| Joined: Apr 2014 Posts: 8 Member | OP Member Joined: Apr 2014 Posts: 8 | My husband is about 1/2 through his treatment. He can only swallow water at this point to we are feeding him through his peg. I am very frustrated with the fact that the only feeding tube bags I can find all taper down dramatically at the connector end. I have chosen to feed him the same food he would be eating if he could. I wouldn't feed him all the chemicals found in feeding formulas if he were well, and I certainly wouldn't feed him that now that he is sick. I do blend in a vitamix and even stain the fluid before I give it to him. Even really small particles can get stuck. I am using the Kangaroo bags with the large bore tubing but the connection tip becomes so small. Seems to me these bags are designed to support a multimillion dollar feeding tube formula business. I have tried to cut the tiny end off the connector but the plastic simply krimps down and nothing can come out. what have others in my situation done. So far my husband has only lost 4 pounds total since treatment started so I must be doing something right.
Husband: HPV16+ SCC base of tongue 2 nodes+ 7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | If everything is strained have you considered an enteral pump with the Kangaroo large bore kit?
There's also a lot of organic formulas, although they contain corn syrup, just not high fructose. It's mostly for calories. A company called Functional Formularies carries some organic whole food products as well.
I think you are better off doing what you are but maybe adding a pump or bolus feeding, even.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | I never did the PEG thing but I read many posts of folks who are consuming food that is not filtered to liquid fineness. Many use quiet basic low powered blenders and seem to get those thru their PEGs. Keep hunting around, there is something not quite sorted out in your process. Good luck
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Apr 2014 Posts: 8 Member | OP Member Joined: Apr 2014 Posts: 8 | thank you very much. That may be an option for us. This was very helpful information
Husband: HPV16+ SCC base of tongue 2 nodes+ 7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Beware taking peg advice from someone who hasn't had a peg. I have one and it is all too easy to clog up. I wouldn't even consider blending food in a low power blender. You will need a Vitamix or equivalent. (Vitamix offers a discount if you are tube feeding). If the peg tube gets clogged you will more than likely be making a trip to the ER to have it replaced. Some things, like spinach, do not blend well so use extreme caution. I am on a totally manufactured food (Nestle FibresourceHN) and doing fine on it. The companies, like Real Foods, sell blended and tested actual food but it's pretty expensive. $65/case vs. $50/case for Fibersource for instance. There are websites dedicated to blending for tubes and I would suggest you explore those. Personally I will probably supplement the artificial nutrition but I won't replace it.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Mar 2014 Posts: 22 Member | Member Joined: Mar 2014 Posts: 22 | Any reason you're using a pump rather than bolus feeds? I use a Vitamix and don't need to strain my food, although I know the pumps can be touchy. In addition to Functional Formularies, you can try RealFoodBlends.com.
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | She's using a Vitamix.
Gary, does yours get clogged from food or medicine? Does your MIC-Key come with 2 detachable tubes? Mine did, one very narrow for water and the other almost the size of the original I had. Even with my mother and using a pump, we only got clogged with crushed meds and used cranberry juice first, coke second and it always cleared.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I have a "garden variety peg" tube. No balloon or disk on the outside - a standard drain tube actually, a few stitches holding it in. I clogged it up, once, with Lactobacillus, probiotic, finely ground with a mortar and pestle. After that, I switched to a liquid probiotic. I only have a few pills to take and I use a pill crusher now.
If I fail the swallowing test again I will probably get a MIC-Key installed when this one is due for replacement, I have recently been having some issues with bleeding around the stoma (not heavy) and it looks like the beginnings of granulation. I was overdoing it pulling weeds in the yard... They discharged me from the hospital with no instructions or wound care advice, swell!
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I was gravity feeding once and went in the bathroom and somehow hooked the tubing under the door. It was like a dog running till the end of the chain suddenly appears. The end result (after the scream) was laying on the floor with 2 ribs cracked from the inside out.
I had a lot of problems with the first one. They put the disc and the stitches in and the stitches kept ripping. When they cut them, the little toggle fell in and is still in there somewhere next to the surgical clip used to palace the tube. Makes for good conversion with every scan, along with the broken needle in my buttocks from a dilaudid shot.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Mar 2014 Posts: 22 Member | Member Joined: Mar 2014 Posts: 22 | If you're on Facebook, there is a group call Blenderized Food For Tubies. They have a lot of good information and are very helpful.
I use a Vitamix and I also have a Blendtec. Both work great for blending food. I push mine through the tube with my syringe plunger and don't normally have any issues, however clogs are bound to happen. I've never had to get my tube replaced because of a clog though. See the Blenderized Food For Tubies folks (I think there's a yahoo group too) if you have trouble with clogs.
Brian Liebenow, Stage 2 NHL survivor (left tonsil), I eat everything through a PEG tube. http://travelingtubie.blogspot.com/2013/04/why-i-tubie.html11/03 - started CHOP chemo 12/03 - remission 1/04 - finished chemo 4/04 - started 25 rads to make sure they got all the cancer 5/04 - stopped rads after 20 due to severe reaction to radiation 5/05 - began seeing damaging effects of radiation 7/08 - PEG 4/09 - 5th unsuccessful jaw surgery Smile!! Laughter is the best medicine!
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