Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Have you looked up info on dysphagia, for example: http://www.gicare.com/pated/edtgs07.htm Did they determine that the gastroparesis is less of an issue with liquids (or is it always?)? Same website has info on gastroparesis: http://www.gicare.com/pated/edtgs08.htm If you think of the diet change as temporary (even if there is a chance it might not be), it might help you cope better. I understand about being at conferences and feeling funny if you can't eat the same as everyone else. I had an all-day mouth appliance that I could only take out at meals, and it was somewhat embarassing to deal with that at work. I ate at my desk a lot. If you'll be at the same conference all week, maybe you can talk to them about pureeing you some soup or something to get a bit of variety. I'm glad they found out what they think is causing your bouncing blood sugars, and I hope you'll see some improvement on the liquid diet. You might want to find out what you can do if you crave food - can you get some sugar free hard candy (although Ensure is full of sugar, so maybe regular hard candy is okay) or mints to help you through that? It is harder with kids, as they need to eat real food and it is tempting when you have to prepare it for them... Take care, RH > Hi, I'm home. I went in on Tuesday because my blood sugars were all > over the place and I was having more trouble walking. I got a pretty > thorough neuro workup to rule out all kinds of scary things like > tumors and ALS. Well, thankfully, my MRI was normal. Basically my > neuro diagnosis is " hypotonia and pathological hyperreflexia and > multifactorial movement disorder, secondary to metabolic disorder " > which, loosely translated, means " You walk funny and we don't know > why, but it's probably because you have mito. " So they fitted me for > a walker, shrugged, and scheduled a follow-up in a few months. They > did do a MRS so hopefully we may get some answers there. > > Well, we found out why my blood sugars are all over the place. I > have gastroparesis. They did a gastric emptying study and after 1 > hour I had only emptied 4%. They had me get up and move around and > they finally gave up at 3 hours. I watched the whole tape of " The > Green Mile " , which I've wanted to see, so it wasn't a total loss. My > swallowing is a problem too but they couldn't schedule the swallow > eval till next week so I'm having it done closer to home. Thin > liquids are more of a problem but whatever I drink, I need to rest in > between sips. So, now I'm on a liquid diet, ensure for nutrition, 4- 6 > oz every 1/2 to 1 hour. Sheesh. How do other people manage that and > still have a life? I'm going to a seminar next week, a place that > has fabulous food, and I'll have to sit there drinking " old lady > juice? " It's bad enough that I'm using a walker or a scooter and > I'll be with people that I was out working with in January. How do I > explain that for the " short version? " > > My nutrition turns out to be poor. I'm a fat starving person. I'm > trying to be positive- this is kind of like slimfast, a > very...intense... slimfast. > > My GI has just about jumped ship. The metabolism doc got in touch > with him, looking for recommendations, and apparently dysmotility in > folks with mito is so complicated that he recommend I go to a > subspecialist. So I'll be seen by the same doctor that goes > to. Nothing like Family Medicine! > > Does anyone know where I can get a list of what is considered a > liquid? They told me cream of wheat is liquid but oatmeal isn't. > How about baby food oatmeal? Does it work if you chew/suck on food > and then spit it out? (sorry for the visual) > > Thanks guys > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 Heidi I'm glad you are home, but the GI problems are not good to hear. I do know that Jello is considered a liquid and it least it has some feel of being solid and can be gotten in restaurants. Not a steak, but at least on some menues. Broth would be liquid, but milk and ice cream are not. Of course, I am no doctor and don't have personal experience with a liquid diet other than preps for procedures more times than I want to think about. Thinking of you, laurie > Hi, I'm home. I went in on Tuesday because my blood sugars were all > over the place and I was having more trouble walking. I got a pretty > thorough neuro workup to rule out all kinds of scary things like > tumors and ALS. Well, thankfully, my MRI was normal. Basically my > neuro diagnosis is " hypotonia and pathological hyperreflexia and > multifactorial movement disorder, secondary to metabolic disorder " > which, loosely translated, means " You walk funny and we don't know > why, but it's probably because you have mito. " So they fitted me for > a walker, shrugged, and scheduled a follow-up in a few months. They > did do a MRS so hopefully we may get some answers there. > > Well, we found out why my blood sugars are all over the place. I > have gastroparesis. They did a gastric emptying study and after 1 > hour I had only emptied 4%. They had me get up and move around and > they finally gave up at 3 hours. I watched the whole tape of " The > Green Mile " , which I've wanted to see, so it wasn't a total loss. My > swallowing is a problem too but they couldn't schedule the swallow > eval till next week so I'm having it done closer to home. Thin > liquids are more of a problem but whatever I drink, I need to rest in > between sips. So, now I'm on a liquid diet, ensure for nutrition, 4-6 > oz every 1/2 to 1 hour. Sheesh. How do other people manage that and > still have a life? I'm going to a seminar next week, a place that > has fabulous food, and I'll have to sit there drinking " old lady > juice? " It's bad enough that I'm using a walker or a scooter and > I'll be with people that I was out working with in January. How do I > explain that for the " short version? " > > My nutrition turns out to be poor. I'm a fat starving person. I'm > trying to be positive- this is kind of like slimfast, a > very...intense... slimfast. > > My GI has just about jumped ship. The metabolism doc got in touch > with him, looking for recommendations, and apparently dysmotility in > folks with mito is so complicated that he recommend I go to a > subspecialist. So I'll be seen by the same doctor that goes > to. Nothing like Family Medicine! > > Does anyone know where I can get a list of what is considered a > liquid? They told me cream of wheat is liquid but oatmeal isn't. > How about baby food oatmeal? Does it work if you chew/suck on food > and then spit it out? (sorry for the visual) > > Thanks guys > Heidi > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 Try drinking liquid protein, that will help. wrote: Was wondering did anybody have problems being on a liquid diet before surgery? I started today since my surgery is on Wed. 06/22/05 and I'm getting dizzy spells. All I had all day was clear chicken broth, decaf teas, sugarfree jello and egg drop soup without veggies. I'm not looking forward to tomorrow when I go back to work and have the same diet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 --I'd suggest a liquid protein like clear Isopure. They told me that any clear non-dairy liquid like that is OK on the liquid diet. If you can see through it, it is considered clear (even if it is colored). Was wondering did anybody have problems being on a liquid diet before > surgery? I started today since my surgery is on Wed. 06/22/05 and I'm > getting dizzy spells. All I had all day was clear chicken broth, decaf > teas, sugarfree jello and egg drop soup without veggies. I'm not > looking forward to tomorrow when I go back to work and have the same > diet. > > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.