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

Pam

My sincere sympathy for your PEG pains. Everybody here knows I was a conscientious objector to PEG the first time around and I am still dismayed at how little attention and follow up, let alone any warnings, are given on the consequences of this elective procedure. Bleeding does not sound right. For what it's worth, your experience with the surgeon sounds similar to mine. I had to get the Director of Patient Advocacy personally involved at my hospital in order to get a new PEG put in correctly after my first one started leaking.
Again sorry for your pain and bleeding, how could you not help worrying about them?
Charm

Stomach cramping may be caused by a gas build up. When I first had mine put in I experienced that also. Try opening it up (while holding the end high) and let some of the air escape - that would provide relief for me. As far as the smell - yup - I would describe it as vomit smell also. Just that great smell of stomach contents/gas airing out. Once my diet was restricted to Ensure, that smell was gone.

Thanks, Charm and Carmen for replying. As I write, I'm sitting here wondering whether to even try to call the surgeon's office to ask about the pink liquid that's in my PEG tube now. I find myself imagining things. Going back and forth on trying to say it's from blueberries at breakfast.
Gross as it is, was very glad to hear you say you had the vomit odor too, Carmen.

Can I ask - do you have persistent fullness? I ate at 4:00 and feel I have no room for food (again), but HAVE to eat to get in calories. Should I perhaps try to find something less filling with more calories? As a diabetic, empty, sugary calories are out.

IF this is gas pressure, you can find out by taking some Gas-X (simethicone) in little gel caps if you can swallow them, or for babies they have it in a dropper bottle. It used to get rid of my gas pressure in about 25 minutes. If this is a chronic problem you want to be sure that your stomach actually has the ability to empty properly which can be caused by other things. I would try the drops first, see what happens. Simeticone interferes with the absorption of some other drugs and nutrients, so call your docs office for an OK if you feel necessary even though this is sold over the counter in any drug store.

Pam,
my hubby didnt experience any bleeding from the site, only leakage. im not a dr by any sense, but that doesnt sound normal.

the rainbow of colors in the tube sounds pretty normal.

its ironic how we went from getting more info than we could handle from the other docs to no info on the PEG. he wasnt even scheduled a follow-up appt. i looked everything up on the web, and as u are doing...asked questions here. it was the oncology nurses that checked the incision when he had the leakage, and they got us an appt to see that surgeon for a follow-up.

vommit smell...oh remember that one very well. none of our kids or my hubby could stomach flushing the tube/feeding because of the smell. it will pass when he gets on a more liquid diet.

the gas x is a great suggestion. i would open his tube periodically to release the gas when he was cramping. gave him relief instantly.

andy experienced tremendous pain/cramping with his PEG, but each day got better. pretty rough the first 3 or 4 days though.

Pam,

Don't worry about lengthy diatribes on these forums, they are the norm. Let your feelings and experiences fly...the more information you give, the better the suggestions here will be.

Bleeding should be a bad sign, as is the response you are getting from your medical professionals. If I've learned anything during this experience is that when I'm not dealing with my specific medical team, I usually have to resort to being an ass to get proper response. Of course I've spent my life in a service industry, when I don't get proper service from any "vendor" I'm dealing with they are going to hear about it.

You have to be your own advocate with some of these doorknob medical "professionals". If they are not adressing your concerns...and bleeding is a concern...then start to make some noise woman! Talk to chiefs of staff, department heads...I would demand this. These people are getting paid to take care of you, they better earn that money. I swear if I'd treated any of my guests at any of my hotels like these idiots do their patients, the hotels would be out of business.

If a dr doesn't address your concerns in a way that reasonably eases your mind, tell them you want to talk to the person in charge...now. If they refuse, it's a clear sign you need to find different care. If the surgeon isn't your regular dr...bring your concerns immediately to the head of your medical team and have them look into it. I love my ENT, anytime I had an issue I couldn't bark my way into solving, I called him and he would take care of it.

Be your own advocate and Good luck

Eric

It seems that the GI offices put the PEGs in and then don't want to do follow-up. We had personal experience with this situation and many others have written about it.

Listen to Eric and make noise. When the gastroenterologist was unavailable for a problem, I called everyone on our team and got someone to intercede on our behalf. What I eventually discovered was that the PA in the GI office was a wonderful resource. He was knowledgeable about PEG care and during one fairly serious problem (again MD was unavailable), the PA had us come to the office, and he grabbed one of the other MDs in the practice to check things out.

Home Care Nurses can help with PEG care. Do you qualify for any home visits? At least an evaluation?

I can tell you the pain is normal. I am also on the pudgy side of things. I did have cramping in other areas of my stomach for a few weeks. That cramping is gone now. I too had that awful smell with the PEG tube, and still do sometimes.
Onto the follow-up with the PEG, I wish I could help you there. I got very lucky and the GI Dr. who put my PEG in gave me his personal cell number if I had any questions. I have seen him a few times in his office without any appt, so he could adjust the tube due to losing weight and the tube getting too lose.
One the nutritional side of using a PEG I have not had any help except for on here.

I am very petite and getting the PEG definitely hurt me a lot. I cried during and had a lot of discomfort for a few days afterwards.
It all went away though and I got more comfortable with it. One thing that helped me was to wrap a piece of gauze around my stomach and pin the line up with tape- that way it didn't swing around and pull at my clothes. Yes the smell did smell like vomit.. its your gastric juices and that's what it smells like. kind of gross i know!

I'm sorry sorry you are gong through this. The PEG is your friend though and will help you through the rough times when eating is a chore not a pleasure. I know its weird and hard to get used to but it will make you feel soooo much better to get the right hydration and nutrtion. Being well fed and hydrated will really help with the side effects. It will make all the difference.

Hang in there!