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PEG Removal advice please

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

HI all,

I plan to get my PEG removed next week and wanted to hear from those who have had theirs done re: what to expect in the pain side, recovery time, stitches etc.

I am in my 8th week out from completing treatment which was 7 weeks of RT (70 Hits) and Once a week Erbitux. Have had the tube in since week 3 of treatment so approx 12 weeks total. I have a little bit of pain around the insertion point probably from the PEG getting hit and pulled by clothing and picking up my kids. There is usually a small amount of muck around the entrance which I clean regularly when I redo the keyhole dressing.

I'm feeling OK and eating reasonably well - softer foods always with soup or water on hand as I have the dry mouth issue. I am still putting a feed of Vitashake with Vital Greens in the tube once a day but I can drink the shake now so am not concerned about maintaining and regaining the 20kgs I lost during the treatment and weeks after.

I intend on international travel about 8 days after the removal so recovery information is a priority.

Any information from those who have had the PEG out is warmly welcome.

Thanks in Advance.

Scambuster.

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

There are a couple of different ways that pegs are held inside the body. From my understanding, one uses a balloon like bladder that can be deflated and then the tube is just pulled out from the outside. The other uses a plastic disk to hold the tube in place. This is the type I had. When they removed it, they just had me lay on the table and they pulled it out. It hurt for a few minutes after then they just cleaned up the area with peroxide and put some gauze over it. I just had to change the gauze until the hole closed up. It did this on its own, no stitches, no nothing, in a matter of days.

I started singing, "There's a hole in my belly dear Liza, dear Liza, there is a hole in my belly dear Liza, a hole"

Once it heals it will look like you have a second belly button and you might end up with a slight scar.

When I heard that you are awake for this with no numbing anything I asked for a bullet to bite on, but the doctor didn't have one, he did offer me a stick.

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Sash is right on the money. I just had mine removed 2 weeks ago. Same deal with the little button holding it on the inside. Had mine is for 12 weeks as well and yes mine was a little tender around the stoma as well. Doc just had me lay down, asked if I was ready and 3 seconds later was holding it up showing me the "button". Burning and stinging for couple of minutes then he just covered it with a pressure bandage and said not to eat or drink anything for 4 hours. Changed dressing following morning, little bit of blood but by next day dressing was dry. Took it easy for couple days but that was it. Glad it's gone and no problems. I made a bigger deal out of it before it was removed than I needed.

Mike

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

Thanks Sash & Mike. Mine is also the disc type. Has a funny little clip over the disc on the outside. On the inside I saw it was a white disc (they video taped the Endoscope when they inserted it so I have a DVD of this snake with a light attached going into me inards)

I gather you guys went home the same day. I was under the impression they would knock you out or at least partially and throw a stitch in. I will have mine done in HK so will let you know how it goes but it will be a relief to say Bye Bye to my tube. Many thanks again for the replies.

Any further contributions still welcome.

Cheers and tx
Scambuster in China

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Drove myself the 50 miles down to the surgeons office that had put the thing in and when he removed it he was wearing his sport coat and tie. I asked him to give me the short version of what he was going to do and then he just put on a pair of latex gloves, grabbed some gauze and asked if I was ready. I said pull away and 3 seconds later he was holding it up for me to see. No stitch, just the pressure bandage. Said the stomach heals really fast but to keep an eye on the hole on the outside for excessive moisture. (Said the worst thing would be if some stomach acid happened to leak out there but that is rare) Main thing was don't eat or drink for 4 hours which was tough as I also thought it prudent not to eat before I went as well. Had a light breakfast, nothing until appt. at 2:30 PM, ate some mashed potato's and cream style corn around 7:00. Next day ate normally but decided to forego my "pack the pounds back on" philosophy for a few days. Been fine ever since.

Mike

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Sash, Scambuster, Landranger, and all others w/feeding tube experience: when you had your tube, did you typically see fluid in it in the lower-2"? You say they just pull it out, and I'm thinking I'll have fluid from my stomach making a mess of my innards around the tube. AND HOW LONG IS THE TUBE INSIDE- FROM THE SKIN TO THE STOMACH? I'm a couple months away from my next PetScan, and if it comes back okay- will then get the tube out (it's been my decision to keep it as long as I have, in case more treatments are necessary)? And, I gather it's not the sort of thing one can have done, and go back to work- do they advise you to lay down/be horizontal as much as possible?

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

Hi Kent,

My tube sticks out about a foot. The sealing device ie the ratchet like device that stops back-flow is about 3" out from my stomach. This can be adjusted to be closer or further.

If you 'flush' your tube after feeding with water using a big syringe, you will only see water in that segment of your tube i.e. between the ratchet and your stomach wall. If you don't flush with water, you will see what ever it was you used as your feed.

On the inside, the tube will end with a disc that holds the tube to the inside stomach wall. Normally the disc will always be flush against the stomach wall as you also have a disc on the outside that should be or almost be flush against your skin although they may leave 1/4 to 1/2 inch gap to allow for movement and the keyhole dressing. Sort of the same theory as a 'Pop Rivet'.

As for stuff leaking during removal, I can't really say but I would assume the tube would be flushed with water prior to removal or even perhaps evacuated (Aspirated) to empty it prior to removal. Also I think we need to fast for a few hour prior to removal so that part of your stomach is empty. Sash and Mike might be able to add something here as they are veterans.

Cheers
Scambuster

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

The distance from what you see on the outside to the little button on the inside was only about an 1" to maybe 1-1/2". (from button on inside to little flange that rested against my stomach on the outside. The Doctor did not flush before removal. I ate a light breakfast in the morning but nothing after that. (per advice from Doc's nurse when I set up the appt. to get the thing out) I could easily have gone back to work and when I asked the Doctor what kind of physical restrictions there were he sadi none. (Mind you I'm just a CAD monkey and not a ditch digger or anything) I'm guessing that when the Doctor begins to pull on the tube that there is some kind of function in the button that closes it off. The little disk/button has to change it's shape in order to fit through the 1/4" hole in your abdominal muscle and skin. Button was maybe 1/2" diameter. Other than burning and stinging, maybe from any stomach acid that was on the button, for couple minutes there was nothing to it.

Mike

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Thanks for the info. It doesn't sound so bad, afterall. If the button, itself, is somewhat flexible, maybe it collapses around the 1/4". Sounds like it should go down without any complications. Thanks again.
kcass

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

Hi Guys,

I just arrived home (from HK) after PEG removal yesterday and PET/CT this morning. I think they gave me the soft option (and Expensive one for my Insurer) and knocked me out for the removal of the PEG. The Anesthetic was very light and hurt my arm like hell.

From your descriptions, I really think the anesthetic hurt more than if he just pulled it out like you guys had done. So ... I went under and woke up 10-15 minutes after and got wheeled back to my room. The Doctor did put in a couple of stitches as the outside hole remained very 'round' so he decided to wack a couple in to make sure there was minimal leakage. I have a waterproof patch over the wound and will go back in a week to get the stitches out.

I feel like the old Milking Cow has given me a good kick in the guts but apart from that I'm all OK. I got my PEG delivered by the nurse in a bag as a souvenir. The distance between the two flanges was about 2.5 inches. A little more than I thought.

Now for the good news (which I will repeat on a couple of other threads) is I had the PET/CT this morning and got the ALL CLEAR by 3.30pm ! What a load off. I think I went into a weird silence from leaving the Hospital till I made the phone call 4 hours later and probably wasn't breathing properly. It's a nasty wait with all the thoughts of 'what if...' Anyway I am a happy camper tonight.

Hope all is good with you all.

REgds
Scambuster back at home in China

pk's picture
pk
Posts: 192
Joined: Aug 2009

Congratulations on the good news. And yup, I think you should have just had them pull it. My husband did and didn't feel a thing. Oh well. Happy to hear all is well. PK

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Good to hear the good news for you. "All clear" are two sweet words.
Did you have the 1/4" tube? 2 1/2 inches from the skin to the stomach seems like a lot to just yank out, so the anesthesia sounds like the right thing to do. Do you still have a Port? Figured they would have administered thru it, rather than the arm, if you had one.
Again- we are all glad to hear your good news.

kcass

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

I have been reading this post since your first post and have found some great info to pass along to my dad. My dad, who has tongue cancer, had just gotten his PEG right about the time you were thinking about getting yours out! I have been wondering how exactly they took it out and how it was kept in place. It's good to know that there is more than one way to take a PEG out! Anyway, I am so happy for your ALL CLEAR report and that your mind can rest easy...at least until the next one! Also, I wanted to know where you received your treatment and where you are originally from. That is if you don't mind sharing that info! My dad is doing well with his PEG and started his radiation on 12/3. He hasn't had to use his PEG yet but expects to around the third week of radiation. In a perfect world he will be done on 1/25/10 but, I understand sometimes that doesn't happen so we are hoping for Valentine's day! Anyway, I hope you and yours have a wonderful night and enjoy your ALL CLEAR report!

Thinking positive!
Lisa

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

HI Lisa,
As you've probably gathered by now, most PEG's are removed by the "are you ready?" and then they just yank it out. The option which I had was to be put under. As I required a couple of stitches as well, that was fine by me as I understand that part of the stomach is hard to administer a local Anesthetic (not confirmed).

As for looking after the PEG, I used to tuck mine into the top of my jocks to the side. The valve mechanism is the largest attachment and if it gets stuck under the belt line it can cause some discomfort but you simply adjust it as you go along. Sometimes the PEG will 'pull' at the Stoma (where it goes in) if there not enough slack left in the tube or someone or something catches it like carrying kids or shopping bags etc. THis can contribute to some inflammation but as long as the Entrance port at the stoma is cleaned and disinfected regularly you rarely have a problem. Mine was a 1/4 " tube (For Kent)

I am from Australia, live in China just over the border from Hong Kong. I had all my treatments done in Hong Kong at the Adventist Hospital on HK Island at the AmMed Cancer Centre. I had an ENT Doctor in Jordan (HK -Kowloon ) diagnose me and referred me to an Oncologist at the AmMed Clinic. I also have the Radiologist/oncologist. They have all the latest gear and I underwent IMRT so I got the Radiation twice a day for 7 weeks (5 days a week). I would say your Dad will get 7 weeks of Radiotherapy also. it appears the most common period noted on many of these pages. The last 2 weeks were a little lighter as they reset the target to hit only the precise area where my tumor was cut out so I had a new mask made and the Team reset all the firing lines. I noticed the difference. That is why weeks 4-5 are usually the hardest as you are worn down by then and all the feeding issues have set in well and truly, weight loss, pain etc Not a fun time but we all get through it and things improve.

If your Dad needs to start using the tube I hope he tolerates the products most commonly used like 'Ensure' etc I didn't and had to find an alternative. There are alternatives.

Just remember that you Dad will suffer also after the treatment is over. The first 2 weeks post treatment are usually the worst so just keep that in mind because you think once you finish your last rad .... Yahooo ! which is true BUT most of us still have the pain, eating difficulties and other issues to deal with and the apparent lack of change or improvement can be very demoralizing> Hence keep an eye on that time especially his emotional state as depression is rampant at some stage in this treatment regime and should be addressed quickly. Mine hit on the second week out and luckily I was diagnosed and treated accordingly. Some people sail through without a problem and I hope he does but keep your antennae tuned in and learn what signs to look for.

Well I've delivered more than asked here apologies for the rant but i wish your Dad all the best and I'm sure you will take good care of him. Remember the gang are all here ready to offer advice from their experience so keep us updated.

Cheers for now.

Scambuster

JGE
Posts: 50
Joined: Mar 2009

I had my PEG removed 4 weeks after treatment. Docs wanted me to leave it longer but I couldn't stand the thing. My doctor did give me a shot of Lidocaine for good measure but I probabaly didn't need it.

I had heard of people getting a stitch or two to pull it together but the doctor wouldn't/didn't do it. He said it would heal funny or something. All I heard was "no". After it did heal, I thought it looked terrible. I mean, I didn't mind the large scar on my neck or the scar from my Chemo Port, but I HATED my PEG tube scar. It was, in fact a second belly button. I went back to the doctor and had them cut out the scar tissue and sew it back together. Looks awesome now. Just a small line.

I got grief for doing it because I should be (and am) just glad to be alive. But the psychological effect the cancer has, doesn't need any more help from a constant reminder staring at me every morning in the mirror. I love the outdoors and spend half the summer with my shirt off. So I decided if I live forever then I will be happy I did it and if my life is cut short it wont matter either. After cancer... you do a few things just for yourself.

Looking forward to next summer and my usual outdoor activities.

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

Thank you fo much for sharing a little more about yourself! It is always nice to have some background about you and your experience with cancer. My family and I are in the Columbus, Ohio area. And my dad Tim is being treated at Ohio State's James Cancer Hospital. So far he is doing well but, as I told you before he just started his rads on 12/3. He will undergo radiation and that is it. Which, we were happy and suprised to hear! The oncologyst told him that because they caught the cancer so early (stage II) and it hadn't spread that radiation was all that would be needed. I am so happy that he only has to undergo the radiation because that will be hard enough. Anyway, I just wanted to say thank you for the info and let you know I did in fact enjoy reading you "rant" as you called it! Hope everything is well in China!

Thinking positive!!
Lisa :)

jeb54321
Posts: 22
Joined: Sep 2009

I had my tube removed - by my son.

We were playing a computer game, he got distracted, turned and ran, and the tube was wrapped around his foot.

Initially I was terrified, and figured I was going to die. Mainly, I had a TON of problems with my tube and a ton of pain, so in those moments when I realized that all that work had been for nothing, I was in despair.

We called 911, but once I was settled in the ambulance, I realized I didn't have any pain. The design of my tube is that it has a string connected internally to the tip of the tube, and apparently a stiff spring or other material to make it straight. When they pull the string tight, it curls up so that it looks like a big spring, and that curling shape is what holds it in. When my son tripped over my tube, it just slid out.

There was a little blood, but as they informed me in the emergency room, the stomach seals within about five minutes. In my case, by the time the ER people were able to get to it, my stomach had closed and I had to be admitted and return to interventional radiology to have the tube reinserted. MUCH more painful the second time because they didn't put me under. But it was done in a few minutes.

Long story short, there is little to fear from removal, at least for the type I had, and I am truly looking forward to that moment as a real landmark of my progress.

lyolan1
Posts: 95
Joined: Jul 2009

Hello ScamBuster, Wow, it sounds like your case is identical to mine. I just had my tube out yesterday 12/11. I was nervous because my insertion point was also very tender. I thought it would be painful. In reality it was quick, easy, and painless. I also had 7 weeks of rads and 1 per week Erbitux. I was 6 weeks out of rads when I got the tube out. I have been eating solid food for a few weeks now. My head oncologist in Boston said that the quick recovery was due to IMRT and Erbitux. Sounds like you did very well. Congratulations. Alex.

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

When I went to my family Dr. this yesterday (Thurs.) He was not familiar with G tubes. In fact he had never seen one before. I live in a rather remote town of 3,500, with only 4 Drs.

He was not sure about how to take it out , so he called the other Dr. in the office to take a look, and HE wasn't quite sure about how to remove it. So he said well...lets just pull it and see what happens!!! Of course, I said that's OK, I'll wait till next week. So I had to call a nurse at the cancer clinic where I had my treatment (Victoria, B.C. Canada), where she faxed the Medical office here to tell them how to do it! Talk about scary! So, I will see next Monday.

Cindy

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I'd have been a little leary of the Doc experimenting on me as well. As you've read above, not a huge deal. I looked at me PEG removal as a huge step in my recovery as I'm sure you do too. Good luck next week. It will all be just fine.

Mike

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

Alex,

Glad to hear your PEG is now history and you have a flat tummy again ! Did you get a stitch or two ? I will go back on Tuesday to get the stitches out and check all is OK and then we fly home to Australia for about 5 weeks so am looking FWD to getting to swim in the beautiful Pacific Ocean and hope to rebuild a bit of muscle I lost during the last few months. I am finding it hard to put on the lost weight as my diet is very healthy now and mostly vegetarian. I might look into weight gain Protein Shakes to supplement the diet.

Sounds like the IMRT + Erbitux is a good recipe. I know there are even newer drugs (The next Generation) of a similar category as Erbitux as on more than one occasion, dark suited sales reps from the Pharmaceutical Co. were in pushing their wares onto my Oncoman.

Anyway good news all around on your quick bounce back. How did you go re Salivary glands. Mine must've been been hit hard as I have the perpetual 'Dry mouth', but will be seeking some acupuncture and will commence a course of homeopathics to see if that helps restore some function.

Have a great Xmas up in your colder part of the world.

Regds
Scambuster

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Ok all of you that have had it out for a while how long did you put dressings on it. Had mine out 12/23/ 2009. Yanked it out and hurt like hell for about 10 seconds. Then they cauterized it with silver nitrate and that belly button thing fell off the next day. But what I'd like to know is how long did you keep changing the dressing, a few days, a few weeks?

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

Holy Cow! I can't relate to what you had to go through to have yours out. I just went in, laid down and the Dr. had to cut a string that was attached and he pulled and whamo, it was out! No pain at all. No bleeding. He put a small dressing on it and told me I should keep an eye on it, and before I knew it, it was healed shut within 2 days. I may have had a different type of feeding tube than you, but it all went fast and well for me. I hope yours heals up quickly. Just keep and eye on it for a start of infection.

Cindy

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

I kept the one the Doc put on for 24 hours. That was a pressure bandage. For 2 days after I just put on regular band-aids out of the can to keep lint out. Was able to shower OK every morning and then put a new one on. I also avoided lifting anything. Doc said no restrictions but seemed like a good idea. Stomach muscles felt like I'd done a bunch of sit-ups for a couple days after the PEG was removed. Should be a breeze. (wish I'd had the one like Cindy had)

Mike

fishingirl's picture
fishingirl
Posts: 188
Joined: Nov 2009

lol!! Yes, by the sounds of what other people had to go through with there's...I'm glad I had what I had too! lol!

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

put on after the PEG was removed. They dressed it overnight and cleaned it in the morning, then put a small waterproof patch over the wound and said leave it on till you come back next week to remove the couple of stitches they put in. After the stitches were pulled, I had another one on for a few days. When i removed it 3 days later, I had a tiny bit of 'crust' in the hole that washed away in the shower and I've been good since. Been in the local rock pool (Seawater) a few times since. Great to have it gone.

Regds
Scambuster

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