afraid of what could have happened to you and your peg. Security would have thought you were wired for sure. After reading your post, I will think twice before I do traveling by plane with formula. Im not able to do the feedings by syringe, I get sick when I have used that method.

Thanks for sharing your experiences. Now Im looking in the friends section to hear about your trip.

Oh wow! What a trip! Thanks for sharing the experience. So I think I will wait to go on summer vacation until after my PEG is out. Next week it is coming out! I am nervous and excited at the same time.

I flew from the East Coast to Los Angeles in 2007 when I still had my peg. I checked a whole case of Jevity in a suitcase to last a week. No problems with that. I had 6 cans in my carry on bag to last the trip, along with all the notes/prescriptions from my docs. We had a few glitches but NOTHING like what you went through. I don't think I would have had the patience that you did. Your post should be sent not only to the head of the TSA, but to Washington DC as well. Maybe even to some BIG newspapers and news channels! They really need to have a special line for these situations. It seems ironic that security has trouble detecting those WITH explosives but they want to rake a person with special medical needs through the coals. It's insane!

I used to fly a lot for my job, so I am pretty blase about TSA incompetence. Watching greatgrandmothers having their handwrapped gifts torn apart to reveal stuffed toys and other "threats' as well as getting some pretty intensive scrutiny myself confirmed that you can't take TSA procedures personally. In fact, TSA brags about how it's searches are "random". I consider myself lucky that on the return flight, I did not fall victim to the two man, one woman team standing at the actual boarding gate who "randomly" picked out boarding passengers, all of whom had already run the security guantlet, and were forced to have their carry=on's opened and any liquids like coffee they had purchased tested.
Back in 2007, United did not charge the $25 for the first bag charge each way (which added an extra $100 to our trip,) and I would have packed all the Jevity into an extra suitcase but now a second bag costs an extra $35 each way.
I certainly did not mean to discourage anybody with a PEG from travelling. I tried to make it clear that the PEG was innocent, it was the cans of Jevity that TSA panicked over.
This is just business as usual for the TSA and not newsworthy. What about the poor girl who had a "white substance" planted in her carry on by a TSA screener? No, there are lots of TSA horror stories, but trust me, my treatment does not count as one of them.
But a picture is worth a thousand words, so please follow Christine over to the friends forum and take a look at proof of how much fun we had anyway. Travel is worth it even with a PEG and Jevity cans.
Charm

As a follow up on why the TSA charade was more amusing than an outrage was the context of our trip:
The trip was lots of fun as shown in the pictures. Unfortunately Alamo's rental car key was not attached to the key ring leaving behind only the remote and the plastic tag which fooled me into thinking I still had the key. We discovered it lost on Saturday afternoon and I spend 3 hours on the phone while Bev scoured Taos looking for the key - ending up with a locksmith driving an hour from Angel Fire but Alamo gave him the wrong key code so the key didn't work. Alamo still charged me $360. Another hour of arguing before I could get them to agree to tow our car and us back to their only New Mexico facility in Albuquerque to exchange for another rental car. The bill is still pendng on that. You can see why I labelled the Taos slideshow Chaos. On the bright side, we did get a "chauffered" three hour ride in 100 degree weather without airconditioning but open windows in a ten ton tow truck down mountain roads.

TSA was only a minor hassle in comparison. Now if I could only blame the PEG for losing the key
Charm

LOL Charm! I never thought of traveling while having a feeding tube would cause a security problem. I haven't flown in 2 years, I wonder if they make moms with infant formula feed their infants? I think it's ridiculous that they open a can up and then ask you to feed yourself some after it's already been tested. I understand they are trying to take precautions and be safe but it's still annoying! We are holding off on any family trips via plane until my tube is out.

Actually a contact in Homeland Security warned me ahead of time that based on what he knows of the TSA field people, I would have to put the Jevity down the tube, so I was prepared mentally.
Again, it's the sealed cans that drive them crazy, not the PEG. It just that in the past, I've had three and four hour delays on planes taking off and then up to a five hour flight and then delays on landing so we felt I should bring the cans. And once you open the pop top can of Jevity in the airport line, what are you going to do with it? Next time I may bring more and just throw the darn open can out in the trash or tell TSA they can keep it as a souvenir or perhaps in lieu of a tip.
And of course, you are right that a feeding tube does not pose any security problem, but then neither does a 4 oz tube of sunscreen or antiseptic cream which is banned instead of the 3 oz version. Wouldn't want to upset terrorist countries by actually profiling terrorists instead of randomness now would we?

Thanks for the replies and the link. I'll just go for it. Sounds like bringing a doctor's note is not worth the trouble. I don't have a PEG tube anymore so luckily I can travel and always find milk or something to eat, I just will feel more confident about the trip knowing I've got some ensure in my bag.
I just had a free flap and skin graft which covers the right side of my face and the spot where they took off my ear, so if they need proof of my "medical condition", it is pretty frickin' obvious!
Melissa

Melissa

That's the spirit. Love your signature line. You might enjoy the Vanity Fair article I posted today on the General Board:
Topic of Cancer which discusses how we cancer patients are culturally expected to "battle" cancer while no other patients are described automatically that way.
The good news is that no one hassles you at all once you are thru security. Too bad they don't sell it inside the terminals
Last but not least, I did a Google search for a Walmart/ Albertsons/Safeway near my hotel and found an Albertson's just a few blocks away to buy my Ensure for the trip. I did 6 cans a day and had no trouble finding it for sale in Taos or Santa Fe or Albuquerque in New Mexico.
Have fun
charm