peg put in

MarianneS · 09-22-2009, 09:14 AM

After reading all the responses here and contacting Beth directly I agreed to have a feeding tube placed. I am hopeful in the near future it will prove to life enhancing, which is what made me decide to get it. The procedure itself was horrible. Why can't I be like Joel or Glen and have smooth sailing? I went in on Wednesday afternoon, that night they tried to place a nasal-gastric tube, after four tries they gave up. I can certainly recommend this as a new way of torture! I was afraid my husband was going to clock the doctor, not that I would have objected! I have trouble swallowing and the the tube, the size of a garden hose I'm sure,gave me a bloody nose and kept coming out my mouth. They turned me over to the gastro department and I waited all day Thursday to see if they could squeeze me in, they couldn't and waited until 230pm Friday when they finally took me. No food in all that time and here I thought the idea was to stop my losing weight. Anyway they got it in, I heard they had a hard time, but no explanation. The pain medication they gave me made me really sick, ow I have a hole in my stomach and throwing up hurts. The settled on tylenol which takes the edge off the pain. I did finally get home Saturday about noon.

Enough of the gory deatils, now I have questions. I am doing bolus feedings and I wonder how long you are supposed to take to do them? My husband says just pour it in but it makes me nauseous. He also wants to jump from three cans immediatley up to the recommended five cans, but I feel so full. My secretions also seem much thicker, more coughing, ow!, is there a difference with different formulas, mine is Fibersource HN. Also where do you put the tube to make it somewhat invisible? Tape it high or low, or in between?

I'm sure I will get a handle on it all, and I'm sure it will be a good thing. Thanks for listening and I will await your input.

Marianne

GlenBrittle · 09-22-2009, 12:16 PM

Hey Marianne,

I have not started feeding with my peg yet, but I can tell you whn I flush it , that if the water is too cold , it makes me feel queezy. When its warmer - room temp , I can put it in faster. My first time was cold water from our cooler , and it gave me a brain freeze.

Thats all I have for now.

Experiment . Remember , if you ate it by mouth , it can go in through the tube.

Glen

joelc · 09-22-2009, 01:06 PM

Sorry you had a rough time! Sounds like he has not done many of these.

Tich1 · 09-22-2009, 04:45 PM

Hi Marianne , with a naso-gastric tube attempt it sounds like you had a RIG procedure . Unusual to go straight to the 5 feeds if your tummy hasn't got used to having food so directly . I was started off by drip feeding , 1000 mls over 10 hours , then after a few days 1500 mls over 15 hours . Once I had been home for 2 weeks I went onto bolus , and have 5 bottles of 220mls a day . One bottle takes 15-20mins to feed through the tube via a 50ml syringe . You will soon know if it's going in too fast , you will feel nausiated , and get the squits too .
As for the positon of the tube to hide it , I wear trousers and jeans and find I can hide it easily . I tape it just to stop it being pulled . Tape so you have a length of tube to help you hide it .
You have been told , I hope to turn your tube round every few days , same as you would with earing holes .
xxx

BethU · 09-22-2009, 05:20 PM

Marianne ... ouch, what an ordeal! I'm so sorry you had a rough time.

I would go easy on the volume at first. In fact, sometimes I split my serving in two, because I use Resource 2.0 and it is really rich. (500 cal per cup). So I take half, thinned down, and an hour later take the other half. I also thin it with warm tap water so it flows easier (and I think digests easier, too, if it has a little extra liquid). As to speed of flow, I just let gravity work its wonders. I only use a plunger for unclogging purposes.

As Glen says, warm water is nicer to your tummy than cold.

As to the tube ... I tuck mine under a bra strap. The first couple weeks, I was coiling it in a couple loops above my waist and taping it.

I'm glad the hard part is behind you, and I hope you find it as helpful as I do!

Thanks for letting us know. We all need to share our experiences so others know what to expect.

Tich1 · 09-22-2009, 05:26 PM

Oh yes on the warmer water , it's too cold otherwise , you can feel your tummy as the cold hits it !

paleshia · 09-23-2009, 08:38 AM

Quote:

Thanks for letting us know. We all need to share our experiences so others know what to expect.

thanks for saying that Beth..it is so true, it really helps me to see others are indeed coping, and that they struggle too. So I'm not alone after all.

MarianneS · 09-23-2009, 09:12 AM

Thank you all for your replies and support. It is really helpful to share with others in the same boat andknow I am not alone in all this!

MarianneS · 09-25-2009, 09:00 AM

Hello Tich1,
What did you mean about turning the peg tube around? I have pierced earrings and remember doing that but nobody said anything like that to me about the peg.

Marianne

GlenBrittle · 09-25-2009, 09:53 AM

Its simple , and start the day you get it.

Grab hold of the tube, just above the skin and give it a half turn, and then turn it back. It might sting the first couple of times, but it does get easier and you wont feel it.

The reason it that you don't want the incision healing to the tube .

Glen

thelma313 · 09-25-2009, 11:13 AM

Marianne, it really is just like ear piercing. My dad was also told to turn his PEG the way that Glen describes. It really is necessary and I am surprised no one told you to do that.

I'm sorry your PEG wasn't as smooth sailing as it should have been but it sounds like you are already a pro with it. I'm just so glad you got it! It will help you take good care of yourself!

And we want you strong and comfortable!

DgtofTNfan · 09-25-2009, 12:36 PM

Marianne,

Sorry you had such a difficult time but I am happy you have your PEG and can use it to help with your nutrition. I remember you had your doubts but now I am hoping you are glad you had it put in.

For what it is worth, my Dad was not told to turn the tube either but I remember others on this site commenting on it so I checked with a couple of nurse friends because I was afraid it was overlooked in our care instructions. It was explained to me that most PEG tubes will shift naturally and it would take a while for several layers of skin, fat and muscle tissue through the abdomen to close compared to the ear which was made of just skin and could close overnight.

No one thought turning the tube was harmful unless the tube was stitched in - which is done occassionally.

Note that Tich, Rosella and Glen are not from US so practices will vary. You should check with your doc or his/her nurse if you are not sure and are worried.

Hope everything goes smoothly with using your new tube.
Dana

BarryG · 09-25-2009, 01:28 PM

I was never told to turn my tube either but I do occasionally because of what others here have said. Just the thought of it freaked me out but it doesn't hurt so it must be OK to do.

MarianneS · 09-25-2009, 01:57 PM

I did check with the nurse at the ALS clinic and she NEVER rotate the tube because it could become loose and leak. I think that those people who have one probably know better.
Thanks again for all your information and help.

Marianne

handinhand · 09-25-2009, 04:33 PM

Sorry to hear how hard it was for you..... Are you doing ok now? how long were you sick? I get real nausiated after surgery. I always ask to have something ahead of time, before the surgery...... Do not want to wake up sick... That is the worst...Were you wide awake for the procedure? Did thy put you out the second time they tried and it worked?? I am very nervious about this .... Linda