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Old 02-26-2008, 09:24 PM   #1
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Gastroparesis... please share 2!!

Well I will be shocked as you know what. They had to close our thread it was so long!!!

Just wanted to peek back in.

Ughh spent another 9 days in the hospital with horrific pain. It was not fun. How do you treat pain without making gastroparesis worse.... UGHHHHH Anyways, I am home now, feeling better FINALLY... and knocking on wood too. I did lapse in taking my domperidone when I was feeling good, and unfortunately it was great while it lasted but definetly got me in trouble. My doctor told me that certainly twice a day was not enough to maintain normal rhythm of your stomach. Guess I will be good and take it four times a day <sigh>.

Pika, why does your doctor only let you use it for nausea?? If you are having bloating from slow digestion, it wont benefit you only taking it random, you gotta prevent it. I would demand an answer, that just isnt right unless yours is from something else and not gastroparesis. Might be time for new doc that understands GP/
Good to hear from you all GP sufferers.

Last edited by sam78; 02-26-2008 at 09:28 PM. Reason: forgot about you Pika

 
Old 02-27-2008, 05:15 PM   #2
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Re: Gastroparesis... please share 2!!

Sam, sorry to hear about your admission. I was like dying on Monday because I had my breakfast!

She don't let me take the Motilium (Domperidone) because the gastroscopy, colonoscopy and all the biopsy came back normal. No bugs in my tummy. She said she can order a lactose and fructose breath tests for me. I don't understand why she still wants me to go through all these tests? The test is normal then they left me as it is. If the test turn out abnormal, they said was artifact and also left me as it is.

I am very miserable. I cry everyday. She is my second gastro Dr. She only offer me an iron infusion and Nexium. Is all these she can offer me? All that I want is my tummy can flatten a little bit then I can breath easily. I am not sure my dizziness is caused by blood sugar too low or stomach too empty? All I know I live inside the spaceship!

Take care, everyone.

 
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Old 02-28-2008, 07:36 PM   #3
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Re: Gastroparesis... please share 2!!

Well unfortunately Pika, sounds like you have fallen into the hands of someone that does not have a good understanding of GP. GP doesnt show on any of the tests you have done. Only way to diagnose it is to do a gastric emptying scan. Since you scopes and biopsy were negative, that SHOULD give her more of a reason to think of GP and want to use domperidone. Sorry. Hang in there and I would try to take the domperidone as much as you can.

 
Old 02-28-2008, 08:58 PM   #4
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Re: Gastroparesis... please share 2!!

Sam, thanks for the understanding. I would follow your advise and I think I didn't have anymore choice either.

This morning has the same thing. I don't care how long that I can live now. I just want a functional life.... When Domperidone finish, I'll ask for sleeping pill to sleep. No GP, no anxiety and no complaint.......

Life is so miserable.....

 
Old 03-15-2008, 08:43 AM   #5
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Re: Gastroparesis... please share 2!!

Hello all!

I have also been diagnosed with Gastroparesis. My score on the emptying test four years ago was 115. High end for the 60-90 norm, but not enough for my gastroenterologist to diagnose. He diagnosed me with colitus and GERD at that point and put me on AciPhex (My god I love that pill), famantodine and told me colitis goes away on its own. The problems I had then, eventually got better. This past summer, I started getting sick on and off for 3-4 days at a time. It was frustrating but another endo/colonoscopy showed nothing really abnormal. Actually EVERYTHIGN showed nothing was abnormal and I was convinced it was in my head! Finally, after ending up in the hospital due to a 5 day vomiting cycle, he re-did the emptying scan and it was at 265. >.< it got markidly worse than 4 years ago. I'm at the point that nothing seems to pass and for 3.5 weeks i've eaten VERY little else than Cream of Wheat. Thank goodness I don't hate it.

I tried Reglan 4 years ago and the side effects were very bothersome. Twitching, excitability, heart racing etc etc. My doc remembered this and finally prescribed the domperidone. It's taking it's sweet time getting here -I was told 4 weeks tops. I'm averaging 5lbs a week weight loss right now, thank goodness I had some weight to lose or I'd be in trouble right now.

I've read every single page of the old thread and one thing I didn't see addressed was the persistant nausea and treatment for THAT. I understand the way Gastroparesis works and I have a long road ahead of me finding foods I can eat and amts that work for me. The problem is that I have no choice but to work every day. I'm a single mom of 2 boys and if I don't work, bills are nto paid. I went to my PCP originally in Oct and he prescribed me Hydroxyzine (Vistiral). I took it as needed when the vomiting cycles became more than 2 or 3 hrs. At first it totally made me sedated for at least 48 hrs after taking it. Now I can tolerate it as long as I have about 8 hrs of sleep. It seems to help wtih the nausea.

I am hopeful somedays and entirely discouraged others. I'm only 31 years young and the prospect of dealing with this forever is daunting, to say the least. I actually cried when I read these boards. A small part of me still felt this was all in my head. My gastro doc was soo vigilant until he found the diagnosis and now I feel very alone and without the answers I am seeking desperately.

I'm concerned about the Domperidone as the doc only said it woudl cause dry mouth and headaches. Does it have any other effects that anyone is aware of? I'm also trying to grasp why it isn't available in the U.S. ?

Also, has anyone heard anything regarding TZP-102 ? It's the new drug due for 2010 as a treatment for Gastroparesis. Perhaps for those that aren't able to tolerate Reglan or don't do well with Domperidone?

Thanks for reading, I've felt alone for so long that this is quite new to me.. knowing that others feel as I do.

 
Old 03-21-2008, 10:09 PM   #6
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Re: Gastroparesis... please share 2!!

DRK76

I've been on the domperidone for a while now myself and havent had too many side effects to report.... i noticed that i have WAY more bowel movements than i used to, but in a good way ....

but the main "side effect" i've had, which has been a bit bothersome is that my breasts leak... eeeeggghhh.... its pretty annoying and has only gotten worse as i've continued teh treatment.... ive adapted to taking care of it, but intially i found it really surprising and was quite shocked, however now i know its TOTALLY normal, in fact, some women who are having trouble breastfeeding are given the drug to stimulate milk flow...

so its a pesky problem, but easy enough to deal with... thats really been my only complaint!! its worth it to be able to eat again

 
Old 03-21-2008, 10:10 PM   #7
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Re: Gastroparesis... please share 2!!

in addition to the above...

i found that the domperidone has been REALLY effective in combatting my nausea.... the reason you're feeling sick and spewy is that your guts are full of old rotting food.... once it clears out a bit.. you'll feel heaaaaaps better and less nauseous anyways

 
Old 03-22-2008, 04:08 PM   #8
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Re: Gastroparesis... please share 2!!

Hiya you all. You wouldnt believe what I have been through the last 2 weeks. Just got out of the hospital AGAIN. Couldnt keep food or fluids down which led to me not keeping my medications down... which led to well disaster since I have bad heart problems. One thing led to another and I wound up having a procedure to try and fix my heart, hoping that they could get me off some of these medications to help my stomach. HAAAAA not only did it fail i just wound up taking MORE medications!!!!! How ridiculous life has become now. So that is how I am doing!! But I will tell you, my gastro doctor set a plan that if this is to happen that I need to be admitted to the hospital for several days of bowel rest and then slowly start with food again, and I tell ya it worked. Pain went right away, and I was able to tolerate food again with a couple days.

DRK.. your right, one thing we havent talked a lot about is nausea. Makes me nauseated just thinking about it. I have prescriptions for zofran and phenergan to help with my nausea. The domperidone does help with every day nausea but if I have a flare up then I take some zofran and immediately back off on the food and it seems to help. For me the nausea and pain come hand in hand with what I eat. If I eat something i shouldnt then of course i get the nausea and pain. Try to let your body do the talking for you. But as i said, I use a fair amount of zofran to help as well.

The story I got about why domperidone isnt FDA approved is that it came out at the same time Propolsid was being taken off the market, and since domperidone has some of the same qualities (minus the heart side affects) the FDA wouldnt approve it. And as for this other drug, I havent heard a thing about it, OMG wouldnt that be nice a drug to ACTUALLY help?????

 
Old 03-25-2008, 12:41 PM   #9
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Re: Gastroparesis... please share 2!!

What is this domph med???? I am on donital or belladonna and green lizard susp. and aciphex and without them I would really be in some pain and in the ER. I am only 33 and I have 3 beautiful girls 14, 7 and 2 1/2 and I really want to do more with them and some days I can and then some days I can't cause I don't feel good not just stomach pain but when i get gas I also get chest pain and yes my nerves are shot right now and I can't take meds for that cause they all cause gas or neusea and if it does then it makes it worse for me. I have been checked from top to bottom all sorts of scopes had gallbladder removed and then in Jan. had a hysterectomy and still hasn't helped maybe scar tissue I don't know.

 
Old 03-25-2008, 11:55 PM   #10
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Re: Gastroparesis... please share 2!!

Domperidone is a drug that is very similar to Reglan. It is used to promote stomach motility which helps with gastroparesis but is used also for nausea. It is not FDA approved so most people have to get it from Canada but some US pharmacies can get it. It is used when people are unable to tolerate reglan.

 
Old 03-31-2008, 03:07 PM   #11
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Re: Gastroparesis... please share 2!!

Hello Everyone,

First off I want to say just how sorry I am that all of you are dealing with this. It is not a good thing and I do not wish it upon anyone.

Secondly I was wondering if I could get a bit of advice from everyone please? I have had severe gastritis issues for over a year which have led to extreme issues with my breathing. At first they did not know what was causing shortness of breath but a full work up with a cardiologist, pulmonologist and asthma/allergy specialist proved there was nothing wrong with my lungs/heart.

In March of 2007 my breathing became even worse and I had to go to the ER. After 3 more visits to the ER I had an EGD done which showed the severe gastritis and a hiatal hernia. I then had the 72 hr pH probe done which showed constant reflux. They moved to have the laproscopic nissen fundoplication procedure which took place this past December 2007.

Fast forward to March of 2008 and I am still very short of breath. Now I have gastro paresis but they think I have had this the entire time. I can handle the nausea and only eating about 800 calories a day (although I do feel dizzy/weak a lot) but this breathing issue is not something I am handling well. I wake up in the middle of the night short of breath, I can't walk long distances and it will often overtake me while I'm sitting at my desk. My stomach feels like it has pushed into my chest crowded my diaphragm and lung area. I often feel close to hyperventilation and worry I am dying although all doctors have told me that is not the case.

Do you guys get this symtpom associated with your gastro paresis? They have wanted to hospitalize me but I just hate hospitals. Another sidenote is I am underweight which makes all this even more confusing for me. The wrap did not fail because the surgeon did it wrong but because the gastro paresis is pushing all my food back up. Or at least that is what they tell me.

Thanks for listening/responding everyone!

 
Old 04-03-2008, 07:49 PM   #12
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Re: Gastroparesis... please share 2!!

Stim... I have never had any symptoms such as those with gastroparesis. However, what you are describing is classic for a hiatal hernia. Did they not fix your hernia in surgery??? If not then that is your answer, and I would demand to go see a surgeon regarding it. If they did then I would recommend you get another scan to see if it failed and more stomach is protuding abover your diaphram. Your symptoms as I said are CLASSIC for hiatal hernia and indicates it should be fixed.

 
Old 04-06-2008, 05:23 PM   #13
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Re: Gastroparesis... please share 2!!

Hi everyone,

I'm new to the site and the world of gastoparesis. About one month ago I became severly nausious with constant bleching. After several trips to the hospital, an upper endo-(clean), upper GI series-(clean) and finally gastric emptying scan- 5.5 hour delay, I have been diagnosed with idopathic gastroparesis and taking it hard. I've lost 12 pounds and it's weight that I really didn't need to lose. I was put on Reglan for one weekend and ended up in the ER with hives and difficulty breathing. I'm currently waiting on my domperidone from Canada, while taking erythromycin. I've been eating chicken broth and white bread, while having many liquids.

I have been researching this horrible diagnose over the last several weeks and have found that I have some questions that I hope you can anwser. I was quite lucky as my GI doctor suspected this right away from the explanation of my systems. Prior to this I was a healthy 29 year old who enjoyed food. Anyway, My doctor has told me that I shouldn't be concerned about this condition and that they see many people each day that led normal lives while on medication and proper potion of meals. My doctor stated that she felt in the next several weeks I would be eating regular and would have gained my weight back. Is this the truth?? After reading the previous blogs I feel that I've been steered wrong. I have made an appointment at Temple but can't get in until July. I have not vomited and still desire to eat food but just can't the erythromyicin has helped the nausea but I continue to bloat after chicken soup.

My husband and friend have an upcoming trip planned for Cancun, my doctor stated that I should go. What do you think? I guess at this point I'm just depressed I feel as if I will never led my old life and can't even image having the family that I always wanted because how will I care for them. At this point I feel bad for my husband having to put up with this sickness.

Will I ever be able to eat again???????????? HELP!!!

 
Old 04-11-2008, 07:20 AM   #14
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Re: Gastroparesis... please share 2!!

i was just DX with gastroparesis yesterday thur a emptying study and the doctor put me on regia (SP?) i was wondering if i will be on this for the rest of my life or is it just unit i feel better?

 
Old 04-16-2008, 03:37 AM   #15
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Re: Gastroparesis... please share 2!!

Stimi3ek

YES! I promise you will eat again!!! just takes some time, you'll have GREAT days, and some bad days still every now and again but your quality of life will improve heaps now that you have a diagnosis, trust me... hopefully they've got you on domperidone!! though dont be surprised if you take a week or two to get into it (and a few massive poos once you start haha) ... but you will feel better, dont cancel your trip!!

You may have a few side effects, what i was least prepared for was the breast growth and leakage, it only kicked in after a few months and although hubby sure loves the new rack they get a bit sore and ive had to resort to breast pads...

sam... might actually talk to the doc about it at this point, its really become a pain and more PAINFUL actually, i cant run at the gym cuz my boobs are so swollen and achey!! im dreading the idea of breastfeeding now after all this hahaha.... i heard there are some medications you can take to level out prolactin levels, hoping to investigate and will let you know

have been having a number of off days in a row lately, but have been a bit stressed, wonder if it plays a role? ... no idea.

have had a few liquid dinners... i think it could have been a result of eating things i shouldnt last week (AKA salads... TOO much salads.. why do we crave what we shouldnt eat eh?)

*sigh*

updates later thanks guys!

 
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