Christine, we share the same in the severe nausea. It controls my life. Same way, can go days, weeks or months trapped inside. Zofran pills are not effective so injections. Sometimes I vomit so violently it scares me. I too am very glad to be alive!!

Kathy, having cancer has been a life changing experience. Although there are many times I am extremely ill and frustrated, it has transformed me in every way. The only family support I have is my husband and children so during my first surgery I was isolated and alone during the day. It has brought the most wonderful people into my life and giving back when it is physically possible for me gives my life purpose. I believe that everything happens for a purpose and puts you on the path you should be on. That path isn't always easy.

Paula

Have you considered getting a low profile feeding tube, commonly referred to as a "button"? Unlike the standard PEG with its long dangling tube, the button almost never gets dislodged or pulled out, can only fit in correctly instead of too deep or too shallow, cuts down if not eliminates granulation tissue, needs no clamps since a anti-reflux valve does not let it leak, and can be changed at home safely. I should have switched over years ago but my CCC's lack of experience with them and unwarranted fears of clogging the anti-reflux valve with all my crushed medicines and blenderized diet held me back.
If you do get a button, the AMT mini-one is much better than the Mic-Key one that is the default choice of hospitals due to marketing and contracts.
Glad you found us
Charm

Hi Frank, I did have a Mickey button place in early 2011. It became dislodged and nicked a blood vessel. I knew something was wrong and went to the ER, they ordered the wrong test, an X-ray, which I knew would never see if the button had dislodged. I have a medical background. They sent me home. My abdomen filled with blood like I was pregnant and back to the ER and in the hospital for six days where I almost died. It was too late to aspirate the blood and was left with a large hematoma that took my body a very long time to reabsorb. A new PEG was put in, then got severely infected. I have had nasal, traditional PEG and button and opt for non of those right now. I am trying my best to keep weight on without a any tubes but thank you for the suggestion.

Paula,
You are another inspiration to me. We have so many on this site that have had treacherous battles yet remain positive and helpful. Just amazes me. Thank you!!
Kathy

Paula
.
If a button does cause problems, more likely than not it will be a MicKey (Kimberly Clark). My one mickey button burst it's balloon and fell out in three weeks. On all the forums for tubies, the consensus is that there has been major quality issues with the Mickeys compared with AMT mini ones.

I'm sorry to hear all your problems with the PEG. But you are doing a good service here by sharing them. For the longest time, I have been a voice in the wilderness here at OCF about PEGs not being as harmless and safe as touted.
Sad to say, most doctors are clueless on PEG complications. heck many of them can not even measure button length correctly (they forget to both laying down and sitting up) Their treatment of you is shocking. Actually my wife is much better at changing the button than any of my doctors ever was.

Not a big deal, but Frack is not a typo for Frank. It's just that my first choice of "Old F..k" does not meet OCF standards even though George Carlin used it. It's from the reimagined version of Battlestar Galactica and means the same thing in that future fictional world.

Sorry for the mix up Frack, After the several year nighmare with these PEGs, against my doctors advice I am going without. For me they were a nightmare. The nasal tubes are extremely painful and of course out in the open. I didn't really care, I still went about my business. After last September and then the serious infection earlier this year, for me if I can do without it I will. I have to be very careful eating though. I can't try to eat any solid food without adult supervision i.e. my husband. I don't very often, but when I do he is present. Last month I was home alone and saw a box of Milk Duds in the pantry. I made the mistake and ate one. It got lodged in my throat, and as I was choking, I thought, after going through all this cancer stuff I am going to be done in by a Milk Dud and my family will find me dead. Luckily I was able to dislodge it. I will never try that again!

Paula

no apologies necessary. You are a super woman to persevere through such trauma. I get just going about one's business.
The first months with feeding tube, when I had to use the gravity drip bag because I couldn't take the bolus syringe rate of feeding, I would carry my folding tube pole into resturants, set it up, pour Jevity into the bag, hang the bag up on the top hook and then connect to my tube. since the pole is six feet tall, it really stood out in the entire restaurant but we were travelling and my wife had to eat somewhere.
Hang in there, You are a great example of how we can overcome anything. We're glad to have you here at OCF
Charm

Hi Paula. It's lovely to meet you.