CSN Login
Members Online: 13

PEGS for the Pudgy?

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hi all - got my PEG placed 12-24-2009. Experienced more pain than I'd anticipated - surgeon later explained (in a very kind fashion) that more tissue experiences trauma when you have a thicker wall to penetrate (straight-speak: fat people have more pain). OK, I can accept that. At 5'7" and just over 200 lbs, I'm fat.

Have since experienced on-and-off-again cramping, level with PEG site, but cramps several inches away, nearly to the side sometimes, not at incision site. I got no suggestions from surgeons when I brought it up - just that it wouldn't be caused by the PEG that far away from the incision and tube. Has anyone else had stomach cramping not at incision? Have also had two overnight bleeding (from PEG incision site) scares.

I have also noticed that I smell an "off" odor when looking at PEG tube or doing maintenance. Kind of like very mild vomit. Has anyone experienced this? I see no redness or pus when I clean the site nightly. I currently can eat, and just flush the tube with water once a day.

More than a little frustrated with trying to follow up with surgeon's office - the earliest appointment I could get was Jan 11, and they could offer no support over phone - ended up in ER 12-29 to have PEG placement checked (bled through dressings). Hokey, but I knew I'd be OK when the xray technician came to collect me for my close-up, and his name was "Innocent" AND it was his birthday. Two days later, experienced much more blood loss at night - doctors weren't in at all then (New Year's), so I just watched and waited - bleeding stopped, again. Surgeon on call told me he wouldn't be concerned (course not - not his blood). I've come up with a way to keep myself from moving during the night, and have had no bleeding issues for two days now (fingers crossed).

This amazingly wordy post is my way of doing some venting, and calling out to anyone who may have a similar experience that they can share with me. I appreciate any insight you can offer.

- Pam

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Please note that you can vent anytime you want to, that is your right and I think I would be doing the same if I was being treated like how I am read you are being treated. Bleeding is not normal, I can’t believe the Surgeon told you don’t worry about it. I wish I could help you more but I did not have a PEG when going through my treatment. Call you doctor and let him know what is going on.

Take care

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Thanks, Hondo for letting me spew - it's maddening - I called in to the surgeon's practice, and got a nurse with a "you're not an established patient here" line who assures me the drs see hundreds of patients, and I'm lucky to get in to see one in less than a month. They made time to do the procedure on me with no problems. So there's nothing they can do to help until my appt, and if I am concerned enough, I'll have to go back to the ER. At this point, I'm just looking for some answers to what are probably fairly common questions. I will try to call again on Monday, and see if the person manning the phones is more forthcoming.

Oh, Hondo - hope you don't mind that I dropped your name. I follow lots of posts here, and am heartened by your caring responses. I was in the Chat room today, and a new person (obviously Christian, crediting his survival so far to Jesus) came in, and seemed hesitant to speak up - I dropped your name, and said that you post on the H&N discussion boards.

Thanks again.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

I know that I am blessed and it is not by anything good that I have done in life but that Jesus died for sinner like me. To share him with someone else and to help them trough the tuff times in there life is the reason I believe my friend Jesus put me here. If anyone finds my friend Jesus because of one of my post I am happy for them and hope if I don’t meet them here in this life I will meet them in heaven.

Share anything you want about me, my promise to you and everyone else here on CSN is to keep you all in my prayers.
God bless

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Pam, when we chatted, you didn't mention cramping. Perhaps that is a newer development?

In any case, I can think of a couple of reasons for the cramping, and one of them might also be associated with bleeding.

The first thought is that I developed severe cramping when they replaced my tube with a temporary one in the ER, one that did not come with a bumper to prevent my stomach from swallowing the tube. Are you lacking one of these bumpers (it is really a small rubber disc around the tube at point of entry) or is your bumper loosely attached? From my experience I can tell you that the stomach is a powerful organ and has no problem with sucking that tube down, and when it does this DOES cause cramping.

The second idea has to do with something my wife wondered about when I provided your description of symptoms to her (she is a wound care nurse (more accurately, a Wound/Ostomy/Continence Nurse, more commonly referred to as an ET nurse in my neck of the woods). This was before I had read of your cramping, but it would probably fit: she suggested re the bleeding that you might be experiencing some gastro issues, that is, that your stomach is in distress for some reason (an ulcer perhaps?).

Just a couple of thoughts.

Best wishes with this problem, Pam.

Take care,

Joe

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

PEG bleeding?! I only had a trace on the day of the surgery. My PEG is located some 2" to the (my) left of my belly button, and maybe 1/2" higher. Not sure why you would be having a bleeding problem.

The pain is partially due to the PEG going thru the abdominal wall, which are multiple layers of very thin tissue that protect the abdomen area. I had problems with the pain for a couple days, but that cleared-up. The hole thru those tissue layers creates a tear, and can be painful.

Got my PEG in Jan. of 09, and finished treatment and last used the tube in early-April. Still have it. All the Drs. say I can have it out, but I nixed that- I wanna wait until after the next Pet Scan results. Is your's the balloon type? Heard they might be better than the button variety. Using 2x2 gauze and paper tape on only the top and bottom of the gauze, now, but used 4x4 during treatment. IF IT GETS PLUGGED, I WAS ADVISED TO PUT COKE IN THE TUBE, AND THAT WOULD OPEN IT UP, and that's from the healthcare people who managed my tube. Lazy man, I would go for 3-4 days between dressing changes, without a problem. Put peroxide on the tube area during the changes. Heard of another patient where I got rads who developed an infection around his tube, but I had no such problems.

Did they put you on 1.5 formula, yet? Heard that is commonly prescribed. I used the 4.0, which require far-less feedings/day, and is less expensive. Some people have trouble tolerating it (regularity issues). Would advise giving it a try. Instead of seven 1.5 feedings/day, I only needed four with the 4.0.

Any more issues- let us know.

kcass

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I started out with Jevity 1.2, then went to another company's 2.0. Eventually I got to Jevity's 1.5.

But this is not a history lesson. Rather it is about perspective: some people may NEED the 4.0 you suggest (I have not heard of that one). Some people may NEED the 2.0 I was given. My doctors certainly thought I was.

But the deal was, in my specific case only, the 2.0 from a different company did not provide the same additional elements (beyond protein) that the 1.5 did, according to the nutrionist who was eventually watching me lose weight dramatically.

Ergo, we lost the 2.0 of Ross something or other, and switched to the 1.5 of Jevity.

In my case, it was never a matter of convenience. If I needed to take 8 of one rather than six of another, then that is what I would do (or try to do: trust me, I know about the pain in the butt it is).

FYI: I got the same story re the coke in the tube, but I was also taught to use a plunger to push things down. It happens that the protein stuff we are talking about, the Jevity and the Ross, will turn to sludge and or concrete if the tube is not treated properly.

Someone I haven't seen in awhile was kind enough to post a list of things to know with respect to the PEG tube, and I now wish I had written them down.

Since I didn't, let me just say that it is key that you follow up intake with the tube by cleaning the tube. It is simple, really: follow each tube feeding with another beaker that is only warm water. It will flush the tube so that you do not get the gunked-up experience.

This said, I will only add that you should do everything you can to start eating as soon as possible, even if it is only yogurt and smoothies and ice creams...get those mouth muscles, throat muscles, working.

Take care,

Joe

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Pam,

I just posted the same response on another thread but I experiences pain in the first week or so like a cramp or like something went wrong with the PEG. Turned out it was gas trapped in my stomach which caused the pain.

You can check by 'aspirating' the PEG ie with the Syringe or simply by open your PEG over the bathroom basin and see if you have trapped gas escaping. It won't hurt you and may be the cause or the pain.

The bleeding is another issue and I fortunately didn't have bleeding. That sounds like it needs medical attention.

You will find when you clean the exit wound or Stoma, you will notice a small amount of dried pus or muck that may accumulate, but that is normal as the body is reacting to a 'foreign body' and will be send white blood cells to reject the tube. You can clean the area with Alcohol or Betadine as well as other things posted above. I assume they trained you on PEG Care ??

Hope yours settles down soon.

Regds
Scambuster

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Scambuster's advice might be perfect- pop the top off the tube and let gavity take it's course= drainage, and maybe escaping of gas. Worth a try.

As for the dried pus- crust-like stuff will always be in the area around the tube's entry into the skin, or at least it has been with me. I just use a toothpick to clear it, then apply peroxide. I differ from Scambuster in that- Drs. I have advise peroxide over alcohol, or anything else.

kcass

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Pam

Thats exactly how mine smelled the entire time I had it in. Like an infant threw up on my shoulder. You will notice that your sense of smell gets better. The puke smell is unfortunetly normal. It sounds like you are having trouble keeping it secure while sleeping. I used an 6 inch wide ACE bandage and wrapped it around so that the tube rested in a U shape between the Pec/breasts area. Also use wide cloth tape. Your tube may be in a different location, mine exited several inches below the left Pec muscle. I empathize with you on the pain, it was the most painful procedure I have ever had done and that includes a neck disection.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Alcohol is probably going to be VERY painful and also unnecessary.

Hydrogen Peroxide is a good starter for wound care (not for excessive bleeding or cramping, however), but Pam and others might want to consider other agents if their use of the PEG tube goes beyond a couple of months.

Some of the possibilities include iodine swabs, the aforementioned Betadine, anti-fungal agents, and, believe it or not, diaper rash treatments.

All of that depends upon the severity of the wound and the length of time with the tube.

The bleeding and the cramping, I maintain, have nothing to do with that.

"Burping" the tube, as scam suggests, works better in my experience as a way to redirect any vomit from coming back up. It turns out that your PEG tube has more than one good use: if you are feeling ill, open up the tube, over the sink, and let her rip. It will empty your stomach of content pretty much, and thus will also perhaps alleviate the nausea. I speak from experience in that regard.

With respect to the cramping, I am not so sure. But it is worth a try.

With respect to ratface's comments, it sounds as though he is either much more meticulous or has a much different experience than I have. I DO have a much stronger smell sense. I thought upon leaving the hospital, as I smelled tar and who knows what else to a degree I had not before, that this would pass. I figured it was because I didn't smoke anymore, or because I was just leaving a most pristine, sterile environment. This was not the case. To make the point: early on after surgery and during treatment, I attended a soocer game. I had to pay to get in, and so went to the little table where the prim and proper ladies were awaiting me. I smelled the faint whiff of liquor and advised my wife later that one of them was a day drinker.

This amazed me, but I diverge.

With my tube, I have been advised of late (I am a rather long-term user) that I should tape it up so that it cannot hang down and, over time, pull down on skin and cause additonal 'wounding' and even bleeding (not your problem right now, Pam). To date, I have not done so and have not had problems in that regard.

It may indeed be that RF and I have different sorts of tubes. Kent and I, it seems, have had similar experiences and medical advice.

Take care,

Joe

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network