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the feeding tube or "Peg"

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

Ok people, my boyfriend tried and tried and just hasnt been able to go the entire distance.
He is 10 days out of a 6 week radiation treatment, 1 chemo a week.
He is so very miserable and in agonizing pain even with pain meds. He isnt taking in any noticable nutrition because its too much pain to swallow. Throat and mouth are raw, like chewing on and swallowing chards of hot glass.

So, having said that, he called his Dr. and told him that he will now consider the tube.
tomorrow morning as I stated in another post, he will have it put in.

For me, I live 8 hours away from him. I want to know, whats it look like, how much tube sticks out, where is it placed, how wide is the tube anyway, what extra parts are used, all the particulars. I just want to know what to expect when i go there to see him, or when he will allow me to see him, thats a whole other issue though.

Talk to me everyone, I see you all refer to it, so tell me about the tube.

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

My husband is 5 weeks post rad and had his g tube placed prior to starting treatment. It is a simple procedure to have it placed with some discomfort afterwards, but nothing severe. Healing occurs quite rapidly. It was very easy to use and keep clean and was a life saver those last weeks of radiation and the first weeks after treatment. He has not used it for about 2 weeks now and will have it pulled out this week. I am glad to hear he will have it place - just too bad he didn't do it prior to treatment so as not to have another thing to deal with now. PK

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

What shows on the stomach is small. A foot or less. THe food peg was placed below the sternum near the lowest rib on the left. Mine had a thread sewn into my skin to help hold it in place. It is easy to clean. I can honestly say that it never interfered with anything. It truly was a life saver for me. Don't get me wrong... from what my wife told me this morning I was against placement when first formulating a plan. I told the doctor that I would force myself to swallow. Thank goodness my wife put a stop to that kind of thinking. I honestly do not remember saying I was against it. I think I was in shock from the diagnosis. There are/were a lot of things that are foggy as far as memory is concerned.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey there,

My husband is finished with tx but had his tube put in before we started treatment. I was curious too how it would look, so I googled it and was able to see pictures beforehand so I was prepared and not shocked afterward which helped him. Since we both new what to expect. He will feel so much better when he gets nutrition. I am glad we had ours put in before we started treatment as my husband was able to have his removed two weeks after tx ended. It really helps speed up the recovery process. And really the tube is not big deal. Good Luck and Godspeed

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey there,

My husband is finished with tx but had his tube put in before we started treatment. I was curious too how it would look, so I googled it and was able to see pictures beforehand so I was prepared and not shocked afterward which helped him. Since we both new what to expect. He will feel so much better when he gets nutrition. I am glad we had ours put in before we started treatment as my husband was able to have his removed two weeks after tx ended. It really helps speed up the recovery process. And really the tube is not big deal. Good Luck and Godspeed

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey there,

My husband is finished with tx but had his tube put in before we started treatment. I was curious too how it would look, so I googled it and was able to see pictures beforehand so I was prepared and not shocked afterward which helped him. Since we both new what to expect. He will feel so much better when he gets nutrition. I am glad we had ours put in before we started treatment as my husband was able to have his removed two weeks after tx ended. It really helps speed up the recovery process. And really the tube is not big deal. Good Luck and Godspeed

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

I'm about 4 weeks out from my treatment (33 radiations, 3 chemos over 6 weeks) Peg and port were put in about 3 days before first chemo. PEG tube is about 5 inches straight up from my belly button with about 6" sticking out. Little cap on the end and a clamp to keep everything in that should stay in. It's very flexible and I use a small strip of tape to secure it to my abdomen. Didn't use the PEG until about midway through 2nd chemo. Even with PEG I lost about 10-12 pounds each chemo. I never lost the ability to drink but between the nausea and mouth problems couldn't eat. Used Osmolyte and a syringe every hour I was awake. (2 oz. water and 2 oz.osmolyte) Should have done more just couldn't without throwing up. I was able to eat soup about 2 weeks after my last radiation treatment. Just kept trying different things and drinking. I believe that because I kept drinking I "exercised" my throat muscles and this has really helped me. I have gained back 10 of the 35 pounds I lost during my treatment in the last 2-3 weeks and my PEG comes out Friday.

Mike

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

is throwing up common? why does that happen? Is that from putting too much thru the tube at one time? like eating too much? I read here that the pain of putting it in would only be a couple of days or so. He just now had it done about a couple hours ago, and feels like he was kicked by a horse. I suppose because he feels terrible overall, no substantial eating, although this morning did NOT say that sleep was horrible. he said not bad. he said that a couple days ago as well. Pain is still his personality right now so he doesnt see that as a good sign.

He really thought he could do it, but he is tired of the pain, it has gotten so old.
I know its just another thing to deal with, but I am sort of relieved that it went ok and that he has it. He is there for overnight tonight. I wanna see pics, so Im gonna look online here.

thanks everyone!!!

Kathy (thegirlfriend)

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

My husband had a bit of trouble with nausea when first using the tube, but then started taking some anti nausea meds and they changed his nutritional supplement and that ended that problem. He did not use the anti nausea meds for more than about 2 weeks.

The chemo can certainly cause nausea as well as radiation, but I think the stomach also has to adjust to having food dumped directly into it.

Hopefully he will or was given something to help with sleep. My hub took his sleeping pill almost every night during the last 2 weeks of radiation and the 2 weeks post. It helped him get thru the night fairly easily.

According to the posts I've read today it sounds like several people are having their tubes pulled on Fri. Yahoo!!!!

Does your boyfriend have anyone with him to support him thru all of this? I can't imagine going it alone.

PK

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

my boyfriend has me and he chooses not to let me see him during all of this. I have not seen him since the week 2 of treatment, the first week of Oct. Yes I know, I dont like it either, but its not what he wants. He has lived for 10 years alone, before I came along as his girlfriend. We have been friends for years. He has 1 person that lives near him, that is his best friend/pastor. Other than that, he doesnt want alot of people around him. He has done remarkably, not always, but mostly, with calling me daily. Now he cant speak well without his mouth filling up with mucous so fast from talking. We mostly text. We sometimes go days without voice contact. Its the hardest thing I have ever had to work thru but for him mentally right now, getting thru recovery now came after only cancer treatment was #1. He is retired military and cop, and is used to being focused. The only thing he has been focused on since Sept has been cancer. I sometimes wonder what God had in mind when he and I began seeing each other in Jan. Jaw pain started a few months after. Hmmmm. Oh Im his cheerleader but I just cant go unless he wants me there, so much of his control was taken from him, thats the only reason i dont just go.
He cant entertain me, which makes him anxious, he does all of his protocol with his mouth and meds alone and doesnt need to be nagged about doing it. I know I dont have to worry that way. So to him, there is nothing for me to keep me from being bored at his home while he sleeps every few hours, and is grouchy the rest. I know that I dont like constant fussing when Im sick, but knowing someone is in the house, makes me feel better. He is not like that, he is used to being alone. So here I sit, waiting for him to be ready for me to see him.

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

He sounds like quite an amazing guy!!! Once his treatment is over and he gets thru those first couple of weeks post, I bet he'll be ready for some company. The recovery is long long long, but each day gets a little better. PK

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

this morning this is what i got on my txt messages.

"feeling better 2day, waiting for the dietician/nutritionist then home hopefully."

I almost fell out of my bed. I bet they have been feeding him bags of fluid since he got there 2 days ago. probably why he is feeling better. imagine what feeding your body can do for you. go figure.

thought i would share. happy veterans day to all of you who here who qualify and the families that support you.....everyone here seems to be fighting the same battle. That war will end when a real cure is found that wont make you feel like the cure itself is killing you!!!

jeb54321
Posts: 22
Joined: Sep 2009

I figure that the more information the better, even if it isn't always encouraging and positive.

I was very lucky. My treatment went VERY smoothly, successfully as far as I can tell almost two months post treatment, and I have recovered more quickly than the doctors have ever seen.

My two problems have been getting my taste back (I'll talk about that elsewhere) and the TUBE.

When they "installed" it, I went in the weekend before treatment started for an 8:00 out patient procedure to put in the tube, and was there until 4:00pm. The pain was INCREDIBLE. I had what they call an "episode" while I was under, so they would not give me pain meds. I was sent for an emergency CAT Scan to make sure they hadn't punctured something they shouldn't have.

They eventually controlled the pain and let me go home, but I continued to agonize with it until they eventually agreed to remove the sutures a week early, which immediately relieved most of my pain, if not my discomfort.

I won't bother with the details of my son tripping over the tube and yanking it out a few weeks later, causing me to be hospitalized for a reinsertion, which was likewise incredibly painful, and I was AWAKE. The good news: it tolerates being ripped out very well - in fact, that was the LEAST painful aspect of the process, and I look desperately forward to having it removed.

Its been very uncomfortable the whole time, I have blood blisters from the tube "riding" in the insertion point, and it has probably (in hind sight) been the cause of more than the lion's share of my nausea throughout the treatment.

Someone asked about throwing up. Again, I was unusual and blessed in that I have very little pain. Just a "scratchy" throat. However, whenever my throat got scratchy, I would throw up. And just about anything, like the dry air conditioning at the treatment center or in a store, would cause the dry "tickles" that led to nausea.

I was also "challenged" (so I misinterpreted) to deliver eight cans of nutrient a day. I was overweight going in to this process. People joked it was a good thing because I lost close to 40 pounds. However, it was in part the reason for the nausea and constantly losing my "formula" because yes, there is a very real limit on how fast you can pump this stuff in and process it. Turns out, I could barely tolerate 45ml/hour, which when you do the math, means there is NO WAY to process eight cans of 250ml of fluid in 24 hours. But it took a while to figure that out.

They also switch from a fiber rich formula to a pre-digested formula in hopes of lessening the nausea, which lead to constipation, and a FOUL taste when I did throw up.

I have completely recovered all the mechanical swallowing mechanisms. They told me it was if my throat was never even exposed to radiation. However, since my taste has not come back, and my saliva glands were knocked out, food tastes TERRIBLE to me, and textures are unbearable. Although the speech therapist says my swallowing mechanisms work fine, my mouth doesn't know what to do without saliva, and now my single biggest struggle is finding enough things I can eat to justify removing the tube.

So far the only tastes I've tolerated are orange juice (the strongest tasting orange juice I have ever had in my life), jello, and cinnamon toast - but the toast is very hard to swallow, and tickles my throat, causing me to revert to pain meds to avoid nausea.

Getting rid of the tube, though certainly it was a lifesaver since I have not eaten solid food by mouth for MONTHS, has been my greatest challenge.

Thank God for the tube, and I can't wait to get it out. Only then will I really feel recovered, and that the long trial is coming to an end (not true, but sort've).

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