Gastroparesis- Need Opinions

[ana_22]

i have GI issues.

At the start (a year ago) it was very hard to eat anything, no appetite, aversion to food and food smells, nausea, churning, felt like heaps of air in my tummy.

It got worse at the start of the year. i felt full eating very little, it was hard to get food down, palps after eating, sometimes full reactions such as sweating bp rises ligt sensitivity. biggest problem though i felt full after eating small amount. it has improved a little after starting florinef but it is still not one of my favourite things to do!

anyway i had a gastric emtying scan that turned out normal. i dont know the exact figures though. the dr has suggested a mammotry study as this can diagnos gp too.

im not sure whether to go for it. i know there is something wrong with the GI system but the thing is i have a bowel movement every morning (& as gross as this is to share ... its ussually a pretty big BMlike everything i ate the day before comes out)

so can it be GP if i have regular BM movemtns? or should i be looking at other things?

[Janey]

Hi Ana,

First of all, I have "episodes" of gastroparesis, associated with dysautonomia, which, for a long time, didn't come up on a gastric emptying study. When it's bad, it's really bad, but when it's not, I still get lots of nausea and churning symptoms (like you described) but the food actually IS passing through rather than stuck.

I've been told this is either to do with blood pooling in my abdomen, or blood moving away from my abdomen, but ALSO to do with Ehlers Danlos Syndrome. I don't know whether you've been tested for EDS, but there's a high incidence of the genetic syndrome EDS in POTS patients and those with dysautonomia. The stomach and intestinal problems associated with EDS are more common than GP and dysmotility but produce very similar symptoms.

For eg, I have very "stretchy" intestines. In the same way that my blood vessels dilate too much and cause pooling, my intestines stretch too much and cause diverticuli in my bowel. This causes symptoms like nausea, pain, bloating, flatus etc.. All the same symptoms but just a different cause.

Have you ever been tested for EDS?

Janey

[juliegee]

Ana,

You probably don't have gastroparesis, but you may have a dysmotility of the small bowel. This can most certainly occur with regular BM's. When my symptoms were at my worst, mine were huge too- like no nutrient absorption occurs at all.

The antroduodenal manometry is a very good test to DX motility problems in your GI tract, BUT I wonder if you can ask your GI if you can just try a GI prokinetic and see if it helps. My son did the manometry at Hopkins and it looked quite uncomfortable, but certainly bearable. It just seems to make sense in terms of your comfort and the expense to just treat you as IF you did have a dysmotility and see how you respond Only very seasoned GI's seem to us this approach.

During my son's manometry, (under general anesthesia) they placed a tube with multiple probes down his nose into his esophagus, stomach, and small bowel. There were probes at each of these locations. The probes measured the pressures over a 24 hour period. He had to eat several big meals- hard with a tube there- and he was given several GI prokinetics to check which worked best for him. At Hopkins, they also did a TTT during the manometry to check and see whether or not the autonomic dysfunction is causing the GI woes. It was. Mack fainted and barfed at the same time- awful!

The GI's there described the GI tract as a squeeze pop. (Remember those popsicles you squeezed to get out of the plastic wrapper.) Well, if your esophagus, stomach or small bowel isn't squeezing in perfect harmony with the rest of the GI tract, the symptoms you describe can occur. Food can actually move in the OPPOSITE direction at some points, making you feel quite nauseous. Parts of the GI tract can be quite slow & others quite fast. The disharmony, most likely caused by nerve damage (the manometry can tell this too), has the exact same symptoms as gastroparesis and is treated the exact same way- even though the slow spot may not be the stomach.

Best of luck to you. I remember being horrified when Mack's GES was normal. He was so sick, he could barely eat anything at that point. I can imagine how frustrated you must feel. Let us know what you find out.

Julie

[Janey]

Ana,

You probably don't have gastroparesis, but you may have a dysmotility of the small bowel. This can most certainly occur with regular BM's. When my symptoms were at my worst, mine were huge too- like no nutrient absorption occurs at all.

The antroduodenal manometry is a very good test to DX motility problems in your GI tract, BUT I wonder if you can ask your GI if you can just try a GI prokinetic and see if it helps. My son did the manometry at Hopkins and it looked quite uncomfortable, but certainly bearable. It just seems to make sense in terms of your comfort and the expense to just treat you as IF you did have a dysmotility and see how you respond Only very seasoned GI's seem to us this approach.

During my son's manometry, (under general anesthesia) they placed a tube with multiple probes down his nose into his esophagus, stomach, and small bowel. There were probes at each of these locations. The probes measured the pressures over a 24 hour period. He had to eat several big meals- hard with a tube there- and he was given several GI prokinetics to check which worked best for him. At Hopkins, they also did a TTT during the manometry to check and see whether or not the autonomic dysfunction is causing the GI woes. It was. Mack fainted and barfed at the same time- awful!

The GI's there described the GI tract as a squeeze pop. (Remember those popsicles you squeezed to get out of the plastic wrapper. Well, if your esophagus, stomach or small bowel isn't squeezing in perfect harmony with the rest of the GI tract, the symptoms you describe can occur. Food can actually move in the OPPOSITE direction at some points, making you feel quite nauseous. Parts of the GI tract can be quite slow & others quite fast. The disharmony, most likely caused by nerve damage (the manometry can tell this too), has the exact same symptoms as gastroparesis and is treated the exact same way- even though the slow spot may not be the stomach.

Best of luck to you. I remember being horrified when Mack's GES was normal. He was so sick, he could barely eat anything at that point. I can imagine how frustrated you must feel. Let us know what you find out.

Julie

Hi Julie, this has made me think about my own bowel diagnosis! Would a barium follow through and xray diagnose small bowel dysmotility? Or can it only be found through a manometry? If it could, I'd be really pleased, and I'd like to have one!

Janey

[ana_22]

Thanks for your replies

macks mom- this makes sense as i also have SIBO...& i know this can be caused by dysmotility of the small bowel. is there a way to check dysmotility of the small bowel?

everything you say makes sense but i dout ill remember every thing at my next GI appt (in a month) i might just print out your reply and show it to my dr!!!

thanks

[juliegee]

Thanks for your replies

macks mom- this makes sense as i also have SIBO...& i know this can be caused by dysmotility of the small bowel. is there a way to check dysmotility of the small bowel?

everything you say makes sense but i dout ill remember every thing at my next GI appt (in a month) i might just print out your reply and show it to my dr!!!

thanks

Yes, yes, yes SIBO's are a part of small bowel dysmotility. My son gets them too. Xifaxcin is what Mack uses when it's acute. He (and I) take Culturelle, a probiotic, to keep SIBO's at bay.

The manometry, specifically the antroduodenal manometry is what can definitively check for small bowel dysmotiltiy. BUT, I think your symptoms are telling enough. A really good GI should just treat you. My son uses ERY-Ped 1/2 to 3/4 tsp 15 minutes before meals. It turns the nausea into hunger- really works. I'd try to get a prescription and see if it helps. It's just a tiny dose of liquid erythromycin- very benign, unless you're allergic. Make sure you're also treating your GERD if you have that. Zofran is great for daytime nausea & phenergan is great for evening nausea.

Best of luck to you. lease let us know what you find out.

Julie

[juliegee]

Hi Julie, this has made me think about my own bowel diagnosis! Would a barium follow through and xray diagnose small bowel dysmotility? Or can it only be found through a manometry? If it could, I'd be really pleased, and I'd like to have one!

Janey

Hi Janey-

No, I don't think so. The barium follow-through & x-ray would help a GI figure out IF food was able to move through and IF it was moving at an appropriate speed. Important info, but a much more rudimentary test. The antroduodenal manometry is quite sophisticated. After 24 hours, there are yards and yards of tapes (like from an ECG) that must be analyzed. They can show where the problem is and if it is caused by nerve or muscle damage. With dysautonomia, most of us have nerve damage.

I still contend that a good GI could just give you a trial of a GI prokinetic, just as telling & much less fuss and expense for you :-)

Best of luck!

Julie

[Rene S.]

i have GI issues.

At the start (a year ago) it was very hard to eat anything, no appetite, aversion to food and food smells, nausea, churning, felt like heaps of air in my tummy.

It got worse at the start of the year. i felt full eating very little, it was hard to get food down, palps after eating, sometimes full reactions such as sweating bp rises ligt sensitivity. biggest problem though i felt full after eating small amount. it has improved a little after starting florinef but it is still not one of my favourite things to do!

anyway i had a gastric emtying scan that turned out normal. i dont know the exact figures though. the dr has suggested a mammotry study as this can diagnos gp too.

im not sure whether to go for it. i know there is something wrong with the GI system but the thing is i have a bowel movement every morning (& as gross as this is to share ... its ussually a pretty big BMlike everything i ate the day before comes out)

so can it be GP if i have regular BM movemtns? or should i be looking at other things?

Wow I could have written your post. My symptoms started a year ago as well. As a former person who had to watch her weight this is so different. I have no desire to ever eat. Smell of food make me sick, I get full on a few bites and I don't even enjoy eating. I drink lots of Ensure and am trying to put the lbs back on and it's been a struggle.

I wish I could tell you I found a magic pill but have not. My gastric scan showed severe gastroparesis. My GI dr didn't wat me on the Reglan on the other drugs since he knows how sensitive I am to meds. I'm also allergic to compazine and he thought that might be a problem.

I have kept my bowel movements regular by taking magnesium every night. Last night I forgot and I haven't gone at all today which will be a major struggle tomorrow. However, I also have IBS.

Perhaps another scan is in order? You have all of the symptoms of GP.

I wish you well and try some of the ensures. The strawberry and Butter pecan aren't bad. Make sure you get the ones with the extra calories. And try to stick to the brand. My daughters got me the generic and it was too gross for words.

Oh, soft foods work best. Yogurt, mashed bananas, soft cheeses small pieces of chicken. Nuts can aggravate as well as raw vegetables.

Rene