Coming Soon - A G-Tube

• By sprite
• Posted June 22, 2008 at 2:15 pm

Hi Joelee,

I too, have other diseases to which GP is a side effect. I ran an autoimmune Addison Disease for about ten years and learned so much.

I am not and never have gone into acceptance and I don't mind being noisy about it. One of the best things a friend told me is that "I'm not at peace with being at peace with my troubles." And that worked for me. I don't like being ill but I have illnesses that interfer with my life.

Now, I hate to say it, but it's bathrooms that seem to be my enemy. I can't go out because I have to go every ten minutes... I hear that's NOT normal... but it's my reality.

Hopefully the tupe will help you gain back some strength. My husband put a tube down my nose and fed me after not eating for a week.

I am new to this board and would also like to know WHAT and HOW people eat. My motility doctor said it's a hit or miss kind of thing. Well, I'm mostly misses so far.

A woman at a yahoo site said she's had GP for seventeen years and eats brown rice, an egg and some cheese every morning. She said the white foods cause hunger and I have found that to be true in my case. The only thing I've found I can eat well is frozen spinach cooked until it's mush in broth.

I can eat a piece of non-fat cheese. I have gotten down some canned peaches but not beets (which I like) but made me sick but also showed me I am two days out with meds. Beets go in red and come out red. I have cranberry jello but have not tried that yet.

I've been diagnosed since April with GP and I don't know what to eat. I take medicine for an autoimmune disorder five times a day and I am more concerned about getting those dissolved and absorbed than I am about food.

I can also have non-fat, sugar free frozen yogurt in drinks.

I'm still trying to figure out what to eat. And it's not going so well.

Sprite

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• By joelee
• Posted June 22, 2008 at 5:35 pm

Sprite,

I sounds like we both have been struggling and not finding solutions. Believe me, I am not one to accept that I have to live a lesser life. I have tried a variety of medications and listened to a variety of practical suggestions, all of which just complicated things. I cannot tolerate losing a couple pounds a week any longer. If the swallow problems can be overcome in the future, the tube can be removed. But I have been living alone in a weakened state with a variety of nutrition related symptoms (lightheadeness, poor memory, hunger pains, etc.) for most of this year. So I am willing to undergo this procedure so I can return to a normal energy level.

My disease is hereditary spastic paraparesis, which already has me using a power wheelchair and living with chronic pain. Internal symptoms are not common; but my version is unusual. I can get most food down, but saliva and congestion accumulate in my throat and chest. Eating triggers tons of fluid, which I am told is normal. But my body takes forever to process it, just as it does when digesting what I eat.

I have been seen by numerous specialists and had a bunch of tests done. My esophagus was widened during an endoscopy. But that produced no benefit. The medical people pass the buck or just shake their heads.

I do not have much to offer in terms of eating suggestions, since it seems these problems are unique for each person. But I am worried that you can consume enough calories. I have been at a decifit of about 1000 calories a day for months. The tube will allow me to get the nutrition I am desparately in need of, though it will be a difficult adjustment. Hope you can find ways to improve your situation.

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• By sprite
• Posted June 23, 2008 at 6:56 pm

Oh Joelee, you have so much going on, I'm so sorry... and on your own... I'm sorry about that too.

My husband keeps wanting to send me to the ocean... Mendocino. But I can't live on my own. And we bought a new house and haven't been able to sell the old one.

I have graduated from a wheel chair to a walker and am free now. My back has healed some and my legs are pain free for a few hours.

We have smoke blowing around outside and I am just too tired to do anything cuz I can't catch a breath. We had an awe-beautiful - biggest storm I've ever been in... ever; and now we are on fire. I could see the flames last night and I was worried I wouldn't be able to get out on my own. But all is well.

I'm happy to have eaten the 1/2 full ball of brown rice. And I'm hoping this will work for me. It would be nice to go out, if even to walk our very small mall.

I hope you are having a good day,

Sprite

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