Well as some of you may know I had some problems with my PEG being blocked due to what seemed to be excess air that just wont give. Now when I push water to flush I get extreme pain and cramping in my right side that shoots straight up to my armpit. It actually is very painful, like a knife...It gradually gets better by the time I reach my carnations but still a small amount of pain. Then at night if I turn over to switch side I get a shooting pain in the same side. I have done research and cant find any source of information on the subject and do not want to rush over to the ER just to get sent back home. I can do milkshakes and most liquids,the ones that dont make me gagg and also can do vegetable soup pretty well. Should I just have the tube taken out wednsday or should I ask them to replace the tube, anyone experience the massive cramping and pressure whille feeding by syringe before? I cnat do gravity feeding anymore, Have to push it through by syringe and this is pretty much when the problem slowly started to arise. Please give me adivce if you may know?
Your Friend,
Nathan
Ive had that pain and it was due to my peg tube becoming dislodged. This happened while I was in the hospital. Nobody would listen to me for several days. I would suggest you call your gastro doc immediately or go to the ER. This needs to be checked, an xray wont find it, you need a CT. When a feeding tube becomes dislodged it can become embedded in the stomach or abdominal wall. It happened to me. The pain will gradually become worse and worse as days go by until you will not be able to even put 10 ml into your tube without causing yourself to be in agony.
Do not give up your peg tube. If you cant maintain your daily calories and hydration then you are not in any shape to be rid of it. Patience. I know it stinks but it really is your friend and you should take advantage of what it can do for you. Until you are able to take in enough calories and sustain yourself without the tube for 2 months then you shouldnt have it removed. Make sure you are getting enough protein. That can be a tough one when relearning to eat. Try adding high protein powder to your formula to help speed your healing.
When you have a peg tube you should not be lifting anything over 15-20 pounds. You need to be use caution even with everyday activities. I hope your issue is nothing serious but it could be. Hope you feel better soon.
Can I make it to wednsday if I dont use the tube?
Yea, you will be ok with seeing the doc Wed. Just watch yourself very closely with your hydration and calories. You have come way too far to end up becoming dehydrated. Please let me know what the doc says. I wish you well!!!
Christine, thanks soooo much...I literally broke down in tears after hours of wondering what was going on. I just am so tired of the set backs, last week was white patches on my tongue that the doc said was not thrush but was from excess food build up I had not fully chewed. She was right and it went away after a few good cleanings and then right after it was this pain getting worse every day. We are hoping it is just forced air or gas since this all started after me injecting all my food. Anyways, I am just nervous about this putting me back 10 steps after all I just went through. The research scared me about dying from dislodgment and what not, so I am going to stay calm and drink my boost and wait until wed. morning. Thank you so much for the info, you rock!
Your Friend,
Nathan
So glad that you are ok now. When you have a health problem and are unsure about what is going on, dont panic. Just ask and someone most likely will know what it is and will give you a hand. Thats why OCF is so great! We all can learn something from each other.
If it gets worse then go to the ER. But since you have an appointment on Wed you should be ok to wait for that.
Of course you are nervous about your health. You went thru heck and back. It takes a long time to recover after what you have been thru. I know you will get there
Someone at the cancer center recommended a water-pic to keep my mouth clean. I used it during RT on a very low pressure setting with about a quarter teaspoon of 50/50 salt/baking-soda added to the water. I still used it daily.
I had PEG tube problems and got mine removed early. I don't recommend this because I wasn't able to holding my weight. My appetite was very poor and, after a bite or two, food tasted bad. I was living on body fat and grape juice and my RO threatened to put a PEG back in!
Try if you can to get your PEG fixed and hold on to it until you can easily hold your weight by eating normally. Without a lot of effort, this can take a few months.
Well, its all set for 8am tomorrow morning after a days worth of phone wars. The county system is so much different, you cant call your doc personally and usually it is a teenage girl on the other side of the phone who has no idea what she is talking about. You literally have to beg and say weird things to finally get a nurse on the phone to get the ball rolling. So they will look at it tomorrow morning and I guess decide what needs to be done. Hopefully something simple, I really hope so...The pain shot me a couple times out of nowhere last night but I am perfectly fine right now. We shall see...
Your Friend,
Nathan
Hang in there Nate, you can do this! Keep your chin up bro
Well if it can happen, it can happen to me...I knew everything was too easy, they were satisfied with my weight gain as well as my appearance and said " Step right in, lets remove that thing " As the doctor pulled on it I almost cried, then he twisted the tube and I kinda did start crying. He says, not good...Sounds like buried bumper is what he said. So since I drank all my boost this morning I have to return at 3 pm for surgery, please wish me luck or help calm me down, this sounds serious and I am freaking out. Anyone heard of this before, theyre saying it is very rare. But that is the story of my life, if it can happen it will happen.
Your Friend,
Nathan
Hi Nate. When John was scheduled to have his PEG removed all I heard was what an easy 10 minute procedure it was. Well we also fall into the "why can't it go as planned" group. John went in to have his PEG removed and they couldn't get the balloon to deflate so they had to use an Ultrasound guided needle through his stomach to deflate it, it took them almost a half hour. It was "uncomfortable" while they did the procedure but afterwards he had no pain. Good luck!
Oh boy! Always something with you, huh? By now Im sure your procedure is over. Gosh I wish I had seen this earlier. I would have told you take pain meds before you go. Too late now. Hope all went well and you are alright. I will be watching for your post about what the heck happened and what they had to do to remove the peg. I know it does hurt like heck getting it removed. The pain lasts for at most 2 minutes then...WOW!!!! You will feel like a new man when that thing is gone.
glad they are taking it out and doc sees you are doing well enough to do so, so sorry it isn't going as smoothly as you would like but like me, nothing that happens is ever easy with anything! so Murphy's Law my dear. keep chin up and head held high you are on your way back out of that tunnel! please keep in touch! taking that thing out can't be any worse than what you have been thru think of it that way.