PEG tube

• By alphabubo
• Posted April 6, 2009 at 9:28 am
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I am sorry that you are having to deal with so much at such a young age. I just got a PEG tube last year to help supplement what I eat during the day through feedings at night. The PEG is placed through an endoscopic procedure, and all my other tubes before had been placed through a minimally invasive surgery. I would definitely say that the endoscopic procedure was much easier to recover from and not as painful. The PEG I have now usually not really hurt that much and leaks only a little. I still try to keep a piece of gauze around it to get what it does leak and keep the area as clean and dry as possible. The tube itself has not prevented from doing anything that I could not otherwise do. For example, I can still eat by mouth and can take a shower without any problems. It probably could be seen if I wore really tight closes, but I do have to wear anything really baggy. Often I just tuck the end of the tube underneath the middle of my bra when I am not using it so that it does not just dangle downward. I hope that getting the PEG tube will prove helpful to you and ensure that you get the nutrition that you need. Please feel free to ask any other questions that you might have. I will keep you in my thoughts and prayers. May this week bring you many new reasons to smile and hope.

Warm regards,
Bobbiejo

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• By MM100MOM
• Posted April 7, 2009 at 6:16 pm
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Sometimes after you have had a regular PEG for a bit the doctor lets you get what they call a button or low profile tube. That tube will lay flat against your skin and when you do feedings you will attach extensions to it. Ask your doctor if that might be an option for you after your stoma (the little tunnel that will form between your skin and your stomach) has completely healed.

I love your photo. Are you a dancer? My daughter is a pre-professional ballet dancer but she isn't the one with the tube. Our son has the tube and he doesn't wear really baggy clothes but not extremely tight shirts either. Hopefully your tube will help you feel SO MUCH better that it will be worth the sacrifice of wearing slightly looser clothing.

You're at an age where something that you believe will affect the way you dress is upsetting but you sound like a strong personality who can develop your own style. Soon all your friends will be dressing like YOU.

Linda

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• By vickstabubble-ox
• Posted April 7, 2009 at 7:09 pm
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Thank you Bobbiejo + Linda for your replys :)

No im not a dancer, it was taken at a party last year :) lol.
I always wanted to do ballet when i was little but timing never seemed right. lol.

How long has your son had a PEG linda ?
and when it was first put in did how long did it take for him and you (bobbiejo) to get used to it?

It doesnt really bother me about the tight clothes as i dont wear really tight clothes now i was just wondering, but its just the pain + changing it that is making me a bit worried about it.

In some ways i wish they would hurry up and put it in, as i want to have more energy, put some weight on and get back to school, but in other ways i dotn want it, as im a bit scared it will change things too much.

thanks again, it would be nice if you would keep in touch and let me know how things go .. if you dont mind.

Hope your both well :)
vicky xx

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• By alphabubo
• Posted April 8, 2009 at 9:00 am
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Dear Vicky,
I can understand your hesitation at wanting to get the g-tube. I felt similarly when I had to get my very first tube, a j-tube, but I knew that I really needed its intervention to help keep from continuing to spiral downwards nutritionally. At the time it was truly worth it. Since I have dealt with j-tubes and g-tubes for awhile before I got my PEG tube, it did not really take me too long to get used to it. Therefore I will try to consider how I reacted to my first tube. It did take longer for me to get used to this j-tube as it was the first time I had a long tube sticking out of me. However, it became almost natural to me not after too long. The time I felt the most difference was when I was showering because I did not have any clothes on that could support the tubes and they were more likely to pull downward on the skin. It took a little more adjustment how to learn how to best shower with them. I sometimes used a shoelace to tie around my neck and the tube so that something would hold it upward and the tube would not pull on me downward due to gravity. I never really had to adjust my clothing much except I tend not to wear one piece pajamas or long dresses that would make having access to the tubes difficult. I have had this current PEG for more than six months. It is held in with a bumper, and my doctors do not want to change it too soon, because it would have to be switched out for one that has a balloon on the end and they are afraid of the balloon bursting often so they are trying to delay that change.

I really hope that the PEG will work out well for you and help to provide you the nutrition you need so that you can best enjoy the activities that you love to do. I will continue to keep you in my thoughts and prayers. Let us know how it goes for you. Many, many hugs.

Warm regards,
Bobbiejo

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• By MM100MOM
• Posted April 8, 2009 at 9:08 pm
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I have to admit it was a bit scary when Cam first got his tube. At that time I hoped it was very temporary but I knew he needed it to save his life at that time. There were a few complications that continued for about a year and a half. He got yeast infections around the skin on the outside and he didn't tolerate the formulas they gave him very well. He vomited quite a bit and was often constipated. Now we are blending food to feed him and all of those complications are gone including the yeast. We think he was sensitive to some of the ingredients in the formula. I wish I had realized that sooner.

Many people prefer the low profile tubes or "buttons" and others prefer a regular old fashioned type like Cameron has. Our GI doctor isn't fond of buttons so Cam doesn't have one but I might try to talk the doctor into one in the future.

Linda

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• By whos_your_dolly
• Posted April 11, 2009 at 6:17 am
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I don't like the PEG tube because you can't remove the long hanging tube from the button and it gets in the way of everything. My son had one for 9 years before we got the Mic-Key. The PEG tube dangled and flopped around, and his stoma was always red and sore looking. We finally got the Mic-Key button and we love it. He's had that for 9 years now with no problems. He's 18 now.
The BEST low profile G-tube in my opinion is the Mic-Key button by Kimberly Clark
It is almost flat to your stomach and the tube that attaches to your feeding pump is removed after feeding so you don't have the long tube hanging down getting caught in everything and keeping your stoma irritated and/or infected.

This site tells about it
http://globalwebvideo.com/clients/kc/mickey.wvx

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• By vickstabubble-ox
• Posted April 11, 2009 at 8:06 pm
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Thanks 'Whos your dolly' and Linda but my doctor says i have to have the PEG first otherwise its a more complicated procedure. I would really like the MicKey as soon as possible though.
I have spoken to a girl my age who has a MicKey and she has said the same. But that its painful to change which i supose i expected anyway.

Thank you so much everyone your opinions have been very helpful. Esspecially yours bobbiejo :)

Please feel free to email me so we can keep in touch thanks
xxxx

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• By MarieTwinTubes
• Posted April 12, 2009 at 6:58 pm
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Vicky, hello there.

I am sorry about my delayed answer. Have you had the feeding tube placed yet? For me, the surgery and aftercare were not painful. In January I just listed all the things I could think of that I would tell someone else to save them some bumps in the road. It's long, but here it is. Don't let it overwhelm you. Just take anything that might be useful to you. On May 14 I will celebrate three years with my twin tubes (trach and feeding tube) and am so much healthier with them. :)
Here goes... (Those of you who have already read it before can skip this part! :)

When a new feeding tube is coming your way….

• Take heart. You can do this. Embrace the possibilities for renewed health.
• And start now learning everything you can about the:
o Tube
o Surgery (or endoscopy)
o Care and maintenance of the tube and the site for long term health and hygiene.
o Process of feeding yourself. Within your own personal limits, learn to everything you can for yourself.
• Have your doctor explain exactly what type of tube you will be getting.
• Be sure they keep it as simple as it needs to be for you. Since your limitation, like mine, is in your upper body, you probably need a plain ole g-tube (gastronomy tube).
• Before the time of surgery, tell the medical team you want them to keep the packaging so you will have a record of what kind you have. And on the way in to surgery, say it again to everyone that is near you. (They usually have a habit of automatically cleaning up without considering the need for information.)
• Just before they do the procedure, tell them to only inject the stated amount of inflation into the balloon. It will be stamped right on the tube.
• Ask questions all along the way and tell them to explain everything to you along the way.
• If you remain in the hospital, be sure the nurses and other care staff have knowledge about the tube and confirm it is in place.
• What ever formula you are prescribed, be sure that it has fiber in it or that you get your fiber through a supplement.
• If there is initially dried blood around the stoma and tube initially (from the surgery), be sure they don’t pull the tube loose getting the blood cleaned up.
• Ask the nutritionist if the formula supplier has a user booklet for tube users. It will have a lot of helpful information.
• Get the doctor to supply you with an extra tube to carry with you. (Good luck.)
• Be sure that you get thorough transitional information for returning home with this new object in your body.
• Be sure your supplies get home ahead of you.
• Clean the stoma area daily. A mix of hydrogen peroxide and saline solution works great for me. Then I dry the area with my hair dryer on low.
• The stoma/ feeding tube site will become one more area of your body at which warmth and moisture harbor the possibility of fungus folly. So keeping it clean is critical! If it starts itching or feeling irritated, think fungus and treat it right away. A prescription powder call Nystop works well for me. If you itch, get it sooner than later!
• Most of us are initially concerned about whether we are getting all our nutrition. Total formula works for me. I flush before and after with warm water. I think the warm keeps it cleaner.
• Don’t panic the first time you get it clogged. Even if you have to make an ER run, you will manage. I don’t put any homemade food in my tube, but that’s a personal choice. My formula is FiberSource HN. Be sure they prescribe enough to give you all the calories you need. And keep the site continuously clean. A lot of people use a carbonated drink to help clean the inside of the tube. I have used warm water with about a teaspoon of apple cider vinegar (But not right after the formula, lest it clabber.)
• There seems to be no standard about how long the tubes last or how the doctors view the best plan. But don’t expect it to last a year, like some might tell you. If it does, what a bonus!

All of the things I’ve listed are things I had to learn the hard way, so I hope we can help you get a jump start.
• The bottom line for me is that I am far healthier and better nourished than I had been in a long time.
• To get over the fact that you will not be eating and drinking through your mouth, the best thing you can do is to change your mind about how you will live life.
• I soon learned to appreciate the fact that my body felt hydrated when I had taken in water. I do not focus on how my mouth feels, but rather how my body feels. And I still enjoy the fellowship around the dinner table.
• Do brush your teeth as you always have to keep them healthy. I brush the entire surface of my mouth. I brush with Baking Soda. It does not leave me thirsty like toothpaste does. I then rinse my mouth very carefully with a SMALL amount of water, being very cautious to keep it in the front of my mouth.
• Go on with your normal life (whatever normal means!). Ask a lot of questions and don’t automatically accept everything you are told. Be sure you understand what is being recommended. And go with your gut in knowing what is right for you as far as routine.
• I have rigged up a gizmo so that I can feed myself and be hands free while the 60 cc syringe is draining via gravity. I’ll share that later.
• Don’t isolate yourself. I eat out with my family and friends, have learned to feed myself discreetly from anywhere I am. Nobody has ever objected. And I just got back from my first ever cruise. Disney was wonderful to me!!
• I ALWAYS carry a syringe, water, a can of formula, a Gatorade everyplace!
• I supplement my formula (4-8 ounces a day) with Gatorade or pedialyte, because it helps better quench my thirst.
• Always flush with water before and after no matter what you put in your tube.
• Enough for now! Just know that you can do this. Enjoy life to its fullest. You are just doing it a different way.

Cheers for life and breath. Marie

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• By vickstabubble-ox
• Posted April 12, 2009 at 7:15 pm
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Thank you for all of that, very helpful :)

I havent got the PEG yet, because at the moment the doctor isnt sure whats best also i have very bad adhesions which the surgeon is very reluctant to remove :( I have an appointment tuesday,(i will let you all know what happens) and i think we are deciding about the adhesion removal and PEG. When i was first told about it i cried my eyes out lol. But after looking it up and talking to so many lovely people, its made me feel lots better, also knowing i have people like me that can help support me i feel alot more confidant, so thanks :)

lots of love vicky xxx

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• By Sanford
• Posted April 13, 2009 at 7:31 am
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I have both a g and j tube, and understand your concerns.

When I wear button down shirts, as for work, I let the tubes hang out between buttons, because it's more comfortable. Otherwise, I tend to wear t-shirts, sweaters, and polos.... which I'd wear anyway. And the size isn't dictated by the tubes, but by my waist.

The pain varies. The tubes themselves don't hurt too often, but sometimes the leakage from the stoma can burn the skin around them. That also varies. Right now, I have a lot of burning around the j tube, which my radiologist thinks might be from decreased motility.

DO the tubes stop me from doing anything? HELL TO THE NO! I've traveled all over the country with the tubes, by car, Amtrak, and plane. This June,n I'm attending my 5th Oley Conference (Tampa, with a 4 days in Disney World first). I've attended college, I've worked full time as a substance abuse counselor, I've attended theater, opera, The NY Film Fest, The French Film Fest, and US Open Tennis.

Some tips:

Always order replacement tubes as soon as you have your tube changed (I have my tubes changed every 4 months). That way, you have a spare in case of emergency. My hospital doesn't carry my preferred brand and model, so I bring my own.

You're only as limited in activities as you choose to be and based on your health issues. One of the bigwigs in Oley has photos of himself climbing mountains holding his feeding bag above his head.


And maybe most importantly, you will frequently know more than a lot of doctors and nurses about the tubes and your condition. I know that sounds counterintuitive. Never be afraid to show what you know and never be afraid to be assertive.

Come to Tampa in June and you will meet amazing people who continue to triumph over whatever obstacles life throws at them. Look for a bunch of tubes on the beach. Better still, I need someone to ride Space Mountain with, since my sister hates roller coasters. I'll be the guy on line with the tubes.

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