Gastroparesis Blues

[dblaisde]

I've been diagnosed by Dr. Rungsun Rerknimitr that I have Gastroparesis (the diagnosis was simple: didn't eat for 7 hours, then a tube into the stomach revealed lots of undigested food and an irritated stomach lining). His treatment prescription, made through a drug post op haze (which I went back to clarify) seems to be to simply "eat smaller meals" and walk 40 minutes after each meal, which I've been doing religiously (despite the heat) for 2 months and am still in pain and nausea most of the time. I've also tried meds like Domperidone and Erthythromycin with no help.

And I've also gotten sicker and sicker and sicker, thanks to the prohibitions against fruit and vegetables (my bellweather mouth infections have started again (no fresh fruit)) and in general I feel like regurgitated pad thai. I am not a happy camper, and am considering such experimental therapies as a digestive pacemaker and duodenum surgery. Not nice to get old (I'm 69).

Are there any experts in this field I might consult as to effective treatment?

thanks in advance.

Edited April 29, 2016 by dblaisde

[Sheryl]

There are, but not in Thailand as these are very new therapies. The first digestive pacemaker surgery in Asia was done only 2 years ago, in Hong Kong. If you want to pursue options in Asia, the Chinese University of Hong Kong is where to go and if you google it + gastroparesis you'll find the doctors names.

Depending on where you are from, returning to your home country might also be an option.

Aside from seeking treatment outside Thailand, the other thing you could try is acupuncture which apparently helps some people. But it needs to be done by someone familiar with the disorder or at least understanding that the vagal nerve is involved and able to target it. Could try the Chinese Medicine clinic at St Louis hospital.

I assume you are not taking any opiods or othet drugs that might be causing thid?

[dblaisde]

There are, but not in Thailand as these are very new therapies. The first digestive pacemaker surgery in Asia was done only 2 years ago, in Hong Kong. If you want to pursue options in Asia, the Chinese University of Hong Kong is where to go and if you google it + gastroparesis you'll find the doctors names.

Depending on where you are from, returning to your home country might also be an option.

Aside from seeking treatment outside Thailand, the other thing you could try is acupuncture which apparently helps some people. But it needs to be done by someone familiar with the disorder or at least understanding that the vagal nerve is involved and able to target it. Could try the Chinese Medicine clinic at St Louis hospital.

I assume you are not taking any opiods or othet drugs that might be causing thid?

I can travel, so suggestions out of SEA are welcome. I live in BKK but thought of returning to the US to explore solutions not available here. I wouldn't know where to start as far as doctors who are knowledgeable and experienced with new treatments.

In answer to your question, I was taking a tramadol, 50mg/day for a long time due to the pain of sleeping on a string of shoulder fractures due to my osteopororsis. I talked to Dr Rungsun about this and he said it was permissible to take Tramadol (cycling with Paracetamol and other OTC pain killers) to mitigate gastorparesis pain (the bellyache and nausea), and that he said Tramadol slowed mainly the lower abdomenon (the intestines), not the stomach so much.

I realize it's not a great idea but it's the only drug I have that brings me some relief so I can at least think to work on the problem

[dblaisde]

Just an addendum. I knocked off the Tramadol for a month to see if it would improve things but it didn't. I exercised more and that seemed to help, at little bit anyway. Unfortunately (and the heat doesn't help) I lead a pretty bed/hammock ridden life in Thailand and I'm sure that doesn't help. I've been leading this semi-sedentary life for at least 5 years here. The only thing that gets my posterior moving is walking or hiking. If I lived in a temperate climate with half dozen hiking trails out the back (say rural New Hampshire in the US), I'd be hiking half the time and perhaps a lot better off.

[Sheryl]

Do you have Medicare or other health coverage in the US? If so I'll see what I can find out re treatment there.

[johnatong]

Just an addendum. I knocked off the Tramadol for a month to see if it would improve things but it didn't. I exercised more and that seemed to help, at little bit anyway. Unfortunately (and the heat doesn't help) I lead a pretty bed/hammock ridden life in Thailand and I'm sure that doesn't help. I've been leading this semi-sedentary life for at least 5 years here. The only thing that gets my posterior moving is walking or hiking. If I lived in a temperate climate with half dozen hiking trails out the back (say rural New Hampshire in the US), I'd be hiking half the time and perhaps a lot better off.

For how long did you persevere with the Domperidone and Erthythromycin?

Have you tried a pureed diet ?

You might also consider taking a multi-vitamin supplement (available from most pharmacies)

I agree that if you wish to explore the possibility of a high tech solution to the problem you will have to seek that outside Thailand. Within easy traveling distance you should check what Hong Kong or Singapore can offer.

[VBF]

Just an addendum. I knocked off the Tramadol for a month to see if it would improve things but it didn't. I exercised more and that seemed to help, at little bit anyway. Unfortunately (and the heat doesn't help) I lead a pretty bed/hammock ridden life in Thailand and I'm sure that doesn't help. I've been leading this semi-sedentary life for at least 5 years here. The only thing that gets my posterior moving is walking or hiking. If I lived in a temperate climate with half dozen hiking trails out the back (say rural New Hampshire in the US), I'd be hiking half the time and perhaps a lot better off.

I'm absolutely no expert but have you somewhere you could do some gentle swimming? Maybe a gym or even a hotel that allows outsiders to pay a small fee to swim.

Like you I love to walk but BKK in the hot season wouldn't be my choice of venue either!

Good luck.

Edited April 29, 2016 by VBF

[dblaisde]

Do you have Medicare or other health coverage in the US? If so I'll see what I can find out re treatment there.

Yes, I *do* have Medicare (parts A and B, though no "supplemental").

I realized I was underestimating my physical vitality in my writeup yesterday. Before the stomach problems arrived, I made it a point to take a vigorous walk for an hour over the Rama 9 bridge, around the park and few times and back. In a trip to Ko Chang Noi of a month ago I spent hours a day going up and back the trails (you can get away with it there: lots of shade and a breeze), and felt pretty good. I'm tall and lean and was always in reasonable shape, even taking to walking the hotel stairs when the outside became too oppressive. This was all before setbacks with broken bones which slowed me down, and seeming allergies to Thai food which put me on my back for days at a time.

Somehow I'm going to get an hour of *serious* walking in here, despite the heat (the doc told me my 40 minute post postprandial walks are *not* to produce any exercise, just for giggling my food southward). I think somehow I do better if my body's tuned up a bit.

Another thing you may be interested in: there's a guy on Reddit.com/gastroparesis who says he manages food by drinking a few bottles of soda water with every meal, though it has to be one of the more powerful versions (Chang's is much more gassy than Singh for instance). It all sounds like nuts, I know, but I've downed a few meals yesterday which would have normally done me in, with no ill effects using Chang Soda Water. Time will tell. (I looked and there's no research support for carbonated water).

PS: Thanks for your help with the States. It would be good to have "a point of entry" into that medical labyrinth.

Edited April 30, 2016 by dblaisde

[Sheryl]

In the US:

Dr. Richard McCallum

Or

Dr. Irene Saroseik

Texas Tech University Health Sciences Center

4801 Alberta Ave Ste 101
El Paso, TX 79905
(915) 215-5200

The gastric stimulator is useful mainly foir nausea due to gastroparesis and will not due much for pain. If the problem is due to vagal nerve damage, pyloroplasty may help. Injections of botox are sometimes used first to relax the pyloric sphincter as a temporary measure to help determine whether pyloroplasty is likely to help.

[Sheryl]

P.S. Article by the above (who later got a grant to study treatments for gastroparesis). Includes an email contact

http://www.ncbi.nlm.nih.gov/pubmed/25667030

[johnatong]

A review of the treatment options is in the link (sorry but it is somewhat technical)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954884/

Clearly your best option is to spend time identifying a gastroenterolongist/ surgeon who has a specific interest in the problem.

Edit

You may find this link which identifies Drs associated with the Mayo Clinic who have been actively involved in researching gastroparesis helpful.

If you click on the names the doctors profile and location can be seen

http://www.mayoclinic.org/diseases-conditions/gastroparesis/care-at-mayo-clinic/research/con-20023971

Edited May 1, 2016 by johnatong

[dblaisde]

Ok Sheryl. Thanks again for the work. Glad you're on my team. The newness of this has thrown me for a loop. I'm not even sure I believe the diagnosis yet, or at least its permanent nature. I suppose I'm in "the denial stage". So be it. Right now I'm having enough problems just getting adequate nutrition. My eyes have starting seeing spots and going out of focus and I'm weak as a kitten. I nearly got run over yesterday by a taxi cab. I go into Bumrungrad tomorrow and hopefully they'll have some idea what's going on. I certainly don't. Anyway, I expect I'll muddle through.

Again, thanks for all the time you've taken. If I can't figure things out here, I've got some options when I hit the States.

cheers,

Doug

[Sheryl]

good that you are going to the hospital. As a temporary measure they may need to put in a feeding tube.

[dblaisde]

good that you are going to the hospital. As a temporary measure they may need to put in a feeding tube.

Minor feedback.

Bumrungrad Gastro dept gave me every test under the sun for a total of $900. My general internist there (who I was seeing for other reasons) couldn't believe the over testing of the gastro dept.

Doctor summary: I process a barium meal in the alotted time so I have no gastroparesis, despite Dr Rungsun showing me pictures of food in my stomach after 7 hours and inflammation of the stomach lining. Apparently my takeaway is supposed to be "find a good barium restaurant" but my real takeaway is don't go to Bumrungrad for Gastro. It's absolutely the most incompetent hospital dept. I've seen anywhere in Thailand. Both times the doctor was over an hour late.

I've been dragged in several times to see the wrong doctor by the nurses too. "You don't seem to be Mr Chuppawat", the doctor says, and the nurse just giggles and sends me back to my seat (and you've already been waiting an hour and a half because the doctor I'm supposed to see didn't show). Behind reception is Sanuk time (Thai Happy Hour), laughing, joking and generally ignoring the patients. I felt like leaving a stink bomb after my last visit, but what they really need are smelling salts and a good beating!

Edited May 5, 2016 by dblaisde

[Sheryl]

Sorry to hear all that. But where exactly does it leave you? Doesn't sound like they came up with an alternative diagnosis. So as I understand it:

• your symptoms are nausea (?and vomiting?) and pain after eating
• gastroscopy ruled out any masses but found food residual 7 hours after last meal
• barium swallow however showed normal food swallowing

The gold standard diagnostic test for gastroparesis is something called gastric emptying scintigraphy. It involves eating a meal that includes a small amount of radioactive isotope which can be traced by an external camera. They then measure gastric emptying hourly for 4 hours. If at 4 hours more than 10% is still in the stomach, the gastroparesis diagnosis is confirmed.

They can do this test over at Chulalongkhorn and in fact Chula has a whole unit dedicated to research on GI Motility disorders. I suggest you try to consult Dr. Sutep Gonlachanvit who is the head of that unit, and has published on the subject of gastric emptying scintigraphy. Two options for seeing him:

easiest: he has hours at Samitivej Hopsital once a week on Sundays

https://www.samitivejhospitals.com/en/doctors/sutep-gonlachanvit/

The downside to this is that I am not sure this test, if he thinks it indicated, can be done at Samitivej - but if not he could probably arrange to have you come to Chula for it

harder but also less expensive: the Chulalongkhorn University "after hours" clinic - you have to go down there in person to make the appointment. I am not certain he sees patients there but expect he would, most of the Chula Profs do. 13th floor of the main building, clinic starts at 4 PM but nurses may be there and able to do appointments by 3-3:30. Register downstairs first to get a patient number. It's all in Thai until you meet the doctor so if you don't speak basic Thai, bring a Thai speaker along to help navigate.

Get complete records from Bumrungrad and wherever you saw Prof. Rungsun to bring with you, important.

If gastroparesis ends up excluded then obviously need to search for other causes, but start with this.

[dblaisde]

>The gold standard diagnostic test for gastroparesis is something called gastric emptying scintigraphy. It involves eating a meal that includes a small amount of radioactive isotope which can be traced by an external camera. They then measure gastric emptying hourly for 4 hours. If at 4 hours more than 10% is still in the stomach, the gastroparesis diagnosis is confirmed.

Hi Sheryl,

Again, thanks for the info. You're one in a million. As regards the "gold standard test", isn't that what I already took at Bumrungrad? They gave me cups of a thick milkish solution, had me strapped down to an x-ray machine that could take you standing up and then tilt you over flat. The machine also manipulated my body in space with the goal of coating my stomach with the milky liquid (presumably barium or somesuch for the xrays they're eventually took). I was asked to roll over on my stomach a bunch of times over the course of 2 hours (or so), and often had these milky feedings. The xrays were taken a intervals of perhaps 15 minutes. usually one of the stomach face up, and one turned over. The doctor showed me the results of this test, which were a series of pictures with time stamps (or supposed to be anyway, only a few of the times were visible), of this white globby shape of my stomach and the gradual change in the location of the "whiteness" concentration as (presumably again) it moved downstream to my lower stomach, then my duodenum, then my small intestine (so the Dr described it). This was the test which proved to him I presently had no gastroparesis. I had brought the pictures that Dr Rungsun took showing food in my stomach after 7 hours without eating, and reddish areas labelled by stomach locations with the comments "inflamation".

I'd *like* to attach a few of these "findings"/pictures so you could understand what I'm talking about. Unfortunately, the USB link between my phone and computer (MTP failure Linux vs Android) stopped working. I'm trying to get it fixed and when I do I'll post up the pics here.

But....the upshot is that the test you describe (in the context of Chucka...) seems to be the "gold standard" you describe that they gave me at Bumrungrad (a substantial part of my $900 lab bill so it makes sense that way since you describe it as expensive.)

.........

Where does it all leave me you ask? Well, the good news is that my symptoms seem to be ebbing somewhat, given some successful adaptations I've made both in lifestyle and diet. All tentative of course. One is to chew my food microscopically small before swallowing, and to swallow (this may be voodoo) this mush with a swig of Chang Soda Water (stronger fizz than the standard Singh). I sometimes take walks after eating, sometimes not, but instead of the snail senior citizen demented shuffle I've been advised to take, I frequently do the opposite: the Alpine Climber attack mode for a half hour or an hour if the weather permits. I feel stronger after this, and it may be one thing among several that mitigate my symptoms. And there's nothing to be lost by exercise even if I'm up the wrong tree with its relation to gastroparesis.

As far as other causes you mention, I have to think (and *believe* after paying for it all) that the extensive testing has eliminated their possibility.

One NOT tested for is a psychogenic cause. I suffer from OCD ("intrusive thoughts") which does cause physical stress, such as muscle tension often severely, and including those muscles around the gut. I once was diagnosed with pyschogenic Diverticulitis in my youth because of uncontrollable stressful thoughts. I've discovered NAC (the treatment for Paracetamol ODs) as an off label treatment of OCD in the past few years. It diminishes both the frequency of thought and one's intellect (sadly), though not permanently. If I forget to take or deliberately *don't* take it (as I did for a month about a month ago, since it's rough on the stomach lining and I wanted to eliminate all possible dietary causes of gastroparesis), the intrusive thoughts came back with a vengenance and my gastroparesis got much worse. I soldiered on for awhile however, and suffered proportionately. When I decided to start taking the NAC again, the gastroparesis (or the symptoms of pain, bloating, nausea and lethargy) eased remarkably over the course of a day or two and stayed that way. So these problems are partly psychogenic in my case. Another possible cause is the SSRI medicine (Lexapro) I've been religiously over the last 20 years. Apparently that's a new risk they've identified for SSRIs. Since I'd rather die than suffer chronic depression or OCD, Lexapro and NAC are permanent fixtures in the medical toy box. It's also a risk factor for osteoporoiss, which I have.

Anyway, you're an angel, darling! though I shouldn't talk like this on a public forum, and I thank you for it.

Edited May 6, 2016 by dblaisde

[Sheryl]

The test you had at Bumrungrad was a barium swallow, not the same thing.

But as long as other possible causes (gallbladder disease, pancreas) have been eliminated and you are feeling better may not be so important. Should you get worse and need to consider gastric stimulation or pyloroplasty, anyplace doing this would first do the test I mentioned.

[camble]

I'd been experiencing upper abdominal pain and vomiting after meals for the past 4 years. Sushi, fresh vegetables, yogurt, and cottage cheese were they only foods that never made me sick. Two months ago, I was throwing up blood after drinking some grapefruit juice and took an ambulance to Bangkok Hospital. The next day they gave me a total gastrectomy. Now my stomach problems are over. I can't say enough about the wonderful care I received from my 12 day stay in this hospital.

[johnatong]

I'd been experiencing upper abdominal pain and vomiting after meals for the past 4 years. Sushi, fresh vegetables, yogurt, and cottage cheese were they only foods that never made me sick. Two months ago, I was throwing up blood after drinking some grapefruit juice and took an ambulance to Bangkok Hospital. The next day they gave me a total gastrectomy. Now my stomach problems are over. I can't say enough about the wonderful care I received from my 12 day stay in this hospital.

Was the reason for the Gastrectomy explained ?

[camble]

I'd been experiencing upper abdominal pain and vomiting after meals for the past 4 years. Sushi, fresh vegetables, yogurt, and cottage cheese were they only foods that never made me sick. Two months ago, I was throwing up blood after drinking some grapefruit juice and took an ambulance to Bangkok Hospital. The next day they gave me a total gastrectomy. Now my stomach problems are over. I can't say enough about the wonderful care I received from my 12 day stay in this hospital.

Was the reason for the Gastrectomy explained ?

Severe active hemorrhagic gastritis, both resection ends with acute inflammation and hemorrhage. Omentum and 15 lymph nodes with congestion and hemorrhage.

[johnatong]

I'd been experiencing upper abdominal pain and vomiting after meals for the past 4 years. Sushi, fresh vegetables, yogurt, and cottage cheese were they only foods that never made me sick. Two months ago, I was throwing up blood after drinking some grapefruit juice and took an ambulance to Bangkok Hospital. The next day they gave me a total gastrectomy. Now my stomach problems are over. I can't say enough about the wonderful care I received from my 12 day stay in this hospital.

Was the reason for the Gastrectomy explained ?

Severe active hemorrhagic gastritis, both resection ends with acute inflammation and hemorrhage. Omentum and 15 lymph nodes with congestion and hemorrhage.

Thank you.

[dblaisde]

The test you had at Bumrungrad was a barium swallow, not the same thing.

But as long as other possible causes (gallbladder disease, pancreas) have been eliminated and you are feeling better may not be so important. Should you get worse and need to consider gastric stimulation or pyloroplasty, anyplace doing this would first do the test I mentioned.

Ok, thanks for setting me straight on that.

I'll keep working on this puzzle and hopefully figure it out on my own. It's all new and the feedback on actions that you take is sometimes not obvious to read. So it's trial and error, many errors.

Anyway, glad you're with us!

[dblaisde]

I'd been experiencing upper abdominal pain and vomiting after meals for the past 4 years. Sushi, fresh vegetables, yogurt, and cottage cheese were they only foods that never made me sick. Two months ago, I was throwing up blood after drinking some grapefruit juice and took an ambulance to Bangkok Hospital. The next day they gave me a total gastrectomy. Now my stomach problems are over. I can't say enough about the wonderful care I received from my 12 day stay in this hospital.

Jesus H. Christ! And I thought *I* had problems. Well, maybe it'll come to that for me too. Thanks for sharing. Glad your misery has ended.

[bkk6060]

Gastro issues are not fun.

I hope you guys figure it out.

[dblaisde]

It may be irrelevant by now, but I said I'd post Dr. Rungsun's gastroparesis report when I dug it out of my camera, so I will. It's not the clearest report or the best picture I took of it, but it makes its point.

Edited May 8, 2016 by dblaisde

[ammagic]

Have you tried Motillium - very inexpensive & helps greatly with gut motility & bloating. Give it a go

[Sheryl]

It is one of the drugs he says he took to no avail (dromperidone = motilium)

[ammagic]

I didn't recognize the drug name. Too bad it doesn't work - I find it a lifesaver once in a while

[dblaisde]

Followup: I seem to be doing much better now. Even though I eat a fruit salad and chicken salad (with lots of raw veggies) and green curry chicken at nightI suffer no pain. I've even stopped the 40 minutes of slow walking mandated by the Doc after each meal. I *do* take soda water with every meal (for what it's worth. I'll stop someday and find out), and chew my food down to microscopic bits (sometimes spitting out things I can't reduce to this level). I take biologically active yogurt every other day (but I was doing this before when I was in pain).

Perhaps the biggest difference is that now I'm taking a very energetic hour walk every other day, despite the heat. I feel power, health and relaxation after I'm done. I suspect the relaxation is the important thing, since I suspect much of my gastroparesis is due to worry and overthinking caused by my long time curse, OCD.

A treatment that mitigates my obsessive worrying is NAC (otc at many vitamin shops in the US) and I started taking that again, even though it's a bit rough on the stomach going down. It works very well to shut down my brain and the churning tightness I feel in my stomach (and body in general)

An herbalist friend here told me that ginger is good for gastroparesis. According to her it helps open and close the valves in the digestive track, including the one from the stomach to the duodenum. Have yet to try this advice, but will. I've also used an anti-anxiety drug (Lorazepam) if I find I can't control anxiety in any other way. (Writing this, I realize I sound like a wreck. I'm for all appearances a witty and friendly fellow and a popular member of my hotel, dare I say so myself....but I have an 'darker inner world' as I'm telling you...).

Anyway, thanks for all the help and comments, especially to Sheryl for her dedication to all our collective miseries, and especially for her research on treatment in the US, which I may eventually need.

[Lowriesuzanne]

Go online to dr Bernstein's web seminar. Drink liquid protein zero sugar, get A1c down to #5,