My PEG site has been bothering me for a couple of days, and flushing it had become increasingly uncomfortable which I mentioned during my On Treatment Visit today in radiology. Several phone calls later, I was seen by a PA in the clinic, and after she made some phone calls I was sent down to the brand new CT machine for an abdominal series. Got a call a couple of hours later, the bumper is in my abdominal muscle, not in the stomach! So tomorrow, before my 9:15am radiation, and my third chemo infusion, I will have the tube removed. The plan is to let the site heal for a couple of days and then send me to interventional radiation in the hopes that they can insert a new one without having to go to the OR.

Me and devices? We don't get along so well.

Margaret, Yikes, that stinks. What a time to have something like that happen too at the end of your treatment. Hope they can get it back in RIGHT soon!

Nelie

Bummer! How could that happen . . . so sorry! Good luck.

Ouch! I hope they get you fixed up soon!!!

I wonder how in the world that happened and why. I bet the resposible person has a good one made up already. You are in my prayers and I wish you well with the new PEG when you get it put in.

Margaret:

I feel bad that you have to go thru that. Im sure it hurts like heck. My peg tube has always been uncomfortable to me, so I cant imagine how ad you must be hurting. Hang in there it will feel better soon.

Christine

Thanks for the kind words, All. A very nice doctor, who I'd never met before, pulled the tube early this morning. I got to look over his shoulder at my CT pictures, and there was the bumper, right in the abdominal wall. My oncology team is, even now, discussing who should put in a replacement tube since they don't like the type of tube used by the interventional radiology department (its small and rigid!).

It hurt like hell coming out, but the site feels much, much better tonight. I may never know what went wrong with it, but it is possible that it got pulled on slightly at some point. The good news was the hole through the stomach wall had clearly closed so there was nothing leaking into my abdominal cavity and there was no sign of infection.

All I can say now is, whatever they have to do to put in a new tube, I hope like the devil it isn't too painful.

Sheesh!

Margaret:

I have had my PEG for 12 days and just reading about your ordeal overwhelms me.

At this point I just have to put a 50ml syringe of water down it once a day, and that seems bad enough, but now I can't help wondering where that water is actually going!

I know I will get use to things like this soon. I Have to since I start my RT tomorrow. Fortunately before my first RT session I have an appointment at Home Infusion to check my PEG and I don't yet need to know what else they have planned!

Such a wimpy guy

Don,

If it doesn't hurt, and the water flows in easily, I bet you're good. Mine really hurt when I flushed it and I had to use the syringe to really push the water down while at first it was completely painless and the water just poured in.

Good luck tomorrow, with both the RT and the Home Infusion. And bear in mind that what happened with my tube is very uncommon. I just have to be special in my own way

- margaret

Margaret,
It looks like you are slightly two weeks ahead of me.
Were you using any canned nutrient yet, or just water?

I think tomorrow they want to get me using a can a day to make sure I am handling it OK before I need it.

So far I have squirted the water in with the syringe plunger (not just poured it in). Still real queezy about it.

Is everything else with you chemo/RT going ok so far?

Don,

I am so sorry this PEG thing seems to be such an uphill battle but I think, down the road, it will be something very positive for you. My Bill still says that it was a Godsend.

You might try this, since you are just keeping the tube flushed. Take the plunger out of that syringe (put it aside) and just pour the water into it and let gravity work. You can change the position of the tube higher or lower to control the flow. That might be less icky to you. Same thing for the supplement, when you start it...just pour it a few ounces at a time of water, then the can and let it slowly flow in. Then pour a few more ounces of water to clear the supplement. Its a great way to get more water when you are in the throes of treatment and need fluids. Cleaning the syringe will be easier without the plunger as well.

Good luck...many of us here are comfortable with this whole process...keep posting and we will help you.

Deb

Deb,
Thanks for your concern and good advice. I had an appointment today with my Dietitian for PEG check and training. My PEG is just fine - I was just letting my imagination run wild!

I took my friend Betty with me as my backup. The Dietitian helped us dump a can of Nutren down the tube then flush it. I am to start taking two cans a day. Hopefully I can get over my PEG phobia and if not Betty will force me to just do it.

I remain concerned about Margaret. Hope they can fix her tube without any problems since I think she might really be needing it soon.

Also started my RT today. One down thirty-four to go. The mask felt like it was crushing my larynx (Adam's apple). So today was also my first day using the dental molds and fluoride. That went fine.

Thanks for the concern, Don. No word yet on what comes next in my tube drama. I am still eating and drinking by mouth, but my throat and mouth get increasingly sore every day, so I'm sure something will have to happen soon.

I am glad to hear that your tube is working fine. It is kind of freaky isn't it? Having that thing hanging out there.

I'll let you know what happens next

Margaret:

Glad to hear that you are still able to eat and drink. Hope you are feeling a little better.

For me I have a love/hate relationship with my tube. Ive never quite adjusted to the idea of having to depend on it to get my nutrition. But, I also know it has saved my life when I was unable to eat or drink.


Christine

The Next Chapter!

Tomorrow, I'll have a new PEG tube 'installed.' New surgeon since the previous one is on vacation, or booked or something and couldn't do it until July 29, which is just too late. I am so not thrilled about more anesthesia since I do not tolerate it well when I'm healthy, and three weeks into radiation I can only assume it won't be any easier.

But, I bought a portable air conditioner for my bedroom today so at least I'll be cool during the rest of my treatment and recovery.

Margaret:

Good luck tomorrow. Before you know it, this whole ordeal will be behind you.

Christine

Well, the new tube was put it today. I loved my surgeon, she looked about 21 years old, although I know she is much older. She was so good about explaining how to prevent the tube from pulling out and showing me how to pin it to my clothes instead of tucking it in my waistband as I was doing. Because I am starting to get some serious mouth and throat sores, the team avoided intubating me and I was awake for the procedure with lots of narcotics. I was able to swallow the endoscope without too much discomfort and the next thing I knew, it was done! No incision as the doc had anticipated -- Yay!! So I'm home, and a little sore, but very happy with the outcome.

And very determined to be more careful with this tube.

Christine, I keep reminding myself, as often as necessary, that all of this will someday be a distant memory

Margaret:

Nice to hear your update that the surgery is over. Glad it wasnt too bad and you are able to be home.

Can you please explain how to pin 'the tube' to your clothes? I also am a tucker. I had used to tape it to my stomach, but now I just tuck it in and hope for the best.

Margaret,

I am so glad it seems to have gone well.

I still suffer PEG phobia but at least mine has finally quit hurting. I saw my dietitian today and have to increase from one can of nutrient to two. Just the one has been a mental challenge for me.

I think you are 11 session ahead of me so I am following your posts closely. You seem to be doing so well and dealing well with issues.

After just 6 sessions I already have moderate afternoon fatigue, slight headache and changes in my mouth and saliva, but still eating well.

Thanks for the posts

Christine -

The doc wrapped cloth tape around the end and left a big tab, though which she ran a big safety pin. I can pin to my bra, the doc's suggestion, or I'm thinking, my pajama top when I'm in bed. She thought it was best to have it pinned so that it went upwards, not down.

Don -

I definitely am starting to experience fatigue! Have your docs recommended light exercise to you? Many people find it helps with the fatigue. I am still only taking food by mouth, but think that will change pretty soon, maybe this week. I took Davidcpa's advice and ordered some of the Carnation VHC formula which is terrific. I can drink it easily and it packs lots of protein and calories. Also, my Mother makes a perfect poached egg in boiling water and those are super easy to eat. Plus water, of course. As much water as I can handle.

i get this netting from the nurses its like a fishnet tube top
cut about 8 or 10 in lenghts and its real comfortable you curl the tube up under itself so tube doesnt lay flat where it comes out works great and you can wash them

Ive had my tube for almost 1 year and never thought of those ideas. Even taped to my stomach, I had it pointed down and gotten several leaky days and many changed clothes. Worse yet was the time it was hanging out when I was grocery shopping. I think it scared a little kid who just stared at me like I was a martian.

Thanks for the ideas.

Margaret and Don, dont give up eating and drinking or at least trying to everyday. Its very important to keep swallowing daily so you wont have such a hard time later with recovery.

Christine, I know! It seems so simple. My skin cannot tolerate adhesive tape for more than a couple of days so I have to tuck or something. Pinning is perfect.

And its my intent to never stop swallowing! But we'll see what the reality is. My team includes a great speech/swallow therapist and I've been trying to be good about doing her exercises. I know they're already helpful.

Margaret:

Thats really very good that you are doing exercises now. It will save you from big problems later. Unfortunately nobody warned me about that and I have big issues now with trismus. Which affects eating and dental work too.

Sounds like you are doing great, keep up the good work.

Margaret

Thanks for the advice. I was hoping to increase my exercise but until this week the PEG hadn't healed up. This has happened so fast -- in less than a month; Neck dissection, Tonsillectomy, PEG and RT!

My RT is at noon, and about an hour later I get tired for about six hours then I seem better. But by then it is night! I was hoping I wouldn't have any significant effects for couple more weeks.

I understand in my case they have to radiate a large field. Maybe that makes a difference. They have told me it will get real bad:(

They gave me ten cases of Nutren and said I could both drink it and pour it down the tube. Also got some sample of Carnation Breakfast Plus (not VHC), Ensure Plus and Boost -- I ask if they have any VHC.

Don -

Even just walking is said to help with fatigue. Its been super hot and humid here lately, so I've been going to stores and walking in air conditioning. The big stores don't seem to mind at all.

Christine,

I learned from reading post-treatment posts here how important it is to keep up with the exercises. I think if I hadn't, I wouldn't fully understand the damage that is being done to my body. Like you, I'm only 45 and hope to have some more years ahead of me - I'd like for them to be good ones!

Hey Guys,

Thought I would throw out to you something that was a great solution for Bill's PEG since he could not tolerate the tape either. We used the nice soft/stretchy 4 inch wide ACE bandage...just wrap it around your torso and use the velcro closure making sure the velcro was all on the bandage and not exposed to the skin. They wash nicely, so keep two or three around. Available in most pharmacies. They breathe as well, so they aren't hot.

If you can find the 6 inch wide..hard to do..that is even better. Steer clear of the ones that are self stick...too rubbery and don't wash well.

Bill would just tuck the tube in and pull it out from under to feed (kind of like breast feeding )

Hope this helps,

Deb

Note to all of you....

Please keep up on the calories and the water. Do not let the Tx dictate how much you are able to eat or drink. Most of us were told a minimum of 2000 cals and 48 ozs water EVERY DAY NO as in NO EXCEPTIONS. You do this and believe me your Tx will go much better.

sounds like a lot of you on tube feeding are having different issues...I have been on my PEG since early last Sept and it looks like it might be a permanent situation...I've discovered/experimented with all sorts of things and have come up with a lot good tricks...everything from things about the tube itself, to what I add to my diet in addition to the Nutren...if any of you want to contact me with questions, I might be able to give you some help...always good to share ideas...Kathleen

Kathleen, either just post them here or start a thread on 'PEG tricks' so it's easy to find in archives.

On my first PEG, I had a neck strap that came with some flash memory that had a quick-disconnect. I rigged that up to the PEG and it kept it pointing up and handy for use. Current PEG is too rigid and points down, but doesn't leak so I haven't done anything special yet.

Deb-

I tried the Ace bandage trick, but I think I'm a little too thick around the middle and it just bunched up. I also tried using a belly band for women post-hysterectomy, and it too got too bunched up (although I loved wearing one after my own hysterectomy!).

Or maybe I'm just sitting down too much

-Margaret

Margaret...sorry the Ace didn't work so well. Maybe it has to do with the position of the tube..Bill's was fairly high on his stomach. Also, he had me to wrap it for him...daily ritual for me to clean around the hole and then stretch the ace around him after his shower. I think getting it stretched properly helped keep it from bunching but that is hard to do by yourself.

Anyway, we were so happy to find something that worked and didn't irritate like that awful tape did (we tried cloth and surgical tape...both were troublesome.)

Deb

Margaret . . .my RO's nurse pulled the tape off me the first day I came back from having the tube put in and gave me several elastic bands - sort of like spandex. I could step in or pull over my head to put on after showering and it held tube in place all day. If you can't find something similar, let me know and I will call her and find out exactly what she used. She gave me several and they were washable - lasted me the 12 weeks I had the peg.

I would be interested in finding those "elastic bands" since the ace bandage doesn't always seem to work for me (often ends up bunched up). I've had my PEG for three years now, but there are still good new tricks to learn, so keep the ideas coming!

Generally, I just tuck the PEG into my waistband and that seems to work, though. I have had it "peek out" at least once that I'm aware of. I was guest-teaching someone else's class and didn't realize until it was over. I'm sure it distracted those students pretty thoroughly....

Forgot to say, Kathleen, If you want to talk about the "might be a permanent situation" thing, I'm in the same boat (though I don't know if it's for the same reasons). I am still hoping to get off it, but I can see that it might not happen, depsite all my efforts.

Nelie

Well, I finally gave in and started using the tube.

Between my burnt up tongue, the sore throat and the disgusting taste in my mouth, I simply couldn't take in the calories or hydration I needed so this weekend I started tube feedings. I also took the Roxicet for the first time and some serious Robitussen dosing.

I've got 20 rads behind me now, 15 left to go, and three chemo infusions. I still have some good energy left and went for a nice walk in the evening cool (after a cat nap!) and that felt great. I hope to keep up the walking and not lose any more wieght.

Margaret:

You are past the 1/2 way point. Its good that you still are able to take walks and have energy.

Be very careful with weight loss and not getting your hydration and nutrition. Its good that you are using the tube. I ended up being admitted twice to the hospital for dehydration. I had a hard time with the tube feedings and finally had to get a pump to do them overnight. For calories you should be shooting for 3000 per day and minimum 48 oz of water preferably more. If your hydration and nutrition drops you will start feeling pretty bad.

Hang in there it will be over soon.

Hi Christine -

My nutritionist told me 2000 to 2200 calories a day - or 6 cans of Jevity, which I've done for a couple of days. I have lost some weight, but I think now that I've 'crossed over' to the tube, I should be okay. I'm also supplementing the Jevity with some fruit juices and I'm thinking about adding some thinned down yogurt for the cultures, I think my digestion would like that. I'm sure that the calories can be adjusted if I keep losing. As far as hydration, I've been doing pretty well with that so far, and trying to have at least a few sips of water to keep my swallow muscles intact.

Margaret, the thinned yogurt is a good idea or you can use kefir which has a lot of the same cultures that are good for digestion. Most of the time I was entirely dependent on the tube for my nutrition, I always added a couple of glasses of fruit/veggie juices each day. Actually I usually had one veggie a day like v8 or carrot juice or this green veggie blend of stuff they sell at the local helth food store and one of fruit. It may have just been a placebo effect but I swear I felt better having those than just the jevity by itself. Of course, if you are having nausea from other things such as chemo, the jiuces may be hard in terms of that.

Glad you have managed to cross over to the tube-you'll cross back soon, don't worry.

Nelie

you can get super acidophilus which is the yogut bateria and add it to your liquid i also add some glutimine powder

Victor,

What is the glutimine powder for?

Margaret,

I am really following your posts.

I am now at 9 rads. After just 8, I developed a noticeable "frog" in my throat. Although my mouth and throat felt reasonably OK, but for the frog and sore tip of tongue; I felt generally lousy all day Saturday.

I was concerned that it is hitting me early (still am), but Sunday I felt pretty good and despite today's zap still seemed OK so I went out to dinner with friends.

I really hope I can make it to 20 like you have before needing my PEG.

I haven't been putting much down the PEG. I was supposed to get up to two cans a day this week. Wednesday I have my appointment with the dietitian and she will not be happy.

I just despise the PEG and probably will until I need it.

Keep posting so I will know what to expect.

Thanks

Consider the Carnation VHC if you can get it down your tube since it has 560 cals in a can which would mean less feeding time to get the same or more calories.

Also don't stop swallowing because your using the tube. Swallow water or something everyday to keep those muscles in shape.

David,

On your advice I did buy a couple of cases of the VHC which I was drinking until this weekend. I think it may be a little too thick to put down the PEG though. Also, my insurance covers the Jevity (or as a friend has dubbed it, the "Levity") but not the VHC - so I think I'll save it until I can handle things by mouth again. As far as the swallowing, yes! I am still swallowing as much as possible and met with my swallow therapist today. We talked about which exercises I still should be doing, coordinating them with when I take any painkillers and just general swallowing stuff. She is absolutely terrific!

Don,

I may have been a little stubborn about not using the PEG and waited a little too long. Of course, I didn't have one for a bit, and after the new one was put in, I wasn't sure if I should use it right away. I have started having serious mucous build up now which didn't start until the end of last week, but Robitussen is helping tremendously. I just got some of the Lidocaine gel today and will try it out soon. The mouth sores are getting pretty bad.

I think its great that you went out with friends! The more you can do "normal" stuff, the better!

- Margaret

Margret
Thanks for the info.

I made a note on my calendar and it seems I might just have one week left before having to face PEG reality.

I think I might be starting to get the mucous a bit on the roof of mouth. I will pick up a some Robitussen (it is OTC isn't it?). Also do you swallow it or just gargle and spit it out?

They are giving me a Liquid called Nutren 1.0 (with fiber). It only has 250 calories per can so I will have to use nine cans a day, but I think that also covers a lot of my fluid intake requirements. They delivered a months worth of cases, so to para-phase what said "what the Cancer Center and Insurance wants me to have".

Also managed to go to a film party last Thursday, real nice with a fabulous Greek feast. Once I got there I was fine which surprised me since usually by Thursday I am real RADed out! Hardest part was getting out my front door! While at the party ...I don't know if was supposed to, but a had a couple little glasses of Champagne (passed on that awful Greek pine-sol wine).

Keep us posted on mouth care, the does and don't.
Thanks

Don:

Robotussin is a liquid medicine. The tube is great for taking meds. You dont have to taste that awful stuff, just measure it and put it in the tube. Make sure you flush it good with water afterward. Also some pills can be dissolved in water and put in the tube too. Ask your doc or nurses if its ok, some time release meds cant be done like that.

Don,

Be sure to ask because I don't think you get much in the way of hydration from those cans. I was told to drink at least 48 ozs of water each and every day in addition to the calories I was drinking.

Don,

The Nutren comes in a higher calorie form...Bill was prescribed the 2.0 with Fiber which I think, was 375 calories per can. You might try to call your insurance carrier or the home health group that supplies the supplement (and bills your ins co.) and see if they will approve the higher content can so you don't have to pour as many into your PEG each day. (6 vs 9)

I had good luck with the HH supplier meeting our needs...they never billed me and were very ready to get what we needed and deal with our insurance carrier (Aetna.) Anytime I needed supplies, they were delivered or mailed to our house. One less battle to fight during our war last summer. Lovely!

Deb

If I'm not mistaken others (well at least one) have gotten their insurance company to pay for their VHC.

My insurance company has paid for all the feeding supplies (formula, syringes, feeding bags, feeding machine) until just this past month. Something changed on my medical insurance and now its not covered. Alot of others on here also have their insurance paying for their supplies. It gets delivered right to my front door monthly.

Deb,
At my appointment today with my Nutrition RN and Dietitian, I asked about the higher calorie Nutren 2.0 w/fiber, but my Dietitian said her patient often have digestive problems with it so she only uses it for long term users and even then moves them to it gradually.

So I guess for me it will be nine cans of 1.0.

Thanks

Christine,
thanks -- went over this with my Nutrition RN and Dietitian today. They explained the Robitussin to me. They also checked my two prescription meds, a pill and a capsule and told me I can grind up the pill, and empty the capsule into slightly warm water and send them down the tube.

Don:

Glad I could help you with the medicine info using the tube. For me, I really dislike having it at all but at least I have found a way around taking yucky medicine. I dont grind pills, I just dissolve them in warm water. Just make sure you flush the tube good. It also gives you extra water which will help you with staying hydrated.

Don,

So glad you were able to address the Nutren issue with the nutritionist...sounds like she has your best interest at heart. I will say, that if, and I am praying that you don't, have to go to tube feedings only...getting 9 cans of supplement in a day is not exactly easy. It takes being very regimented to do it. I would definitely suggest having someone chart it for you along with your water intake. Some here used an overnight pump or a gravity feed bag to get enough in.

The main thing is to always get the prescribed calories and fluids in each day...think of it as a major player in allowing the body to withstand and heal from the onslaught of your treatments. It will make all the difference.

Deb

Hey Don

If you take nothing else from this thread, the advice of protein, protein, protein and calories, calories, calories is very good advice. As Deb say, it will make a difference, believe it, because it really does.

I was able to do 9 cans of Glucerna a day, 3 cans a meal, 3 times a day, and there were days that I also did a couple of cans of V8 juice as well. Even the chemo nurses were amazed at my blood work and I firmly believe that it is one reason I did as well as I did.

Kevin

Well I guess if Kevin could handle nine cans of Glucera I will just have to do manage nine cans of Nutren(somehow! -- boy do I dread this).

I wonder how many cans of Jevity Margret has to use?

Only six! I also add a lot of water and some fruit juice. My nurse practitioner also suggested sports drinks or broths to keep my sodium and electrolyte levels up.

Don,

Try not to dread the feedings if you need them...just take it on like a very important job and think of it as a life saver.

I would like to encourage you as well as anyone reading this thread by saying that my Bill finished treatment on October 1 and by October 10th was eating and drinking easily by mouth and feeling fairly well. He didn't seem to get worse at all after treatments end and was able to eat enough to be off the PEG feedings very quickly - less than two weeks. I actually was able to donate several cases of the Nutren and other PEG supplies to a deserving person at our RO's office. Not everyone has this quick a recovery but Bill did and the fact that you are having no chemo may make your time on the PEG shorter.

No false hopes here...just encouragement. Right now is a good time to take one day at a time...put your head down and take care of yourself.

Deb-

You have no idea how encouraging your post is! Well, I'm guessing you do

Thank you.

- Margaret

[quote=DonB]Well I guess if Kevin could handle nine cans of Glucera I will just have to do manage nine cans of Nutren(somehow! -- boy do I dread this). [/quote]

Hey Don.. Try not to dread it, it's Breakfast, Lunch and Dinner. When my wife would cook I'd go in the kitchen for my feedings, take a big whiff of what ever she was cooking, and in my head, played the game that it was what was for dinner. Then down the tube with the goo

Whatever it takes man!!

Kevin

Kevin,

I think we have a new saying:

"DOWN WITH THE GOO!"

I needed that saying when Bill was in the throes of twice-a-day radiation and once a week chemo and had to sit for 15 to 30 minutes after each feeding to keep it down. It was like having a newborn...feeding every 2 to 3 hours in between trips to the doctors. I remember feeling very accomplished upon reaching 9pm having poured 6 cans of supplement, multiple ounces of water, varying meds and driving twice to the RO's office. Thank God for the GOO!

Deb

Margaret,

Glad that you were encouraged. Bill didn't have an easy time during treatment and actually wound up in the hospital during week six after developing a fever and low blood counts. But he just seemed to get better after that and never looked back. I don't know if the extra IV hydration made a difference or the antibiotics or him just being a tough guy, but he just quit needing the pain meds at week 7 and never looked back. In fact, he went off the fentenyl patch and didn't want the liquid morphine and had about three days that he couldn't sleep from the withdrawal.

It was a glorious day in October when we delivered those cases of Nutren to the RO's office...we were so glad to be rid of them and so happy that someone could use them. I tried to return them to the company but they said just to donate them.

Sorry to hear about your Mom...I hope that it was just a little warning stroke and she can take some meds to ward off more. Caregivers are under a lot of stress that we don't communicate..we feel lots of pressure to make good decisions..it takes a toll.

Hugs, Deb

Even if I had to pay for the VHC, which I did at about $30 for 24 cans, I would still consider using them at 560 cals per can. My time and inconvenience was worth that to me. I downed that stuff for over a year post Tx.

[quote=debandbill]
I think we have a new saying:

"DOWN WITH THE GOO!" [/quote]

I hope someone is keeping track