Anyone with either slow or fast stomach emptying please read.. so confused!

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?

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Sportsfreak555,
Oh yes! Your story sounds very familiar. I began having problems in late 1999. Locally, I had many tests looking for the cause and eventually had a gastric emptying scan which diagnosed delayed emptying. The GI doctor at that time gave up on helping me so I saw another GI in the area who also ordered a GES, which again showed delayed. In 2001, I went to Mayo where they did another scan, this one showed only a slight delay so the doctor was skeptical that it was full blown GP but yet enough to be causing my problems.
After that time I had a few more scans over the years that showed either extreme delayed or no delay. Which was very confusing since I was still having all the nausea, vomiting and pain...but yet with the different results I was never sure what to think.
Then in Dec. 2008, I returned to Mayo where they did yet another scan which this time showed extremely rapid emptying! My GI there was also totally shocked at the change and just how rapid I was emptying. I asked him about it and he said that they were seeing more and more people who were having the two extremes. I asked if it was possible that I have been switching between the two extremes all these years and he said he felt it was highly possible. Which is yet another reason that the medications that they have tried would only work for a few weeks then stop...I was probably treating the wrong extreme after a few weeks.
Of course, knowing I switch is good to know because I don't feel as crazy now, but since the symptoms are the same it hasn't really made any difference in how I feel.
So, don't be surprised if the end result is that you find out you truely are switching back and forth.
Oh, I also had the awful Gastroduodenal manometry while at Mayo too...it is very unpleasant and trying to eat with that wire hanging out the side of your mouth is terrible. But, I still prefer it to the esophageal manometry/ph test where you have to have the tube down your nose for 24 hours! Ick!
Good luck with your test. Let us know how it turns out.
Judy

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Well, thank goodness I am not the only one. Although I have never had a rapid GES, I have had one that was normal, which totally baffled the surgeon. Of course, this was the GES that was to prove to the insurance company that I needed a gastric pacemaker, which blew that out of the water. They are going on symptoms now and not telling them about the normal GES. I have a question about the Gastroduonenal Manometry...what exactly is going on here and for how long? I may have to have it so I want to know from those who have had it.

Thanks

Teresa

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Judy,

Wow, thanks for your response. :-) I am so happy that we have this in common. This is really insane, isn't it? I cannot believe this. In looking back I certainly have flirted back and forth with symptoms of BOTH gastroparesis and dumping. As a rule, the nausea, bloating can be from both BUT forever when I now know I was getting dumping symptoms I also had the extreme nervousness, heart pounding, lightheaded feelings, some diarrhea along with the nausea and bloating (I had an episode yesterday at my nieces soccer game, matter of fact!) but I always thought the nervousness, heart pounding and lightheadedness were a result of feeling so sick to my stomach that I was personally creating it, not that it was physiologically happening to me due to dumping!

It makes so much sense how you said your past treatments have never totally helped you because since you are switching back and forth how on earth can a promotility med help you when you're in dumping mode? It can only make your symptoms worse or at the very least not help you at all!

Which leads me to wondering how you ARE treating this back and forth? Have your symptoms changed over time given the realization that you do have both? Also, what doc did you see at Mayo Rochester? I am seeing Dr. Foxx Orenstein who is really good. I really love her. She is so witty and sweet, and I feel like I can talk to her forever. I almost forget she is actually an MD at Mayo Rochester no less, because it's like we are two friends sitting there together. It's really cool. I literally think I am going to print out your words and show them to her when I see her in two weeks after the Gastroduodenal manometry. BTW what did that test show for you?

Man this is all such a strange thing. There is hardly any info on this anywhere but I hit a jackpot whenever you responded to my post. I don't feel so alone. Thanks. :-)

Michelle

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Teresa,
When they did my Gastrodudoenal manometry, they began by doing a regular EGD. I had had several EGD's done in the past but had always been sedated for it but since they were going to be doing the manometry too they didn't want to sedate me. That was the first miserable part for me. They couldn't get the scope in as far as they wanted and kept having to pull it out and start again. I did fine the first time they put it in but then the gagging started. It was awful. They tried several times before they thought they were in the right place. Then they started trying to get the wire in place...again problems...by that time I had about 10 people in the room trying to help, I was gagging uncontrollably, so they called the doctor and got permission to go ahead and sedate me.
The rest of the test wasn't painful but just uncomfortable. They hooked me up to a computer which measured the pulses of my stomach for the remainder of the day (I just laid in the hospital bed all day). At noon, they brought in lunch. I think it was baked chicken, mashed potatoes and some sort of vegetable. Anyway, they ask that I eat most of it...which was not easy to begin with because of the nausea but then you have this wire that hangs out of your mouth (hooked to the computer) and it goes down into your stomach. So, not only do you have to put the food in with this wire hanging out but also chew and swallow food even though you can feel the wire in your throat and it feels so weird. Then the rest of the day you again just lay while the food works it way through and the pulses continue to be measured.
The test was scheduled early in the morning like about 6:00 a.m and I was supposed to be done by about 4 p.m. but because they had so much trouble getting the wire in place my schedule was totally thrown off and I was actually there until about 6:30 that night.
I had the test done at Mayo in 2001, so they may have changed up how they do it now, and hopefully they go ahead and sedate people to begin with...I know that doesn't necessarily help give a true picture of what is happening since the sedation can effect the test results but I wouldn't want anyone to go through the EGD/wire placement without being sedated!
Judy

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Michelle,
I love Mayo and my experiences there. I live in Arkansas so traveling up there isn't that easy and I only go when I have too...otherwise I would be there more often. I also have a wonderful GI there. I see Dr. Locke. He is great. He sounds alot like your doctor. He is so easy to talk too and will sit and talk to me as long as I have questions. I never feel rushed or like anything I ask is stupid. He is also great about returning phone calls when I have to call from home, and works with my local pcp when he needs help.
It really does help to know that others are experiencing the same thing with the changing between the two extremes. I know that a couple of others on this site have found out recently that they have the same problem too. I think it may explain one reason that doctors have so much problem diagnosing and treating motility problems.
The manometry didn't show anything new when I had it done, but hopefully it will provide you some answers.
As far as how I'm treating my motility issues now... unfortunately, things haven't gone too well. For a long time I seemed to go through spells where I seemed to be improving and then suddenly I would get knocked down. Then last Dec. I started having the worst pain, nausea and vomiting ever. It kept getting worse until I ended up in April having to be put on TPN in order to get some nutrition. I couldn't eat at all orally. The TPN has helped a lot with the pain and my energy level and I can eat a few bites again now. However, I talked my doctor into cutting down on the TPN rate to see if I could handle a lower amount and hopefully wean back off of it and after one week, the pain is back, I am becoming very draggy, and my potassium levels have dropped again. I'm sure I will end up having to go back up to the higher rate.
I suspect that I am in a delayed stage again and it has just lasted for several months this time. Maybe if it switches back to the rapid, I will at least have the ability to put some food back in orally...even if I do have the pain and nausea.
You are so right though...the whole thing is CRAZY!
Well, I had better go. Let me know how things are going for you.
Judy

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I constently get conflicting results. One barium swallow showed extreme narrowing in the esophagus area and when I recently went to Temple University Medical Center, a barium swallow showed extreme narrowing at the bottom of the stomach, but no significant narrowing at the esophagus! This has occurred on many of my tests. It is totally frustrating figuring out which physician to stay with and which diagnosis to treat. At this point I want to just tell they all to get lost and just not go throgh any more painful procedures. And, when the physicians see you are being treated for depression (which is caused by all of these problems....that I never had before my stupid decision to have the nissen fundoplication in 2003.

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Thanks, Judy. I'm so sorry that you have hit a skid where you are having trouble eating foods. Did they ever find a cause in your case or is it considered idiopathic? I never vomit with mine which is so strange but it's true. I get to the last stage of nausea where I literally think I am going to vomit but somehow I don't, or haven't yet. I also get such severe bloating that I think my breathing goes more towards a chest type of breathing that this in itself causes nausea all the more. I find that laying down while focusing on deep breathing can sometimes stop the nausea. Man, this is such an awful condition and I am so confused over how on earth I could go from severe delayed emptying to mild dumping in 6 weeks time! I just don't get it. Isn't the nerve either paralyzed or in hyperdrive? It's so weird how it can switch back and forth. I haven't consulted with my internal medicine doctor since hitting Mayo so I think I'm going to shoot her an email tonight, fill her in on the findings and see what she has to say. I know this is not her speciality but she might give some insight on the situation nevertheless or maybe research it.

I am thinking that alternative medicine might be the way to go because I can't imagine how regular conventional drugs could help this if I'm back and forth. My Mayo doc wanted me to try a drug that they give for myesthenia gravis sp? but she said I should hold off until the motility study is done. I am now on probiotics (day 2) and amazingly I feel like I am less constipated than I have been in quite some time. I don't know if it's the dumping or the probiotics (maybe both?) causing this since maybe the probiotics are trying to regulate my digestive system somehow. Hmm.

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I have heard from many other people with gastroparesis who have said that they have had conflicting results from their gastric emptying studies. I have also noticed that some people say that they have periods where their stomach seems to work better than others. I have come to consider the GES as a small slice of the whole picture of the stomach's activity that can provide a piece to the entire puzzle but not its whole picture. However, I am not a medical professional, and this is just my simple opinion. I know that the doctor who diagnosed me with gastroparesis thought that much earlier in my life when I was seeing other doctors that I was misdiagnosed with just acid reflux even though I had a normal GES at the time as he thought that I probably had gastroparesis even then based on my description of my symptoms and reactions to medications at that time. Soon after his diagnosis, I had a GES that showed no emptying of the eaten eggs after four hours. It seems that the workings of the stomach are just too complex to be completely understood through one GES although the test might be helpful as long as it is taken into consideration with other factors.

I have also noticed that sometimes it seems that I will also go through periods of slower emptying and then when eating a certain food, everything will move out of me very quickly. This has been since a transplant, and since my gastroparesis has improved some since the surgery. I have not had a GES since this surgery. I wish I too understood better how this all works, but at times it seems that the only thing predictable about gastroparesis is how unpredictable it can be!

I am glad that the probiotics are helping you. I do tube feedings at night, and the formula I seemed to tolerate the best had some Benefiber in it and some probiotics. I will be sure to keep you in my thoughts and prayers, and I hope that you can get some more definitive answers soon. Best of wishes.

Warm regards,
Bobbiejo

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Michelle,
I can tell you one thing that helped me the most with my GP was Anxiety Medication. It took the edge off of my constant worrying of when I was going to get sick next. That also helped keep my heart from pounding which in turn rumbles your stomach and can make you more nausea. Good luck...It’s a long road ahead but we are all here for you!

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Hi all,
I just want to echo the sentiment that our GI systems can be very different at various times. Before I was dx with Systemic Sclerosis or MS, I had Malabsorption with chronic diarrhea - like at least 10x per night - minimum! It didn't matter how much I ate - I couldn't gain weight. I ate 12" subs, 2 burgers, you name it - and it would go straight through. Now I have GP, and I can tell that it changes at times. I'm on narcotics, so I'm not going to have any extreme dumping anymore, but I do notice big differences with how much I "bring back up" while sleeping and aspirate, and how much nausea and bloating I get. I know that the GI system is the birth place for many autoimmune diseases. I've done a great deal of research in this area and if I start writing, I won't stop, but let's just say, it isn't a simple system. The autonomic nervous system gets involved too, which is what causes the sudden tachycardia and rapid pulse, sweating etc. I have that reaction all the time and hate it! I don't feel like my body can regulate anything! I'll quit here - I've been feeling very down and alone lately and I don't want to be negative.

Blessings to everybody,
Jan

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Thanks, everyone, for the responses:

Bobbiejo,
I think you are so right on about the stomach being way too complex to figure out. I also think you are very right on about how it could depend on what your food intake is as far as determining how you stomach might respond. Not just low fat versus high fat either, it could be way more detailed in that there could be some food intolerances going on as well for a person and this could result in a stomach that is hyper, normal, or even hypo depending on how you will react to the type of food you are ingesting. It's a very individual process and might explain why there are varying degrees of symptoms in each of us. What one can tolerate for foods, another person cannot. Which is why I believe a naturopath or indian medicine might help me a little better than western medicine in that I think I have deeper causes for why my stomach might be all over the place and finding the food intolerances, removing them, might be the key to controlling this for me personally.

Shaya613,
Oh yeah, I have a huge phobia right now about where I go and the fear of if I will get sick or not. It's really a smothering type of fear. I was 45 mn away at my nieces soccer game this past Saturday and she had two games about an hour apart. The first game I did just fine. The second game I made the mistake of drinking some coffee with a little bit of cream in it (big mistake) because I started bloating up terribly around the second half of the second game and once the game was completed I was so scared I was going to get really sick because the nausea was full force. And that's the thing.. sometimes when you feel "normal" and you are out and about you let loose a little which is what I did with the coffee with cream. I did that and paid dearly for it. Severe nausea and heart pounding then the depression sets in when you realize once again you cannot live life as normally as the person next to you who doesn't have to worry about these things. :-(

Jan,
I am very intrigued by your words on how complex the GI system is and how it can control just about everything in your entire body if it breaks down. I firmly believe this is true. I would love to talk to you about this further if you want to discuss right here on the board or via pms. I am a strong believer that even diseases that essentially have nothing to do with the GI system can develop BECAUSE of your gut breaking down and being weak. I truly believe this.

Anyway, thanks everyone for your kind thoughts. I am really happy I found this place. It's awesome. Thanks.

Michelle

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Hi,
All with gastroparesis should Google "Carbon Monoxide Reverses Diabetic Gastric Problem in Mice". This article details a Mayo Clinic study that shows how a lack of Carbon Monoxide production from the lack of heme oxygenase-1 leads to a loss of Kit, a marker for interstitial cells of Cajal, which are involved with digestive muscle contractions. I am wondering how one could naturally increase heme oxygenase. Also, please look at the following excerpt from a gastroparesis article: "Intake of vitamin B12, vitamin C, folate, thiamine, niacin, magnesium, phosphorus, and zinc were significantly less than controls. Vitamin A intake was above the RDA and not different from that of controls. Prolonged t1/2 of solids correlated with diminished intake of protein, iron, niacin, and potassium. They correlated inversely with serum albumin in patients with idiopathic gastroparesis. Conclusion: Although eating less, patients with IG do not consistently alter the proportion of fat, carbohydrate, and protein in their diets. Because their diet is markedly deficient in a number of essential vitamins and minerals, dietary evaluation and counseling is suggested for all patients with idiopathic gastroparesis.
I don't have gastroparesis, but my sister-in-law does and I was researching on her behalf....

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