New Peg Tube

my guy had a PEG tube inserted this week...he finished induction chemo 2 weeks ago and starts radiation/chemo on monday.

the follow up care for the PEG tube said return to work the next day...he isnt working right now anyway but there is no way he could have endured going back to work!  He is fine when sitting still but any bending or movement he is very sore...never mind the anxiety of learning to care for the damn thing.  i am sure it will become routine over time...but my question is...how quickly did most people heal from the tube insertion? 

~M

When I had my PEG tube, they gave me an elastic "belly band", it is like a spandex cummerbund that fastens with velcro and does a very good job of holding that tube so it doesnt move around. You could probably find one at Walgreens or some other pharmacy. I also got some gauze drainage pads about 3 inches square and slit them in the middle so they fit over the tube to cover the insertion site. Get some 3m easy release tape to hold it on and change it daily. I didnt have any problems after the first few days, although I went to work the second day after my tube was placed. The pain was tolerable just with ibuprofen.

Tell your guy good luck on his treatment. Both of you will find plenty of advice and support here. I know I have.

Best wishes,

Mike

thank you for the "belly band" suggestion.  we thought we had heard something about a velcro thing to hold the tube in place...tape is so hard on your skin...we tried the paper tape but it didn't hold it in place.  the hospital did give us the sponges with the slit for dressing it and that has been helpful

did you ever experience putting water in and it just sat there? that happened twice - finally used the plunger to force it in..today no probems at all.

thank you for the well wishes

 ~m

"did you ever experience putting water in and it just sat there? that happened twice - finally used the plunger to force it in..today no probems at all."

Yeah, I did. There were times when it seemed like it took forever to get anything through that tube. Try experimenting with how he sits when using the tube, I found that leaning back a certain way made things go down faster than standing or sitting up straight.

Another tip for you...get a pill crusher, some of the meds are crushable (ask the pharmacist or your doctor first, some are NOT) and you can mix them with some water and take them through the tube if he is having trouble swallowing the pills. Also, for pain, I was given a liquid form of oxycodone which worked well. If you get into a situation where it's needed, you can ask for it.

Hope this helps,

Mike

My PEG tube was extremely painful for the first week. Ibuprofen worked better than the oxycodone for my pain. My PEG was too tight, but they said I had to wait a week before they would loosen it. Once loosened, it wasn't as painful. For some reason it caused me to have acid reflux(I had never had reflux prior to PEG insertion). Most people have no problem with a PEG tube, but a small percentage of us do.

I am a fan of the PEG and it most certainly was the right thing for me; but I did have a problem. After insertion, I was in great pain-my whole mid-section was hard & swollen. The next day I rentered the hospital due to this; and in doing a CBC, found my WBC was very high. That generally would signal infection, Tests showed NO. They kept me overnight & on morphine. Final consensus was while being inserted, also alot of air got into the area and it takes awhile for it to absorb back into system. The high WBC probably due to the intense pain I was feeling. Home to recover-still very sore for many days. No way would I have been able to go to work! I don't think I've heard of a similiar experience? Gayle  

Refraining from work makes sense.  Overuse of any region of the body after being cut would cause swelling and pain.  Resting allows the body to heal.  Logic prevails on this one.

As for experience, my husband had the peg line inserted prior to any treatments.  He was very healthy at the time so recovery was quick.  However, his belly was bloated like most and tube was tight.  Unlike some others, his doc told him to come in to loosen it.  Once loosened, he was fine. 

Suggestions - apply topical anitbiotic cream (neosporin) around the incision cite before putting the gauze pad on until skin redness goes away; overlap the open part of the slit so it catches the "goo" better; use Medipore tape to avoid reaction to latex backing-expensive but good stuff insurance should pay for it is script is written; clean area and change twice daily checking for redness etc;

It does take quite a while to get used to it, but hopefully he won't need it for long. Unfortunately, at the current time, due to side effects from the radiation and subsequent remedial procedures, I am totally dependent on a PEG tube (and have been for over two years now), but I have one of the low-profile button types, which is the difference between night and day.

When water won't go in, likely the tube is clogged with something. If you don't have a clear tube, it is hard to tell. It's a good thing that you were able to use the plunger to get the "clog" cleared. Just make sure to flush with plenty of water whenever using the tube and get everything either liquid or dissolve your pills in water. The only things that will not work on are meds clearly marked "Do not crush" or time-released meds. You can even take capsules and open the contents and dissolve in water (for most meds).

As others have mentioned, it's important to keep the tube secured. Paper tape marked for sensitive skin worked fine for me, but I rubbed the area with alcohol before applying so that it would adhere better. If you let the tube dangle around, it will pull at your skin. The most important thing is to keep the area dry. I use a square of tissue and change it frequently throughout the day. I also use Neosporin with pain reliever and that has helped a lot with the pain of granulation tissue.

Any other questions, please feel free to ask, as it is a really difficult experience, takes a lot of getting used to, and there is not a lot of information out there. Also, check out oley.org. It has a lot of information about tube-feeding and is helpful.

This was helpful information for me too, thanks.

 

thanks to all for very helpful tips and advice.  after nearly a week today he is doing better.  the nurse at radiation gave him a stretchy bandage that looks like a lacy tube top (very sexy!) to slip on and keep the tube in place.  much easier than dealing with tape.  i will definitely check out the website...i hadn't found much info doing an online search.

~m