Anyone else on a feeding tube? Fustrated!

[Logi Bear]

Due to medical reasons I have been on a liquid diet and using a feeding tube for a long time now. My GI problems get better and get worse all the time, at one point when I was doing really well I was able to actually blend fruits, vegetables, nuts, seeds, grains, ect.. and use those as my feeds. I felt fantastic, my health improved, even my skin, hair, (and nails eventually) improved. At that time my hair was growing about an inch a month and very thick! That was a long time ago though, since then I have gotten worse. I did (ok) for a while, but sometimes my diet has been very inconsistent. I went through periods of time where I had to water down my feeds or use clear liquids instead several times a week. In late August my hair started falling out like crazy. I mean like I would get handfuls of it when I would run my hands through my hair. :( I've lost I think more than half of my hair volume, my hairline receded, and I had bald spots on either side of the front of my head. Also the hair all over my body thinned and started growing much more slowly, I even had (and still have) large bald spots on my legs where the hair just stopped growing.
My diet is doing a little bit better now at the moment, and my hair has stopped falling out. I've also grown some fuzz where my bald spots were, and along my hairline where it receded. So you can't even tell unless you get up close and see that I have an usual amount of fuzz. :grin: And even though I've lost so much of my hair, it was pretty thick to begin with. It just sort of looks like I was born with hair that's on the thin side. (I still haven't measured my new thickness yet, sorry not sure what it is.)
I'm just so frustrated. Its hard to find feeds that I can tolerate, feeds that I feel good on, and because they are so expensive we are now limited to things that insurance will cover. And to be honest I'm sort of irritated by the fact that because of my GI problems I could someday grow my hair out and then loose it all due to nutritional problems. :rolleyes:

[lunardaydreamer]

I am not on a feeding tube, so I can't relate to that but I really feel for you that's a lot to have to deal with. I definitely understand your frustration absolutely. I lost a lot of hair when it was fairly long due to a medication and extreme weight loss, having such long hair falling out in clumps was terrible, and my bald spots and thin spots still haven't really come back. It might be terrible if it happens, but you're obviously strong and you will get through :) How long is your hair now?

[Natalia]

Im sorry for the fustration your health problems are causing you. I havent been on a tube but i have severe gastro issues as well which put pretty harsh restrictions on my diet though not as much as yours. A ng tube has been suggested when i get bad but i havent done it yet. Have you itendtified trigger foods? Do you mind sharing? Its hard to make reccomendations not knowing if it would set your system off. Would adding powdered concentrated things like spirulina cause havoc? Ive found that dehydrating and powdering greens was less upsetting to my system than just blending them. Once they are powdered i could add them to things like broth, pureed soups, or smoothies to cover the taste. But if you dont have to taste it you could just mix with water if thats least upsetting. Can you tolrate vitamins and supplements? If so i reccomend checking out metegenics i used to take one of their powders that helped alot but once i got better it was too expensive to continue. I found taking half the amount worked just as well but i divided the doses more than they said to as well since that much rice at once didnt agree with me.

Id be happy to help however i can feel free to pm me if you want.

[Logi Bear]

@Lunardaydreamer My hair is past my shoulders, but not quite bra strap length yet.. I hope you are feeling better! :D

[Logi Bear]

Im sorry for the fustration your health problems are causing you. I havent been on a tube but i have severe gastro issues as well which put pretty harsh restrictions on my diet though not as much as yours. A ng tube has been suggested when i get bad but i havent done it yet. Have you itendtified trigger foods? Do you mind sharing? Its hard to make reccomendations not knowing if it would set your system off. Would adding powdered concentrated things like spirulina cause havoc? Ive found that dehydrating and powdering greens was less upsetting to my system than just blending them. Once they are powdered i could add them to things like broth, pureed soups, or smoothies to cover the taste. But if you dont have to taste it you could just mix with water if thats least upsetting. Can you tolrate vitamins and supplements? If so i reccomend checking out metegenics i used to take one of their powders that helped alot but once i got better it was too expensive to continue. I found taking half the amount worked just as well but i divided the doses more than they said to as well since that much rice at once didnt agree with me.

Id be happy to help however i can feel free to pm me if you want.

I'm not allowed to add powdered things to my feeds yet, because I recently switched from an NG tube to a G-Tube. :( Right now I have a PEG tube and my doctor won't let me mix up and use powders till he replaces the PEG with a mickey button. :( I don't know if I have had spirulina before either, or how my GI tract would react. I do try to use feeds that have fruits, vegetables, and antioxidants in them. There are very few formulas that have fruits and vegetables in them.. but sometimes when my GI tract can handle it I blend baby food into my feeds, or my dad buys me bottled smoothies from the grocery store and I mix a little of that in with my feeds. :D Before I can try doing that again though, I have to wait till I have the mickey button.