PEG tube pain

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PEG tube pain

by Jason5 on Wed Mar 21, 2007 12:00 AM

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I had a PEG tube "installed" a week ago and I will begin my treatment a week from now. As you know, the tube is in place in case I need it later on in my treatment (daily chemo and radiation for 7 weeks). I have been experiencing severe pain as a result of this foreign object being in my body and would like to know if anyone out there has had similar experiences and what the cause / solution was.

The most dangerous situation is one where pain is experienced during the act of flushing or feeding. That does not happen. The site isn't swollen or infected either. But I get major sharp, intense pain that occurs when I stand up straight, breath in deeply, hic-up, cough, sneeze, wipe my arse or just move the wrong way. Sometimes it happens just out of the blue (like a spasm) If I eat fairly solid food I hurts big-time as well. A few days back I had a large spaghetti dinner and it resulted in a trip to emerg because the pain was so intense. I can understand that a batch of fairly solid food pushing it's way through my stomach and past the tube could cause pain, but why is it hurting so much the rest of the time. Could it be stomach acids?

I have seen a few doctors about it and no one has any clues. Even had an x-ray today and the Doc said it looked OK. So what's up? 

RE: PEG tube pain

by Woobie on Thu Mar 22, 2007 12:00 AM

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On 3/21/2007 Jason5 wrote:

I had a PEG tube "installed" a week ago and I will begin my treatment a week from now. As you know, the tube is in place in case I need it later on in my treatment (daily chemo and radiation for 7 weeks). I have been experiencing severe pain as a result of this foreign object being in my body and would like to know if anyone out there has had similar experiences and what the cause / solution was.

The most dangerous situation is one where pain is experienced during the act of flushing or feeding. That does not happen. The site isn't swollen or infected either. But I get major sharp, intense pain that occurs when I stand up straight, breath in deeply, hic-up, cough, sneeze, wipe my arse or just move the wrong way. Sometimes it happens just out of the blue (like a spasm) If I eat fairly solid food I hurts big-time as well. A few days back I had a large spaghetti dinner and it resulted in a trip to emerg because the pain was so intense. I can understand that a batch of fairly solid food pushing it's way through my stomach and past the tube could cause pain, but why is it hurting so much the rest of the time. Could it be stomach acids?

I have seen a few doctors about it and no one has any clues. Even had an x-ray today and the Doc said it looked OK. So what's up? 


Jason, I too had a peg tube but I am surprised that they put one in prior to your beginning treatment. Your body knows it does not belong there right now. I am not surprised that you are experiencing this  pain.  The problem with the pegs is that your stomach is now attached to the interior wall of you abdomen. I am one year out, and it is still tender when i do certain things, or eat to heavy. It is when you are at a point where you no longer can tolerate swallowing food, (if that does occur, many tolerate food by mouth for the entire radiation and chemo series, others don't) then the tube is a viable means for nutrition. Since you already have the tube in place, I would suggest eating much lighter, and supplimenting the calories with ensure or boost. Easily digested stuff will help I believe with your problem.  If not, hopefully your Dr. can figure out why you are having so much discomfort.  Cancer sucks and no part of it is acceptable, so whatever you have to do to make the situation easier, do it. Keep your calories as high as you can, you will need them later. I went from 210lbs. to 140. Ask your nutritionist to get you some Juven. It is a powder mixed with water that has good calories and helps a great deal with the loss of bone mass during this time. Get a head start on that. God Bless. Keep faith and lat me know how it goes.................angela

RE: PEG tube pain

by Jason5 on Fri Mar 23, 2007 12:00 AM

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My treatment is to begin next week. Two days ago I met with the Dr. who will be handling the chemo side of things. I complained to him about the pain and he sent me for x-rays. Sure enough there was the peg tube. And yep, it was in my stomach. The pain however remained a mystery. That evening I began to get what I can only describe as muscle spasms in my stomach, and they were SEVERE! There would be a series of them that would last for about one half to one hour then they would subside for about the same length of time, then return. This went on for over 24 hours. During this episode my day nurse (whom I've never met prior to this) arrived and witnessed this performance. She recommended an ambulance be called. I have already been to the local emerg days earlier and was looked at and sent home. Meanwhile my doctor was faxing an anit-spasm med along with more powerful painkillers to the local pharmacy so I chose that route instead of an ambulance ride. Today they seem to have lessened quite a bit. I am concentrating on mentally controlling the spasms and that along with these meds seem to be helping. I have talked to many people at the cancer center and no one has any idea of what's going on or how to stop it. Personally I think it's a combination of the tube tip poking the inside of my stomach and my body trying to reject this intruder.

RE: PEG tube pain

by Woobie on Fri Mar 23, 2007 12:00 AM

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On 3/23/2007 Jason5 wrote:

My treatment is to begin next week. Two days ago I met with the Dr. who will be handling the chemo side of things. I complained to him about the pain and he sent me for x-rays. Sure enough there was the peg tube. And yep, it was in my stomach. The pain however remained a mystery. That evening I began to get what I can only describe as muscle spasms in my stomach, and they were SEVERE! There would be a series of them that would last for about one half to one hour then they would subside for about the same length of time, then return. This went on for over 24 hours. During this episode my day nurse (whom I've never met prior to this) arrived and witnessed this performance. She recommended an ambulance be called. I have already been to the local emerg days earlier and was looked at and sent home. Meanwhile my doctor was faxing an anit-spasm med along with more powerful painkillers to the local pharmacy so I chose that route instead of an ambulance ride. Today they seem to have lessened quite a bit. I am concentrating on mentally controlling the spasms and that along with these meds seem to be helping. I have talked to many people at the cancer center and no one has any idea of what's going on or how to stop it. Personally I think it's a combination of the tube tip poking the inside of my stomach and my body trying to reject this intruder.

jason, if it were me, i would get it removed, and wait until it is really nessessary. it may never be.................many people have gone through this without the peg. you just might be one of them.

RE: PEG tube pain

by Defjoeb on Thu Mar 29, 2007 12:00 AM

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Jason,

I had a PEG tube installed before I underwent treatment also. Despite what others may say, installing the tube before treatment is very common. Many doctors do it as a precautionary measure. It is better to undergo the surgery before treatment and not need it than to have to go through the surgery when your immune system is weakened by chemo and radiation. Surgery always carries a risk of infection and it is very dangerous if you get an infection when your white blood cell count is low.

As for the pain, I experienced varying degrees of pain from my PEG throughout its stay in my body. Just keep the area clean, keep the tube clean, and let your doctors know if you see redness around the site. I found that I had more pain from the tube when I was hungry (which was alot of the time) or when the flange was too tight against my belly. Your stomach gets kind of spastic when it wants food and it tends to pull the tube in and out. Unfortunately your treatment and all of the peripheral devices involved are not pain free. Take whatever pain meds they give you and if the doctors don't find anything out of whack when they examine the tube you should be alright.

Joe 

RE: PEG tube pain

by Jason5 on Sun Apr 01, 2007 12:00 AM

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The spasms did subside after a couple of days. I have felt them since, and I agree about the hunger aspect. They seem to happen when my stomach is empty, now anyways. Before, they were at their worst just after I had eaten. I had another x-ray done, this time with contrast and it was done by a doctor who is a member of the team that installs these devices. As such, he seemed the most knowledgeable person I've seen so far regarding this situation. He said that the placement was fine however he did say that it isn't common for a reaction like mine but my body type is the prime candidate for experiencing one. I'm fairly young and fit. As such, it seems that my body is more apt to try and reject this foreign entruder, thus the spasms and other related pains. So...not much can be done to avoid such a thing. If anyone reading this has a similar reaction, I can recommend a couple of things. Anti-spasm medication (called Buscopan here in Canada and available over the counter), an antacid (not sure if this had much of an effect but was something I was taking to find relief), and the most effective thing was fine tuning the ability to concentrate on the stomach muscles that were in spasm and mentally will them to relax. This is easier said than done but it worked. During a spasm, the muscles tense up like a wicked cramp, so it takes quite a bit of effort to relax them at the same time that they're trying to tense up. But it can be done.

RE: PEG tube pain

by Defjoeb on Mon Apr 02, 2007 12:00 AM

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Jason,

Glad to hear the pain is somewhat under control. As I said, you will experience varying degrees of pain from varying sources throughout your treatment and recovery. Don't worry though, it will subside and the pain meds that are available now are great. This will all be behind you before you know it.

Good Luck!

Joe

RE: PEG tube pain

by katy59 on Sun Apr 04, 2010 04:18 AM

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I have had a peg feeding tube in since Feb 16th and I have been in excruiating pain every since they put it in.  My dr. tells me there is nothing wrong with it because it flushes fine and won't even look into why I am in so much pain.  I have sharp stabbing pain in my whole upper body and have had a severe headache since day 1 along with both ears hurting.  I have mine because I am malnurished and I have to gain 10 lbs. before he will take it out.  I really sympathize with you.

Jerri

RE: PEG tube pain

by TechMasterJoe on Mon Aug 02, 2010 07:18 AM

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i to have really bad sharp pain with my PEG tube

has only been 72hours but i CAN NOT stand up all the way and

takes me 60mins + to get out of bed

i have tonsil cancer and have done 1 week of treatment so far

i had a CT done to see if some thing was wrong with the tube all was good

today i notice just how much it's trying to pull the stop in so i fed maybe 2 cm of tube in and 80% pain stoped after talking with some people(both work in ER)  sometimes the tube can be to tight or to lose and hit nerves. my tube is at 7 cm (i still don't think i need it as i can eat fine so far and only 5 weeks left + im 40lbs over anyways)

RE: PEG tube pain

by tristeve on Wed Aug 04, 2010 09:29 PM

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Hello Jason< I too had lots of pain the forst couple of days. then it was better until I laughtd. The doctor explained it this way...

Your stomach use to float freely in your chest cavity. Now it "buttoned" to your chest wall, every time you move or shake it pulls on the button. After a while it should get better, mine never hurt after a couple of weeks. I did look like a Borg though with this big pipe comming out of my chest.

I did learn to love mine, it saved my ^%R#!!!

Steve

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