| | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Jan 2011 Posts: 168 | I had my feeding tube put in yesterday. The procedure went better than expected, but I was in a lot of pain last night, trying to sleep. Have others noticed that it's easier to sleep elevated against pillows rather than on the back? Can one sleep normally after a few weeks? Will I ever get used to it? -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Michelle
Trust me, you do not want to "get used" to a feeding tube. However you can and will learn to live with one for what should be a relatively short time. YES, sleeping while propped up with pillows does indeed work for me and my feeding tube. I sleep the "sleep of the just" now ( I used to say sleep like a baby until I became a parent and my baby woke up several times during the night and cried). The pain should subside very quickly. If it does not, don't be bashful about going back to the doctors. Sometimes the pigtail or balloon inside gets embedded in the stomach wall, or else they have the tube too tight. Lots of posts here on the daily hassles of a feeding tube. However the majority of OCF posters seem to sail right through with their PEGs so here's hoping you do too. Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Michelle. When John had his PEG put in he was in pain for a few days, it will get better. Better to have it and not need it then to have to interupt treatment to have it placed. John didn't start using his until around week 3 of treatment. He continued to drink fluids through treatment so he never lost the ability to swallow. He only had it in for 4 months but thank God he had it. Even with it in he lost 30 lbs. He was very reluctant to use it in the beginning and that is when he lost a lot of weight. Best wishes!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Feb 2009 Posts: 22 Member | | Member Joined: Feb 2009 Posts: 22 | I've been on a feeding tube for two years and will never get off of it and yes you will get use to it. I can't speak to the pain as I went into an 11 hour surgery less than 24 hours after its insertion so who knows. If you continue to have pain call your doctor. | | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I had pain and nausea the first day or two after mine was placed. I really hated that thing, but was so glad I had it! I still use an elevated pillow to some extent whenI sleep. I was so glad when I had the thing removed, because by then I had been back to work for a month or so, and it sure limited what I could wear. I alwasys had to have pockets.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 8 | The first 24 hours of having the tube is the worst. The pain can last a couple days then you will feel better. Be careful not to do any heavy lifting. Nothing over 20 pounds. I sleep on my side. If you use the feeding pump overnight, make sure you are propped up on pillows. Also add a couple extra cans of water to the formula to help with your minimum 48 oz of water daily. Best wishes for a fast recovery! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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