Anyone with either slow or fast stomach emptying please read...I'm so thoroughly confused, man

[Mitch5]

I am so beyond confused at the moment. Ok, about 6 weeks ago I was diagnosed with severe gastroparesis. Not just mild gastroparesis, but severe gastroparesis since the delay on the nuclear med emptying scan was significant and certainly classified as severe. Ok, cool, I have gastroparesis, well not cool, but at least it explains the constant nausea and bloating I experience. So as a result of this diagnosis which was made by a GI here where I locally live in a suburb in the Twin Cities, Minnesota and since I am only 50 mn from one of, if not, the best medical clinic in the entire world in Mayo Clinic Rochester I figured I wanted a Mayo gastro doc helping me with the gastroparesis. As a result, I booked an apt at Mayo, met a terrific doc down there, and she ordered extensive testing to look for a cause and of course confirm the gastroparesis. Well, as far as looking for a cause, one cannot be found. Blood tests all normal minus an IgA Deficiency which I already knew I have and have had since birth. However, she ordered a complete and total GI emptying scan that not only looked at the stomach, but the small and large intestines as well.

You could have blown me over with a feather whenever I was sitting in her office yesterday as she was reading my results of the study:

Impression: Minimally ACCELERATED gastic emptying. Small bowel transit time is within normal limits. Normal colonic transit time at 48 hours.

HUH?  How on earth do I now have rapid gastric emptying when just six weeks ago I had SEVERE delayed gastric emptying? I am so incredibly confused now! My doctor could not believe the result as well. She still thinks based on my symptoms something is wrong and she would think clinically it points to delayed gastric emptying yet this test at Mayo says no delay, the exact opposite, the stomach is emptying slightly too fast!

As a result she is ordering that horrible scope thingy called a Gastroduodenal Manometry where they insert the tubes and track things via endoscopy while you eat, etc. I will have this done in two weeks.

Until then I am scratching my head. What on earth could cause such different results? Could it be me? I literally do go back and forth from delayed to rapid gastric emptying? In only six weeks time?! Or is one of the tests wrong? How could Mayo be wrong? This is so strange! I would have thought there could be some variation in that maybe Mayo wouldn't see such a severe delayed emptying but STILL a delayed emptying. Not only was that NOT shown, but it showed a RAPID emptying! I have absolutely NO idea how it could go from one end to the other. It makes zero sense to me.

Has anyone had this happen to them or have you gone from delayed emptying to rapid emptying before? I am so lost here. I cannot with all that's in me figure this out.

Any thoughts?

[rose723]

I have both dumping syndrome and gastroparesis is are caused by having severe autonomic dysfunction. when the sympathetic nerves over react i get dumping syndrome when they under react i get gastroparesis. So any one suffering from both conditions it may be worth getting your autonomic nerves tested.

[Grider]

My test came back saying I empty super fast but when I am sick food is NOT passing at all, and I had to do the ER this week it hurt so bad. I think it is like a light bulb that flickers, on and off. but I never want to go through that pain again so I am trying to see how to keep my tummy happy. make sure I have BMs and eat much less at meals. If I feel full, going to liquids. UNTIL I get a DR to confirm this. MY Gastro guy said H pylori, but nothing else. MYSTERY diagnosis where are you?

[Mitch5]

CalGal, thanks a lot. I have never heard of this before. I am certainly open to it. Absolutely. I will look at the site you provided, thank you.

I haver been on Align, the probiotic my Mayo doc suggested, and I can hardly believe how this is helping me. It isn't necessarily helping the nausea but I am going to the bathroom way more than I ever have. I'm on day 4 and I notice a difference so in my mind no matter if I flirt back and forth from gastroparesis to dumping, it doesn't necessarily matter what is going on as long as I treat it holistically and find a way to stop this disorganized motility that is transpiring.

Thank you very much, I will check out the site! :-)

[CalGal]

Mitch, if you're open to some 'alternative' treatments you may want to consider trying visceral manipulation. It can work for a variety of conditions. It's not exactly alternative becaused it's based on osteopathic techniques, but western medicine considers anything outside of medication and surgery alternative.

I've used it for a couple of situations I had and it works.

I also work with it and have used it with a few people with mild-to-moderate gastroparesis with good results. It depends on what is 'found' upon palpation. You can check out the barralinstitute website if you're interested. They also have a link to practitioners in case you want to talk to someone and check out their training.

[Mitch5]

dixiemom: Glad to meet you, too. The medical community is so clueless when it comes to this condition. Mayo is Mayo so I know I am getting good care down there and my doctor is up to date on many alternative treatments which rocks. She was the one who told me to get on probiotics, try digestive enzymes and figure out my food intolerances. Most other western medicine docs would never suggest these things so I know it's unique I can connect with this Mayo doc but overall it amazes me how there is such little attention being focused on these motility disorders. Even my Mayo doc admitted that they are trying like crazy to research gastroparesis and dumping but the money is just not there like it is for other GI conditions. It's so sad and pathetic. She wasn't happy. She also was very upset over the removal of Zelnorm because she said the FDA entirely inappropriately removed this drug when it had no basis to do so and it was a wonderful med helping many gastroparesis patients. I hear you about this condition being so unpredictable with no set pattern. I absolutely agree with it being about mindset and determination too. Your state of mind rules so much in general but with a condtion like this it can only add or subtract the intensity of symptoms just based on mindset. Oh yes, you hit it when you said people who have never experienced this have no clue how horrible it truly is. I hear you completely. What bothers me is when I will hear someone say that I am lucky that I do not have something terminal and life threatening and "at least" it is a livable condition. Really? So it's normal to be nauseated all the time? And not be able to eat normally? Drives me crazy. This is a hugely life altering disease that affects every aspect of your life. You might not die from it but your quality of life can be quite miserable.

mercedes_baby_boo, I'm so sorry you are dealing with those ER visits. The good news for you is that I read typically if you know it's due to surgery that means it won't progress because while it probably is a permanent situation the damage is already done so what you experience now is pretty much what you are going to experience as the worst case scenario. Not that what you are experiencing now is pleasant, of course, but I think I read that if it's due to a surgery it will not progress. Is that right? I have no clue how I developed mine since a cause has not been found yet. Still a few tests left to go through to officially say no cause is found but it's looking like it will be termed idiopathic. I almost wish I knew of an obvious cause. I am so lost and confused given the weirdness with my situation in that 6 weeks ago I was found to have severe gastroparesis then presently I have mild dumping syndrome. This makes zero sense to me. I'm also not looking forward to this stomach/small intestine manometry where I have tubes in for 5/6 hours while I eat. This is going to be so unpleasant next Friday but I'll find a way to get through it.

[mercedes_baby_boo]

hi Mitch. I too have Gastroparesis. Mine is from me being a gastric bypass patient. So I know why I have it but of course there is no cure for it. I have the same symptoms you do. Bloating pain nausea... I take medications to treat the symptoms. I take pain meds. nausea meds. and Im also in a trial taking domperidone med for the gastroparesis. It is not FDA approved at this time and only can be obtained from one Dr in my state. At this time I cant say for sure what my outcome will be with my treatment but I know it is a lifetime disease and I have to take care of my self everyday being careful with what i eat and drink, When I get too bloated its rush and get tubed at the er. its not fun. but its all I can do. I wish you well. you are not alone.

[dixiemom]

OMG I can feel your pain, literally. I am also diagnosed with Gastroparesis. I have not had all the tests you have had just the emptying and Hida scan. Which my GI doctor made no big deal out of even though it was like winning the lottery for me after months of not knowing what the heck was wrong with me. The medical community is baffling to me, but I wont go there here lol  I also had a colonoscopy and the light down my throat one (sorry the term escapes me).
The only advice I can offer you at this time is that gastroparesis can be very intermittent to where you can have days, weeks, even months where you have very little to no symptoms. There are times that I think it has a lot to do with your mindset and determination, that's just my humble opinion. There really needs to be more research for this illness. People that have never experienced this have no clue how horrible it truly is. I have been taking prescription pain meds to get through the day and it has made my daily life more tolerable. I am NOT saying you should do this just sharing. I am also on a dosage of as needed anxiety medication, which helps me so much with the nervous/shaky feeling. It has really been a blessing for me.
I am so glad to meet you and will keep you in my thoughts and prayers that you will find answers. Keep us updated please.

[Mitch5]

Thanks Calgal. You're right about the holiday weekend and this is a confusing situation too. lol.

Well here's what the Mayo doc did say... she had me do one test that looked at the function of the upper stomach where it meets the esophagus to see if that stomach muscle/flap was opening and closing properly because if it wasn't that could also be causing issues. Had to drink some ensure along with some radioactive stuff through an IV and this test proved the upper stomach is working just fine. Totally negative result which she said means that I can CERTAINLY ingest liquids normally. I'm not sure WHY this test would conclude that I handle liquids properly but that's precisely what she said.

As far as symptoms changing... hmm... well I am still with the off and on extreme nausea and bloating but I was told that both gastroparesis and dumping can cause this.  However with dumping you can have frequent loose stools or diarrhea along with some feelings of nervousness and flushing, whereas gastroparesis is more about slower movement and constipation issues, as a rule that is. I have all of these symptoms off and on, too!

The only thing I can come up with is sometimes I can feel like when I eat the food goes through ok, other times it just sits there. So maybe I literally do have a stomach where at times it refuses to empty quickly enough, other times it goes into hyper mode and I am emptying too quickly? I really don't know. I am so lost on this. I just cannot believe things could drastically change so much in 6 weeks. But then again maybe they haven't changed and this is how I have always been, sliding to gastroparesis and dumping on any given day. Because the thing is, when I had the full motility study done at Mayo I felt really, really sick on that day too! So my symptoms were full force. I had to eat the egg sandwich and felt super bloated and nauseated after that. Then I had to eat lunch at 11 then take more scans and honest to God I had to choke down the other sandwich, I was SO FULL and sick, I really thought I was going to puke but I didn't. Eventually that got better, but yes I remember that while testing I certainly did not have a good day in the least so the test caught me in the middle of a full blown flare up but apparently it was a dumping flare!

[CalGal]

Mitch, it addition to it being a holiday weekend and people may not be around, it's also possible that others could be as baffled as you are.

The only thing I can think of is, if your gastroparesis were virally-induced, it's possible that it has spontaneously resolved. Have your symptoms significantly changed? Was the test using liquids only and do you find that liquids do pass more easily?

[Mitch5]

Anyone? I'm so seriously so lost on why this is happening if anyone remotely relates to this or has info I would ever so appreciate it.