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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » PEG tube feeding experiences


07-01-2011, 02:46 AM   #1
ruthyp
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Join Date: Mar 2011
Location: Colchester, United Kingdom
PEG tube feeding experiences

Hi All,

Just been discharged from hosp and will be going back in 2weeks time to get a PEG tube inserted.

To me it sounds like a life saver, this time last year i was a healthy 9stone, now i am just over 6!!! I am so desperate to put on weight but i dont want that to blinker me as to what is good and what isnt.

Please could anyone share good, or bad experiences with using PEG tube feeding and was it what you expected or a complete let down?

Many thanks
xxxxx
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07-01-2011, 05:16 AM   #2
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Hi there. I just got a PEG tube inserted myself about 3-4 weeks ago. I was somewhat surprised as to how its done - you can get an endoscopy/colonoscopy at the same time, and when you wake up, you've got the PEG tube. The pain from the surgery wasnt too bad as its a small incision.

Basically you dont feel fluid actually going into your stomach but you do start to feel full especially if you do it fast. I dont know what type of feedings you are going to be doing, but they might give you a pump that you can run during the night. You need to make sure you get the proper type of nutrition supplement depending on your needs. I take Peptamen 1.5 which is a high calorie, high protein one. Be aware that these are extremely expensive if you dont have insurance.

Why are you having a feeding tube? Can you not eat by mouth? You should be aware that since the food is going into the stomach, its exactly the same as eating it by mouth, so any nausea or stomach pain will still be experienced. However, the liquid nutritional supplements are designed to be very easy to digest so usually they will feel a lot better then food.

You can also put other things in your PEG tube if you dont want to drink it by mouth. For instance, I put in a supplement called "Proteinex" that tastes AWFUL but I put it down the PEG tube and dont taste a thing.

If you are able to drink nutritional supplements by mouth, that would ideally be the better route because its the same thing as the PEG tube. The reason I got mine, even though I was eating during the day, was that they wanted to do it overnight for extra nutrition. There are a wide variety of supplements and the best type are elemental type diets with high calorie, high protein.

If you are able to either eat or drink normally that is the best route. However, if you feel you cant drink as much as you require, you can go with the PEG tube, but of course it requires a surgery.

Also, have you discussed the possibility of an NG tube? An NG tube is a tube that runs down your nose into your stomach, just like the PEG tube. The benefit of the NG tube is that you can pull it out any time and thats it. The reason Im not doing it is that they can be difficult to put down your nose yourself and are annoying since you feel it there.

I would definitely recommend you at least give the NG tube a shot because if it doesnt work out you just pull it out and your done. If you want to, you can even put it in every night and then take it out the next day. It all depends on if you can tolerate the feeling of it.
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Extreme malabsorption
Previous ileostomy - currently have colostomy
PEG Tube
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07-01-2011, 06:23 AM   #3
ruthyp
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Join Date: Mar 2011
Location: Colchester, United Kingdom
dear keke, thanks for sharing your experience.

I have tried the NG tube, however I was born with cleft palate, so when the tube was at the back of my mouth, my palate was very irritated by it. They have suggested i have the over night feed.

I can eat some things normally, however when i have a crohns flare, it also flares in my oesophagus so it is very painful to swallow, i lost 2.5stone with my last flare then gradually went down again, so i no longer have the weight to lose.

The PEG tube will just be to speed up my weight gain, make sure that if i cant eat one day that i still get the calories i need. I believe that i will be able to recover better when i have abit of weight behind me.

Thank you so much for explaining this to me. Anyone else's stories would be appreciated too. thanks!!
xxxx
07-01-2011, 08:08 AM   #4
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Ah, I see. It sounds like the PEG tube may be useful for you. You should note that on days you 'dont feel like eating', if that includes nausea, stomach pain, etc, you will still feel those symptoms. I know when I have a bad day, I dont feel like eating either, but I also dont feel like putting anything in the PEG tube because it gives that same full feeling. But in your case, if its the actual eating that is troublesome, you may benefit from it.
07-05-2011, 04:26 PM   #5
Sadie123
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Join Date: Jul 2011
How come you can't do TPN feedings instead? Or are PEG tube feedings a better idea? I have no knowledge of them. I'm on TPN right now.
07-05-2011, 05:06 PM   #6
kekemonster101
Senior Member
 
Join Date: Oct 2010
Location: Parkland, Florida
TPN feedings and PEG feedings both have their advantages and disadvantages. I have been down the TPN road more times then I can remember, but what I can remember most are the problems associated with it.

TPN most often requires a central line because of how caustic it is to the veins. Ive had "PPN" before, which is essentially a watered down version of TPN that is suitable to go in a regular vein. Let me tell you - it BURNS and kills your vein fast. So, its either central line, or theres no way you are going to be able to do it long term.

So, now you have your central line (aka PICC line). Ive had 3 or 4 picc lines. TPN is filled with sugar and food that bacteria just love - and they ride that pipeline of sugar directly up that main line into your arteries where you can get dangerous infections. Its much more dangerous then a regular IV because of the placement of it. I have had bad infections before from PICC lines multiple times. In addition, my first blood clot was caused by a PICC line - the clot formed around the picc line. It is absolutely essential when you have any sort of main line that you keep it STERILE. Or else you will get infected. Nurses have a habit of not wiping with alcohol. Dont think your hospital is any different - its not. Any time your PICC line connector touches ANYTHING, make sure its wiped with alcohol before being connected.

In addition, main lines can get clogged easily.

PEG tube feedings are lower risk of infection. Its kind of like eating. You should be clean, but nowhere near as sterile as when you are dealing with the bloodstream. Its best to use the digestive tract if possible, but sometimes TPN is used to give the bowel a rest.

Did I mention you should keep your PICC line sterile? Make alcohol wipes are your new OCD habit. Not sure if the connector touched your skin? Wipe it again. Was that a bird chirp outside? Wipe it again. If you dont, a friend with the name of Staph and his good friend Yeast have a meeting scheduled with your white blood cells. And they are eager to make babies. Lots of them.

07-06-2011, 09:53 AM   #7
Sadie123
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Join Date: Jul 2011
Oh geez! I am reading this sitting here with my PICC line in!!! I know what you're saying though. I just got done with 3 weeks of TPN. And I did get an infection in my picc line a few years ago. I spiked a fever of 105 and was rushed to the ICU where I spent a night or two. It was terrible. And I know that nurses don't take care of it the way they should. I have had to tell them to wipe it, and to flush it when they're supposed to. And some of them have fought me on that!!! I am currently in the hospital but being discharged today. They are sending me home with my picc line in because I have a history of being readmitted frequently, plus I have a lot of upcoming remicade and blood work.
07-06-2011, 10:07 AM   #8
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
I just HAD to talk about infections, didnt I? Well, for the past day or so my PEG tube has been kinda sore and hurting a bit, and it looked like a scab type thing kept forming around the area of the PEG tube. Whelp, last night I had a fever and I think the stupid thing is infected. Now I see some discharge coming from there. Bah.. put some antibiotic ointment on it but I have a feeling I might need an antibiotic. Damn.
07-06-2011, 10:12 AM   #9
Sadie123
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Join Date: Jul 2011
ugh! So sorry! That totally sucks. I hope it gets taken care of. It's enough to be sick without all this other stuff to worry about. Hang in there!
07-06-2011, 10:25 AM   #10
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Aside from infections, I've had to get a picc removed because it got clogged and it stopped working. So I just wanted to give you a tip - flushing with saline is always necessary, but heparin is even better, especially if you dont plan to put anything through your PICC for a while. If they haven't sent you home with heparin syringes you should really inquire about using it. It can save you a whole lot of hassle.
07-06-2011, 10:27 AM   #11
Sadie123
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Join Date: Jul 2011
Yeah, I completely agree. I have been sent home before with heparin flushes, but I am at a new hospital and they have been giving me hell about even sending me home with regular saline flushes. I had to have my nurse basically sneak some away for me. It's this huge ordeal now. It shouldn't be so hard.
07-06-2011, 10:31 AM   #12
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Ah, I wish I could give you the extra BOXES of saline flushes I have left over! I think they are a little old, though
07-06-2011, 10:37 AM   #13
Sadie123
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Join Date: Jul 2011
lol. I wish I kept mine from the past, but I threw them away because I didn't know if they expired or not. Hospitals have to make everything so difficult! Basically i'm sitting here, my discharge papers are about ready, but I have to wait for them to figure out if they'll be nice enough to supply me with some freaking flushes! They are calling my insurance, calling some infusion center, calling my doctors, etc. Now they say there might be a hold up and I wont be able to leave until tomorrow.
07-06-2011, 11:42 AM   #14
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
Yeah, theres ALWAYS a problem. Delays, delays, and more delays. Hopefully you wont have to sit there too much longer. I think even medical supply places sell it..I wonder if flushes are all you need, if its possible to pick them up. I dont know if it requires a prescription or not..maybe your doctor could write a prescription on paper and you just pick up a box of flushes locally? Or maybe they could just give you enough for a few days until you can get more from your medical supply company.
07-06-2011, 12:08 PM   #15
Sadie123
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Join Date: Jul 2011
I got one of my favorite nurses to sneak me a whole bunch of them! And when I run out he will sneak me some more. hahaha But I do prefer to have heparin flushes too.
08-15-2011, 03:28 AM   #16
jlm
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Reading your Picc stories are crazy. That's not how the nurses operate here. Nurses here are great. I also been taught and given all of the supplies to do my own tpn at home. I get weekly shipments of all supplies i need . Also here a Picc is different then a central line. Central line normally goes into the chest into a vein close to the heart. Picc lines go into your arm and are threaded through you vein and are used on a less permanent basis. There's lots of people who have had both of these lines through out there Crohns career and they've been great for them. I think the way your comments are worded could terrify a first time line goer. Not everyone will have problems. Sometimes people are in that rough shape with fissures, abscesses, and flareups that their bodies can't even tolerate tube feeds.

As for peg tubes. NG tubes are just down right terrible. Mind you I was like 11. Issues with the peg tube was my weight changed so often I had to have the peg tube change 4 times. I'd loose weight and it would stick out gain weight and it would be too tight. Oh and the 2nd belly button I was left with. I found the peg tube to not be comfortable, I was always protecting it. Where the cooks catheter for TPN I don't even realize it's there anymore. If I had a choice between the 2 I honestly don't know what Id pick.
08-15-2011, 04:54 AM   #17
kekemonster101
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Join Date: Oct 2010
Location: Parkland, Florida
While scaring people certainly isnt my intention, I do intend to scare them into using alcohol and making sure nurses do their job properly. No matter what hospital, there are bacteria and you need to be vigilant, but sometimes thats not even enough.

That being said, TPN can be a life saver. Its very effective, but its not really a viable long term solution. A PEG tube is better if you plan to have it for a long time, and its also easier to take care of. TPN is good if your GI tract is a mess and you need nutrition in a hurry. I wouldnt want to scare anyone away from it if you truly need it, but if you go down that route, you should be aware of the complications that can arise even if you take care of it properly. Both main lines that go into the chest and the PICC lines in the arm can have problems, but it is very effective if you need nutrition. My opinion is to try the PEG first if at all possible. I have greater peace of mind just knowing theres less risk.
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