I would really like to hear from some other adults that use PEG tubes. I have been on my tube for almost 2 yrs, not having any problems, but would like to meet some other "tubers" out there. As far as I know there is no one else like me in this area. My husband and I live in Flat Rock, N.C. just outside Hendersonville.
I was diagnosed with stage 4 squamous cell carcinoma at the base of my tongue in July of 2007. I had my surgery at the Medical University of S.C. in Charleston followed by 7 weeks of chemo and radiation at Gibb's Cancer Center at Spartanburg Regional Hospital. I lost my swallowing function and will be a tuber for life. I have adjusted very well and do not miss eating by mouth.
A few setbacks the first year or so, but am doing great now. Just had a six month checkup last Nov. with a good report.
I go to the gym 4 times a week, we hike, bike, camp and I garden and am getting back into golf.
I am 66 yo and was in excellent health before this happened. Had no risk factors such as smoking. No idea where this came from.
I recently started a support group for head and neck cancer patients, survivors and their caregivers.
I would love to hear from anyone that is a tuber, what their experiences have been, share ideas and tips (I have a lot!) and if they have done any traveling and how they handled that. Kathleen
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Adult PEG tubers
- By Katie811
- Posted May 26, 2009 at 9:44 am · 52 replies
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- By oleyfriends
- Posted May 27, 2009 at 11:44 am
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Kathleen,
Have you considered coming to the Oley conference? It's coming up soon and is not so far from you. For details visit http://www.oley.org/annualconf.html. You can meet many people fed by tube and learn from tube-feeding specialists. It's a great experience.
Travel tips are posted at http://www.oley.org/traveltips.html.
Two people who will be there that I think you would appreciate meeting are Rick (http://www.oley.org/oley_homepic_7.html) and Terry (http://www.oley.org/oley_homepic_12.html).
Call or email me with questions.
Roslyn Dahl
Oley Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
- By Novagrad
- Posted May 27, 2009 at 8:09 pm
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Hi Kathleen:
I've had j-tubes for a few years but just got my first PEG/J-tube. I use the PEG portion for draining/venting and am having trouble draining right now. I'm also having trouble keeping the top on the PEG opening (it pops out). I saw my doctor today about it and he recommended that I keep the inside of the tubing dry and then it might stay. But any suggestions you have would be great!
Thanks,
Mimi
- By alphabubo
- Posted May 28, 2009 at 6:58 am
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Dear Kathleen,
I am currently being tube fed with a PEG tube at night in order to supplement what I am able to take in during the day orally in the hopes of helping me to gain weight. Congratulations on being able to do all the traveling that you do and keep so active. If I could ever gain enough weight and strength, I would love to go hiking again or even prepare myself to do something like hike the Appalachian Trail (that is one of my major dreams as I love hiking and nature). I am 28 and and live in Kentucky. I am glad to hear that you are doing well now and I hope many new adventures may continue to bring you blessings. Best of wishes and many hugs.
Warm regards,
Bobbiejo
- By Katie811
- Posted May 28, 2009 at 10:39 am
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Bobbiejo...I'm assuming you've spoken to a nutritionist about the trouble you are having gaining weight...are you still in any kind of treatment?...is the tube feeding due to an ongoing medical condition?...a year ago I started experimenting with putting "real" food down my tube...I started with smoothies that I bought at the grocery store...also baby food...I mixed it with juice, soy milk or water to thin it down a little so it would drain through...right away I started feeling like I had more energy...I had a food processor so I decided to try making my own smoothies...worked great!...then I started mixing food that I fixed for my husband...I use Bob's Red Mill Scottish Oatmeal mixed with a can of my supplement and some water for my breakfast every morning...mid morning I mix a cup of applesauce with some water for a snack...lunch is a can of supplement with soup, an omelete or a cup of smoothie...afternoon snack is a banana and a cup of yogurt mixed in the processor with juice...dinner is whatever I've made for our meal that day...evening snack is a can of supplement...I went from nothing but 5 cans of supplement a day and lots of water to this diet...I've gained 7 lbs over the last ten months and have tons of energy...I'm back to my old weight and look just like I did before all this began...I'm not a medical person, don't pretend to know everything, but I do know that my nutritionist and doctors were skeptical when I told them what I was doing...however, when I went in for my last 6 month checkup, they were thrilled with how I look...I think I made believers out of them...I don't know what brought you to this present state of affairs in your life, but if you don't have any other issues, I would start out like I did...smoothies and baby food...see how your system reacts...slowly go from there...if you have any more questions, or want more info on how I mix my food, email and I'll be happy to share...let me know how you're doing...hugs, Kathleen
- By pattyjo002
- Posted May 28, 2009 at 11:36 am
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My husband is a tuber and he had the same form of cancer you had. He did a Vital stem theraph and it has helped his muscles in his neck and his range of motion of his tongue it has done wonders for his voice to. I am a firm advocate for that therapy it is a wonderful thing. He hasn't ajusted to well to his tube feedings but he has only been on it since Nov. He is so skinny. I am so afraid he is starving to death.
- By Katie811
- Posted May 28, 2009 at 3:42 pm
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PattyJo...I'm so sorry your husband is having such a hard time...it is very worrisome to see them "wasting" away...is he on a PEG tube?...mine is gravity fed...I just insert the larger plastic feeding tube part of it, pour in the food, hold it up high enough that the food slides down and sit down and "eat" with my husband while we watch Jeopardy!...I do not, or have ever, used the plunger part of it...please read my reply to BobbieJo and see if any of that helps...what sort of problems is your husband having with his tube?...is it just the feeding part of it, or is he having other issues such as leakage or discomfort...I've been on my tube since just before my surgery in '07...never had any real problems and do not miss eating...a lot of that part of it is in your mental outlook...does your husband have enough energy for any exercise?...what does he do during the day to stay busy and keep his mind occupied?...if you can be more specific about his problems with the tube, I might have answers for you...I've experimented with a lot of different things and have this down to the point where it does not limit my life at all...we go out to dinner with friends, (I eat first and enjoy the social part of it) we have friends over as I love to cook and entertain...my life is just as fulfilling as it was before all this started..please let me know if any of this has been a help...take care Kathleen
- By Katie811
- Posted May 28, 2009 at 4:21 pm
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not knowing what your tube set up looks like makes it somewhat difficult to help you...my tube is 12" long, about 3/4" in diameter, has a plastic clamp that, when opened, slides up and down and also has a small plastic attachment on the end where you insert the larger feeding tube...this has a pop out plug that is attached...I have not had any trouble with that popping open while not in use...does yours actually "snap" shut?...how large is it?...the first one they gave me was fairly large and cumbersome...I demanded something smaller and more discreet...my nutritionist gave me this...I love it and keep it tucked in my bra to keep it from accidentally falling out and dangling, causing some embarressment for me and others...as far as keeping it dry, well I don't know about that...as I said, if it snaps shut you shouldn't have a problem...if your setup doesn't sound like mine, and your doctor says that he can fit you with one like that, I would definately talk to him/her about this...draining it or venting it should not be a problem either...I just hold mine down in my kitchen sink so it's below where it goes into my tummy, and open the snap top and the clamp...with the technology that they have these days, no one should have on going problems that degrade your quality of life...keep demanding that they fix this until you are happy!...let me know if any of this has helped...take care Katie
- By alphabubo
- Posted May 28, 2009 at 5:42 pm
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Dear Kathleen,
Thank you so much for your kind reply and sharing your success. I am so glad that what you are doing is working so well for you. I think part of the reason I am having so much trouble is that I have some issues with absorption, as for example, I once took a calcium plus vitamin D pill one day, and was concerned that I was not absorbing it so I stopped taking it. Then a day or two later, I threw up and it came out as looking exactly as it had come in. I also have somewhat sensitive bowels, and if I eat certain things like those high in fat (unfortunately the vary foods I should probably trying to get in), the food tends then to go right through me without a chance of being absorbed. I also have trouble with GERD and refluxing food if I take in too much at one time. I had to have a multivisceral transplant because my entire digestive tract slowly over time completely deteriorated from the top gradually to the end. Thanks to the transplant (I got six organs:liver, spleen, pancreas, stomach, small and large intestine), I am still alive and forever grateful. I think though my system is still somewhat sensitive although in no way close to the severity that it was. Even when I was not having so much trouble with reflux and keeping food down, I had trouble gaining weight even though a nutritionist said that I should be gaining with what I was eating (at that time I was only eating by mouth). I did notice that then I was having more bowel movements than I did when I was healthy (like 3-4 times a day). I also struggled with diarrhea for awhile after the transplant, but it did get better as long as I am careful. I have seemed to be a little worse after I got a severe Candida fungus infection of my esophagus (a rare happening for a normal immune system, but, of course, with my transplant, I am on immunosuppressants). I seemed to gain weight much better with TPN, but I would then get an infection in my line and the recovery from that would set me back. I would like to use a j-tube to see if I could tolerate feedings better in it; however the j-tube I have now does not work because too much leaks out of it (I would go to bed feeding with it with towels all around the area and then wake up with them soaked) and hurts now to use. I can not have this fixed though until I get my weight up to 90lbs. I am currently 85lbs being 5' 6", but when I was at my healthiest I was more like 120lbs. One problem my doctor investigated is that my insulinlike growth factor 1 which helps the body to absorb what is taken in. In me it is very much too low, although my doctor does not know if this has caused my low weight or it is my low weight that has caused it. The one way to raise it would be to give me human growth hormone, but this can raise the risk of rejection of my transplanted organs, a risk I cannnot take. My doctor has put me on an anabolic steroid to help me build up my muscle that I have lost due to losing so much weight. I am currently just trying to take it day by day and do the best I can. I would love any new ideas. I hope I did not bore you with my situation, but you have just been so sweet in your response to me and others. Once again thank you. Many hugs.
Warm regards,
Bobbiejo
- By charliegirl3
- Posted May 28, 2009 at 6:45 pm
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Hi.
I am new to this J tube stuff and was wondering what to do when the balloon inside your stomach keeps turning and really hurts. My doctor says it can't be happening but it does and I don't know what to do about it. Also, I have alot of pain around the site and can't seemed to figure out what is causing it. Can anyone help?
- By Novagrad
- Posted May 28, 2009 at 8:43 pm
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My doctor made it so my tube is not that big. I wear camisoles instead of bras because he prefers to have something tighter with the tube. Plus I'm only 84 pounds so I really don't need much anyway! The pony tail holder is working well.
I admire your strength - you are amazing!
Mimi
- By Novagrad
- Posted May 28, 2009 at 8:45 pm
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Charliegirl - your tube balloon CAN be causing you problems! Mine did when I had a mickey button! My balloons actually wore away the jejunum and caused multiple blood infections! They think the tube balloon is to blame. Once that tube was removed, my pain was better immediately! What kind of j-tube do you have?
Mimi
- By Novagrad
- Posted May 28, 2009 at 8:48 pm
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Bobbiejo:
You and I both seem to have similar problems with absorption! I'm 84 pounds right now but I'm 5'3" - you must be really skinny, being 5'6"! Do you have osteoporosis too? I had the same problems with the j-tube. I used to be on immunosuppressants and I wonder if that caused some long-term effects on me.
Mimi
- By Katie811
- Posted May 28, 2009 at 9:16 pm
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Charliegirl...have you checked with your doctor to see if you have granulated tissue around your stoma?...awhile back I started having discomfort there, took a closer look and just about panicked...it looked like the tubing was bulging out...I thought my tube was going to pop out!...we went to the ER where we spent 5 hrs only to find out it was granulated tissue...quite common, we were told...I got a prescription from my doc for an ointment that got rid of it (and the pain) in a couple of days...I've been told to turn my bulb...it doesn't hurt and, shouldn't...keep pestering your doctor till you have answers and are comfortable...my goal is to wake up happy and comfortable every day...take care Katie
- By alphabubo
- Posted May 29, 2009 at 8:52 am
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Dear Mimi,
I had a DEXA bone scan earlier this year which if you looked at one score showed osteoporosis but as I am no way close to menopause being only 28, the other score was looked at which showed definite osteopenia. I have been put on a generic form of Fosamax. From what I have read, I am concerned whether or not I am really absorbing it or not, but I plan to have a bone scan next year in order to compare the results. I am also having trouble with low vitamin D levels so I have been on a supplement and should soon get back results to see if that has helped any.
It seems so strange about my weight that I weigh now what I weighed when I was probably in third grade or so. I always joke that if we went to Chuckee Cheese or such I could still probably ride the rides without trouble or we have to be careful if it gets too windy as I might just blow away...
I am sorry that you have also had similar trouble with the j-tube. May I ask what you were on immunosuppressants for? I hope that you may have a good weekend brightened with new reasons to smile and hope. Many hugs.
Warm regards,
Bobbiejo
- By alphabubo
- Posted May 29, 2009 at 8:59 am
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Dear charliegirl3,
I agree with Mimi that the balloon could be a source of your pain. I have also noticed that when I had a tube that was held in with a balloon, if the area around it and inside became sore, it often meant that the balloon had burst and that my tube needed to be changed. The tube would not always just come out if the balloon burst. My surgeon who placed the tube, said that if the balloon has burst, bacteria can gather there and possibly cause the pain. I would have your doctor check to make sure that the balloon has not burst or if it is perhaps inflated too much. As Katie said, I have also been told that it is a good idea to turn the tube around in its place. I hope that you can figure out what is causing your pain. Best of wishes and many hugs.
Warm regards,
Bobbiejo
- By charliegirl3
- Posted May 29, 2009 at 10:23 am
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Hi,
I can not turn the tube. I have tried several times but it just stays in one place. I have made calls to my doctor for 2 weeks straight and did not even get a response from them. I am so left in the dark that I don't know where to go. I had it put in under alot of protest and I think that got my doctor mad and now I am left hanging with out a safety net. Every morning the balloon turns for about 2 hours with a lot of pain and it wakes me up. But nobody will listen. Just really frustrated. I have cleaned the site where it goes in and put a gauze pad there and it comes back all yellow and green stuff on it. Is that normal?
- By charliegirl3
- Posted May 29, 2009 at 10:27 am
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Hi,
I really don't know the name of my tube except it has 3 outlets. One is the balloon,one is gastric and the other is jejunal. Do they hurt when you get them out? I am really pushing hard to get this out and try TPN . I hurt so bad that sometimes I can't even stand up.
- By alphabubo
- Posted May 29, 2009 at 2:20 pm
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Dear charliegirl3,
So do you mean that you have a g/j tube such that the two ports are connected? I am afraid I have only had experience with separate j-tubes and g-tubes. I think that you need to possibly call someone higher up in the doctors' office in order to complain and make sure that you get through as two weeks without a response is just not acceptable. I have had trouble with one doctor's office not responding to my calls, and my mother has helped me by calling someone in human relations, I think, but I can not remember exactly the name of the department. Because of her intervention, the office got much better at calling me back. I also noticed that if I called, I might not get a response (even though at this time I am in my twenties, not a child anymore), but whenever my mother called, someone soon called me back. One often has to stand up and be an advocate for oneself in order to get the best treatment. I know this can be difficult especially when one is not feeling well. Do you have someone who can be an advocate for you? I do not know what I would do without my mother fighting for me.
Some leakage of yellow or green fluid is possible around the j-tube or g-tube sites. I just make sure to change the gauze I have around them as often as needed to try and keep the area around the site as dry and clean as possible. Sometimes I have to this 3-4 times a day or more, especially for my j-tube as my g-tube site only leaks a little. I would just be sure to keep an eye on what the area around the site looks like to see if there are any changes, or if the area and leakage smells odd as this might indicate an infection.
I am sorry that you are experiencing such pain with your g/j tube. I once had a j-tube taken out, and it did not really hurt, but the site itself would not heal, so a tube had to be put back in. To have it fully removed since the site will not heal properly by closing up would require stitches, and the doctors are afraid to do any kind of procedure until my weight is up. Taking out a j-g tube though might be different.
I have read of many people who have done well with TPN, but I just want to warn you that it does have more risks than tube feeding, especially such as infections or possible liver problems. I hope though if you end up going on TPN that it will work well for you. If you have any questions about TPN, I would be glad to answer them as best I can with my own experience that I have had with it. Let us know how it goes for you, and I truly hope that you can get your doctor's office to respond to you. You will be in my thoughts and prayers. Many hugs.
Warm regards,
Bobbiejo
- By JulieG
- Posted May 29, 2009 at 6:26 pm
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Hi Kathleen,
I am also a head and neck cancer survivor (4th stage, unknown primary) and a tube feeder. I got a G tube in August 2006 and have been using it for all food and liquids since Sept. 2006. My cancer seems to be under control though just had an iffy chest CT scan, which may mean metastases to the lungs--too small and soon to tell, so will go back for another scan in November. Like you, I've adjusted to being a tube feeder pretty well, though I don't take anything but the prescription food, which is provided free through my insurance. Haven't had any problems with energy, because I eat at least 2000 calories a day and maintain my weight at 120 without any problem. I do a yoga class three times a week and engage in other exercise like biking and walking. I also travel--it's easy in the US because my food provider just sends the food by UPS to wherever I'm going. Internationally I have to buy it from a provider in my destination country or, if there isn't one, bring it with me, packing it in a box and checking it with my luggage. The secret to getting through airport security with my food (5 cans or more if I'm going international) in my carry-on is the laminated copy of the prescription plus the letter from my doctor explaining that I must carry this food with me. Problems with the tube--for a while in early 2007, my stoma was very sore, leaking, bleeding and producing granulation tissue. The doctor thought it was because I was so thin, so not enough distance between the inside and outside of my body! I went to "wound care" at the hospital and they helped me, with a barrier cream and silver nitrate sticks. Eventually it healed and later that year I got a Mic-Key button so I could cover the tube with a waterproof bandage and swim in the ocean and lakes. This year my doctor taught me how to change it myself, so when it falls out I just put a new one in. That's probably enough from me for now! Just wanted to share my similar experience.
Thanks for your posting--I was very glad to see it.
Julie
- By Katie811
- Posted May 29, 2009 at 9:02 pm
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Hi Julie...so nice to meet someone that has a similar lifestyle...I should probably know this, but I don't...what is the difference between a G tube and a PEG tube?...my setup consists of a 12" long tube that is about 3/4" in diameter... one end goes directly into my stomach through the stoma and is held in place with flat plastic tabs ...it has a plastic clamp that, when open, can be slid up and down the tube...the feeding end has a small attachement with a plug that snaps closed when not in use...to feed myself I insert a plastic feeding tube into this then I pour the liquids into that...very simple setup compared to what some of these folks have...it is gravity fed, I have never used the plunger that comes with these tubes...also, I do not throw mine away...I clean them after each use with hot soapy water and a baby bottle brush...right now I have 4 that I rotate and have used for 2yrs...I keep one in each car and 1 in my gym bag along with cans of food...just in case I'm stuck somewhere and get hungry...if we're going to be gone all day, I have a small cooler and those blue ice blocks...I fix myself a homemade smoothie, put it in the cooler with bottled water and a couple of cans of supplement and away we go!...we belong to a hiking club so I always take a bottle of water and a can of supplement in a small backpack...when we stop for lunch or snack time, I just find a quiet spot and whip out my tube and feed myself...long ago I got over being concerned about what people think...there are 2 reasons I fix food in the food processer...1 is that I got bored with just eating the supplement, 2 is that I wanted to gain some weight and that wasn't happening even on 5 cans of supplement a day...I can't even swallow my saliva, but I do remember how much I enjoyed having variety in my meals...mentally this works really well for me and, I think, because of this I adjusted better to never eating by mouth again...whatever works!...your comments about travel give me the incentive to do this trip to London in Sept...Apria is the company that I get my supplement from...they do ship any where in the US, but not outside...my husband, who has been and is extremely supportive, is a little hesitant about this...he's worried about how challenging this trip might be and my getting stressed...I think that by not doing this I start setting up barriers for myself...I'll win him over and we'll go!...tell me more about yourself, Julie...where you live, are you in school or raising a family?...or, like me, happily retired...Kathleen
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