CSN Login
Members Online: 12

PEG gone

robswife87's picture
robswife87
Posts: 176
Joined: Mar 2013

Another step in the right direction. Rob got the PEG pulled on Wednesday. Said it burned like HELL for about a minute. He worked up a real good sweat. Walked hunched to the car and was great by evening. Outside pretty muched closed as of today. 

I wasn't there for it, absolutely thrilled it is gone. 

He is off all meds except some oxy at bedtime. By the end of the day he says every bone in his body is killing him. Not sure what this is about but hope it gets better soon. He has not slept a full night in 2 weeks. 

On the bright side he is eating well although he says he hates it. Says it mostly doesn't taste and it is hard to go down.

I sometimes think this will never really be over and our lives will be like this forever. Hoping not

Sandy

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

It just "feels" like it Smile.  Week by week his taste will improve, and saliva will start to return.  I've always thought what a rush it would be to have a poof moment, and taste was back.....it just doens't happen that way, darn it.  His bones may be aching because the bone marrow is trying to build up WBC's again.....that's just a guess, of course....but WBC's stay low for a long time afterwards....so the marrow has a lot of work to do.  Maybe an OTC Clariton might help with that?

WHOO HOO on the tube being gone!!  That was the one day to hit the same high for me as the day I ended radiation....

p

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Congrats on that! I'm so looking forward to having mine removed! It reminds me of an alien breaking out of my body. It's uncomfortable when I sleep (I tend to lay on it a bit) and no matter how often I clean it, it has a sour smell that is just YUK! ~lol~

"T"

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

pouring some Coke down your tube does wonders for the oder.....and it gets it nice clean inside.

p

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

P,

I've used Coke and ginger ale... cleans it out all right but the smell returns within an hour or so. I haven't used it since the Memorial Day weekend and I'm eating Ok as well as maintained my weight. It's time..... 

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2303
Joined: Jan 2010

WTG!!  one more step in the right direction.  this is a slow process so you will both have 2 b patient.  it will get better little by little.  hang n there.

dj

CivilMatt's picture
CivilMatt
Posts: 2871
Joined: May 2012

Sandy,

You mean I could have been celebrating since Wednesday?  Well, it is a big step in the right direction.  I did not eat seriously for 7 months, the feel was so terrible I chose my smoothies over food, but that changed for the normal.  I just finished two Hot Dogs.

Matt

patricke's picture
patricke
Posts: 444
Joined: Aug 2006

Hey Sandy,

Congratulations to Rob on getting his PEG pulled, that's great news!  This is another step on the recovery road, and a long road it is, so patience is the the word to keep in mind for a very long time.  Most importantly, life does get much much better, it just takes time, so just keep it movin forward.

PATRICK 

TracyLynn72's picture
TracyLynn72
Posts: 648
Joined: May 2013

I know he's happy to have that thing gone.  I'm very grateful for Peggy, but I'm ready for her to leave me :)  Congrats on another huge step to his (your) new normal!! 

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Though I know that is no comfort ....the bone aching and just the overall BLAH feeling I felt for what seemed like forever....I am 20 months out and my taste buds came back 85% at about 7 months post ..then about 3.5 months ago they went totally AWOL ....then just this past week they have started coming back strong ...I"m soooo excited about that ....

I don't remember how long the BLAH stayed with me ...but I have to tell you it came and went too for the longest time ...more came than went. :)

It will end ...it will get better ...and boy oh boy will you forever be changed probably for the better (many do feel that way) for having been through this battle ...you may not feel that way now, at the moment ..but I'm betting my taste buds you will (okay, maybe that is a bit too dramatic, but you get the point) ...HA!

Best,

Tim

sin9775's picture
sin9775
Posts: 191
Joined: May 2013

Sandy, I am so glad for Rob.  It sounds like things are moving along nicely.  I like hearing that people can get their tubes removed in a timely manner, it gves me hope for my "baby" brother.  Please keep posting Rob's progress!  Good luck and may God continue to bless you both.

~Shawn~

yensid683
Posts: 225
Joined: Apr 2012

on the path to 'abi' normal. 

I had a similar experience when my PEG was pulled in October, loud pop, sharp sting and left over soreness, but it went away very quickly and in just a few days I was able to sleep on my stomach again.  God how I MISSED doing that!.

Appetite and taste do come back but they take such a long time and it is frustratingly slow.  I was reviewing my journal last week for what it was like a year ago (Journal is up to 178 pages at this point) and compared to how I felt then, the transformation over 12 months is nothing short of amazing. 

When I was just a few months post rads, I ate simply as a survival tool.  Food had no appeal, no enjoyment, little taste and the amount of water I had to take with every bite was discouraging as it could be.  It could take up to a full glass of water just to finish half of a sandwich.  I lamented in my journal that food would no longer be a source of joy for me.  I didn't see a rosy future because of it. 

I hung in and found that very very (and I can't emphasize it enough) very slowly, eating became less of a chore and more enjoyable.  It took months for taste to improve, for my throat to seem to open back up to what it had been so I could actually swallow something without the hard struggles, and to finally find the joy in meal times.

I found that my favorites came back, saliva started to recover (about 60% right now) and that if the food was wet enough like fresh produce, I could eat it without extra water.  A burger used to take a full glass of water, now it takes maybe an ounce or two.

give it time, rads hit hard, probably harder than anything anyone will ever encounter with healthcare and treatment. 

Attitude is also important.  Though I dispaired of ever enjoying food again, I firmly and fully believed I would. 

Keep the faith, you'll get there.

Peter

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

Yeah, Peggy is gone!!! That is one step to feeling some normal.

That pain he is feeling is normal for what he's gone through. I caution you on the oxy though....hopefully he can start weining himself off little by little and substitute with some ibroprofen as the withdrawls are ugly. They confuse the brain that the body is in pain, thus taking and needing the oxy or other narcatics. Then when you are trying to get off them....the pain seems like it increases. A very, very, hard process. Took my loved one about a week to finally get the pain down after stopping it all completely. Just, don't stop cold turkey. Talk to his NP about the easiest way to come off. He should keep up some exercising with his legs while doing this, as it will help somewhat.

Just remember patience. His body went through some huge trama....it takes some time to get the physical and mental part back. We are 6 months out and although most of the physical is improving and the mental as well, the symptoms still come out and haunt from time to time. You just have to work through them and stay on top of everything. Express them to your doctors when you visit.

You will get your lives back....just be patient.....a little at a time...you'll start to see it Laughing

~C

robswife87's picture
robswife87
Posts: 176
Joined: Mar 2013

Just the frustration gets to everyone. He just wants to get back to work.

We know after some research that he is in withdrawl. He went off the Morphine, tapered correctly but when he went down to none he started having all the pain and restless leg and arms and couldn't sleep. So he started to take the smallest dose of liquid oxy. It takes care of all the symptoms for several hours at night. He is fine in the day it is when he finally lies down to rest after being up all day he is having the pain and restlessness.

I am stepping him down to liquid vicodin tonight and we will taper that down until off and the ibuprofen will take care of his knees. Hoping it works, He tried like heck to not take anything last night and it was horrible. Finally gave in at 3 am just to get some sleep.

This is the one thing he worried about when he had to start the pain meds. He didn't want to take anything. Most of his family are pill junkies and he did not want to take anything. It is hard to watch this. But we will get through this.

Sandy

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

Sandy,

 

No need for pain. If Rob is hurting a bit then give some meds, just try to make it a bit less than before. Either less amount or less frequency. Just play with it, up a bit then a bit more lower. As his body needs less medicine, when you drop the dosage, things will feel OK. It may take a fews weeks but no rush, just let the body be the guide.

Toward the end of my winding down off the narcos, there were some days that I needed nothing, then the next day would bring suffcient pain I would pop a pill or two. After awhile the pain subsided altogether. Be patient and just stay on it. don

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Sandy,

Read my thread on narcotic withdrawal. I'm experiencing the same thing. I made the mistake of trying to go cold turkey and within 36 hours I was a mess! My body is addicted to it. I know this now. I've essentially been on narcs since last December after my first surgery. While I'm taking less as far as dosage and frequency, I'm still taking it. I anticipate I'll be on it for some time more. Unfortunately, I took a rather brutal beating from the surgeries and treatment. The side effects have been plentiful and painful. 

Foo is right. There's no need to suffer. Yesterday I took 10mg of Oxycodone at around 10am while at work. By 4pm I was really starting to hurt. It's a general body ache akin to being run over by a truck. I took another 5mg a little after 4pm. By the time I got home close to 6pm, while I had some relief, the fatigue had set in and I was hurting more. I took a hydrocodone (650) at 7:30pm and it did the trick. I was good for the evening and to get to bed.

This morning I feel pretty good but I feel the ache beginning to come on as well as some RLS. For some, weaning off the meds is easy. For others it's not. It's not pleasent in the least. Personally, I feel it's a subject that should be discussed more and done so with your medical team. I also feel that's it's a subject that's not discussed openly in general with the patient prior to treatment or prescribing. I understand the reasons you and Rob feel the way you do but I fear it's causing him to suffer unneccessarily. Consulting with your doctors and/or with a pain management specialist would be prudent.

"T"

 

 

robswife87's picture
robswife87
Posts: 176
Joined: Mar 2013

I watched my mother, who by the way won't hardly take an asprin, withdrawl after 8 weeks of demerol and valium. 

She had severe burning in one leg shooting to her foot and back pain. Doctors could not find the problem. CAT's, MRI's , etc. The one day my dad took here in to the emergency room where they finally admitted her. Did one more scan and found something but had no idea what it was until they opened up her back. Benign tumor on spine wrapped around all the nerves. They got it all and luckily no damage. 

At the moment she woke up she told them no more meds. She went cold turkey. I came into the house where I found her crying, shaking, sweating and miserable. Scared teh hell out of me, I thought she needed an ambulance like now. She knew what it was. Severe withdrawl. She stuck with it on the cold turkey and within the week she was mom again. I made sure one of us was with her until it was over. 

This is not something I want to see anyone go through. I had a small bout with it after taking Xanax for only a week and flet miserable when I quit. 

Sometimes I wish the medical professionals should have to go through it just so they aren't pushing so hard. No one wants to be in pain but they need to some up with something better to help us. They wonder why there are so many people are addicted to legal RX meds.

We will step down slowly. He doesn't seem to have any pain in the day, only at night when he totally relaxes and the RLS starts.

Last night we stepped down to 4ml of the oxy, will go several days on this dose then drop another 1ml down to 3 and on and on until he is off. At least this is the plan. 

Good luck t you "T" on this trek. You had radical surgery and may take longer. We had no surgery, just the regular pain that most suffer and the horrible thrush. 

He seems to have a couple good days and then a bad day. The good days are coming more often, I just hate when he has the bad days, it really gets him down. He gets in the mindframe that it will never really get better. I tell him it will, I see everyone here who are doing so awesome.

Sandy

catfish_58's picture
catfish_58
Posts: 117
Joined: Feb 2013

Congrats on the peg coming out will have mine hopefully pulled on the 16th of aug.I know how Rob is feeling for the most part especially the taste and food not going down easy,but I'm improving little by little each day.I was wondering about how it was going to feel after it comes out.i've been out of treatment for 3 months and 2 days,can eat almost anything still have problems with bread.Hopefully things will get better.

robswife87's picture
robswife87
Posts: 176
Joined: Mar 2013

He said it burned like hell for about a minute and then was just tender for the rest of the day. 

It has been out a week today and it feels real good not to be there

Sandy

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

That's great news. Ruben started treatment around the same time as Rob, so I'm hoping he'll get his PEG out soon. We have an appt. tomorrow with Onc, maybe he'll suggest to Ruben it's time??

I see you and Rob have been going through the same ups and downs as we have. What a trip, huh? So unpredictable. I've decided to make everyday a good one, no matter what happens. Life is too short, and tomorrow may be even more challenging, so enjoy today.

Take care.  Jude

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network