Peg

[akhira]

I have been recommended for a PEG tube now. And I have always been very apprehensive of anything artificial in or on my body and this will be the first. Has anyone felt the same? If so how did you overcome the psychological effect?
Any advice, thoughts will be welcome!

[serenade]

I just got my peg 2 weeks ago and was apprehensive about having it done. I also had to look at what I would be doing to myself and my family if I did not have it done. I opted to do it and it is not that bad, it looks worse than it is.

I really don't mind it, and my hubby is getting pretty good at serving me my favorite drinks in it. lol.

Please don't wait it is important that you have it done as recommended,

Wishing you the best.

Judy

[sesl]

I attended a motor neuron disease information session with my mother today (she has bulbar symptoms) and a dietitician was showing us how a peg worked. She was also recommending that the "food" that got poured into the peg was those artificial food supplements, not "real" food in a pureed form.

I was horrified, and so was my mother, who associates all that artificial nutritionally dense packaged mush with my father's cancer. The house used to be full of these awful artificial products, and Mum was really happy to get rid of it after Dad died. Now she is being told that she will have to use these things herself if she wants to survive.

I asked the dietitician if we could prepare our own foods to put into the peg (pureed spinach, pureed lentils etc) and she said that would increase the risk of infection. SHe said that 30 years ago they had to prepare food for this purpose, but that is how things were done in the past when there was not such a range of packaged options. I got the impression that the dietiticians are very dependent on this packaged stuff.

Mum doesn't want to use a peg (yet) but the time will come for her to make that decision if she wants to survive. In the meantime we may learn more about what we can put into it (packaged nutrition versus wholesome home-made purees).

In answer to your question - I do understand your apprehension. It does seem that the choice is very clear and is based around whether you want to keep going (with an artificial prop) or not. And that is a very personal decision.

Good luck to you in making that very difficult decision.

sesl

[BarryG]

I had my peg put in on Valentine's day this year and I can say that without a bit of doubt that I would not be here without it. I was literally starving before I got it and had lost so much weight that I had absolutely no energy to do anything. I have since regained almost 20 pounds and have enough energy to do things. I am still walking, driving, and doing some household chores so my feeding tube allows me to have some kind of normal life. Sure it is an artificial device that no one would want to have but no matter what you put in it, it is a necessary thing if you can't eat or drink.

I have used Nestle Resource 2.0 exclusively for 10 months now and with four feeds a day I can get almost 2000 calories and it is quick, easy and there is no preparation involved. Whether it is better or worse than home made feeds I don't know but I do know that it is easier on those of us who look after themselves. I have had no problems with the formula so that is what I will be staying with as long as I can.

[BethU]

Hi, Akhira ... I didn't have any psychological issues with artifical devices on my body, since I've worn glasses since first grade, had fillings and crowns in my mouth for decades, and my husband wears hearing aids. I now use a walker/wheelchair as needed also.

Like Barry, I feel the PEG has been a life-saver. I got mine in January, and it's quite a convenience as well as life sustaining. I've taken my syringe and boxes of supplement to the hospital when my husband has been in, and can duck into a restroom or pull the curtain for a quick meal and back to his bedside in 5 minutes.

As far as artificial supplements, that's an individual choice. If you are a PALS caring for yourself for meals, and can do the shopping, chopping, cooking, storing, etc. yourself, or get someone to do it for you, that's great. I don't have the energy or the interest in calculating calories and nutrients to make sure I get everything I need. It's really convenient to have it all ready and measured in packages and just not have to worry about it.

But people vary in the amount of work they are willing or able to do. If anybody wants to "go natural," I say more power to them!

[mike b]

Hi, My wife didn't want to have her tube inserted at first. She was diagnosed in June 2008. She finally decided to go to a gastrointerologist to have it inserted in October 2008. The procedure was a nightmare for her and was ultimately unsuccessful because she could not tolerate being intubated. We decided to wait. Then a month later she got very sick with a blood infection and ended up in the hospital. They decided to install the PEG through their interventional radiology department. This was at University of New Mexico Hospital. The procedure was so easy and nearly painfree with only a local anesthetic. The doctor Xrayed her stomach, inflated her stomach with O2, then made a small incision and put in the tube. She was done in less than an hour. No intubation. Very slick. She resisted using it from December until this June when a video swallow study showed her aspirating food particles. She has used it ever since with no more food by mouth. It was an adjustment but it helped her keep her weight on. We bought a Vitamix 5000 blender and it has saved the day by allowing her to mix her own food. She tried Ensure but could not tolerate the preservatives and additives. She has had the tube replaced twice (they wear out) through the radiology department. I would encourage you to investigate this approach to installing the tube. It is a big adjustment in large part because for my wife it felt like she was admitting defeat. Eating was a way to remain "normal" but she eventually decided to accept her new reality. Hope this helps.

Mike

[GlenBrittle]

Being the logical smart-ass that I am , it just made sense.

Do you want to fight and live - hell yes.
What helps - keeping your weight.
How can I do that when its gets tough to swallow - PEG
So I did it. Eezy Peezy !

Glen

[akhira]

Thank you all for your thoughts. I wish I can be as objective and psychologically oriented as some of you on the forum but hey, I guess every one is different! - Also my apprehension is increased by a remark from my doc. who said that ‘it is not a small matter, it is a big decision’
Also I seem to maintain my weight for a while by planned intake but my stamina is still withering and I feel tired a quite frequently. Is it common? - Again thanks in advance for any thoughts or advice on that
Rgds