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Old 08-07-2008, 08:45 PM   #1
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gastroparesis...please share 3

Well we filled up another thread. I guess this is a sign of a good topic. Oh well, welcome to the third chapter of gastroparesis. It's really nice that we can all share and help others out. If you are new to gastroparesis you might read a little bit of our previous threads titled gastroparesis.. please share threads one and two. Has very good information on gastroparesis

DeeDee, I am glad we have given you some good ideas. Definetely keep us updated, we like to hear what ultimately gets decided. But, glad at least that you dont have gastroparesis.

TRISHHHHHHHHHHHH where are you !!!!!!

Last edited by sam78; 08-14-2008 at 02:25 PM. Reason: Closing threads is not up for discussion.

 
Old 08-13-2008, 09:05 AM   #2
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Re: gastroparesis...please share 3

Sam still not word from Trish.. wonder wonder! How have you been doing? It's truly amazing the amount of response to this thread. Well here I am and 4 day's of mornig wrenching again. Thought I had control over this but..... see doc next week. Maybe just a minor set back.

 
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Old 08-14-2008, 01:20 PM   #3
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Re: gastroparesis...please share 3

Well unfortunately that is fairly common with gastroparesis. A lot of people including myself, have good and bad days. I am horrible about feeling really good and then try eating something I shouldnt and send myself back into having horrible days. Let me know how your doctor apps goes.

Last edited by sam78; 08-14-2008 at 02:26 PM.

 
Old 08-16-2008, 05:39 PM   #4
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Re: gastroparesis...please share 3

Hi guys, I love this thread. I suffer from Gastroparesis and wondered if I could post some questions that you could answer so that I feel that some people understand the problems I'm having, as I don't know anyone else who has this. Some of the answers may be obvious to a normal gastroparesis sufferer, but as my Doctor has hardly explained it to me, they're not yet obvious to me.

1. Do any of you seem to have nausea and vomiting alternating with bloating and severe gas? (sometimes both in the same day, but only one or the other, never both at the same time)?
2. Do any of you wake up regularly in the middle of the night (say 3am, 4am) and have diarrohea and vomiting and then within half an hour feel incredibly hungry because you barely had anything in your stomach at the time, even though what was in there wasn't going down?
3. Do you have a certain time of day that your gastroparesis is worse? Eg, between the hours of 10am-12 noon I can eat whatever I want, but then if I eat anything before or after those times it doesn't go down and I get ill.
4. Do any of you feel completely helpless with hunger, but the moment you eat something you feel full and ill?
5. Have any of you found that the effects of anti-emetics like prochlorperzine (compazine), domperidone (Motilium) and metoclopramide (reglan) wear off when you take them too much? Have you found that you need to take more of them when you take them regularly?
6. Have you found any foods that it's always okay to eat that never make you feel ill?
7. Do you have to get to a certain weight before a Doctor suggests you have a j-tube fittied?
8. Is there anyone here who got gastroparesis from originally catching a parasite?

Thank you!

 
Old 08-18-2008, 09:29 PM   #5
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Re: gastroparesis...please share 3

Hi Ogle, welcome to the site and welcome to this thread. I will answer your questions with my personal experience.

1: I mostly suffer from nausea but I know a LOT of people that have the bloating problem as well. A lot of times I eat, and eat very little, and feel like I just had a huge feast like on Thanksgiving. Then I feel horribly bloated.

2: I mostly had trouble with feeling horribly full at night, so I would wake up and feel bloated or extremely full and wish i could vomit just to make the feeling go away.

3: Definetly feel the worst in the afternoon, typically because I wake up hungry, eat something and then feel terrible after that for the rest of the day. Evenings were always the worst for me.

4: YES YES YES YES YES, all that needs to be said

5: I did have a couple drugs that seemed to work for some time and then the effects dwindled away. However. I have been on domperidone for a year and a half and if i take it like I am suppose to, I feel pretty good. Definetly have good and bad days. Some people do lose the effectiveness of their drugs. I lived on zofran and domperidone in the beginning. Took it regulary throughout the day whether I felt bad or not, and whether i ate or not. I have had very good results with domperidone.

6: Foods are hard to find, everybody is different. However I did get in to drinking carnation instant breakfast drinks and had pretty good results with those. I thought they tasted a whole lot better than boost and since they are liquid they seemed to go down pretty good. Not to say that I didnt have nausea still with it, but at least I was able to keep it down.

7: For me the decision to put a feeding tube in was after I had done IV nutrition for 8 months and then had some procedures and still had problems with eating. Then the decision was made to go back to IV nutrition or put the j-tube in. And because I had already done IV nutrition I had to opt for the j tube. For me mine was complicated by pancreatitis and I had been sick for one year and was unable to stay out of the hospital so I had to do the j tube. I am thankfull i did it because then I wasnt forced to eat when I didnt feel good. I was able to eat when I felt like it and do j tube feeds when I didnt eat.

8: I got gastroparesis following a bad stomach virus that attacked both my pancreas and my stomach. We were never able to isolate a bacteria although I did get treated with a round of antibiotics.

Anything else you want to know??

 
Old 08-20-2008, 08:38 AM   #6
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Re: gastroparesis...please share 3

Hi Sam, well had doc's apt yesterday he's decided to keep me on the domperidone for a while longer, he feels were' 50% of the way there, he's increased the dosage a bit but slowly. Also going to do a scope to make sure nothing else is going on. YULK... but I guess it has to be done. I do feel the domperidone has/is working it's just discouraging when you have bad day's like the last few. But I knew a good day's are to come. Learing what and what not to eat is the KEY to this whole illness. For all the newbie's out there take notes. When something makes you feel bad write it down. try it again at a later date if it still bothers' you DON'T eat it again for a long time. I found out that helps me the most. Track everything. I've never had to diet or even watch what I ate so this whole process has been difficult but I am learning because your body will make you wake up and listen to it. Seems like every day is a new adventure. Good luck to all.

 
Old 08-21-2008, 02:20 PM   #7
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Re: gastroparesis...please share 3

I find it really hard to tell what it is that has made me feel ill. If it's an "amount" of food, no matter what it is, it will affect my stomach and make me ill. Say if I ate soup and a piece of bread at the same time - I know it's more likely the bread would stay in my stomach, but how can I tell that it's not just the amount rather than the soup vs the bread?

 
Old 08-21-2008, 02:21 PM   #8
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Re: gastroparesis...please share 3

Thanks so much for your helpful comments Sam. I would really like to talk daily to other people who have this, but I find some of the mailing lists overwhelming.

 
Old 08-21-2008, 04:19 PM   #9
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Re: gastroparesis...please share 3

Olegen, it really depends on you as to what will affect you, but I can tell you bread it really one of my hardest things to digest. I have found that fiber is truly one of my enemies so I limit my intake as much as possible, also the skin on vegetables. You really have to trial and error, several small meals once your full stop.. then try again in a little bit. after awhile you will be able to increase the amounts. Even when your still feeling hungry still keep it to small amounts. I have found that if I have not eaten by a certain tme of the evening I will not eat.. I can not go to bed with food in my stomach I will wake up sick and many times it will be last nights late food. that's not good.. so what your times eat early and small.. hope this helps you..

 
Old 08-21-2008, 07:21 PM   #10
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Re: gastroparesis...please share 3

Hi, I'm Melinda, I'm a 41 year old SAHM from the mid-west. Just diagnosed a few weeks ago with gastroparesis.
I'm on reglan but I hate the side-effects.
Anyone else have unrelenting nausea. It literally just ruins my life!!!!
Sorry to have to 'meet' all of you under these circumstances.

 
Old 08-22-2008, 04:05 AM   #11
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Re: gastroparesis...please share 3

Mishcoto I tried Reglan but could not take the side effects, I am currently on Domperidone and showing some improvement. I guess most will tell you it's a long process to get this under control, no cure but control. I am about 50% there with the use of Domperidone. NO side effects so far and I have been on it for about 2 months now. I can say I have been able to eat more and the constant nausea is better, the morning wrenching is better though not gone. Domperidone is not easy to get in the US but it's available thru Canada Pharmacy's.

 
Old 08-22-2008, 04:31 AM   #12
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Re: gastroparesis...please share 3

Thanks for your reply, yes I figured I'd have to get the domperidone from Canada. I am trying accupuncture. Has anyone else tried this? Also, has anyone had success with the 'stomach pacemaker'?

 
Old 08-22-2008, 05:12 AM   #13
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Re: gastroparesis...please share 3

I am a true believer in accupuncture but I have not tried it for gastroprasis, I actually tried it for migraines and it helped. I am not to the point of the stomach pacemaker, though my doc's have talked about it. Hopeing it does not come to that. I have managed to maintain my weight so right now that;s on the back burner. I know from reading the threads many folks have had to go to that.. good luck. The Domperidone has been extremely helpful. I do recommend it totally over reglan. I just could not tollerate it and function.

 
Old 08-24-2008, 04:50 AM   #14
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Re: gastroparesis...please share 3

Last week the Reglan side-effects were so awful I almost stopped taking it. This week they are slmost gone! I wonder did my body get used to it? So for now I'm good.
I have never had bloating or problems with losing weight because I can't throw up anymore! I had a Nissen fundoplication surgery last March (top part of stomach wrapped around esophagus) but I had gastroparesis prior to that.
My only symptoms are gas and unrelenting nausea. I can take anything but nausea. Ugh!
When I have to stop the Reglan if the nausea comes back I am going to seriously consider the gastric pacemaker.

 
Old 08-24-2008, 10:14 AM   #15
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Re: gastroparesis...please share 3

Hi, sorry everyone I am back. Had a little flare up there and what do you know 3 days in the hospital. Its much better now though. Nausea stinks but better than the unrelenting pain.

As for the pacemaker, it will only work if you dont have a problem with your stomach muscle. See there is two causes, either its the nerves that conduct the impulse or its the muscles. If your problem is the nerves then the pacemake will work great. For example diabetics, they typically have a nerve problem so a pacemaker works well for them. But if you have a muscle problem, then it wont do any good because they are likely already getting the impulses from the nerves the stomach is just contractly poorly from them. So a pacemaker wont help because it wont make the muscles contract any better. Its a tough situation, and trying to figure out which you have a problem with is hard to determine.

 
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