Peg Tube is out !!! - Oral Cancer Support

Talk about God working in mysterious ways. The hole where my tube came out of my stomach got infected and I called the doc and he tells me to come in today(Friday) and we would see what to do about it. I told him on the phone that I wanted it out since me and my wife feel I am eating good enough to survive without it. He told me as long as I felt that way he would take it out. I feel the infection was Gods way of getting me down to the doc to get it out. I am very nrevous about all of this because I have gotten very used to the tube and always knew if all else failed I could get my nourishment through the tube. I feel like this is a blessing though and if the time wasnt right to get it out then none of this would have happened.

Billy

Yo Billy--Go!
There are so many stories on here of people who've been peg-dependent for years and getting it out must be a HUGE change, but you're so strong, you'll cope with the eating, one way or another!
Another step

Well done,
Brenda

Way to go Billy!! It was a good day all around. Today I had my IV port removed and hope this closes this chapter for good. Again, Congrats.

That is great news Bill. I am glad to hear you are doing well buddy.

Yea....Billy, I knew you could do this!!! So proud of you my friend. Keep me posted on your journey. Prayes and well wishes, LJ

One more step FORWARD !!!! Good for you !!!

SHar

They are picking up my feeding pump and my suction machine next week. I have deep suction catheters and several bags for a dual kangaroo Joey pump. Any suggestions on what I should do with them? I want to donate them to someone or an organization that can use them.

Let me know if anyone has any ideas.

Thanks,
Billy

So Happy for you Billy,
I was peg dependent too. Now, I have gained so much weight, my pants won't fit. It is so much fun to eat now even though I can only eat on one side and my teeth do not meet, somehow, I tried one food at a time and it still takes me forever to eat. BUt I just take my time and relish every minute of it. It was so scary at first. Keep Carnation Instant Breakfast on hand, just as a backup. That made me feel better.
Take care!
Debbie

It is scary and I was scared to have the tube taken out but my wife told me it was time and I agree with her. It takes me a long time to eat also but I try not to get in a hurry. I have some Carnation here and I also have 11 cases of my Nutren which I drank this morning mixed with some milk. Yummy...LOL

Glad you got that thing taken out! That was a huge day for me. I've had mine out since June and still takes me much longer to eat than everyone else. Take care!

Hey Billy, Congrats on the tube being out! Mine got infected before my treatments began. In fact I ended up at the ER the weekend before my first rad and chemo was to start. Had to delay the start for a week while I healed and got strength back. Ended 35 rads and 7 chemos on 9/17/07. Had the PEG taken out 3 weeks later. Although I did use it a lot from week 5 till one week after, I couldn't wait to get it out. I had to change dressings a couple of times per day because it leaked around the tube and it hurt most of the time. Oh well it served it's purpose and it is out! Although it was pretty cool to be able to play cards and be eating at the same time with the tube! Now if I can just get my saliva glands to work at 100%....

Bruce (SCC Base of the tongue, stage 3)

scheduled to have my tube out this monday nov 26...been in about 7 months....still little or no saliva..eating is difficult..drink boost...have not used the tube for almost two weeks now experimenting...but have lost 4 pounds...have to find a way to force more food down..it's hard tho with little taste or saliva...doctors say push forward...i'm still early in the recovery process. anyway monday is th day.

Always keep in mind Wayne that it is your choice whether or not the tube comes out. If you dont feel comfortable with it then by all means leave it in. One of the main reasons I got my tube out was yto force myself to eat more regular foods. I knew with it out there was no more depending on the tube. Like I said bud, if you arent 100% sure that you dont need it then leave it in until you are.

Billy

Buzz gets his PEG out a week from tomorrow! His was placed on August 27; he hasn't used it in the past couple of weeks, although I really feel that he should have, as he is still at 162 lbs (down from 185-188 consistently for the past 27 years!)

Billy: did it hurt? I have told Buzz to take a pain pill AND a Lorazapam beforehand...

The second time I had it done it hurt for a little while but after 15 or 20 minutes the hurt went away and then it was sore for a few days.

Pain pill is a good idea.

Hey,
Mine hurt (well not the horrible hurt we think of) but just an unusual tugging that feels like your stomach is coming out and then it is over!
TAKE A pain pill because it will be sore later that evening and in the middle of the night.
Good luck!
Debbie

bill...thanks for thoughts on peg coming out.
home for lunch today...1/2 egg salad sandwich dipped in new england clam chowder and swallowed with milk...other days hotdog wrapped in bread and dipped in chicken noodle soup...swallowed with milk.....how long can i keep forcing stuff down my throat that has little taste and is thick and dry from no saliva. sorry to dump this on the forum but i sure do get depressed thinking about the rest of my life not being able to sit down and enjoy a regular meal like all others in my circles. i know i know think of others in worse shape....easy to say hard to do.
guess i should tell the forum the other half of my tragedy this year....two weeks before i was diagnosed with stage 2 tonsil cancer....my 20 year old daughter hung herself leaving a 1 year old grandson for my wife and i to raise. the father is a long time heroin addict and currently in jail. have not had time to properly grieve as radiation and chemo started right away..treatments hit me hard as my whole family on my moms side is thin....i weighed 135 goin in. came down to 115 after 7 weeks treatments. then up to 121 until stopped using nutren2 and the tube. lost lost another 4 lbs since then but as i said doctors want the tube out. i agree with them...i hate the thing. also time to come off the roxicet and ativan....so thats pretty much my whole story....i have to admit...waking up every morning with a god-awful dry/sticky mouth(no matter how many times i get up and gargle/rinse/squirt)is difficult to manage psychologically(my wife and i do go for counselling). some days i feel things are improving...but then there are the other days.
trying to end this pity party but once again easier said than done...thanks for any and all replies.

Billy FANTASTIC NEWS! So proud of you! I know its a bit daunting to get back to the regular eating world. Just take things slow and if you feel you aren't getting enough calories at first - down a few ensures throughout the day. Eventually you'll get up to speed. It took me several months but I am now pretty much on par with everyone else. I don't taste as much and I eat slower but I still eat most everything I used to love!

Wishing you a very happy thanksgiving. With all that good smelling tasty food around you this season...you'll be back at it in no time.

Hello Wayne.
My what a load you and your wife have to bear, so many losses. I am glad to hear that you are getting counselling, as you need all the support you can get, to help you through this multitude of challenges.
You sound like you are doing not too badly with the eating given the obstacles of mouth dryness and little taste. Have you had help from nutrionist or dietician on boosting the calories in the things that you eat and making higher calorie food choices?
My husband who is now 8 months out of treatment had a big problem with depression but seems to be getting better emotionally as he feels better physically. Hopefully this will be the case for you also. Eventually the good days will outnumber the bad, the worst is behind you.
Joan

Wayne, Hang in there and let me know about Monday. Like others have said the decision is yours. Last night I slept for 4.5 hours straight for the first time in 6 months. I wish I knew what I did different yesterday to have that happen. TO OTHERS OUT THERE - My dry mouth is not consistent at night, is it that way for you? Maybe there are things that we do during the day that affect it that we don't even realize??? I do have a room humidifier but I have it on every night.
Wayne, you will be in my thoughts and prayers over this Thanksgiving weekend, keep us informed