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LUCKY-13's Photo LUCKY-13 Posts: 11,837
12/2/08 7:07 P

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Welcome to all our new members! It's nice to have you in our team!

I think we all have a lot of questions about this health issue, and science hasn't found a lot (so far) that is helping us, so it's good we have each other!

What seems to work for one person doesn't always work for another, but there are some things that most of us are noticing, like fiber is hard/impossible to digest. And it's super important with this condition to drink lots of fluids; water especially.

We're going to do our best to give our members-all of you-more info, challenges that'll be fun (for a change!), and great things that other SP sites enjoy.

Welcome again to the team! Hope to hear more from everyone!

Lucky

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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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POLYHYMNIA23 Posts: 24
12/2/08 3:24 P

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First of all, I'm sorry that you don't seem to have the family support that all GP patient's deserve and need. I can't believe your husband thinks you are bulimic! It is common to have good days and bad days. I certainly can relate. I tried reglan and it didn't work for me. The side effects weren't bad for me, I wasn't tired, but the potential to develop parkinson's disease was a deal breaker. My doctor is putting me on Domperidone. This isn't approved in the US, but apparently doctors can prescribe it. You have to get it from a pharmacy; so they are calling it in to a canadian pharmacy and they mail it to me. (I'd like to think they are actually doing something to get the script going, but my doctor's office sucks at communication).

At any rate, ask about domperidone. Also, there are health boards out there with lots of helpful information. I use healthboards.com and I just type in gastroparesis in the search bar. There are several great topics, but one that is really helpful is "gastroparesis...please share". There are 4 of these because they needed to keep restarting due to the popularity.

Anyway, take it one day at a time and things will be okay. Don't listen to people that don't believe that this is a serious, chronic illness. If you want more info, email me here and I'll write you back!

As far as the calories, it's impossible to know how many you are taking in if you are vomiting them up. When you have the bad days, try liquids, it might help.

Take care!

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TRYNHARDINNJ Posts: 2
12/2/08 3:10 P

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Also, how can you tell how you're really doing if you bring up your food? I mean sure you try to stay within your calorie limits, but when you bring them back up, there is no real way to tell how many you intake/ Any one have any answers??

TRYNHARDINNJ Posts: 2
12/2/08 3:06 P

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I agree, it's NO fun at all. I have my good meals, and my bad meals. I am not able, due to work, to eat 6 small meals a day. So I, like you am taking in minimal calories. The things I really like, like cheese and salt are things that I should stay away from. I'm going to get a second opinion on 12/10 and hoping they can tell me something different other than taking Reglan. I have heard from folks on it that it really makes you tired!!!! Aside from all the other side effects, that's one I can't live with. I am a mother of three and slowing down would interrupt my entire family.

I'm so glad to have people who understand and that I can talk to about this. My loved ones are thinking it's all in my head and that i'm bulemic. So untrue!

Thanks for being there, all of you!

POLYHYMNIA23 Posts: 24
11/19/08 2:41 P

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I gotta say that having this illness sure isn't fun. I am barely able to eat 800 calories a day--this can't be good. So far today I have had a whopping 150 calories and it is almost 3pm. The good thing, I am on a liquid diet today to prep for a colonoscopy (at age 29, woo). How do you guys get your nutrients and such? Don't get me wrong, I obviously have weight to lose, but living like this really bites.

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POLYHYMNIA23 Posts: 24
11/12/08 9:47 P

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I'm already on Reglan, which is supposed to help digest the food and deal with nausea. I think I'll ask for something new for the nausea because the reglan isn't helping. I can not give up whole grains or vegetables. I live on those. I can't eat white bread or much processed food because I have an intolerance to most of it. I've been tested for celiac disease, but was told that I don't have it--but gastroparesis and celiac disease combo would explain everything. I don't know--I'm at my wits end with the nausea. I also have trouble swallowing, but it varies from day to day. I JUST found out that my stomach doesn't digest right, and the doc just left me hanging. It seems like I am going to have to wait until December to get some answers, if any.

I'm lucky, my blood sugar is normal since I lost 54 pounds, so I don't have to worry about that. However, the nausea has GOT to go.

What are the meds you guys are on?

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POLYHYMNIA23 Posts: 24
11/12/08 9:30 P

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Do any of you take domperidone?

Edited by: POLYHYMNIA23 at: 11/19/2008 (14:41)
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SUZFONDL Posts: 2
11/12/08 9:17 P

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I have the nausea too, but whenever I eat anything, no matter how soft it is it feels like I've swallowed a bowl of bristles. Then there's the blood sugar swings when things finally start to digest & I'm nauseous & lightheaded at the same time. Sometimes everything comes back up undigested. I have a good gastroenterologist, but no one seems to have a definitive plan for how to live with this. Thanks for the good wishes...the same back to you. If we put our heads together we might just be able to come up with some answers on our own. A friend of mine who is a nurse dealing with diabetes patients suggested eating like you are diabetic to control the blood sugar swings, so I'm going to look into that. It means learning more about how to deal with carbohydrates, not just sugar. I'll let you know what I find out.

LINDABERT's Photo LINDABERT Posts: 91
11/12/08 8:44 P

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Welcome to the team! It seems that we are all dealing with the similarities of our lives in living with gastroparesis. I had nausea, as well, and the Dr. prescribed some anti-nausea meds that help, although they do make me sleepy. Maybe they can give you something for the nausea. I think we are hoping that this gets recognized as a real blight in people's lives and that it isn't easy to live with, but we are hopeful some other meds can be recognized as helping us deal with our symptoms. Food is our sustinance and finding what we can live with and digest is challenging. Thankfully, though, we all have each other to bounce ideas and thoughts off of. That is truly a spectacular thing.

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POLYHYMNIA23 Posts: 24
11/12/08 7:50 P

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Yeah, just blending everything up seems ridiculous. There has to be a way to live with this. I don't have pain, I just have severe nausea, so that's what caused me to get back to the gastroenterologist. I guess we'll see what she says. I still haven't heard from the office on what I should be doing. All my research is solely based on my online research. I hope things look up for you soon! Keep your chin up, it WILL get better!

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SUZFONDL Posts: 2
11/12/08 12:00 P

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Hi Polyhymnia & all - just f.y.i.; you are not supposed to be eating anything high fiber or high fat with gastroparesis - that includes whole grains, vegetables & fruits. It takes too long for them to clear the digestive tract, leaving us open for things like extra pain & blockages including something called bezoars (what are we, cows?) which is a pile of stuff that won't digest & just sits there - sometimes it has to be removed surgically. I lived on fruits, veggies & healthy grains - I'm stuck trying to find out what I can & can't eat to minimize my pain. In the same boat with the rest of you trying to find a healthy diet. Just got out of the hospital yesterday; upper endo, biopsies & oh joy, a newly diagnosed hiatal hernia. Reglan didn't work for me either. I'm going to try to find a nutritionist that will give some advice other than soft foods,puddings, etc. One brainiac told me to put things into the blender & drink the result. I'm only 52. I'm not going to live the rest of my life eating gruel!! For goodness sakes, I'm a test cook! Sorry if I sound a little ticked off. My problem is keeping weight on...this has caused me to lose 40+ lbs. If I find anything good, I'll pass it on

POLYHYMNIA23 Posts: 24
11/11/08 4:27 P

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Hey all--I was just diagnosed with gastroparesis. Here's the thing, I had the test done and the nurse called me with the results and the only thing she offered was to put me on a medication that is not even legal in the US called domperidone. She said they write the script to some other country and its $40 a month. They haven't told me what to eat, or what to avoid and I'm really confused. Anything processed makes me sick, so I eat only whole grains (as much as possible) and I love vegetables. Does having gastroparesis mean that I have to give that up?

If you have been to see a nutritionist without insurance, do you know how much a visit would cost? I'm so irritated because I feel like I am flying blind.

I've been on reglan 4 times a day @ 10mg each. It's not helping. I have had nausea for a little less than a year and well, I have all the symptoms of gastroparesis so I'm not surprised that I have it. I just wish I could get some concrete answers from my doctor instead of getting self help through the all so unreliable internet...

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HEAVENLYCHILD83's Photo HEAVENLYCHILD83 Posts: 3,440
10/14/08 2:26 P

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Welcome annie and lucky. i too was recently diagnosed with this about 2 weeks ago. I meet with my gi doc next wed to discuss treatment and figure out if i should see a nutritionist or not. as far as the meat, i really am not a big meat eater, never have been. so cutting that out would be no problem. i've also been avoiding whole grains and it't helping a little.

God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. (John 3:16)

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/14/08 12:44 P

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Hi Annie, If your pain is like mine (stomach cramps that have you doubled-over), then you might want to try a couple of things that my doc recommended for me: get my stress under control (that meant antidepressants for me), keep a food journal and whatever makes me sick - AVOID, and a Rx for Tigan (anti-nausea med that makes my stomach feel numb. It's a real life-saver). He told me that I should eat only what I can tolerate, and right now that's more carbs than anything, and we all know what happens when you eat lots of carbs! Try to keep your chin up! I'll answer any questions I can, and offer support as much as I can!
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Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/14/08 12:37 P

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Hi there! If you're like me, it's very hard to get enough protein in your diet. I had to give up meat, with the exception of softly baked flounder or tilapia. My doc has me on Ensure High Protein drink. The chocolate isn't so bad if it's really cold. Some people say it's too expensive (about a $1 a bottle, cheaper at discount stores like Wal-Mart and Target), $1 is about what I'd have spent getting a treat from the local bakery, plus Ensure is good for you. I know, I miss salad also! It's been about five years since I could eat salads or any type of greens. I have to rely on multi-vitamins to help. My doc took me off Reglan because one of the side effects is involuntary muscle action. You might want to check out some info on google. Sometimes this one side effect is irreversable. I'm able to use the Azithromycin because I'm a guinea pig at the local teaching hospital and a doc there is doing gastro. research. Not crazy about being a guinea pig, but it was this or going back to baby food and a liquid diet, which I'm sure I'll see again.

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LINDABERT's Photo LINDABERT Posts: 91
10/13/08 11:44 P

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My doc said Reglan is the only med. Is the Azithromycin working for you? I am addicted to Nexium and Tums and need them to keep some of the acid at bay. I am still in shock at the foods that are now taboo (who ever would have thought that salads were going to be bad for us as lettuce is absolutely awful to digest), and still can't seem to get this all through my hard head. Unbelievable and very scary. If I am only in my 40's and can't digest most foods, what is going to happen as I get older?

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/13/08 11:35 P

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I tried Reglan, and then Erythromycin syrup (pink), and now am on Azithromycin. Also having to use Prilosec for excess acid. Am hypothroid also. I was wondering if a nutritionist could help me. My doc says to just eat whatever can since my diet is so limited now. Everything has to be soft, fiber-free, low fat.

Edited by: LUCKY-13 at: 10/22/2008 (00:33)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LINDABERT's Photo LINDABERT Posts: 91
10/13/08 11:11 P

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Welcome to you, also. I see an endocrinologist for my hypothyroidism and he is helping me a bit. I have a follow-up visit with my gastro doc the end of the month and will see what options are available. There is only 1 med, Reglan, on the market for this and it doesn't work for me. So, it's back to the drawing board and some more trial and error until the next visit. Seeing a nutritionist is also on the list of people to see.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
10/13/08 11:06 P

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Hi! I'm new to SP and still learning also. I've had gastroparesis for about five years now. Does anyone out there have a doctor that's really helping them with this? emoticon Annie, can you tell me how the visit goes with the nutritionist?

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LINDABERT's Photo LINDABERT Posts: 91
10/13/08 11:05 P

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Hi, Annie!

Welcome to this team! It is great to see that you have some positive direction and that you are going to find out more about the condition. I, too, was recently diagnosed and am working on trying to live with this condition.

I have found, merely through trial and error, that meat of any type is very difficult for me to digest. So, I have become a self-imposed vegetarian, of sorts. I also have given up my high-fiber breakfast cereal, which I thought was good for me, and am trying to eat smaller meals through the day. Of course the fried foods and rich sauces had been given up long ago! Eating late at night is also not the best for digestion purposes.

I will share anything new that I find out and, hopefully, team members will do the same.

Take care and take it one day at a time!

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ANNIEM56 Posts: 2
10/9/08 9:06 P

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Hi there! I am new to this board, so please bear with me as I learn about this site.

My name is Annie, and I was diagnosed about 5 weeks ago that I have gastroparesis. I meet with a nutritionist next week so I can get some better ideas on what I can eat.

I have been overweight for quite some time and my doctor told me that if I did not quit what I was doing, she was going to recommend me for gastric bypass. I am to see her next week also, so it'll be interesting to hear what she wants to do.

Has anyone else been diagnosed with this gastroparesis condition? If so, what have you done to help minimize pain, etc.?

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