Through a strange series of events, I've been invited to speak at a national medical conference about being a patient with a feeding tube. They want to know about the experience, my problems, what I wish I had known, what could have been easier, etc.

I have my own experiences to draw on, but I'd love to hear y'all's opinion. If you had 15 minutes to talk to 1000 doctors about feeding tubes, what would you say?

CB
Stage 4 sarcoma, base of tongue
Cisplatin, Radiation, Dissection
4 years since dx

Through our experience and many others here on the boards, no one seems to give you any guidance on how to take care of the tube once it is put in. My husband had his placed in the Interventional Radiology dept. and then recovered for a few hours in the SPU (short procedure unit). I asked the nurses in both departments how to take care of it before he started using it and during and none of them had a clue.

CB

Wanda's point is excellent. My experience was also that despite being in a hospital that was part of a CCC, interventional radiology basically puts in the tube and then you are totally on your own. Zero guidance, zero follow up.
So I would mention that.
Also the distinction between a feeding tube and a PEG is important. By definition,any feeding tube put in by interventional radiology can not be a PEG since both the P and E are missing, that why's it's a G tube or G button. I have never had a PEG, but from reading OCF posts, many do not appear to get follow up guidance. But for G tubers, this is the one and only way they can survive, while many here on OCF have the PEG "just in case" and use it sparingly if at all.
Last but not least, I'd discuss the various feeding options: gravity bag, bolus syringe, pump and how nobody seems to think it is their responsibility to explain any of this or the advantages/disadvantages.
Finally, you can tell them they are lucky I'm not the Medical Czar, because I'd make every doctor get a PEG as part of their residency and use it for a month exclusively so they would not be so cavalier about urging people to get one and they would be empathic about the need for follow up information. Guess I won't be getting any invitations to speak
Charm

I agree with Charm 100%! No information is given or choices offered. As I've said in my own string I just discovered here on this forum that there is something called a Mick-Kee button that I am very interested in getting if I can. Why didn't the docs discuss my options before they gave me my PEG? In fact this is the third time I've had a PEG and no one has ever told me there's any other way to go!

Communication and information. That's what we want. After all it is our body.

Weird - okay my hospital was very good about the tube. It was put in - I had 2 teaching sessions and they had a radiation clinic that I could go to any time for dressing changes and help. Didn't really use it but they were helpful. So maybe that could be a suggestion- make sure the services are available to support a patient with the tube.

wow: cheryl has raised an interesting point. Isn't it "weird" that in Canada the medical system appears to have the basics in place for PEGs, while I have not seen one USA poster saying how much information and options they got on their PEG. David1 is a perfect example of how even a strong inquisitive patient is kept in the dark. Now that Brian has added the country IDs subtitles, I keep noticing how some North Americans' medical care differs from others.
Speeches always need a few "soundbites" so here are my suggestions: Do you know the difference between a button and a tube? When you hear term "Mickey" do you think of Mouse or Orlando?
Please let us know how your speech went
Charm

When I originally got my PEG back in 2007, I was well instructed. I was kept overnight in the hospital. The nurses there werent much help. When I was released the hospital sent a visiting nurse to my home. She arrived and waited for the equipment and supplies to be delivered. She set it up and gave me full instruction. She taught me the 3 ways I could get my formula. The push method by syringe, the gravity method or by using the machine to slowly pump it into my stomach. The nurse stayed with me for several hours making sure I was ok with everything. From what everyone has said over the years, I am the exception to most US patients.

Great stuff, thanks. Any things to share about cleaning, what not to "eat," slippage, etc.?

I've never had to clean any of my tubes, just rinse them with water. I've had zero luck in cleaning the syringes but as Christine noted in another post, I'm tough on them since I grind up pills and syringe them down. Time release capsules clog up the tube as did Vicodin. Wine goes down easily, beer fizzes up in the syringe and tube too much.
The only slippage I have is when the tube falls out.
Charm

Hi CB,

What conference will you be speaking to? Patient education in my opinion is the most important item to give a new tubefeeder. Especially a list of support forums like this. I had my g-tube placed at Mayo Clinic Rochester and they had a nurse give me thorough instructions on the care and maintenance of the tube. However they did not give me much guidance on which formula to use or that real food was an option. I researched on my own till I found one called Compleat which I believe is the only canned formula made with real food (chicken, cranberry juice, carrots and peas). I also experimented on my own creating fresh food recipes. It sure would have been nice to have a resource at the time. I laugh about it now but for almost a year I used a regular blender and then put it through a strainer until a friend told me about the Vitamix. I've used it ever since.

Blessings,

Jesse