| Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Well, I'm home after getting the PEG inserted at the hospital yesterday. They had already planned to keep me overnight for observation and, boy, am I glad they did. The first 8 hrs. after surgery was the most painful thing I've been through in my life. I normally have a pretty high pain threshold, but my stomach muscles were (and still are) really rebeling again having this intrusion! Even morphine was not cutting through the pain. Finally, they put Toradal in my IV and the muscle spasms calmed down. I worked M-Th last week and was surprised that as news of my cancer dx spread, how many people contacted me that they had a friend or loved one who has gone through the same TX.
I am glad to be home - pain meds are working unless I get up to go to the bathroom, etc. How long can I expect the pain to last? I would appreciate any experiences with pain related to PEG surgery.
Thanks, Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Chris,
Bill was really sore for about three days. After a week, he was over the hump and able to walk and move normally.
For those trying to compare, my Bill has a very high pain threshold and is not a whiner, but he was very painful the few days after his PEG was placed. I am not sure why a lot of medical professionals gloss over the post op period regarding the PEG but I am definitely happy we chose to have the procedure done before the cascade of side affects from the chemo/radiation started.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | I was able to go to work the day after my PEG was put it. It was uncomfortable for a few days. Gas like pains were relieved by opening up the end of the PEG (while holding the end up). Within a week the PEG was just a little blip on the screen. Good Luck
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | Chris,
Carol had her PEG inserted Wednesday and was sent home that night. She didn't even see the Dr post-op!! They would not give her anything stronger for her pain than what she already had at home, Ocycodone/APAP 10MG/325MG. I was told she had "difficulty" with her pain while in recovery and they gave her 25mg of fentanyl, which wasn't strong enough, but wouldn't increase the dosage. I wish they would have kept her overnight. She had her sutures removed Friday which removed the pressure from her stomach. This is day 4 and Carol isn't shuffling to walk, but the area is still tender. Carol also has a very high pain threshold and isn't a whiner, but any treatment with OC would bring anyone to their knees.
They didn't provide a lot of information regarding the care and feeding of the PEG. The nurse told Carol she wouldn't need pads around the stoma, but I insisted she get them. There can be problems with leakage and the area must be kept sterilized. I learned this from previously reading threads and asking questions on this forum. TGFOCF (Thank God For Oral Cancer Foundation).
Carol goes in tomorrow for her Simulation Test. We're having tons of problems getting her stronger meds and I'm tired of the BS...The s%!& is gonna hit the fan. Reading the threads on this forum about the meds patients are getting and Carol isn't really pisses me off. Sorry for the rant addition.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Chris, my PEG pain lasted about a week. I also had muscle spasms. I took ibuprofen to help with the inflamation and it did help some. My pain was worse than the c-sections I had. It idd get better, and now the pain is minimal. I just had it tightened again, so the I ama little sore, but it is getting better. You will eventually get used to it, but make sure you keep it clean.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Thanks All! I am feeling a bit better today. It is really painful when I get up. Angelia - the Toradol is an ibuprofen type drug which is helping. I,too, heard from my radation onc, and GI surgeon that the procedure is 'no big deal - you'll be fine by the evening' = yeah, RIGHT!! I took some Gas-X which I think is also helping. I'm now resigned to the fact that this procedure is not MINOR surgery, and will allow my body about a week to heal. My first rad/chemo is not until NEXT Monday, 2/8 - so hopefully I will feel better by then. Thanks again, I'll keep you posted on how I'm doing.
Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Good luck with your treatments.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hi chris, No doubt the Peg is a pain but should get better in a few days. Here is a funny one for you. My Peg use to kill me when ever I laughed! I told my friends no more jokes! Then the doc told me that the stomach just "floats" around in your body cavity. When you put the PEG in it is like buttoning it to your chest wall. so it contantly tugs on the wall! As I and most everyone else said it will bet better.
And when you get it out you have a cool scar! looks like a gun shot, or maybe a second bellie button Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Well, today is day 4 post-op and I still have pain, but no where near what it was on days 1 and 2. Last night, I gave myself an enima - I just could not take the bloating and pressure from not having a bowel movement any longer! It GREATLY relieved the pain that I think was a result of not having a bowel movement for 4+ days. I had been taking Colace and Benefiber - just didn't do the trick. This was my 3rd surgery in 40 days - everytime I get off the pain meds and get my bowels 'regular' , I have a new surgery to recover from and go back on the meds which really cause me the big 'C'. Although I still have 3 small tumors remaining, my docs think they can rid them with the rads, so hopefully - no more surgeries!
This morning I go for my post-op visit with the surgeon, so maybe he can adjust the tube - it seems as though it's in awfully tight.
Steve, thanks! My husband is constantly trying to make me laugh and it really hurts when he succeeds! I already have a cool scar on my neck that hopefully will go nicely with the scar on my stomach - combine that with the 'tatoo' on my chest for my rad treatments, and at age 47, I'll be one cool, middle-aged chick, eh?
Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: Dec 2009 Posts: 108 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2009 Posts: 108 | This is day 6 post-op for Carol's PEG. She has a little tenderness left of the area but otherwise is pain free. She is able to have bowel movements although not as solid. She blames it on the lack of food not the meds as the Dr does. Right now she just flushes the PEG daily. The Dr wants her to do her liquids orally for as long as possible. Her Tx begins 2/8. Good luck with your treatments.
Linda
CG/Carol 57;SCC Stage IV L Tonsil T4N2bM0 12/2009 Recur 7/2010 - 2cm mass Invasive SCC L Floor Lower Jaw Surgery 8/10 - Trach,ND,p. mandibulectomy,pec flap ypT4aN0 HG Mucoepidermoid carcinoma 2nd Recur 1/18/11 - Tumor lower left lip Surgery 2/9/11 - Canceled - Inoperable 3/29/11 - Died
| | |
Forums23 Topics18,250 Posts197,142 Members13,324 | Most Online1,788 Jan 23rd, 2025 | | | |