Gastroparesis Anyone?

[JenEpicFarms]

This post is somewhere between an FYI and a request for information. A brief rundown: my symptoms started with my stomach in the beginning of 2009 and have continued to snowball for over a year. Upper abdominal bloating/swelling (bra circumference went from a 34 to a 44 but I lost 8 pounds), acid reflux, heartburn, pain, constant hicurps (an icky cross between a hiccup and a burp), unable to eat over a few bites at a time, and nausea (esp. when leaning forward/bending over) :o)  I felt like a cross between Dolly Parton as a pregnant woman and a middle aged man [with a beer gut the size of a monster truck tire]. A total of 11 months of doctors and testing revealed a big, fat NOTHING gastrologically speaking.

Then I spotted the word Gastroparesis somewhere around here on Saturday, and was prompted by the prefix [gastro] to investigate further 'cause you never know. I found a nice, neat list of my stomach symptoms listed under that very same word on a site called GIcare.com They also had a diet plan posted here: http://www.gicare.com/diets/Gastroparesis.aspx in case anyone else is interested.  I decided to give it a try, and it is like a miracle. My stomach is still slightly poofy, but I could bend over to put my socks on with NO nausea yesterday (and it was an interesting experience, as both my feet were a lovely shade of purple for about 5 minutes...ooook-ay, Raynaud's perhaps?). Anyway, I could not believe how much better I felt; the hicurps have all but disappeared today (boo-yeah! :o)

I've added Acidophilus to my pills to pop, because it's supposed to be helpful in aiding digestion - does anyone else take that? Also, if you follow a really stringent diet like this, can you cheat periodically without serious ramifications? I'm not a diabetic, but I am a chocoholic and I have to admit that some of the items on the No-No list just really hurt my feelings: No blueberries? No ice cream? Like, ever?? *sigh*

I have not been DX'd yet, but was willing to experiment with this one. I was curious to know if anyone here had any thoughts or suggestions on the matter.  Thank you... for reading this far ;o)

- Jen

[angela120]

I went to a stomach dr. and he had me get the stomach emptying scan done. I had to eat about a cup of oatmeal and they had mixed the stuff they need in it. I laid on this table for an hour while it did its scanning. My dr. said my stomach takes twice as long to empty. He also performed an upper gi test. I take Metozolv and it is the oral one. You are to take a whole tablet but it really knocks me out so I take only half. I have the hiccuping too a lot with ANYTHING I eat. It is like a high pitch hiccup..lol The dr. said I will probably have this disorder all my life. He said with all the stomach illnesses you can get he believes this one is the worst to have. When I first had it I was realllllly bad off. Throwing up every day and hardly eating. I lost 10 lbs from it. I wish that one drug overseas would come here to the U.S. The dr. said he can't understand why there are no more drugs for this out there. I am glad to have found this site and see others with the same problem. :(

[JenEpicFarms]

Anna:
It's always nice to know I'm not the only weak-willed woman on the planet ;o)  I'm going to ask about testing and meds too; I've never heard of an international pharmacy before this - pretty cool! You'll have to let me know how it goes.

- Jen

P.S. Hope you like egg salad (ick).

[ack65]

Hi Jen and Celery,

Hey Jen - I see we are the same age and last night I too was led into temptation by a lovely meal of meatloaf, gravey, and potatoes, cooked by my Hubby and once again was burping all night and my stomach was doing flipflops.  At least I knew better than to try the cauliflower and broccoli with cheese.  My son asked why I don't have to eat that (he has veggie issues) and I told him it hurt my tummy - his reply "aw you're lucky"  I really do feel better when I don't eat but then you get lightheaded, weak etc.  So I am back on crackers and soup today as well.  YUM! Maybe I'll lose weight again because the 40 punds I lost before appears to have found me again - drats.

Celery - thanks for the great info.  I was given Domperidome in the hospital after having my son to stimulate milk production.  I also asked if it would be served with a cheese and cracker plate but I don't think the nurse was too  amused.  My plan is to ask the doctor for testing after the neurology follow up. Anna

[JenEpicFarms]

I guess the Cisapride was the one I saw that wasn't welcome here in the US; couldn't remember. I am planning to ask the doc at Mayo about gastroparesis, testing and medicine. Got the giggles when I read the other med you mentioned, and mentally rewrote it: Dom Peridome...  TeeHee (do you take it with caviar? :o)

As for the egg salad sandwich, here's hoping there's a Plan B because BLECH!!

I believe Reglan is currently in the middle of a class-action suit, and since you said that Domperidome doesn't have any side effects, I'm definitely more interested in going that route (because DUH, right?) Can you eat "regular" food again if you take it? If it will get me back into ice cream and blueberries, I'm all OVER it ;o)

Thank you so much for all the information!

- Jen

[JenEpicFarms]

Anna:
  Because I'm an idiot (and a skeptical one at that), I thought I'd experiment a bit more last night. We'll blame this bit of insanity on my husband, as he is the one who decided to cook some yummy-looking hamburgers for supper (I assume you can see where I'm headed here... :o)

  Anyway, now I know for sure (after scarfing down said heinous hamburger) that it was indeed the food wreaking havoc, and not any kind of coincidence that the hicurps dissipated with the change in diet. Less than 15 minutes after I ate the burger, the hicurps resurfaced (doggone it), and my tummy instigated a protest march in there. *sigh* Guess that means I need to behave myself (as that definitely was NOT worth it).

  I had crackers and chicken noodle soup for breakfast [hold the hicurps] *grin* and am feeling better, although not quite back to where I was this time yesterday. So I guess I just need to give myself a big, fat RASPBERRY and move on, eh?

The symptoms of my current medical misadventure started last January (mentioned it to the doc in February of 2009) and have been going round and round ever since. Thinking back, though, I can remember some other questionable things cropping up that could be MS-related when I was in my 30's (I'm now in my mid-40's). Guess we'll see what happens at Mayo (hopefully something crazy, like a diagnosis :o)

[Celery47]

Hi all!  Thanks for sharing, all of you.  Jen, you're a cancer survivor?  Wow!  Well, I really do hope all of your tummies start feeling better.

Just a few ideas, from reading through your guys' posts:

First, about domperidone: I thought domperidone was only available for "compassionate use" too!  I went through two years of unmedicated nausea before I finally figured out that it's not true.  Most doctors aren't aware of this; I was fortunate enough to have a GI doctor who specializes in international prescriptions, and she finally clued me in.  Another drug, Cisapride, WAS available in the US for several years, but then was pulled because it caused a number of (I believe stroke-related?) deaths.  It's now no longer normally available in any country (I'm pretty sure), but if you're really, really sick, you can apply for compassionate use, and very rarely, Cisapride will still be prescribed.  Apparently Cisapride was awesome with nausea.  I'm so bummed it was unsafe!

Domperidone is a drug very similar to Reglan (metaclopramide - the first-line gastroparesis drug in the US), except domperidone just hangs out around your blood barrier, without actually crossing over like Reglan does - thus, mercifully, it doesn't have all of those horrible side-effects!  Domperidone has never been available in the US.  It was just coming up for trials when Cisapride got pulled, and I think because of that timing, domperidone never went further.  It's in use all over the world, however, and in many countries (like Japan, maybe Germany?) it's even available over-the-counter.  And for US folks, it's actually really easy to get.  All you need is for your doctor to fill out a little prescription slip, and then you go on to an international drug site, and fill your prescription through them.  They'll connect you with a pharmacy somewhere in the world (for me, it's Scotland), and each time you want to renew your prescription, you just fax the slip over.  I really, really recommend considering domperidone.  If you have any questions, let me know!  I love this drug, and wish doctors knew how easy it is to get.

Whew, sorry guys!  Didn't mean to go on for so long. Ha, I just really love that medicine.  Lifesaver!

Another thing - gastroparesis sometimes occurs after abdominal surgery (for instance, gallbladder removal - I've heard of some other people who got it from just that!).  It happens I think because the vagus nerve gets injured while the surgery's going on.  So, ack65 - Anna - you mentioned I think that your stomach issues have been more pronounced since your surgery?  That might be something to look into.  

One last thing - anytime you still have food in your system when you're going into surgery points pretty strongly to gastroparesis.  I hope your guys' doctor situations work out so you can get tested!  It's such a painless test... that is, unless you hate egg salad :P  But really, the sandwich they make you eat is so small, and when I had it done it didn't even make me nauseous.  

Ho boy - okay, I am writing way too much... I better stop now.  But I wanted to say thanks for sharing about your guys' situations (very interesting for me to hear, since my own is pretty darn similar!) - and I really do hope you guys feel better soon.  

[ack65]

Hi Jen,

I typed in a great message this morning and then my computer lost it - okay so it was most likely operator error.  Our symptoms sound very similar.  Of course they sound so much more fun with your colorful discription.  When did yours start?

I think mine started to escalate about 5 years ago but there have been odd things all my life symptomwise.  I too am dizzy, especially if I move my head which just has to be done sometimes.  I have muscle twitching, spasms, and weakness.  It really does feel like your lugging around 1000 pound weights.  Lately I have added blurry, double vision with some other weird visual perceptions that make balance increasingly difficult.  Extreme fatigue, pain around my eyes that ends up being a heaache by midday, and the rigor mortis you described.  My left foot is numb most of the time but it can be the whole left side of my body right up to my face and tongue.  And my right hand will cease up so bad my writting looks like I'm in kindergarten.  In fact once I was asked for ID when I used credit to buy a $5 pizza - they said my signature was not recognizable.  I told the nice boy that if I was going to commit credit card fraud I would go for a bigger ticket item than $5 pizza!  I am sure I've left out some too but memory issues are another symptom aren't they.

Let me know how goes with the diet day 3.  Anna (ack65)

[JenEpicFarms]

I was calling it a hicurp, as it was a cross between a hiccup and a burp high up in the chest (most unpleasant). They were happening one at a time, though, not like regular hiccups. I don't think I have a wheat allergy, as the saltines are made with wheat and didn't give me any problems at all.

One of the things that I thought was really weird, was that my upper abdomen retained the swelling even after the colonoscopy prep (this really hurt my feelings, as I was anticipating feeling at least a little bit thinner *sigh* :o\ Not too sure I would have made it through 3 solid years of hiccups without hurting somebody!

Thanks so much for the well wishes and the help; I'm kinda tired of riding the medical merry-go-round. I've been stuck on it since 2006; first with breast cancer, then with a rare muscle disease, now this (insert raspberry here :oP

- Jen

[JenEpicFarms]

Goodness girl, how awful! Aside from the digestive issues, I have had abdominal pains that increase and decrease in intensity. They are primarily along the ribs on the right side, sometimes wrap around the side, and periodically pop up on the left side of my rib cage (this statement caused the GI at Mayo to start looking at me sideways). When I came across the information on the MS Hug, though, I thought Uh-Oh; Houston, we may have a problem...

As for other symptoms, well now let me see; we have dizziness, a migratory internal TENS unit that likes to zap me in different places throughout the day, numbness and tingling in hands and feet (mostly feet), stiffness (call me Lurch; esp. if I sit for more than 5-10 minutes, then rigor mortis sets in), balance issues, dexterity issues, burning in muscles, skipping eyeballs (nyst - something or other), tremors, the dropsies with an exponent, random cold spots (R index finger is a favorite there), and full body fatigue that feels like I am wearing a 200lb weighted suit and trying to wade through molasses. Oh, and let us not forget the invisible gremlin that likes to pop up and periodically stick me with a large hat pin. I'm sure I missed one (or ten) but you get the idea :o)

- Jen

[mary2010]

I read about gastroparesis but it didnt mention hiccups as a symptom. I have read stories from others who were allergic to wheat and gluten and had chronic hiccups too.

btw---doctors are reluctant to test for celiac disease, although cheap (around 250.00)the only remedy is dietary change and there is no money in it so they cant prescribe any drugs so very unlikely if asked they will test for it.

Mary

[JenEpicFarms]

*Laugh* I spent 11 solid months chasing the GI rabbit in circles to no avail (I've pretty much been scoped and scanned six ways from Sunday :o) Nobody suggested the stomach emptying thing though.

I did run across Celiac and Crohn's, etc. somewhere in my increasingly desperate searches for answers. I couldn't find anything that really fit though, until Gastroparesis.  I'm going to ask when I go to Mayo (hopefully this doc will have functional hearing ;o)

Jen

[mary2010]

Hi,

I wanted to reply to your post because your symptoms sounded a lot like mine did several years ago. I had chronic hiccups from 2005 thru 2008, acid reflux disease, abdominal bloating, constipation alternating with diarrhea, stomach cramps and nausea and weight loss except for my abdomen.

The doctors went round in circles for years, kept testing me for everything but what they should have. It turned out I am allergic to gluten and after eliminating this from my diet my abdominal problems and yes finally after three years my hiccup problem was resolved. You may want to google celiac disease and gluten sensitivity to research it further. Celiac is dangerous if left untreated, can lead to other fatal complications so a strict diet is very necessary. I have been on a gluten free dairy free diet for over a year and found it very worthwhile, even found since following the diet that it has put a lot of my ms symptoms to rest.  

Hope you can figure it out real soon, I know from personal experience those symptoms can be miserable.

Mary

[ack65]

Hi Jen,

I checked out the site and this is the same diet they put me on in 2005 when I had my Gallbladder removed.  I was so sick prior for about a year and finally my former dr referred me to a gastrointerologist but it was an 8 month wait to see him.  In the meantime all I could eat was crackers, broth, and camomille tea  and gingerale.  I lost about 40 pounds in 6 months.  I never did make it to the specialist as I ended up at emergency 4 months before my appointment and having emergency gallbladder surgury by a general surgeon.  Apparently, I was so sick and aenemic it was operate or transfuse me.  My digestive issues have never quite recovered from that day.

I was going to bring this up with my new dr. to get a referral but wanted to deal with the neurological symptoms first.  I think my last dr couldn't deal with all the complexities of my symptoms so I am taking it one specialist at a time.  But I do know that most of the items on the no-no list do cause me problems.  Sure makes it a challenge if you are trying to eat healthy with lots of whole grains, veggies and fruit!

In October I was back in the ER with similar symptoms, severe abdominal pain, bloating and a feeling like there was a straight jacket sinched around my torso.  I felt like I could barely breathe and the pains would double me over so everyone at work freaked out and sent me off to the ER- yes I still went to work as the episode continued several days,  I put myself back on the crackers and gingerale diet and the abdominal discomfort stopped.  The ER visit turned up nothing - blood tests, ultrasound, xray.  I usually don't bother going now as it never seems to be of any help.

What are your ms like symptoms?  Just curious if you want to compare notes.  A

[tonyad]

  I was diagnosed w/ Gastro-paresis several years ago through Measuring the time it takes for your stomach to empty. A gastric-emptying study measures how long it takes for food to move through your stomach. There are several ways to measure stomach emptying. In the most common test, you eat food that contains a small amount of radioactive material. A scanner that detects the movement of the radioactive material is placed over your abdomen to monitor the rate at which food leaves your stomach.

   And yes, Acidophilus is good for everyone to take. Has all that "Good" Bacteria in it (like yogurt) that we tend to tear down either through unhealthy eating, antibiotics, and some meds.  
    Have you been to an actual Gastro doctor? And have they done testing?
Hope you get some definite answers soon.
Take Care,
~Tonya
  

[JenEpicFarms]

There are a couple of tests that they can do to check for Gastroparesis. The site I found had all that info on there too. Oh, and I'm thinking it might be a good plan to STOP bending your head down lady (before you wind up in an accidental headstand, tossing your cookies hither and yon :o)

Part of the reason I think I was having SO much trouble with bloating is because I am (er, WAS) on a high fiber diet for IBS. Apparently fiber is a ginormous NO-NO and roughage, fresh fruit and such being the absolute worst possible things you can eat. Leave it to me *sigh*. I'll ask the doc about it when I go to Mayo this month.

Considering the fact that I have been on meds with dire warnings about causing tumors and such, experimenting with a cracker and broth diet for a few days didn't seem like a really big deal you know? It might be a good idea for you to doublecheck with your doctor first though (experimenting on me is one thing; I don't want to get anybody else into trouble!)

Let me know what your answer is when you find out, if you don't mind, I'd love to know how everything worked out!

- Jen

[JenEpicFarms]

Thanks for the answer; and it probably was you (I just kind of zeroed in on the gastro word when my radar went off *grin*). I think it may have been domperidone that the FDA has not approved yet for use in the US (but in extreme cases allowances are made) not sure if it was that or another one. I was just so tickled that diet worked; it should keep me grinning for at least a day or two more :o)

I am definitely concerned about MS (Neuro gave me a Dx of possible MS and referred me to Mayo for more in-depth testing due to clear MRI). I have a laundry list of other symptoms, and am slowly running out of other things it could be. I guess things just happened to start with my tummy and go from there.

Ready for the punchline? I saw a GI at Mayo in January and he didn't have any insight. Patted me on the head, gave me some pills and told me to call back in a month (which I didn't because he was a Putz). Of course judging by what I read in his notes, it's more likely that he simply forgot to take his Ritalin that morning (he was SOOOOO not paying attention :o) Thanks again!

- Jen

[ack65]

Hi Jen,

I am going to check it out.  My list of gastric symptoms sounds very similar to yours.  I take Ranididine daily to cope with the reflux and "hicurps" (what a perfect discription).  When the nausea is really bad I take gravol and I refuse to bend my head over - even loading the dishwasher can be a challenge.  Of course when I bend my head down the room also spins and I have the sensation that I will topple over.  Thanks for finding this.  I have already modified my diet substaintially to deal with this and have also had MANY tests and a BIG FAT NOTHING diagnosis except GERD.  And that was because I told them I was having trouble swallowing and it felt like my food was crawling backe up.  I've done acidophilus in the past it helped somewhat.  A

[Celery47]

Hi Jen!  I imagine you might've heard gastroparesis pop up on this forum from me?  If there are other gastroparetic/possible-MSers out there, I would love to hear from you all!

Anyway, I'm sorry you've been feeling so sick :(  They haven't tested for gastroparesis yet?  Hmmm, well I would definitely ask to have that test done.  I've had gastroparesis for about five years, and the lifesaver for me has been domperidone, a prescription that I fill over the internet in Scotland.  I'm not sure if US doctors prescribe domperidone for anything besides gastroparesis... well, I definitely recommend asking about domperidone too!  Good news is that is has virtually no side-effects (as compared to compazine and reglan - ugh, just awful!).

As far as eating goes... I eat ice cream all the time :)  When it comes to blueberries - or basically any fruit or vegetable, actually (lettuce, apples, oranges, bell peppers, broccoli, etc...), just a serving can make me wicked sick, for up to about two days.  I get crazy lettuce cravings nowadays!  Haha, actually, my nutritionist told me to go ahead and eat as much chocolate as I want (so long as I was supplementing it with Boost).  This was during a phase when I was losing tons of weight, though - but, she seemed to think that chocolate was a much lesser evil for gastroparesis people than things like cabbage and oranges, and I agree.  Also, you can get reduced fat ice cream (yummm!).  It's one of my mainstays to keep the weight on, and while I think it makes me feel a little sicker than, say, white bread, it is so delicious that I enjoy it anyway :)

I hope you figure out what's wrong!  I'm glad the diet is helping, and I hope you can work things out to feel even better.  I was curious, are you also concerned about MS?  I would love to hear your story if that is the case.  

Oh, just a side-note: my gastroparesis symptoms are pretty much exclusively pain, early satiety, and nausea/vomiting.  I've never had much bloating or any reflux... but then, that's just me; I've heard from some other folks with gastroparesis who DO have those symptoms.  So, I'd say, definitely something to check out!  Good luck!