Gastroparesis

[Rachel]

Hello,

I found out last week that I do indeed have gastroparesis. I've suspected it for quite some time, but only recently had the test done. I was actually having a "good" digestion day, so I truly thought the test would come back negative. But, nope, even on a good day my gastric emptying was delyed. It is nice to have an answer about the nausea, often not getting hungry, etc. I know the basics about gastroparesis, but I'll be doing some more indepth research now.

One of the things I'm trying to figure out is how much is worth pursuing right now as far as meds, treatment, doctors, etc. Currently I don't have a local POTS doctor, internal med doc, or GI doc. I only have a pcp and a sleep specialist. For those of you with gastroparesis, would you recommend that I find a more specialized doctor for the gastroparesis?

So far I've been able to manage fairly well with dietary changes (low-fat, low-fiber, adding Ensure when I can't handle food) and I haven't lost much weight for 2 or 3 months now, I think. At what point do I need to go to a GI doc or try medications? I don't have much energy, so if it isn't necessary to do more medical visits, treatments, and testing, then I'd prefer to avoid it.

I have an appointment with my pcp next week, so I'll ask her some of these things, but I wanted to also have the perspective of some of you who have been through this. I have searched old posts, but if you have any other practical advice for dealing with gastroparesis, please share!

Thanks for your help.

Rachel

[juliegee]

Oh Rachel,

I hate to hear about the gastroparesis on top of everything else. It sounds like you've already taken some wise measures, with the low fat, low fiber approach. AND, most importantly, you are holding your own with your weight:-) You don't mention nausea which can be a huge problem. Phenergan in the evening (as it causes sleepiness) is good & zofran (if you can get your insurance to cover it) is wonderful for daytime queasiness.

Make sure you keep things moving all thoughout the digestive track. Sometimes gastroparesis patients get backed up lower downstream and that certainly exacerbates symptoms. Miralax is a miracle for many sufferers.

Stay on top of refux, if you suffer from that, as the damage to your esophagus can become pre-cancerous overtime. Zantac, Prilosec, or Nexium are all good alternatives.

If you ever reach the point where you think you need a GI prokinetic to help things move along in your tum, stay away from reglan. This is a bad drug, with many negative side effects. It crosses the blood/brain barrier and some side effects persist beyond the period of time the drug is taken. A tiny pediatric dosage of liquid erythromycin (the pink sweet stuff) 1/2 tsp or less prior to meals and before bed if you wake up with nausea can be a godsend. The erythromycin is benign & turns that nausea into actual hunger. My son has taken it for years and it hasn't lost it's effect for him. I've taken it intermitently and it works wonders. If the erythromycin doesn't work for some reason, many in the US turn to a drug that is sold OTC all over the world, called domperidone. It was created to increase milk production for lactating mothers & has a side effects of getting the gut to move. Some report weight gain and lactation with domperidone, but it also works well to counteract gastroparesis. Domperidone is considered to be quite safe, but is not FDA approved because it isn't financially feasible to work to get FDA approval- very political. Many gastroparesis sufferes order it from overseas.

Small frequent meals are another helpful factor- as is getting plenty of exercise...which may be difficult for you as I recall. Do your best to move around as much as you can. That gets the tum working like nothing else. Connecting with a GI now may be a good idea as it is so hard to hook up with one when you are in dire need. Wait times here in NE GA are lengthy. Consider it a baseline visit. You might feel better if you have a good GI in place should things progress- God forbid! Or, check with your PCP and see if she thinks that is necessary.

I'm keeping you in my thoughts and sending good healing energy your way!

Julie

[MightyMouse]

Here here on the small meals... and also the issues with reflux and taking meds to control that.

The other thing I have to be careful with is anything that tends to slow my system down, such as the muscle relaxants I've been prescribed for spasms in my back and neck and jaw. It's a constant juggling act.

Coffee or other stimulant beverages (tea, etc.) can sometimes help me when my guts have gotten too slow, but again I have to be cautious b/c too much aggravates my reflux--and I can't drink it after noon or 2 pm at the latest or it'll keep me up all night.

Exercise is CRUCIAL to keeping my guts going, walking being the most helpful.

Nina

[Mrs. Burschman]

That bites! I guess it's good to know what the problem is, however.

My brother has dealt with gastroparesis in the past. He had good luck with amitriptyline, which is a tricyclic antidepressant. Why that helped, I have no idea. He took it at a lower dose than it would be used for depression.

It hasn't been much of an issue for him the past few years, so that's good.

Sorry you have to deal with this!

Amy

[morgan617]

My son and I both have gastroparesis, although our gastro refuses to call it that. We've both had the radioactive eggs on several occasions. He says we have "motility problems" well DER. So we just do the best we can, avoid killer foods and complex stuff, etc. He has given Jake domperidone, but it doesn't seem to help enough for Jake to remember to take it, so it's just a diet thing. He won't give it to me.

Good luck with this...if you can, you may want to talk to a nutritionist who can help you come up with a diet that works with this. morgan

[ajw4790]

Hi,

Sorry I have no words of wisdom, but I wish you luck at finding information to help you out! I hope you can find some relief and a useful and helpful dr.

Wish you luck!

[Poohbear]

Rachel,

I'm sorry you are having to deal with this too.

Sounds like you are already doing the right things. There aren't many meds out there but there are a few.

I never had any luck finding a GI in your area who really understood or was willing to take the challenge with the autonomic dysfunction on top of it.

I do have a Dr in Nashville (used to be with Vandy but he's gone elsewhere now) who does specialize and is familiar with how all of this fits in the overall bigger picture with folks like us. If you need his name and contact info then email me. Even with him though----there still aren't great treatment options.

I have a lot of allergies and issues so I can't handle the typical supermarket liquid supplements but I have used Unjury (www.unjury.com) and I've also had to have special mixes made when I've needed tube feedings.

[cardiactec]

ick. sorry Rachel that you have this.....it is NOT fun and for me has been one of the more challenging things to deal with, aside from pots symptoms. if you remember, i was on the brink of going in to have a pacer put in because mine was just getting out of hand..........i decided against it in the long run.............

i hope you find better relief with one of the several meds they have to "treat" gastroparesis. i went as far as the botox shots and it didnt help...

small frequent meals is what i would recommend. and if you are still having problems, then look into pro kinetics like domperidone.

what were your percents from your study? did they make you do a two hour or four hour GES?

hang in there girl.

-Angela.

[Rachel]

Thanks everyone for the support and all of the information. It is greatly appreciated.

Julie, good point about finding a gi doc now before it becomes an emergency. You're right about it being hard to find specialists here. There are so many doctors here, but so many people too, making it hard to get into a doctor as a new patient. Poohbear, that's discouraging that you weren't able to find a good gi doc here who was willing to work with autonomic stuff too. Maybe I'll be able to find a doc who is new to the area.

Yep, I have intestinal dysmotility too, though I don't have any sort of "official" diagnosis other than chronic constipation. I've been on laxatives for over a year now. Currently I'm taking Amitiza, but I still have to overdose on colace daily and use glycerin suppositories almost daily. My guts just don't work at all on their own! I very rarely have pain or bloating, I'm just slower than molasses on a winter day in Alaska.

Nina and Julie, Thanks for the exercise suggestion. You're right that I can't do much exercise, but I'm going to try. A friend gave me some specific yoga exercises that are supposed to aid in motility. Hopefully those will be helpful enough to move things along a bit, but still easy enough for me to do.

Angela, I only had the 2 hour study. I don't think I could do the 4 hour. I was in so much pain after the 2 hours was up, that a 4 hour would be all but unbearable. They brought a stretcher with a soft pad on it for me to lie down on, but even with that and strategically placed pillows I had a lot of back pain. So I'm just hoping that the 2 hour was accurate enough. Apparently my stomach was becoming more and more dysfunctional as the test went on, so I'm sure it would still be quite dysfunctional come 4 hours. And considering I often don't get hungry even after going 6-8 hours without food, it doesn't seem likely that my stomach is empty!

Thanks again, friends.

Rachel

[MightyMouse]

Rachel, like you, my motility issues are "all the way down the line" and not just my stomach. Yes to the yoga exercises...even just some very careful sit-ups that don't really involve much bodily movement other than engaging the abs really helps. My trainer has me do some leg lifts and movement that seem to help. Also, riding the recumbent bike has been a decent way to get things "going" at times... it cost me about 175$ and I got it with free shipping; it has a built in timer, heart rate monitor, etc.

There's been no magic for me with meds--I took one of the ones that's supposed to help with gi motility, but I didn't do very well on it, made me very dizzy. For me it's really down to 3 basic things:

Fluid intake

Fiber intake

EXERCISE

Nina

[Lenna]

A tiny pediatric dosage of liquid erythromycin (the pink sweet stuff) 1/2 tsp or less prior to meals and before bed if you wake up with nausea can be a godsend. The erythromycin is benign & turns that nausea into actual hunger. My son has taken it for years and it hasn't lost it's effect for him.

Do you need a prescription for that or can it be bought OTC?

[Guest tearose]

Sorry you have an additional thing to deal with Rachel. I understand how you appreciate knowing what is the problem.

Yes, talk about waking up with nausea...it is 2 in the morning and here I am. I reach for some tea and chew several gaviscon. Then I try to figure out what may have brought this on. If you stay on top of this, you may find periods without symptoms,

I can't write as clealy at this time of day, but wanted to add...exercise doesn't have to strain you. Try getting down on the floor and just doing some leg lifts! You may be pleasantly surprised how it helps. Also, while laying on the floor, rub your stomach in a gentle circle and see if you can kind of "knead" the gut. It helps wake up my gut.

Just for a few weeks, try to see if there is a pattern of things that irritate you and what appeals to you. You may be able to manage to keep your gut calm and moving.

take care, tearose