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Feeding tube

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi all,
Just tried to flush my feeding tube for the 1st time. It has been in since Wednesday last week. So far other than losing control of my life, this is the only thing that scares me.
It still has the bandages on it from surgery and I have asked everyone, being the Ro nurse, the MO nurse and the Rns where i get my amiphostine infusion, how and what I need to do to take care of it. Go back to the Gen Surgeon Friday and I am sure he will take the bandages off and maybe the stitches. Everyone told me to sit up and use the syringe like a funnel and let the water flow in via gravity. It did not work. I don't want to seem like a child, but I don't like this thing. I guess it is just something new and I gotta get used to it. I know I can put the plunger in and push the water in and everything will probably be fine, I guess I just need some reassurance and advice from some of you pros to calm me down about something that deep down I know is good for me. Please give me a little help if you can.

Thanks
Steve

MarineE5
Posts: 748
Joined: Dec 2005

Steve,

I had a Peg Tube that was located just below my left ribs, but toward the center top of my stomach. The Peg Tube is suppose to be flushed at least twice a day whether you use it for feeding or not. You will have a bigger problem if it gets clogged.

What I did was stand in front of my kitchen sink. With a bowl of room temperature water in that bowl, I would have the plunger in the syringe and draw the water into the syringe. Act as if you just filled a needle and hold the syringe so the noozle is pointed toward the ceiling over the sink and push as much of the air out of the syringe. Having the flexable hose from the Peg tube untaped from my chest, unsnap the cap and insert the nozzle of the syringe. Hold the syringe nozzle to the tubing with your thumb and forefinger and slowly push in the plunger with your other hand. Don't go fast as this can cause you to get a upset stomach if done to fast. DON'T use COLD or HOT water as this too will cause you discomfort.

Push at least 2 syringes full of water thru twice a day as I mentioned, being used or not. This will help keep the Tube from getting blocked up. If for some reason it does. You can try ginger ale in the syringe and the bubbles help clean the hose and PEG out when you try flushing.

If you have any questions, you have my number and you can give me a ring tomorrow, as I am headed off to sleep now. I hope this is of help to you.

My Best to You and Everyone Here

Chefdaddy
Posts: 164
Joined: Dec 2009

Hello Steve,

I started using my PEG to feed myself yesterday.

I have been flushing it everyday since it was put in back in December of 2009.

I fill a sanitary container with luke warm water and I draw up water with a 60cc syringe and remove the air before connecting it to the tubes valve. I then open the valve and then
un-clip the clasp on the tube and start slowly pressing the water in. I then re-squeeze the clasp around the tube and then I disconnect the syringe and with the valve still in the open position I stand over the bathtub and shake the remaining water out that would be trapped otherwise between the clasp and the valve.

The idea of using the syringe as a funnel doesn't work, at least not for me. When a nurse tells me a way to use some of this implanted hardware I immediately ask them if they have ever had one. If the answer is no, well, grain of salt!

I hope this helps, the PEG is a life saver, I have lost way too much weight for only being in treatment a couple weeks, so far 42lbs.

Also, when you start using your canned liquid food go very very slow, my ENT said to take an hour for the first can, I did and it wasn't long enough, I had some discomfort but now it's become easier. I notice more energy after just one can, the ENT wants me to try to get two in a day.

God Bless you my friend

Mike

MarineE5
Posts: 748
Joined: Dec 2005

Steve,

As you mentioned in your post, I used the gravity feeding method. Before feeding with my nutrition, I would flush the tube twice then sit down in a chair so I could do my gravity feeding.Sitting in a chair, I would have my 2 cans of nutrition handy. I used the Syringe with the plunger removed. I would sit and have the flexable tubing in my left hand with the cap undone, but the end folded over to grimp the hose so no fluid would escape.

I would then raise the end up higher then the incision sight and insert the syringe so it was in the position of a Funnel, kind of like pouring oil in a car. I would then pour one can in slowly. You can adjust the flow of the canned nutrition into your stomach by raising or lowering the syringe hieght in relationship to the incision site. Try to pace yourself to one can per 10 minutes to start. See if it upsets your stomach. If it does, you might have to take 15 minutes per can. 10 minutes worked good for me, anything faster made me burp and upset my stomach alittle. Once you are done with the nutrition, flush your Tube with 2 syringes of water again. This flushing before feeding and after feeding does 2 things.

1- it helps clean the hose and PEG, keeping the nutrition from caking in the hose. 2- helps a little bit with Hydration. During treatments, we need 64 ozs of fluid daily.

My Best to You and Everyone Here

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

but the guys beat me to it. Sounds like they got you covered. My PEG is where Marine's is. I never had sitches or bandages on mine though, so I am wondering if yours is in a different place? Maybe your wife can help you the first time? My step mom helped me, then I was on my own. Just remember to go slow.

debbiejeanne's picture
debbiejeanne
Posts: 2353
Joined: Jan 2010

Also, always remember to pinch the tube closed when you aren't using it. My tube sounds different also. I never had stitches or bandages on mine. Good luck all with the tube, it really isn't hard. In fact, it is probably the easiest part of this entire ordeal.
God Bless,
Debbie

Fire34
Posts: 351
Joined: Feb 2010

Steve
I dont know if this will help as I am now 3 months out. During my concurrent chemo/rad my throat became swollen so bad i couldnt swallow at all and they placed a tube. They initially started me out with a gravity bag but that was too slow. For me the gravity feed thru a 60 cc syringe worked best. As mentioned in previous posts I was also advised to flush daily even though there werent any days i did not use mine. I had mine for approx. 3 months. The only bandage I had on mine was a little gauze for weeping from the incision.
And no you are not losing control of your life. I thought the same after my third week of chemo/rad and if not for my wife and it looks like your wife is just as supportive as mine was. I dont know what i would have done without mine

ratface's picture
ratface
Posts: 1234
Joined: Aug 2009

Go ahead and flush it. I would stand next to the kitchen sink and just fill the damn thing with water. Aspirate a bit to remove air. Undo the stopper as you squeeze on the tubing to prevent spills. Insert syringe tightly. Hopefully you have the one with the ears that gives you a nice hold. Push fluid through slowly. Repeat if remaining fluid is not clear, hopefully you haven't just downed some red wine. Hold tubing again while squeezing. Remove plunger. Replace plug.

Gravity feeding never worked for me. It's like watching paint dry. Bolus feeding is the way to go. You don't enjoy the food anyway and there are more exciting things to do in life. Push through slowly using same procedure as flushing. You may get some eruptions here so use a towel over your lap while sitting. Use the syringes with the ear flaps if possible. Gives you something to exert force on to push the plunger down.

You don't have to use it. This is only if it hurts like hell to swallow. Even simpler is just drinking the supplements down when pain permits. Pretty soon you will be doing it while watching TV or reading or having dinner with friends. Great conversation starter.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Boy, does this bring back some memories. The PEG gave me the creeps at first, too, and at first I had my wife help me flush the tube. But after I got used to it it was no big deal. As a matter of fact, when I couldn't swallow pills anymore I was able to grind them up, dissolve them in water and put them through the PEG. (Check with your doc before doing this: Some meds are meant to dissolve slowly, and grinding them up would give you too much, too fast.)
Remember, the PEG is your friend.
And, when you have it removed it leaves a really cool scar.

--Jim in Delaware

debbiejeanne's picture
debbiejeanne
Posts: 2353
Joined: Jan 2010

Jim, I absolutely love your sense of humor. It always makes me laugh out loud. Now you've made me want to hurry up and be done with this tube so I can show off my new cool scar.....lol.
God Bless,
Deb

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Weren't nothin', ma'am.
If I didn't have a sense of humor, I don't know how I would've gotten through all this.
Besides, laughter is good for the soul.

--Jim, still smiling in slower lower Delaware

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

Stitches? Not sure what you mean by that, Steve- I had none. Tube was put in me, and I had pain due to the breech of my abdominal wall, but that was mostly due to a previous injury/tear to that wall in the vicinity. The only opening in my skin is where the PEG goes into me, and so there's no stitches. Did have stitches above the Port, but not the PEG.

I flushed with bottled water and the large syringe- shooting the water at a gradual pace. As for the feeding, it was pouring the 4.0 formula into the large syringe (minus the plunger part of said syringe).

Of note: all my nutrition was thru the PEG from weeks #1-#8, though I was able to sip water and swallow pills that I chopped-up. Thought about grinding the pills, and even pouring some of the liquid morph into, but never did. Vicodin was all right, chopped, as was Xanax.

I thought I would have another belly button when the PEG is removed- not a scar. So, now I'm wondering which it'll be. Would appreciate any info on this.

kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Since you asked: The scar I referred to looks rather like the entry wound from a small-caliber bullet -- maybe a .22 or a .25. (Thank goodness there's no exit wound!)
I didn't have any stitches, either, so all I have is this funny-looking little dark dot to the northwest of my navel.
I look at it as the civilian equivalent of the Purple Heart.

--Jim in Delaware

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

Thanks you, Jim. Slug was in my gut (now) for over a year! That is cool, you know. I had kinda hoped it wouldn't be a lint-trap twin of my belly button, but another post some time ago kinda made it seem like that would be the case. Now all I gotta do is make a cut in the vicinity on my back to represent where the bullet exited my body...It's a rough and tumble life us survivors have lived, dodging bullets and mixing it up with the rougher elements! Thank you, Jim. Much appreciated.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

You guys are great. Thanks for the help. flushed it. Still spooky. Probably will be next time. But it will get better. I was having a real hard time with the general surgeon on getting released from the hospital. I don't know if it has stitches to be honest. I do know the port does. These went in on Wednesday and the gen. surgeon came in Thursday morning after being told that I had a dry run for radiation at 10:30, and then a dentist appt. He was not going to guarantee his precious port if I went to the dentist. Said I ran a high risk of infection. Mind you, I had already spoken with all of my medical team RO, MO, ENT and dentist. The dental work was deep cleaning and some implants, no more extractions or anything to jeopardize my upcoming treatment. Can you believe I forgot to consult with the general surgeon? Hell even the ent after talking to the dentist said every time I swallowed I was putting the port at more risk of infection due to the condition of my mouth, than not having the work done. (3 Abscesses). So I was pretty upset and probably was not listening as to what installation had to be stitched in. Yea there are bandages on it and they are still on it and I go see him tomorrow and he is going to show me what I need to know. Then hopefully I will be done with this doctor until at least removal. And by the way, i have some clean and some new teeth. By the time I got through with em they were trying to get the window open and throw me out of the hospital.

Best to all,
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I dont know how to do a peg tube but my pediatric patient has a mickey button. Sometimes if her stomach is full of air the water and pediasure wont go down. Have to let it vent first. The gravity makes it all go down. I dont know what I will do when I have one, diferent when it is your own.
So when you had it put in... it wasnt as an outpatient?
I hope you are feeling good Steve. Have you been able to eat by mouth still?
Mary

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Mary,
My peg was radiology assisted and I was not an out patient. I stayed overnight. Yes I can still eat just had a hot ham and cheese sandwich. This was day 4 of treatment and I feel allright. It just takes the energy out of me so far but no bad effects yet.

Best,
Steve

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

Hi Steve,

You have plenty of good advice here. I wanted to add that I couldn't take much more than about 6-7 fluid Oz per feed. I used the gravity feed method with a cup and tube setup which I hung from the rack in hospital and later at home a suction hook on a glass cabinet. I would read the news online while the feed went in.

I was always pressured to do up to 6 feeds a day but could usually only manage about 4 so my calorie intake was low as each feed for me was about 400 calories. I had to use Sunrider Vitashakes mixed with 220ml of Rice milk as the Nestle gunk the hospital had, played havoc and gave me shocking reflux and heavy mucus problems.

Earlier in it's use I did have to 'aspirate' the PEG tube before each feed. That is to check on pressure and fluid already in your stomach. At first the nurse did it. They would put the Syringe in the tube and actually suck out some fluid and see how much would come out. If only a bit (less than 50ml) they would just re-inject it. If more, they would take it out and dispose of it. I suppose you then get to know if your feeds or regular food is going down. If you're in hospital and/or on pain meds, you may get constipation which is a real ***** (esp if you are on morphine) as that means movement of the food is slow. Tell your physician if you have this problem and get a fix.

Don't stress Steve, you will get used to the PEG. Mine was about 2 inches above and and inch left of my navel. I was a bad boy and didn't flush it as I was supposed to but had no ill effects. I had mine till about 3 months post treatment.

I didn't have stitches for the insert but one or two when they pulled it out. As such I probably have a smaller scar than those rugged types here that had the 'grit n pull' method of removal. I will still tell my kids "That's where Daddy got shot" when they are old enough.

Hang in there Steve, keep eating and talking and being as normal as you can for as long as you can. Don;t over do it and get plenty of rest if you need it. Hopefully you can cruise through but don't be hard one yourself if you hit any rough patches. I hit a lot and was hospitalized for nearly 4 weeks but am well over it all now and back at work. You can do it !!

Regds
Scambuster

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

that's what i have now, one of those buttons. i had an appointment today, but couldn't go because of the 12" of snow. i have been getting an awful pain under my ribcage and out my back, i dunno if it is gas or what, but man it was bad today. feels like if i could get air out i would feel better. mary is there a way to let the gas out of this thing? how do you vent it? i am always very careful not to get air in my line when hooking up to my machine. had such a bad day today, i didn't even eat or drink much. not good. appt is rescheduled for tuesday.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey sweet,
I have that awful pain sometimes too. I am the same it feels like serious gas or I don't know but it hurts. What is odd about me, and I know that the stomach is a big muscle basically, is that the inside of the tube feels stuck to the inside wall of my stomach, and I can feel my stomach cycling,?-- all of a sudden it feels like it separates and the pain almost goes completely away. Asked the all knowing, all seeing General Surgeon about this yesterday, and He simply said "NORMAL". You know, I guess he is right because all of the time before my peg I doubled over in pain about once an hour. NOT!!! It may be hidden in my writing the total disdain I have for this doctor. If so, I will try to express my feelings better, or may seek counseling.LOL Idid get some gas x and tried that last night and it did help. Eating, or FEEDING myself something seems to help too. Haven't been able to VENT it yet, except on this post so far.

Bless you Sweet
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

steve, i get that pain every once in a while, too. that one is more like a spasam. seems to happen more to me if i get too hungry. they both hurt.

Chefdaddy
Posts: 164
Joined: Dec 2009

I had posted on a thread a few weeks ago about pain from the PEG area and severe muscle cramping. I mentioned it to my chemo doctor and he loosened the part of the PEG that touches your skin and the pain and spasming went away. He told me that some surgeons think they have to be clasped very tight. He told me that one of his patients came in and he couldn't stand upright it was clasped so tightly.

I hope this helps.

Your friend

Mike

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

Very good to hear you're doing okay, Steve. Still a bit confused about some of the PEG experiences expressed in this thread, and I ask you to again read my earlier post- just poured the 4.0 formula into the syringe whose tip was placed into the opened top of my PEG tube.

As for my pain in the PEG entry area- I always figured what I had a problem with was the breech in my previously-injured abdominal wall. Could be because of the difference in our Chemo treatment, but the 4.0 formula provided all of my nutrition from the end of week #1-week #8. And, I didn't have a gas problem. There were times when the "sit down" thing didn't happen for a couple days, and I worried about things getting stuck in my intestines, but it all turned-out okay.

Steve, look for a PM from me. I think you're doing great. Keep him in line, Ann- he's a work in progress.

Believe.

kcass

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

HI Steve, I do now recall the first week or so of PEG life I had some terrible cramp like pain and I thought the tube had dislodged inside. Once it occurred when I was laying down on the table and they had to postpone my session as I was screaming in pain. It turns out it was trapped gas. After that I would just stand next to the bathroom basin and open my tube and valve and let any trapped gas or fluid run into the basin once in a while till I got a handle on it. Not to say this is the cause of your pain but may be worth a try.

Regds
Scambuster

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey scambuster,
Yea it's strange. And it is very strange that you just posted this. I just 5 minutes ago did that and it worked!!! Relieved the pain a great deal. Amazing!! and just like everybody said I am an old hand at this now. Nothing to it. Finally, I am glad the tube is there in case I need it. Doesn't give me the creeps anymore. I have also found that i have a lesser pain when I am hungry. But the gas thing would almost double me over. Thanks for your post, all of you, to help me overcome this stupid fear.

Best to all,
Scardy cat

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

great. now how do i do that with my button?

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi sweet,

I wish I could tell you. I, being afraid of the tube sticking out of my gut, inquired about a button or mushroom type feeding tube. got nowhere fast on that one. Don't really even know what one looks like. But I will bet some body has that type and can help you. Sorry sweetblood. But don't worry we'll get you an answer.

Bless Ya,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

steve, this is my third type of peg. i started out with one with the long hose sicking out. then went to a bit smaller one that they put in after they did my first dillatation. they went thru my peg to do tthe first stretch. that hose really hurt and was uncomfortable. had a round piece of plastic which cut and hurt my skin. have to change every three months. this button one is best for comfort. have to change end of march. owie.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

The girl I take care of... she has the Mickey button. Whenever I would hook the tubing up to her button gas would come out, or sometimes I would just pinch the tubing off and on and her gas would come out. Also she is always digging at her button, moving it back and forth and gas comes swishing out around it. I am going over to see her today, I will ask her mom ( who is an expert at mickey buttons) what else they do.
Mary

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

Actually, the PEG button is what is holding the tube in place INSIDE the stomach. That which is around the opening in your stomach wall is shaped like a button- with holes that allow fluid into the stomach with PEG tube feedings. Has nothing to do with the outside-the-body. The plastic attachments pressed into/with the PEG tubing on the outside is a bit bulky, but it has all held in place good enough for me in my 13-months of ongoing PEG history. Paper tape holding the gauze around the PEG entrace area, and more paper tape holding the top attachments in place above that gauze. OF NOTE: the outer plastic flap on the top of the PEG can tear- mine is torn.

Sweetblood- are you sure you don't have the Balloon tube? I talked at length with my Surgeon about the PEGs. The balloons are the ones that get changed often.

fyi

kcass

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

kent sounds like i had the peg originally, now i have a balloon tube.

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

Sweetblood- my Surgeon told me a lady under his care gets her's replaced a couple times a year. I didn't ask him why she has her tubing. Do know I will not get such. My PEG is practical enough for me, and the experience of removal is not one I'm looking forward to (hoping for such after my next PS in April).

To all- the feeding tube thing is very simple: it is tubing in which one pours liquid nutrition- like a mouth with plastic tubing as the esophagus emptying directly into the stomach. Not familiar with the gravity-type variety, of which others have spoken of. With mine, there's an attachment section at the end of the tubing, with a flap/top that has a ball underneath to hold the seal for times other than the feedings. All I had to do for the 7 weeks was lift off the top, put the syringe tube's tip into the opening, and then slowly pour the formula into the syringe tube.

And, again, I would advise any/all to inquire about the 4.0 formula, rather than the typical 1.5. With me, the 1.5 would have meant 7 feedings/day, instead of the lesser 4/day that was needed with the more concentrated 4.0. I was told the only problem with the 4.0 was that some people could not tolerate it, due to "regularity." The 4.0 worked for me.

fyi

kcass

D Lewis's picture
D Lewis
Posts: 1523
Joined: Jan 2010

My feeding-tube installation surgery will probably be first thing next week. Thanks for your calming words and sage advice. I can do this.

Deb L.

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

As others have testified- the tube is very acceptable. In the big picture: it can be a very necessary inconvenience. Know you can do this, Deb. It is so very critical that one MUST get the nutrition into the body for that body to fight the best fight possible, and the tube makes that getting of nutrition so very easy to do- it really does. When the mouth and throat don't want to function in an eating kinda way- hey, bypass them and put the nutrition directly into the stomach. That simple. Just takes a little getting used-to.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi all,
I wanted to thank everyone for the responses to this post. As you all may or may not know, I have only one doctor on my team of doctors that I am not satisfied with. It is this surgeon whom I was referred to and we all just butt heads with some personalities if you will. He did not instruct me, and when asked for assistance offered none. Actually, Kent and the many others who posted to this thread helped me more than one of my own physicians. The PEG that I had put in is actually called PRG. In essence the same thing, same device just a little less intrusive as it is radiology assisted in it's placement. I.E., smaller incision, smaller tube placed down the throat and such. And yes it did have 3 stitches which I had removed this morning. I researched this and also the different types such as the one sweetblood had mentioned. I requested the PRG. Same coverage through my ins. and less intrusive, I figured why not? Just wanted to thank everyone here for assisting me. As I said it is just part of me now and not bothersome at all.

Thanks to all,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

we were posting @ the same time. see the next post. glad you did your research. glad you are used to it. i thought if i bared my little belly and people could see a whimp like me could deal with it, then they could too.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey sweet,
A wimp eh? I mean I'm 6-2 and I was scared of this thing. Mine looks like your 1st one, but my tube is not as long. Thanks for the pics. I tried very diligently to find just such a pic before I had mine put in so I could just see what it looked like. This, I'm sure will help others.

Blessings,
The Wimp

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I had a feeding tube for 5 months during my rads and chemo (mine was the same type in sweetbloods picture with the long tube) and it was a breeze and a life saver. The only thing that bothered me was the surgeon left 18 inches of tubing hanging out of my stomach which I had to coil up and tape to my stomach to keep it out of the way. The surgeon told me when I complained about the length that he could shorten it for me.

I would like to share a tip that soccerfreaks told me when I first got the tube. If you are feeling like you are going to vomit you can open the end of the tube and put the end of the tube over your sink and the expelled liquids will come out of the tube and not your mouth. If you are going to be sick this is the only way to go. I was fortunate during my chemo and only vomited 3 times and was very happy to find that soccerfreaks advice worked :-)

Maybe I am an exception but I had no problems with my tube from the time it was inserted until it was removed. Insertion was painless, cleaning was easy, I just washed around the insertion point (with Dove soap) and rotated the tube around in circles as I was washing it. Patted the area dry with a clean gauze pad, wiped around the hole in my stomach with a q-tip soaked in peroxide, wiped again and put a gauze pad around the hole. I was fortunate that the company that supplied my formula also supplied me with 4x4 gauze pads that were made specifically for feeding tubes, they also supplied the paper tape to hold the gauze pads in place. They also supplied the syringes and all the necessary supplies if I chose to do the gravity feeding, which I chose not to do.

The only problem I had was when I was pouring the formula in I would occasionally cough or sneeze :-( I very quickly learned that if I felt like I was going to do this I would quickly put the plug in the end of the tube!! If not I would have formula all over the place - LOL

Getting the tube removed was one of the happier times in my treatment as it gets to be a bother after a while. It hurt for about 10 seconds when they pulled it out but it sure was nice not to have that tubing hanging out of me anymore.

As I said, I may be the exception, as I had no real problems, smell or pain, and was able to get the nutrition my body needed to make it through treatments. I am only 5" 1' and weighed 118 when I was diagnosed and dropped down to 98 pounds before I started on the tube feedings. I never would have survived without the tube. My biggest problem now seems to be gaining the weight back - have you ever heard a woman complain about not gaining weight - LOL

So, to everyone getting the tube, it CAN be done. It has to be done as you definitely need to keep your nutritional intake to the max. Just think positive thoughts as many of us have been through the same procedure and we are all survivors.

Thanks Sweetblood for the picture on the Expression page as I was never very good at describing my feeding tube and you have now made that unnecessary ;-)

Good luck to everyone, stay strong and keep smiling,
Glenna

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Maybe I should have left out the whimp comment? :) I am not implying anyone other than me was whimpy. I said no to the docs in the begining cause I was scared, thank God I changed my mind because I would never have made it. I just feel whimpy in comparison to others here, but maybe I should not feel that way, we are all unique. Sometimes I forget that I also have the added complication of the Fanconis Anemia. My organs, and body already having been compromised because of that.

Glenna. Man I wish I would have known about the tip that soccerfreaks told you. Maybe I would not have gotten down to 88 lbs. I don't know if it would have worked for me, but I definitely would have tried it.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

No sweet,
I am saying I am 6-2 and was scared of the thing. It's me that's a wimp.

Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Hi Steve,
Have you started tube feedings yet, or are you still able to swallow? I am wondering.. with the tube feedings, do you take it all in at once, or is your tube to be hooked up to a pump that puts it in your stomach with a slow drip? The girl I take care of,well did take care of,hers I would pour formula into a syringe and let gravity take it down. One woman I am in contact with that is 4.5 yrs out, said she had to use the pump. Was just wondering.
Mary in Northern California. 24 days till surgery

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Mary,

No, I haven't started feeding myself through the tube yet. I'm still able to swallow. I have very bad dry mouth right now. I tried flushing with 'gravity' but it didn't work. I don't think gravity feeding will work for me. I'll probably have to use a syringe or a pump.

Best to you Mary,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

steve i was afraid you thought i was calling you a whimp when i read that the first time. i got it now. ;)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

i am going to post two of the three tubes that i have had. the mickey button has been by far the best. if you click on my name and go to my expressions page it will be there momentarily.

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