This'll be my first-ever post here. I had my PEG installed (20 French)as a sort of proactive measure prior to my treatment (which starts next week). I was told that I would have an "owie" for a couple of days and that would be it. Unfortunately, that was about all of the aftercare instruction I got on the thing. The nurses and doctors responded to my post-op questions by referring me to the homecare nurse that was to speak to me later that afternoon.

She was surprised that I wasn't informed by the people that put it in didn't give me more information and deferred to her, but she did what she could and was quite helpful.

However, a few new questions have come up in the interim and I figured that the folks with the experience would be in the best place to field them:

1) During the day, bits of what I ate seem to make it into the tube. Is this sort of regurgitation normal to your experience?

2) Naturally, it hurts pretty badly when I cough or sneeze, and the pain persists for a few hours after. I don't mind the pain so much, but am terribly frightened of this thing pulling loose. How likely is it to totally sneeze or cough the plug loose?

3) While I was told to anticipate pain around the incision site, no one told me about persistent cramping. I notice that other folks have identified the pangs when they were hungry, but for me it seems to happen at random (unless I'm hungry and don't realize it). It also hurts for a while when I eat. Is this normal, and about how long did it take to go away?

Thanks, folks, for your expertise, experience and wisdom!

Tom

Tom,

How long ago was the PEG put in? Its probably cinched pretty tight to your skin and should be loosened after a week. If I recall, its completely normal to have **stuff** back up into the tube - gross, huh? Also, are you flushing it with water every day? I believe you should be. Sneezing or coughing shouldn't cause the tube to blow-out or anything, but yea, it hurts like the dickens! As far as cramping, I don't think I experienced that one.

Hope this helps a little bit!

- Margaret

I remember when I got my PEG it was the same situation. They just sent me home with virtually no instructions. But I see from Margaret's signature line that the same thing happened to her as happened to me and that is the PEG came out of my stomach and was in my abdominal wall. I kept complaining but the doctors kind of acted like I was being a baby and I guess I didn't emphasize how much it hurt. So if it just doesn't feel right after a week or 10 days, make them x-ray it to make sure it is in your stomach. It sounds like yours must be since your food is getting into it - lol. My second feeding tube was a G-tube and although it was inconvenient there was really no pain involved with it after the incision healed.

By the way, where are you in Arizona? I'm in Mesa.

Welcome to OCF Tom

Sorry to hear about your PEG problems. They are very common, (although you would never know that from all the rah rah posts.) I've posted these links before and gotten lots of good thanks yous for it. While the Oley Foundation can never replace OCF as a support group, it does face up to the facts about feeding tubes.
Here are some helpful tips that the doctors should have given you but in my experience they don't even know about
Feeding Tube tips
Feeding tube complications chart
I've been stubborn and not switched out to the "button" instead of the "swinging cat tail tube" so I just tuck the tube into the waistband of my boxer shorts.
I hope your TX goes well. Keep eating by mouth as long as you can and even when you do use your PEG, keep practicing swallowing.
Charm

First, welcome to OCF. Try to squeeze the button or tab close to your belly and pull it so it loosens. Be careful that you are holding onto the tube by your stomach so you are not tugging on the tube. If you cant do this yourself, make an appointment with the gastro doc to loosen it. You will not make it fall out by sneezing. I know for the first couple days its uncomfortable but you will adjust to it.

Daily you should be flushing it with water. Always pinch it closed and be standing up when you do this. If it starts to overflow, pull the tube up higher, that will make the liquid in the tube go down. Its so hard to explain all these little tricks over the internet. I hope you are able to follow what I am writing.

If you see your food backing up into the tube, thats normal. Dont worry about it. Just make sure you flush it at least once daily. Some people use sprite or ginger ale weekly to help keep the inside of the tube clean.

When I had my PEG installed, I was sore for about 2 days. Everybody is different and some people are ok in a day while some take a few days to feel better. Also important is not to lift anything heavy. You do not want to strain your stomach.

Now is the time for you to practice with the tube and get comfortable with it. That way if you need it down the road you will be able to use it comfortably. You can even try giving yourself a feeding.

A feeding can be done with a pump. If you didnt get one, call the gastro doc and ask for one. I use a feeding pump to do my feedings mainly overnight. Makes it much easier for me. Or you could do it by pushing in the formula or holding up the syringe and removing the plunger then pouring the formula thru the syringe. Do whichever way works for you, whatever you are most comfortable with. Thats why its important to practice now before you would need it. If you get nasueous, slow down the feeding and/or add water to the formula.

Best of luck with everything!!!

Tom,
Welcome.
Getting a PEG is a surgical procedure so some discomfort for a week or two is likely, but if you are in significant pain for a significant period of time (15 minutes or so), you should have it checked out.

As best I recall, mine only hurt occasionally when I bent over, got up, bumped or wiggled it and within a couple weeks I was fine.

At first I had some minor digestive issues (heart-burn, etc.), but these also went in a couple weeks. For me, adjusting to the PEG was initially more a psychological issue.

Nevertheless, don't assume nothing is wrong. If it doesn't seem right, have it checked out.

Shortly after getting mine they had me setup for "PEG School" appointments, but your home health-care nurse will probably do.

Major PEG Complication are rare (not common) and seldom applicable to us. Most PEGs (about 9 out of 10) are placed in the very elderly with other severe medical/mental and nutritional issues often within months of their end of life. Unfortunately, PEG's in the elderly institutionalize population are abusively overused.

A PEG is a great tool and I am sure you will come to appreciate having it and like most of us celebrate the day you no longer need it.

To help keep your PEG days as few as possible; eat while you can and as long as you can and swallow a little of something even on those days you think you can't.

Hi this is my first post to anything ever. My husband had a PEG for well over a year and I was very inventive. We also got very little advise after it was inserted - like going home with a new baby.
Here are a couple of things I learned. My husbands tube was quite long and they taped it in place. That gets old and irritated his skin. I bought a very wide ace bandage and made a belt for him using velcro to make a pocket to secure the tube in place it worked very well especially sleeping and then we only taped it when he took a shower.
Another tip I got from the visiting nurse. And suggest you run this by professionals. If the site oozes this may be stomach acid and a few drops of Mylanta or Milk of Magnesia will neutralize the acid. I filled a small dropper bottle with this. Put a drop on when I changed the dressing. He never had a problem with the site.
The tube can get anything in it that is in your stomach. Chew well and then chew some more enjoy the taste. Tom(my husband) could not swallow anything so that was not a problem.
Also I invented a sort of 3rd hand for his feeding. I got a floor lamp and took the wiring out and light off so I was left with the stand and then took a swimming noodle and cut a 9 in piece off and then cut it down the back so it would grip to the pole. I cut the foam to fit the syringe and put the sticky Velco around the foam. (a picture is worth a thousand words) Now velcro your syringe and attach your tube making sure a piece of velcro secures the port that it will not separate from the syringe (what a mess) Now sit back and have a leisurely lunch.
I would like to say for anyone reading this that I think a "proactive " approach is best. This macho thing of not getting a feeding tube is a case of denial. My husbands first time around he refused the feeding tube and lost 30 lbs and looked terrible he was just at that point of either stop radiation or get a feeding tube. Don't make things more difficult than it has to be -on yourself and the people who love you.

I forgot to mention if you are using the feeding pump while you sleep, your bed needs to be elevated. I placed a couple thick phone books between the head of my mattress and box spring and sleep on 2 pillows.

It is very important to swallow water daily no matter how difficult it becomes. Keep eating as much as you are able and shoot for 3000 calories per day. It sounds like alot but your body will be burning calories like crazy fighting this awful disease.

A visiting nurse can be very helpful in teaching you how to use the peg tube. I had one come a few times during my first round of OC. It was so reassuring knowing I had a medical professional coming to my home to help me.

Best of luck with everything.

My dear sister was diagnosed with BOT and throat ca. in June 2010. Hit her and us like a thunderbolt but she was very very positive in the first three weeks..However, she had a bad reaction to chemo (one at start of treatment and one at end) plus 40 Radiotherapy sessions...She has just changed so much..Slept most of the time when she finished her treatment for quite a number of weeks..consequently do not think she did her exercises enough...She had a peg fitted before treatment started and because of her bad reaction to treatment she started using it straightaway. Will try to keep this short - She is due for her four month scan on 21st and then sees the consultant for the results of all her treatment on 27. The thing is she is quite demoralised as she cannot even swallow water yet. She was given barium but this showed nothing would go past her throat and only came back down her nose. She has been told by the speech therapist that because of the bad reaction she had to treatment and the scar tissue etc. she may from now on be peg dependent...although the ST said never say never! She has like all the lovely people on this site been through so much..can any one tell me how they coped with this as socialising has always been part of her life...She does not complain; but I would like to know if anyone out there was told the same...Thank you all so much.Kathie UK.

Kathie

It's always better to start your own thread so we can focus on you, but since this is your very first post, rest assured that you are hardly the only new member to add their question to an existing thread. Welcome to OCF, sorry you had to join.

I can avoid the PEG wars nonsense since with the exception of Christine all the posters who answered on this thread only had their PEGs for a very short time (IMO) so their posts aren't germane to your particular inquiry.

Now for the hard part: How do you cope with socializing if you can't eat or drink. My STs also refuse to give up and I spent several thousand dollars in co-pays doing a three times a week therapy including electrical stimulation for a year before failing my fourth barium swallowing test. Yet I go to Art receptions, school reunions, Thanksgiving dinners, and other social events regularly. I take my lovely wife out to nice romantic restaurants as well as casual dining.

Your sister sounds like she could do the same. IMO, the key is to get free of that damn pump or gravity bag and be able to use a syringe. But even if you can't, it's still doable. On a trip to Ashville NC, I just lugged my six foot pole and gravity bags to resturants as well as to hiking sites. My prescription medical food (Jevity 1.5) is very portable. I have a tiny little travel bag that holds three cans, two syringes, extension tubes, a cup and a napkin that I just sling across my shoulder and I'm good to go anywhere to party.

The key is focus in on the SOCIAL aspects. It's harder for me with the speech impediment, but you and your sister will be amazed at how quickly everyone gets used to her feeding tube. Life can be very good even if you can not eat or drink. I'm a living example. Read some of EricS' posts on attitude and accepting the life we lead now. Read Christine's posts. Share them with your sister. We all have gone on and your sister can also.
In the short term, here is a link on taking medications thru a PEG PEG meds

Finally, as the resident OCF contrarian, let me urge you to have your sister start putting a little wine down her PEG. I'm not saying get drunk, but if she drank before, the PEG lets her drink without any risk to her base of tongue or sensitive throat tissues. It's the one and only advantage of having a permanent PEG IMO.
Best wishes and please start a new thread with any more questions or if there is any way we can help you and your sister.
Charm