Gastroparesis bloating

• By gpgirl5
• Posted July 2, 2009 at 7:18 pm
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Hi Evie. I am a little concerned that you are taking Zelnorm -- wasn't that recalled? I didn't think it was available anymore. I have taken it briefly, and it caused horrible stomach pains. I would suspect the Zelnorm for your recent troubles. Domperidone has no side effects. If it's the Nexium that's troublesome, your doctor should be able to switch you to another acid reducer. I haven't experienced sudden intolerance to meds like you have -- I hope your doc has helped you by now.

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• By Evie_S
• Posted June 11, 2009 at 9:20 pm
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Hi fellow GP sufferers:

I was diagnosed with profound gastroparesis 2 years ago. They do not know the cause- but maybe scleroderma. It took awhile to find meds that worked but finally a combination of domperidone from Canada, zelnorm (investigational use) and nexium has worked. It worked for two years. However, I now cannot take it without getting severe diarrhea. If I don't take it I can hardly eat. Today I worked very hard to get 500 calories. I have significant bloating even with liquids and pain with the bloating. I am taking xifaxin for bacterial overgrowth.

Any suggestions? Has anyone had this happen where all of a sudden the meds stop working or are not tolerated? I have lost 15 pounds in a few weeks.

Thanks,
Evie

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• By lori50
• Posted April 13, 2009 at 4:28 am
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Hi Judy, I think that is what is causing my pain and bloating. How did the docs know that you needed the retraining? and then which Mayo did you go to? Was any of the testing, etc. extremely painful? I'm so tired of pain.. thanks much! Lori

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• By Darkanian
• Posted April 11, 2009 at 9:37 pm
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It does cause alot of pain. I learned that . If I do not eat I feel better with my condition but because I hardly ever eat anything with the exception of liquids and soup I am fatigued and have no energy. I spend all of my time when I am not at work laying on the couch or sleeping.
My last hospital stay after trying to eat was so bad I lost 17 pounds in a week and a half. My potassium levels were so screwed up and the pain so bad I just slept the whole time. I am exhausted. I get frequent infections.
It is never ending it seems.

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• By TheCatzMeow
• Posted April 11, 2009 at 8:36 pm
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Hi and welcome to this group. You will find the warmest, caring and well informed members.

About six years ago I had a glass of ice water and it got "stuck" in my esophagus. I could feel it because of the cold. I was in no pain, but went to ER, I explained the situation and I was in the OR before I knew it. It turned out I had a bezoar. It had calcified and the doctor told me I could have had it for 20 years or so. It took them to literally rotor router it out of me. They increased my Prilosec and sent me on my way. No one explained anything to me.

I starting having problems with bloating and severe pain. The doctors just thought I was drug seeking. I am one of the lucky ones as I don't have the nausea. It took them three more years of me complaining to do the stomach emptying test. It proved I had GP bad. I have found a liquid diet is working for me. I take a great liquid multivitamin, calcium and vitamin D (for depression - I live in Oregon and I wasn't getting enough sunlight).

I just wanted to ease your mind about the bezoar. They are rare and a simple endoscopy will show if you have one or not. Like I said, I didn't even know I had one.

If it would ease your mind you might want to ask your doctor to do an endoscopy. I have to have one about every four months to dialate my esophagus. I can tell when there is a problem as my meds get stuck in my esophagus. This is not a problem for many.

I hope I have relieved a little stress. Just remember, you have to be your own advocate and the squeaking wheel gets the oil.

Please take care, Cathy

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• By sitkaconny
• Posted April 10, 2009 at 12:18 pm
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Trish,

Reglan is a "run away" drug. It falls under the neuroleptic class, which Haldol, Thorazine, and such are in...th class is related to side-effects. Has anyone told you about Domperidone? Seems to work for some with GP, but you have to get it from Canada or Mexico. Way nicer than the Reglan aka Run-Away Drug.

I know about the Bezoars, and that is what I usually vomit up, and it hurts.

Have you had any tests done in the piloric spincter? Am wondering, if this is also part of the cause. Many GP patients also have sucess with botox injection at the piloric valve. It is done about every 3-4 month.

Sadly to say, the GP is not a weight loss diet, due to highly processed foods, but yet not nutrtious enough either.

Regarding the reflux, I am finding out, if I eat too much, or do activity after eating, it is really bad, like mentioned before, try very small meals throughout the day and see what happens. At times, my heartburn is so bad, I take some pepsid IV which seems to work, bcasue this year, my EGD looked great, compared to before.
Have wedge under the matress, to bring the head of the bed up a bit to help you sleep also.
Food has to go somewhere, if the stomach does not empty out, then it wants to get back up. I hate to taste food the second time around....
Have you tried vegetable juices?
Right now, do not worry about the weight. I know people have a hard time understanding, that one has a very sick stomach even so are weight is going up, or one is not losing weight...

Hang in there

Cornelia

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• By lagirl1966
• Posted April 10, 2009 at 12:00 pm
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Hi Cornelia,
I am sorry that you have the nasty side of GP. I don't have any vomiting with mine at all. Just terrible heartburn and bloating. I bet you think I am lucky. I don't think I am. I just wish I could lose my weight. But since I cant eat veggies I dont know if I can or not. I was taking reglan for the GP and it ruined my eyesight. No one told me of the side effects and blurry vision was one. Now I am off of it, and my vision is still blurry. Since I can eat solid foods, I want to try to eat some veggies, but only ones that are safe so I don't get a bezhor. Thanks
and take care,
Trish

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• By sitkaconny
• Posted April 10, 2009 at 11:45 am
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Hi Trish,

I have been suffering from Gastroparesis probably since 1997, but I did not get the right diagnosis until 2000. And, I did not get the right treatment that works for me until 2002. BVy the way, may Gastroparesis is idopathic.f

I was also diagnosed with Colonic Inertia in 2003, and am wondering how long I have it also....

I understand, where you are coming from. Fear is a nasty thing....I have been there and just got sickker and skiiner.....Gastroparesis foods need to be low fat and low fiber. "Grazing" or eating small bites throughout the day seems to works for many....As for the bloating and pain, there are times, I am soooo nauseated, that I need to empty my stomach, so I make myself vomit, when that happens, usually about 1+ days worth of food comes up. It does not happen all the time. I loive broccoli, but it does not love me.....I keep trying bites and then the pain.......What I am trying to say, is that try foods and drinks, your body will tell you, whether it likes it or not.

As for the bloating, I am wondering, if it is your colon vs your stomach. Just food for thought.

What are you taking for nausea?

I have the "Gastric Pacer", which helps reducing the symptoms and I take Phenergan IV via port-a cath. I have been doing Phenergan IV since 2003, and no I am not getting tired from this medication alone. I also have Kytril, same class as Zofran. My Medecation provider does not carry Zofran.

By the way, I gained my weight back, but still suffer from malnutrtion, due it hard for me to get enough protein...

When people say "You look so go", sometimes I want to shuff my labs into their faces, and oh yeah read this...
In other words, Gastroparesis is a hidden illness, unless we have bunch of tubes that are visible, and my IV site is not visible..

I hope this helps, keep trying eating foods, graze all day..... in other words, processed foods work the best for GP tummies..

Take care

Cornelia

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• By GeorgiaCath
• Posted April 10, 2009 at 8:49 am
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I keep hammering on this forum on this one thing, but it saved my life so I'll continue as it might help someone else:
The Specific Carbohydrate Diet.
Check out what it's done for thousands like us at
http://www.scdiet.org/

They have an international organization, the diet has an 80% success rate, and it's been around since the 30's.

Good luck!
Cathy
cathycanen@gmail.com

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• By Carol88
• Posted April 8, 2009 at 6:31 pm
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I also have extensive gas/bloat syndrome. Six months after my original nissen fundoplication I developed a bezoor...exactly what you explained in your message, I was a clear sack/bubble attached to the lining of my stomach. During an upper endoscopy we could actually see the many pills I had taken a week or two up to the day of the procedure. I could even tell you which pills there were. I was very worried that the bezoor might "pop" and all those pills dissolve at once and cause a medication overdose. My gastroenterologist actually put adolph's meat tenderizer into my stomach and used probes to break up the bezoor and try to push the contents into the intestines so my body could expell all of the pills and vegetable fiber. It's was similar to a fur ball in a cat. You definitely want to follow up on this. In addition to the complications of just having a bezoor, you also need to watch that it has not damaged or weakened the stomach wall where the bezoor was attached. Good Luck!!

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• By HFrantzen
• Posted April 7, 2009 at 5:01 pm
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I've had extreme bloating, as well. It was awful. Upon recommendation from my doctor, I got off of dairy and raw vegetables and that has made the biggest difference for me.

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• By gp04
• Posted March 31, 2009 at 2:58 pm
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im right with ya on the same boat. I was a size 4 and now I'm a ten after follwing a low fat low fiber diet and taking my domperidone. While the nausea episodes are less (they were 3-4 times a week) now maybe 1-2 time e/o month still getting cramping/stabbing pain in the left upper quadrant though. Has anyone tried ginger as an alternative theraphy? while the domperidone works, its getting costly. Not liking this weight gain thing, I can work out and work out but all the carbs are kicking my butt!

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• By Gajudy
• Posted January 28, 2009 at 2:54 pm
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Just saw your post about bloating foods. Sugars, sugar substitutes, & sometimes milk & dairy products are all know offenders. At least they are on the IBS list of foods to avoid. Hope this helps you. Gajudy

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• By jpoucher
• Posted January 28, 2009 at 11:13 am
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Jo,
thank you for that info. I think I'll try it/order it. My doctor is just so slow at getting to the bottom of my problem, it's just frustrating. That bloating is so painful. I'm rolling around in my bed now trying to find a comfortable position - no luck. This is just nasty. I sympathize with anyone who has this condition. Thanks again. Please keep me postedd if you find any new aids in this problem.

jpoucher

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• By JoAllison
• Posted January 28, 2009 at 9:24 am
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digestive enzymes are things that help break down food in your stomach. I take plant-based ones called Zygest (here's a write up about it: http://www.vitaminusa.com/07-16963-94766.html). Other people take ones made out of pancreatic secretions - I think those might be prescription only though. I get mine in the health food section of my grocery store, or at the health food coop. You can also buy them online. My alternative medicine doctor started me on Bromelain (pineapple based, breaks down proteins) . I moved to Zygest when I forgot to bring the Bromelain on vacation & Zygest is what I could find (it has bromelain in it, along with a bunch of others that break down fats, carbs, plant fibers, milk sugars, etc, see the write up), & it worked better for me - she approved it when I told her about it. My GI knows about it & has not said not to take it. Maybe other will chime in with the sorts they take.

Jo

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• By Annie15
• Posted January 27, 2009 at 9:29 am
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The bloating is the worst part of GP at least for me. I have tried a variety of things, Gas-X, digestive enzymes, etc. Right now I'm keeping a food journal and I suspect dairy foods add to the bloating. Sometimes a heating pad on your tummy helps with the pressure and pain with the bloating. Do you have constipation with the bloating or diarhea? Try some of the things that people recommend and maybe something will work for you. Hang in there and remember that you're not alone with this condition.

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• By jpoucher
• Posted January 27, 2009 at 7:01 am
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Just wondering: what are digestive enzymes? I am going for a gastric emptying soon, and I would like as much info on gastroparesis as possible. Thanks all.
jpoucher

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• By Gajudy
• Posted January 14, 2009 at 12:39 pm
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Hi Everyone. This discussion has been so interesting to me. I also have terrible bloating & have gained 15-20# in the last 1& 1/2 years. Have you all noticed that the bloating seems to get worse in the evening? It seems that the gerd is worse then, too. Guess the food just sits there all day & seems to ferment by evening. I have been taking the digestive enzymes, but haven't noticed much change. I take a multi probiotic mixed into my morning yoghurt, too. I'm wondering if that method doesn't allow it to get to the intestines where it belongs. One thing I do is that I mix whey powder into my yoghurt to get extra protein in the morning, & sometimes in the evening, too. That might help some of you who have trouble digesting protein like me. The comment about putting the probiotics in hot cereal makes me wonder how effective they would be that way. Heat kills off that kind of bacteria. That's why they say to buy the refrigerated ones & to keep them in the fridge. That's just one of those things I picked up somewhere down the line--don't know where I learned it. The problem with swallowing pills or capsules is the reason I buy enzymes & probiotics in powder form. I don't know if this helps anybody or if anybody has the same problems. Just my 2 cents worth.......... Wish I could find some magic for my weight & my bloating. Gajudy

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• By Loie
• Posted December 20, 2008 at 10:38 am
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Thanks to all for ''reminding" me of the things I use to use and have discontinued little by little over the years due to the cost. As it is, my copays are $1200 a month. Therefore, whenever I can cut down on something...I do. Over time I forgot what it is that I have "cut down" on. I took the digestive aids for 10-15 years and now, thinking back on it, I think they did help...also the Acidipholus. It has been years since I took either. I will cut something else to try these again.
The bloating has gotten worse recently. I have an old abdominal scar from my breast bone to pelvic bone. Lately I have been so bloated, without any relief, that the scar is stretching, splitting and bleeding. Hopefully the above will help at this time. I wanted to try the cilantro leaves because don't think I should because it will cause an obstruction at this point.
I not only think the stress of Christmas causes flare ups, but the fatigue of it all. I think it lowers our resistance which makes things worse.
I sincerely hope everyone has a very pain free, hospital free, stress free, etc. free Christmas and a very productive New Year.

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• By jpoucher
• Posted December 20, 2008 at 9:28 am
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Hi everyone,

It seems that a lot of us have several disorders along with IBS/motility disorders and whatnot. I, too, have migraines (meds don't help), back pain (due to bloating, probably) pouchitis, etc. It's crappy. This Christmas isn't going to be so hot. But, I'm hanging in there. If anyone has any suggestions about bloating/foods, please let me know.

Thanks,
Judi

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