Has anyone else had problems from their PEG tube insertion? Starting the first day, I've had horrible pains from that area and infection around the incision site (gross, but as much as a teaspoon and a half of pus--sometimes a bit of blood also--per day). Went on antibiotic treatment two weeks after insertion, which knocked the worst of the infection back, but still horrendously painful if the tube is moved or bumped in the slightest.

Had it put in 5 weeks ago, and the doc says he must have punched through a nerve in my stomach (I don't buy that, but guess it's possible) so he will remove this tube and install a new one (in a different location) this afternoon.

It was my understanding that these tubes are not supposed to hurt past the first day or two. Not with me.

Second question is tube length. All I can gather from internet research is that the tube should be around 3" long, maybe a bit more. Mine is 19" long from the feeding end to where it meets skin. I will ask the doc to shorten the new one, but does the tube length matter terribly?

I've postponed beginning radiation/chemo until this tube thing is settled, but I can't delay this too much longer.

Sharond, I am so sorry you have had such a tough time with your PEG. No, it is not supposed to hurt. After a couple of days slight of soreness from insertion, there should be no pain. As far as length, I am pretty sure mine was no longer than 20 inches, which made it easy to hide under my clothing. Any longer would have been completely unnecessary. I do not know what would happen if it were to be shorter. Good question.

Sharon, how awful about the infection and pain from your PEG. I think my tube is about 18 or 19" long too. A shorter one would be harder to use for the feeding I do which is gravity feed through a syringe. With it being as long as it is, I can hold the end up and out quite a bit which helps the food flow downward frmo the syringe and allows me to pour stuff in easily. Also when I want to remove the syringe, I fold the tube in half about a half inch underneath the opening to prevent stuff from sloshing back out. All of this seesm easy to do with the length I have and I think a shorter one would make it harder. But maybe that's just ebcause I have gotten used to this length. I know it seems wierd to have this long thing dangling from your body when you take a shower but you do get used to it.....

I hope your replacement PEG works better.

Nelie

My tube was about 6" long, of course it could be pushed in, but at it's maximum extension it was just long enough to allow me to use some paper tape to fasten it to my stomach under my shirt when not in use. I used a drip bag feeding system not a syringe, so the length of the tube on the feeding bag gave me all the flexibility I needed. Because I discovered that feeding quickly made me sick right away, I would slow drip in about 4 cans of Ensure and 3 more of water over 1.5 hours. I did this sitting up in a lounge chair since lying down during or for about 30-60 minutes after, caused problems also. I just tapped a nail into my wooden fireplace surround, hung my bag up, hooked up, and dozed or watched TV while eating.

I cleaned the opening in my chest/stomach on the outside in the shower each day with plain soap and water, and then when I got out I applied antibiotic ointment all around the opening as a daily routine. I never had any issues with my PEG related to its function or with infections. I cleaned it out occasionally with soda water and the syringe, always flushed it with several syringefuls of clear water after each use, particularly carefully if I had put crushed up tablets of meds in solution in the syringe. The residue could clog it easily. I threw away my bag each week and started with a new one, ditto my syringe. When it came time to remove the PEG I did it myself. I did not have a balloon type, but one that had a fine wire in the tube, which when pulled tight, caused the tube to "pig tail

O.K. I'm LAZY- rather than searching throughtons of stuff, do we have any pictures of different kins of pegs? Amy

Thanks for the info, gang! After reading a lot on this forum, I was ready for this 2nd PEG routine and knew what questions to ask. This procedure was done in a new hospital's outpatient wing, rather than a very old, ratty-looking clinic where I had the first one done. Doesn't make you feel too secure when a young gal that looks like a model (with half-inch-thick eye and face makeup on) gowns up while you're in the OR and asks out loud why the doc wanted her in there, since she wasn't an OR nurse. Yesterday's crew were professional to a T.

Also learned from them about some tube options and more info. I requested a shorter new tube, and one of the techs (male nurse? aide?) said I could have cut it myself, really easy to do, and that length didn't affect its use intrinsically.

I complained about the large, sharp, hard plastic clamp so close to my skin and they told me it wasn't necessary, I could remove it myself if I wanted to. He showed me how to get it off and back on, left it off, but put it in a bag for me to take home in case I wanted to use it later. He also gave me his plastic clamp (looks like a small pair of plastic scissors) to use if I just wanted to clamp it off briefly.

I asked about putting dressings under the bumper, next to the skin, to keep infection from those litte holes that are molded into the bumper (really bad design!), so they moved the bumper out just a bit to allow for the dressings, as long as I kept them thin, replaced them frequently, and didn't use dressings for too long a time to prevent skin irritation.

This time I did ask about a feeding bag ("feed bag" like horses use? Hah!) so I can slow-drip food in my recliner, rather than stand at the sink and try to inject it too quickly (with resulting gas and bloating/cramping). Think one could be filled with water, hung from my back somehow, and slow-drip water while I'm working in the greenhouse (takes me maybe 5 hours, two days running to care for the plants once a week)?

He placed the new tube dead center, rather than off to the left. Now I can bend over and sit without my ribs cruching down on the inner workings.

I also have zero interstitial trapped gas this time. That was killer with the first one! Before, I couldn't stand, sit or roll over without hollering for my husband to help me.

Really had my doubts about having this procedure done a second time, but now I'm soooo very thankful that I did! What a difference!

Thanks again, friends!

Sharond,

The tube is the one thing that I am pleased with in this ordeal. I've had mine for 30 months. The first year I had some leaking where the tube went into the stomach. For the past year, no leakage there at all although I still use a 2X2 cm sponge bandage to protect the area. Mine is about 14 inches long (just right). I wash around the area every day.
When not in use, I keep in in place under my shirt with Nexcare Durable cloth tape about 4 inches below my collarbone at top of chest. It holds very well and I only change about 3-4 times per day. I have to change more often in hot weather or if I am in strenuous activity.
I change the "Y-Port" this is the top where the 2 oz. syringe fits into for feeding about ebery 3 months. They are hard to find around here I get mine at the cancer hospital for revisits. Also loking for a thin brush to clean out some residue at top of tube just under the Y port.
But I must say I would be literally dead without it as I only take limited liquid intake by mouth since my tongue flap is tied down.

Jim Haucke
-------------------------------------------------- SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Hello fellow peg users, Like Jim, I've lived on mine for over three years now. I too started out with a 'pig tail' type tube, but I grew weary of taping it up and keeping it out of the way. I tried several different styles. I have gone to a tube-less peg called a Mic-Key.

This device is a nearly flat button with a small port on its edge, and another on its top. The side one is used to inflate the baloon inside the stomach. The top one is for chow. I have a tube that slides onto my syringe one one end, and clicks into the top of the MicKey at the other. The peg has a one way valve that keeps it shut until the end of the feeding tube is inserted and twisted into place. When done, unplug the tube, insert the attached plug and you are gone. I can scrub the tube, the syringe and all the fittings in the sink. Nothing to tape up, or fool with. The whole device, when closed, sticks barely one half inch above my skin and is smaller than the end of my thumb. It is truly the only way to go with peg tubes (for me anyway).

Remember folks, we peg users can always dominate conversation at the supper table!! And, we have the perfect excuse to NOT help with dishes!! Silver Linings!!! Be strong. Tom

Argh! Tom! I sure wish I knew about the Mic-Key before I got this 2nd tube installed! But our HMO probably wouldn't have gone for it anyway. I'm lucky they didn't go with a PVC pipe just jammed in there! LOL! Such a cool idea, especially for someone that needs to use it for longer periods of time. I'm still praying I'll only need mine for less than a year, but you never know.

I won't be able to dominate conversation at the dinner table, though. I guess if my throat is blistered and swollen enough that I can't even swallow, I sure won't feel like talking. Lucky for me I'm a quiet type to begin with?

Thanks for the chuckle, Tom. I needed it! Praying that your treatments go well--and quickly!

Sharon