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Doc said I'd just be "uncomfortable" for a day or two.

jcortney's picture
jcortney
Posts: 415
Joined: Sep 2012

He lied. Damn feeding tube hurts like hell.

Joe

Mikemetz's picture
Mikemetz
Posts: 342
Joined: Nov 2011

If it hurts like hell, it's not right. I'd go back to the doc right away and have it checked. Most of them will let you come in without an appointment this soon after the insertion.

Mike

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Joe,

If it's uncomfortable, I agree to have it checked. We were told a couple of days with some discomfort. It was just that, then hardly noticeable. Just a bit of a nuisance.

Good luck....and I'd ask for a full refund plus some extra for your pain and suffering.(little humor) :)

~C

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

and it hurt like HE**!! They finally knocked me out the first day with Dilaudid...the cramping was that bad (I was already in the hospital for a punctured lung from getting my port)...They sent me home the next day...but it was still cramping pretty bad (like labor pains...the cramp would build upon itself hitting a cresendo, then fade off...only to begin again 10 seconds later). Call your doc...but I'm sure that when he calls what you're feeling "uncomfortable" it's becyase he's never had one. I'm not the only one on here who thought it was pretty darn painful

p

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Can't say enough about Dilaudid. Of course, missing out on everything is only worth it short term. Rick.

donfoo's picture
donfoo
Posts: 1214
Joined: Dec 2012

Did you adjust to the tube naturally or was there any other procedure to improve the adjustment to it during those first days and weeks? Just curious what to expect.

I know the biggest bummer for me is the lack of joy tasting wonderful food. LOL

don

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

Taste goes away with the first chemo (with a return about a week or so later)...radiation kills them for weeks/months after it's finished. I'm 6 months out of rads and can only taste the first few bites of food (scantily)...then it's back to tasteless.

p

Mikemetz's picture
Mikemetz
Posts: 342
Joined: Nov 2011

I forget the medical term, but this is a cruel trick your eyes and mind play on your taste buds. It also happened to me. You eyes see the food and your mind tastes it from past memory, for a while. You can "taste" the first few bites from memory, but soon the taste sensation goes away.

Be encouraged that your real taste does come back, little by little, but it's not likely that you will get back 100% of your taste for every kind of food.

Mike

jcortney's picture
jcortney
Posts: 415
Joined: Sep 2012

Mostly hurts when I move or take a deep breath (or god forbid a cough sneeze) . I'm going to give it another day and see if it gets any better.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I was in the minority, too - mine was definately more than "uncomfortable". I was already in the hospital, on juicy pain and anti-nausea meds when I got my PEG installed. I still had issues when I left the hospital a few days later. Tried to get into the gastro's for a visit (on the weekend, New Year's Eve), and was blocked by a nurse/office aid/whatever who let me know that since I'd never SEEN the doc outside the hospital, I had to wait to see him outside the hospital - told me to go to the ER. I did, and they very kindly checked my PEG placement, and sent me on my merry way, telling me to schedule an appointment with my gastro (did I mention the appointment Nazi would NOT let me come in before my "first" appointment, scheduled a few weeks out?). Sigh and Grr. Hope you're already feeling some relief.

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Joe,
I went through 2 PEGS. My first one started out fine, it never hurt hanging around, but got more difficult to use, the last time we tried to flush or feed through the first PEG I was sobbing it hurt so incredible bad. So, during 5th week of treatments right after rads I stopped in for a quick change at the hospital outpatient area. 2nd PEG worked great till day it was popped. The hanging out and the incision never were an issue just the performance of the PEG itself. Fist one crap and hurt like Heck. 2nd one great and worked every time

Best,

Matt

corleone's picture
corleone
Posts: 156
Joined: Jul 2012

My G tube was inserted 5.5 months ago. The pain was very intense for about 2 days. The pain was around the insertion area and also referred to the left shoulder (I can’t say which one was worse). The pain was either spontaneous or triggered by eating/tube feeding. The character of the pain was very similar with what Phrannie described earlier. I guess there was some peritoneal reaction involvement, but there was nothing to do (it happened during a long weekend) except for going to the ER. I avoided that, as I might have had the G tube removed (I didn’t want to go through the same procedure again).
Now, after 5.5 months, it is completely useless, as I had been eating “normally” for the last 2 months. The medical oncologist didn’t agree to pull it out until after the last chemo treatment (occurred 3 weeks ago), due to the dreaded mucositis (I had that, but I was able to eat). Now I am stuck with the tube until Jan 8th, as there was no earlier appointment available (they said the removal must be done at the same center were was inserted, with all the equipment – like imaging – available). I hate this thing, especially since I have some granulation tissue overgrown that makes it more difficult to tolerate.

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

might be able to be cauterized. That happened to me with my trach stoma. It's now gone and not painful anymore. And now to Joe, there is no way it should be hurting now that you've had it that long. Does it look red or swollen underneath the flange? You might have an infection. If it's that painful, I would go to an ER. Otherwise check with your doctor first thing Monday morning.

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

I'm hoping so.

p

jcortney's picture
jcortney
Posts: 415
Joined: Sep 2012

It woke me up this morning about 4 am. The tube felt like it a being pulling inside my body. Pressure built up for a few seconds then almost with an audile pop released. Did this three or four times before I said screw it and got up. Ate some cereal and had a few cups of coffee and it stopped. Later, the area around the incision (rib) was very sore. Got the doc on the phone at about 9:00 am and he is going to meet me a 7:00 AM tomorrow to have a look even though he is off.

Took a couple of advil and had a nap and everything feels fine right now. I have no idea what's going on but almost no pain at all.

J.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Hi J.

I had that too. It's like your stomach is "rolling" under the tube or turning if you will and then the pressure builds up and suddenly "pop" ...it was kind of cool for my boys but my wife and daugther thought is was gross....I joked with my wife that each of our kids during pregnency would push their heel against her stomach wall and it would do the same thing...so why is mine gross?? :) :)

Best,

Tim

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