To Everyone with Gastropareisis - I have a couple of questions

[Knellie]

  I have been having a lot of GI issues lately - bloating, indigestion, heartburn, nausea, abdominal tenderness, etc. I told my doctor about how a lot of people with dysautonomia have gastropariesis and he thinks that I could have that as well. But if I got diagnosed with that, is there any treatment? I am already on a PPI as of right now, but it doesn't help a lot. Also who would diagnose that? Would that just be a Gastroenterologist? Thanks in advance

 

[Guest KiminOrlando]

Yes, a gastro diagnosed me. He sent me for nuclear testing to eat eggs with additives that would glow with imaging. It is a very long test. There is no FDA approved med that I am aware of, but my gastroenterologist trained in the UK, so he prescribed a non-FDA approved med that has to be compounded. They use it in the UK. It has changed my life. It is called Domperidone. 

I think once it gets bad enough they can implant a device to help with peristalsis but when I was diagnosed it was still experimental. The meds are working for me so I haven't looked at it. I don't know anyone with one.

I hope you are able to get a solution. I got very lucky.

[cmep37]

I live in the UK and take Domperidone too @KiminOrlando.  I've not been formally diagnosed with gastroparesis but I have all the signs of it when I'm in a bad POTS flare so my GP is happy to prescribe it so long as I'm only taking it for short periods a few times a year.  Domperidone works brilliantly to speed up my digestion - I usually only need to take it for a few days (less than a week) at a time.  There is some concern about long-term use causing cardiac complications like long-QT syndrome so even in the UK it's not as popular as it used to be but my GP hasn't found anything else as effective so keeps prescribing it for short-term use.

[toomanyproblems]

I was diagnosed with a pretty bad case of gastroparesis by a gastroenterologist while in the hospital for the same. They did a gastric emptying study (described above), a colonoscopy and endoscopy but you probably don't need all that. I was given Reglan, a commonly prescribed med for it. Like Domperidone, it has its limitations. I quit taking it after a few weeks when I started having symptoms of tardive dyskinesia, a known complication. While my symptoms from delayed emptying can be somewhat waxing and waning on a relative scale, I was only able to consume liquids for a couple of years. After I started getting IVIg over three years ago, I was able to eat more solid foods at least some of the time. I now get subcutaneous Ig because of Covid. While I certainly can't eat normally now, I adjusted to my restrictions.

I think my gastroparesis is considered fairly severe in terms of delayed gastric emptying. They wanted to surgically put a feeding tube in me in the hospital but I refused. With research and support, I was able to figure out a flexible plan. Each case is different. Other than over the counter acid reducers and 60 mg mestinon 3x a day (which I was already taking for something else) I don't take any meds. I just control it the best I can by controlling what I eat. I was eventually seen by a big shot gastroenterologist who determined my case was caused by autoimmune autonomic neuropathy. The fact that it improved with the Ig therapy lends more credence to that diagnosis.

One thing to remember is if you're too miserable, you can always not eat for a while or switch to liquids. If you have it, maybe your case is mild and you won't have many restrictions or will find a med that works well for you. Good luck!

[flowntheloop]

20 hours ago, Knellie said:

  I have been having a lot of GI issues lately - bloating, indigestion, heartburn, nausea, abdominal tenderness, etc. I told my doctor about how a lot of people with dysautonomia have gastropariesis and he thinks that I could have that as well. But if I got diagnosed with that, is there any treatment? I am already on a PPI as of right now, but it doesn't help a lot. Also who would diagnose that? Would that just be a Gastroenterologist? Thanks in advance

 

@Knellie You would see a gastroenterologist, yes. PPIs typically don't help with this condition (more with the reflux that CAN go along with it).  I don't take them as I don't have reflux, and I did not respond at all to them.

My helpful tips:
1) I HIGHLY recommend you keep a food diary and log any symptoms that pop up in response to eating certain things. Getting a "SAFE LIST" together will be one of your most useful tools! My "safe list" is quite small (and can shrink even further under times of stress or flareups), but it can take so much of the burden off of eating.
2) Eat small meals and space them out! I split my meals in half on a normal day. I eat one half at a sitting, the other half 45 minutes to an hour later. Also, don't eat too close to bedtime (especially if you have reflux/heartburn). During flares you may have to quarter your meals instead.
3) If you introduce anything new to your diet, do it slowly and in small quantities. I was on a liquid/mush diet for several months this spring/summer, but I have graduated to some soft solids now. I have slowly found some safe foods that feel rewarding and decadent!
4) Track your calories (even if for a few weeks or a month) to be sure you are getting the nutrition you need. If you aren't, find a protein/nutritional shake that you can stomach.
5) Add breathing exercises and/or guided meditations into your daily routine. I've noticed they can ease my symptoms (at least a bit) and can help me get more food down that I normally would.
6) Chew gum / suck on lollipops after meals and drink lots of water.
7) Gentle walks (if you aren't too dizzy) or floor stretches can help the food get moving after meals as well.

[Knellie]

   When you talk about eating liquid foods, what do you mean? Is that like protein shakes or soups or do you just blend up meal and drink them? Also, does your gastropariesis affect how much water you can drink?

 

[toomanyproblems]

On 12/31/2020 at 2:03 PM, Knellie said:

   When you talk about eating liquid foods, what do you mean? Is that like protein shakes or soups or do you just blend up meal and drink them? Also, does your gastropariesis affect how much water you can drink?

 

Yes, like protein shakes. There are a lot of commercial products that you can mix with milk or other liquids that you can live off of. I also bought a Vitamix to grind up vegetables and fruit very fine. I still have to be careful of how much fiber is in there. I can only use half of some of the commercial products because there's too much fiber for me. 

I can drink as much water as I want. In general, fiber, fat and sugar delay stomach emptying.

[Delta]

@Knellie,

Hi, and I'm sorry you're dealing with the gastro stuff - it is pretty awful.

My POTS treatment has helped mine. Are you taking any meds for dysautonomia, such as a beta blocker or other?

I had two two-week episodes of it in the months leading up to my POTS diagnosis; in both of those, I lost ten pounds in two weeks. I was diagnosed with gastroparesis by a gastro based on my symptoms; I didn't have the gastric emptying, eggs, etc. test. I had been making the rounds of doctors and specialists, trying to find out what was going on, and had by then been referred to the neuro who told me he strongly suspected POTS and gave me a referral for the TTT. So by the time I got to the gastro and told him that I was scheduled for a TTT, he said that the POTS was likely causing the gastroparesis, so go have the TTT and if it turns out you have POTS, see if whatever treatment that is prescribed will help. If it wasn't POTS or if the treatment didn't help, come back and see him.  Knock wood, the treatment prescribed by the neuro after the TTT - a low dose of a beta blocker - helped, and I haven't had any gastroparesis episodes since then. That was a little over two years ago.

I have had what I think are minor episodes compared to what I used to have, and they have been tolerable. So what helped me when I had the severe episodes was drinking stuff like Ensure and Carnation breakfast drinks; Gatorade; drinking broth and eating what soup I could handle (for some reason, I was craving chicken soup when this was going on); and as much strawberry shake as I could handle. Drinking water is good, but you need the calories and nutrition on board. If you can handle even a part of a shake, that will be helpful. Also - I bought the small jars of various types of baby food! They were kind of short on flavor, but they enabled me to get some meat and veggies on board.  Even if they were teeny-tiny pureed helpings (sometimes I couldn't even finish a jar), it was better than nothing.

I had nausea just about every morning - two words - "Pepto Bismol". It may be worth a try if you've not already tried it - it helped my nausea. I've said on here before that at that time, my motto was, "Pepto Bismol - not just for breakfast anymore!" because the nausea was just Every. Morning. 

I hope your gastroparesis and other GI issues get resolved soon. Wishing you good health in the New Year!

[Knellie]

  

17 hours ago, Delta said:

 

My POTS treatment has helped mine. Are you taking any meds for dysautonomia, such as a beta blocker or other?

 

         I am not on anything for my dysautonomia. I am on omeprazole, but I don't take it super often because it doesn't help that much. I was on Propranolol for a while but it didn't help so I stopped taking it. I was also on Topamax for a little bit for migraines but it actually ended up making everything worse. I was also on Amitriptyline for migraines and it also didn't help but just made me really tired. What beta blocker are you taking? I will ask my doctor about it. 

[Guest KiminOrlando]

Omeprazole won't really help until the gastroparesis is treated or you switch to a liquid diet. I take Omeprazole too, but it is with the Domperidone. Gastroparesis is so much more than acid reflux. I take Omeprazole and still take Pepcid for break through reflux.

[Delta]

2 hours ago, Knellie said:

  

         I am not on anything for my dysautonomia. I am on omeprazole, but I don't take it super often because it doesn't help that much. I was on Propranolol for a while but it didn't help so I stopped taking it. I was also on Topamax for a little bit for migraines but it actually ended up making everything worse. I was also on Amitriptyline for migraines and it also didn't help but just made me really tired. What beta blocker are you taking? I will ask my doctor about it. 

I actually am taking Propranolol! It's a very low dose - 10 mg. The doc actually wanted to start me on 20 and I asked if I could start with 10 and go up if need be, and he was fine with that. Were you taking a higher dose of the Propranolol? I ask because I have read quite a few times that, for some reason, Propranolol works best on POTS at small doses and I'm wondering if maybe you were taking a higher dose so it wasn't much help to you. You may have to try different BBs before you find the one that works best for you. I feel for you, not taking any meds for the dys., because before I was diagnosed, I was a mess and it seemed as if it was getting worse every day. I hope you find relief *soon*!!