Gastroparesis

If you have gastroparesis (delayed gastric emptying), what sets it off for you? Have you found anything that helps?

How do you sleep? How do you get all the nutrients?

It really affects quality of life...

 

I have never been diagnosed with gastroparesis but was told the Esomeprazole was to move things through my stomach, after 2 other antacids didn't work. Taking at night has helped a great deal, but I find carbohydrates very difficult to digest and try to avoid as much as possible. Sweetcorn, apples and beetroot cooked in own juice (not in vinegar) are helpful for me. It took over 3 years to find what worked for me. My sleep pattern varies so can't really say. I take probiotics, which I doubled up on months ago and find they help to stem infection, although I still get milder infections, which I generally manage with over the counter tablets. I hope this helps, but it is a case of finding the right foods for you. Small meals more often was my advice to help slow digestion.

 

@ME3 I’ll look up the esomeprazole, thank you! Sweet corn, apples, and beetroot seem like good ideas. Apple sauce without added sugar seems to be okay for me. May I ask what kind of probiotic you take? I realize it’s different for each person, but I’m not sure where to start. Thanks for all the tips!

 

I don't think I have this problem (a few minor stomach and intestinal problems but very minor compared to the symptoms that are disabling). But I saw this information from Dysautonomia International so thought I'd pass it on:

Code:

https://twitter.com/Dysautonomia/status/984512915645632512

https://twitter.com/user/status/984512915645632512


For those who may have trouble loading tweets here's the link to the study they mentioned:

Expert consensus document: Advances in the diagnosis and classification of gastric and intestinal motility disorders

This page talks about delayed gastric emptying

https://www.nature.com/articles/nrgastro.2018.7#investigation-of-gastric-motor-function

 

Eating much less fiber seems to help. A commercial organic chicken broth with salt and ginger might be helping a little.

gastroparesis started with ldn.

i wonder what the effect of h2 blockers is, positive or negative. i didn't know that ppi's were used. aren't those a bit risky? not that reglan doesn't have a side effects list the length of war and peace.

 

@ahimsa Thank you for the articles! I'll give them a read when I'm able to read more.

How long were you on LDN before the gastroparesis began? I was on it for a month with no problem before the gastroparesis began, so I can't directly link it to the gastroparesis. Thanks for the tips. I'm trying the broth with ginger today.

 

Hedgehog sorry for delay, I've not been too well. It's best if you read up un probiotics from many former discussions as not all can help or help different people. As far as esomeprazole goes, I have hiatus hernia and therefore it helps me. It was long after I started on it that I was waking with a distinctly yellow skin, but I'd been left on a double dose for years instead of 4 weeks. I have just posted on another thread that antacids may act like antibiotics in producing antibiotic resistance. Patients Association reviewing this so no real answers to the problems. If you can find the right foods which don't cause upset and are easily digested, that would be the best way forward. Fibre difficult.

Sorry I know how difficult the journey is but it pays to try excluding one thing at a time. Bread is often a big culprit. Over the years I have stopped dairy and eggs. A small amount of dairy or other foods I find I can tolerate once in a while. It can change from year to year, which doesn't help me either.

 

I have intermittent gastroparesis. It's actually always there at a minimal level of very slow digestion. Yet, there are days where my stomach almost completely shuts down. On those days I get a painful bump just below my right rib. It's more likely to get into the crazy gastroparesis pain of almost fully shutting down right before my menses. But, it also pops up at other times. Therefore, I always have gastroparesis, but intermittently it's really brutal.

The thing that helps me most is to identify the symptoms that I'm heading into a major shutdown early on and to stop sending down food immediately. I go on a liquid diet (and soft foods) for a few days. When the pain is unbearable, I lay on my left side which is supposed to help with natural emptying. Before when I used to not recognize the initial symptoms, I'd know I was feeling bad and I'd try to eat better (like a whole bowl of blueberries). I'd end up in the hospital because three meals would be in my stomach at the same time, and yet I'd be heading into hypoglycemia. So not sending down food (especially apple skins, meat, fruit skins, etc....) during that time when it's at it's worst definitely helps. These are foods that are harder to digest. Also, keeping up with sending down high sugar/electrolyte drinks helps keeps the hypoglycemia at bay.

Do you have gastroparesis the same all the time, or are you like me where it comes on full force more intermittently? I can't imagine what it would be like to have it at the brutal pain level all the time (rather than just intermittently).

I have a lot of intermittent muscle weakness and spasticity issues. For example, intermittent foot drop. Intermittent muscle spasms in calf and thigh muscles at random. Severe constipation (resulting in redundant colon). Cyclic vomiting. During labor for all three children, I had contractions for 24 hours that never resulted in 10 centimeter dilations. The doctors called my contractions very painful and spastic while they were also unproductive resulting in natural childbirth three times via midwife/doctor massage/stretch. Not recommended. TMI (sorry). For our family, these types of muscular intermittent weakness/spasticity issues are presumed related to our family's Mitochondrial Disease.

I had POTS when younger, and low pulse pressure when standing now that I'm older. It's all considered part of dysautonomia symptoms.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5330602/

 

I was prescribed erythromycin (an antibiotic) for a skin infection. To my surprise it helped both the skin infection and (temporarily) helped a totally unrelated, extremely painful, long-term pain problem I have that doctors assume is gut-related. In reality they have no idea what the actual problem is, and I think it is probably seen as being an MUS (therefore is imaginary, therefore no further investigation will be done), and so I am left to just get on with it - although I did start getting prescribed pain-relief two or three years ago.

I assumed as a result of this unexpected improvement with erythromycin that my pain must be caused by an infection. But two doctors have disagreed with me. Since I've had no further tests I assume their disagreement is based on the day of the week or the direction the wind is blowing.

At the time this all happened I was seeing a gastroenterologist about something else. When I told her about the massive reduction in pain I got from taking erythromycin she told me that she didn't believe that I had an infection. Instead she decided that I suffered with gastroparesis. This was because erythromycin is a "prokinetic agent" as well as an antibiotic :

https://en.wikipedia.org/wiki/Prokinetic_agent

Since doctors aren't happy to prescribe antibiotics all the time, the gastroenterologist insisted I try a different prokinetic agent, and the one she chose was metoclopramide. If it worked then it would, allegedly, prove I had gastroparesis.

Unfortunately, what I didn't know is that metoclopramide has several names and one of those is Maxalon. And back in the 1990s I had reacted severely to Maxalon after I was injected with it as an anti-emetic during surgery. I had developed extrapyramidal symptoms and had arms and legs which I couldn't control and they were twitching and spasming like crazy until the injection wore off.

The gastroenterologist prescribed metoclopramide in tablet form, so the reaction wasn't so quick as the injection. Completely unaware of what was about to happen, the first day I took three of the tablets (the dose I was prescribed), and I became a totally reckless driver which is totally out of character. I was lucky I wasn't done for speeding. My husband noticed other changes in my personality and the way I was acting. The second day I didn't feel well so I only took one tablet. The third day I took one tablet as well - and that was the last one I took and will ever take. The extrapyramidal reactions kicked in and I could NOT stand still. I paced and twitched and spasmed and jerked and I could not sit still either. I also became suicidally depressed in no time flat and debated running in front of a bus or a train, because if I had to spend much more time like this I wanted to kill myself. In the end I saw a duty doctor at my local surgery and she prescribed an antidote. It got rid of the worst of the problem in about 3 days or so, but I didn't feel "normal for me" for several months. (My doctor didn't believe it took several months to feel back to normal, but doctors never believe a word I say unless they can see the problem with their own eyes.)

I've done some research since then and have discovered that metoclopramide is a dopamine antagonist and that causes my reaction. I suspect that either I have low levels of dopamine or have fewer dopamine receptors than normal. And that may well be because I have hydrocephalus which is believed to have developed in childhood or earlier.

For people who don't suffer from dopamine problems there are 13 prokinetic agents they could try listed on wikipedia. Unfortunately, I still have no clue at all whether I have gastroparesis or not.

 

@ME3 No need to apologize! I understand very well and hope the effort of responding didn't set you back. That's very interesting about antacids acting like antibiotics. I'd never heard it before. Sorry to read about the instance of yellow skin you had.

I'm still trying to figure out which foods go down easily and am surprised you listed bread. White bread (although it's not exactly healthy) seems to go down okay for me, but I'll pay more attention. A gastroparesis diet seems at odds with other recommended diets, like sibo, paleo, ketogenic diet etc. I agree, the changing intolerances confuse things even more.

@BeautifulDay Hmm, do you think the bump under your rib is where the food has settled? My stomach gets hard to the touch but doesn't have a specific bump. I'm the same as you, having a low level gastroparesis all the time but mixed in with more severe bouts. Also can't imagine having the pain all the time. It keeps me awake at night when I get it.

I haven't learned the early signs of gastroparesis setting in yet, but I'm going to look out for that now that you mention it. I definitely also have trouble with fruit skins like you, and found that I can microwave blueberries and take off the skins (and mix the innards into cream of wheat).

I'm sorry you had such difficult childbirths. I can't imagine how painful it must've been. One of my doctors thought that POTS meant less blood going to the stomach, which could contribute to gastroparesis (but this doctor wasn't an expert on the gut, so it's just a thought).

@Arnie Pye That seems like a big clue that the antibiotic helped your gut problems. Unfortunately, I became allergic to most antibiotics, including erythromycin, after coming down with cfs/me. I was able to take the sibo antibiotics, but my gut is worse now if anything.

Your reactions to maxalon sound like a nightmare. It's honestly scary to try any medication or supplement with how sensitive people with cfs/me seem to be. I'm glad you pointed out that it's a dopamine agonist. I'd probably stay away as well. I was put on a small dose of a serotonin agonist that caused jerking limbs for months after stopping. My doctor also said that wasn't possible. I think it contributed to my relapse.

I hope you're able to find a doctor who takes you seriously. That's a whole new can of worms apart from already having this illness.

 

Metoclopramide aka Maxalon is a dopamine antagonist, which blocks dopamine receptors. A dopamine agonist activates dopamine receptors. They have opposite functions.

Being allergic to most antibiotics must be an absolute nightmare!

If a serotonin agonist caused jerking limbs after you stopped it, it suggests your problem was caused by your serotonin levels being reduced. Have you ever tried 5-HTP? It will increase your serotonin levels. It is available over-the-counter in the UK and the US. You could read the reviews on Amazon.

 

@Arnie Pye Thank you for explaining the difference between agonist and antagonist! It went right over my head in your original post (brain fog is heavy). Does that mean you had too much or too little dopamine? I meant to say I had serotonin syndrome- too much serotonin.

 

I think I have either too little dopamine or too few dopamine receptors in my brain, but I have no idea how I could prove which of those is true, or even if my understanding is correct.

If you've had serotonin syndrome, then ignore my suggestion about 5-HTP!

 

Hi thanks to all for the information. I'll read up when able. Yesterday I caught the back half of a programme, 'Health Truth or Scare' (I think it was called), which happened to be discussing Antacids PPIs.
Apparently all GPs in the UK are now reviewing anyone who has been on them for a long time. They said due to them possibly causing stomach cancer/bowel problems. They are asking patients to try coming off them and using over the counter medication such as Gaviscon or other names. At first patient will have a very large influx of acid into their stomach but should settle after a few weeks. One patient found it ok but another was still having problems 4 weeks later. He was asked to keep trying for a while longer in the hope it would eventually settle. Programme ended without results.

I've not been reviewed but may see the doctor soon as I'm not sure what difference the hiatus hernia makes. Acid in the Esophagus can cause ulcers and cancer. Told recently by a pharmacist some people need to stay on them. All very confusing and bit worrying.

Hope to keep you informed soon.

 

I had a terrible reaction to metaclopramide too. To myself, I called it a pathological restlessness. If I was sitting I felt I would explode if I did not stand, then standing had to sit. Difficult to convey how awful it was.

 

@Mithriel The problem you describe when taking metoclopramide could be one of the following - extrapyramidal symptoms, akathisia, or tardive dyskinesia

I hope you didn't take it for long, because if the problem is allowed to continue it can become permanent even if the cause is removed. I only took five tablets in three days, but it took me several months to completely get over it. It was like being in hell while I was on it, and for ages afterwards.

 

I've had life long gut-motility issues that finally wandered into the gastroparesis territory last year after increased Baclofen use (was also trying a low-carb diet just before so may have also contributed). Severe nausea and pain after eating, etc. What was especially impairing was that after I'd eat, I absolutely HAD to lay down. Spent much of last year in the fetal position until we tried metoclopromide. I think doctors have a tendency to prescribe too much, as in @Arnie Pye 's situation above. I was very wary of trying it because I was already having many of the movement problems for which metoclopromide is a notorious cause. But, thankfully, in my case it has proved a godsend. That said, I take a very very low dose - 5mg at bedtime (half a tablet of the lowest dose -- mostly to just help along anything that's still sitting around in my stomach). Every once in a while I'll take more during the day (say, a holiday where I'll be eating more).

Other than Reglan, I manage it by eating snacks rather than meals, eating slowly, making sure to chew my food thoroughly before swallowing, and just plain waiting until I'm hungry before eating rather than eating because it's lunchtime. A small bowl of oatmeal w/half a banana or thin slice of deli ham on a cracker with a little homemade sauerkraut for breakfast. A small muffin or couple of thin slices of homemade seitan summer sausage and cracker for snack. Soup and roll or rice and fish for dinner with a slice of cantaloupe. On bad days, it's broth and a slice of white gluten-free bread (I have problems with FODMAPs so I can tolerate the protein in wheat - i.e. gluten - but not the carbs in wheat). My monthly cycle also affects how much I can eat (when I'm pre-menstrual I can eat almost normally but during and after I'm back to just snacks). My gastroenterologist told me to be careful of things like fats (which I almost can't digest at all), protein, and fiber -- all of which will elicit hormones that slow down digestion. I do wonder about whether I'm getting enough protein, but so far I'm more concerned with my ability to function. It's a difficult balancing act to be sure.

 

Is it possible to have gastroparesis and diarrhoea? Within the same 24hr period?

Apologies if this is a dumb question.

 

@Subtropical Island A google search didn't really give a good answer, but it sounds like it's possible. At least, other people have mentioned having that happen. Hopefully someone who knows more can answer your question.

 

My gastroparesis is 90% gone. I found out the most likely cause of the gastroparesis was taking CoQ10, as odd as that is. I was very surprised, because some people take CoQ10 to help gastroparesis. It didn't seem to be the excipients in the pills, either, as I tried more than one brand.

I found out the connection after noticing a pattern on the calendar of symptoms and medications I keep, then stopping and starting CoQ10 to make sure. More than half a year of pain and no dinner because of a supplement, so weird! I couldn't find any other case of this online.