Gastrostomy Tube (G-Tube): Difficulty finding a formula that works

Posted by rakga @rakga, Mar 17 6:03pm

My husband is currently starting week 4 of his 7 week treatment with Cistplatin and radiation but is having the worst time with finding a formula that works for him. Boost, Ensure and KateFams all have resulted in traumatic vomiting or diaherrea, no matter the speed through syringe or gravity bag. He told me today that he no longer wishes to try anything else formula-wise.

But, his taste buds are almost gone and he can't seem to eat more than 6-7 bites of anything at a time. He's down about 20 pounds so far and I am terrified that he's not getting nearly enough nutrition.

So far, this is by far the hardest part of the journey to-date. 🙁

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KC Terry | @kcterry | Apr 13 7:43pm

In reply to @colleenyoung "@kcterry, I assume that means the feeding tube is permanent for you?" + (show)

Hopefully not. Most people that had what I had as far as neck cancer and the similar related treatment get back to ‘marginally swallowing’ 3-4 months after the treatments end allowing them to have the feeding tube removed. Most are successful at then getting enough daily nutrition and hydration. I just happen to be one of the unlucky ones where my swallowing isn’t cooperating despite my best effort and the ‘experts’ (doctors, SLP’s, etc.), say to just give it time and hope for the best. 🙏🤞. Terry

KC Terry | @kcterry | Apr 14 9:43am

Colleen, hopefully not! It’s fairly common for persons being treated for throat cancer by radiation, surgery, and chemotherapy as I was to have side negative effects that make it impossible to swallow for an indefinite amount of time during and after treatment so that they can eat and drink. Therefore they get a feeding tube. However, “most” recover their swallowing ability to some extent so they can eat and drink within 6 months of ending treatment and can then have the tube removed. Unfortunately, despite my best efforts, I wasn’t that lucky. It’s been 2 years since I finished treatment and I still can’t swallow. I’ve worked with a SLP, etc., but it hasn’t helped and my radiation and medical oncologists are no help. I get the usual, “everyone is different and time takes time.” There’s something definitely wrong with my throat causing the problem that needs the attention by some specialist but I’m at a loss as to who to turn to for help or what I can do to change the situation. So I just remain on the feeding tube that is both a blessing and a curse.