What type of feeding tube will give me the most independence?

[MupstateNY]

My feeding tube will be 7 weeks old tomorrow, and I want to get it exchanged next week. Right now I have legacy 18 French with two ports.

I have weak hands.

What type of tube will give me the most independence in using it going forward? Enfit button, legacy button, enfit dangler, legacy dangler? Something else entirely? Right now I'm using a smooth metal hemostat ("Excel Tube Occluding Clamps, Smooth Jaws, 7inch," has 3 clicks but I only use the first click)

to clamp the tube so I can put my López valve on (which I love).

I've been advised to get a plastic hemostat instead, to avoid damaging the tube.

To open the hemostat, I stick my thumbs in, in opposing directions, and I have the strength to open it, yay.

I don't mind the dangler, since I discovered a blue tape made by Nexcare (the best! no irritation of skin, and reusable several times).

Currently I only use the tube for meds. It's a lifesaver!

I don't like using the small port because I can't use my López valve with it, with the small syringes. And the small syringes have a short tip, so they pop out easily. So, I dispense the med into a small cup (laundry soap measuring cups that come on each bottle of soap), and add a bit of water, and then I can use the big syringe. I leave some air in, and that helps me get all the med out of the syringe and into the tube.

Is it feasible for me, or my CALS, to learn to change out the tube? A nurse told me today, "No way!" Something about a guide wire, bla bla bla. But I watched a video of a teenager with a feeding tube. He's very active with sports, etc., and he always has a prepared tube ready to pop in as an exchange in his small backpack, if he needs to change it. The video was about how to prepare the tube for exchanging. He didn't actually show the exchange.

 

[Tomswife]

I dont know. You could also reach out to the Oley Foundation. This is their focus.
And...i am happy to hear from you. You have been in my thoughts.

 

[lgelb]

I would get your husband's opinion also, as ultimately he will be helping you. And using the tube for meds is different than using it with formula or (preferably) blended food.

Whatever you do next is not set in stone. You can always switch types. You do want the largest diameter that fits into your stoma, for your future tube meals.

Check out the pics and vids on line as they convey more than words. You can certainly have a tube that can be changed at home. Most people with a long-term setup do.

Many people switch to buttons from danglers because they find the button less cumbersome and visible. However, some people prefer the longer length of the dangler for their feeding setup.

 

[MupstateNY]

Thanks for responding. I've ordered plastic hemostats.

If I go for the button, can I still clamp it somehow, myself? I'd like to focus on what I'm able to do right now -- later on I can exchange it for whatever makes things easier for my spouse.

I was thinking about you too, Tomswife, I've learned so much from you and everyone else.

 

[MupstateNY]

I watched a series of videos about the enfit with mic-key. It looked like the screwing and unscrewing would be doable. What about the built-in clamp? I read reviews that said it's hard for people with arthritis.

 

[lisa g]

I think the Mic-key is the way to go. I've had my peg for a year and wanted to have it changed for a Mic-key. Unfortunately I had a hard time finding a gastro or surgeon to do it. The gastro that placed it told me that after 3 months with no infection he would do it. When I went back to him after 3 months he told me that I was doing a great job with it and not to rock the boat and leave well enough alone. Needless to say I won't go back to him.

After months of searching I finally found a gastro that will do it. He is originally from up north and can't figure out what the big deal was he's placed many of them. He examined my peg so he could see what size I would need. He scheduled my surgery for the 27th.

There is a tube that you can get called a Bolink D Cap. It attaches right to the container of your food supplement bypassing the need for the formula having to be poured into the syringe.

 

[MupstateNY]

Sorry to hear about your exodus. I went through something similar.

I'm going to have mine exchanged by Interventional Radiology, one county over from mine -- 75 min. drive. I happen to know the doctor because some years ago I went with a friend to see him about her fibroids. I was very impressed with him.

I requested Enfit button.

I watched a video from the UK of a mother exchanging her daughter's button at home. We only saw the girl's tummy but I think she was pre-teen age.

My next goal is to find someone to teach us to change it out at home.

In theory they're going to do it on Monday.

 

[MupstateNY]

Wow, my stomach wall thickness went from 3 to 7 cm since I had my Jan. CT. The enfit button they ordered wasn't long enough to accommodate so they gave me another legacy dangler. I didn't need pain meds, but now I'm nauseous. I called to report this and was told it's likely from the contrast they used for measuring.

 

[KimT]

I'm glad the process is over for you. I hope you heal quickly and are back out in your garden soon. Take good care of yourself and let everyone else pamper you.

 

[lisa g]

I'm sorry that you didn't get the enfit button that you wanted. Did they give you the option of trying again at a later date with a different size?

 

[MupstateNY]

Thanks, KimT. I'm afraid I won't be able to sleep with this heartburn, nausea, vomiting, gurgling, and pain.

Clearly, I'm going to let the IR know that I don't seem to be able to tolerate the contrast dye.

Thanks for your good wishes.

Lisa, sort of. Due to the new plumpness (I still weigh 125 lbs), they said they can't order a long enough button. So I requested non-button enfit.

 

[MupstateNY]

I'm on the mend! Got two bags of saline in the ER. Today started revamping my team. Need a diff.primary.

My urine showed ketones which convinced the PA I was dehydrated. Duh, no eating or water staying down for two days, age 67, 120 lbs, how would I not be dehydrated?

I stopped throwing up after the second liter last night.

This morning I was able to nibble a couple saltines. This afternoon I had a bit of soup (chicken consomé, chicken breast little chunks, and well cooked rice). Now I'm going to try a cut-up, microwaved apple, especially the cooking water.

I'm weak but hopeful.

 

[lgelb]

Glad you are on the way back!
Make sure you get your electrolytes in, like in a no-sugar added "super" fruit/veg juice.

 

[MupstateNY]

Will ask my family to buy me some. Are we talking V8? Or should they go to the health food store?

 

[lgelb]

Unfortunately, V8 is not all that in terms of nutrition, though certainly better than those w/ added sugar.

If available in your area, I would look at Fruve, stocked at some groceries.