Gastroparesis, post-prandial pain, eating difficulties

I have had to grapple with hypersensitivity in relation to digestion.

I am not even severe but have still observed ridiculous hypersensitivity to some bacterial products for example. So much so that I have to wash celery & lettuce in detergent with a sponge ensuring full contact and abrasion of all surfaces, for example. On the other hand I can drink live apple cider vinegar with mother in water no problem. It is hard to spot a pattern but the same problems recur repeatably. Something about my digestion is very picky what it will accept since ME.

Anything out of order and my bowel evacuates. For example I cooked with a new brand of chicken schmaltz the other day, one teaspoon in a stirfry. It was a bit artisan and I think it had a lot of free amines in it and long story short I was up half the night. This kind of thing has been a problem since onset 38 years ago.

Graphic details aside the point I am getting to is there seems to be a powerful vetting system involved with digestion with immune like ability to recognise the constituents of food being digested and the physiological and neurological connections to veto the process. Probably evolved to deal with toxicity.

In my experience of ME this system of digestive veto is dialled way up and I am not even severe. I wonder if that was even more hyperactivated, it might make it virtually impossible to digest anything.

 

I've had fodmap sensitivity for ages. I blew up one of those hydorgen breath tests and got a record score, suggesting my body wasn't coping well with them. But recently i've begun to suspect histamines. Keeping to the fodmap diet simply wasn't providing 100% effects. And even on keto I seemed to have bad digestion.

Yesterday I did an experiment where I ate just cream and cucumber, today my guts are perfect!

I'm strongly considering that all the fermented and aged food I've been trying to eat to heal my gut might actually be making things worse!!

I'm hopeful that actually nailing down the actual source of the problem might let me relax the fodmap side a bit. It has definitely been the case that sometimes I eat something apparently rich in fodmaps and get away with it. Here's hoping!

 

Another thought is that gastroparesis may just be part of the signaling response. It isn't some extra problem. We probably all have gastroparesis when we have 'gastric flu'. Each person's problem may be a bit different but we know that the way the autonomic system responds during eating is very subtle and complex.

 

That makes sense, as it seems to correlate with general symptom level, at least to some extent.

All told, I'd say there were about 20 years when I couldn't eat a main meal after lunchtime because gastric emptying takes so long in deep PEM. If I ate at 7pm it wouldn't happen until around 3am, and there's no chance of sleeping until the bloating and the painful pressure on the sphincter has eased. I had to be up at 6am for work.

Now it takes about four hours on average, because the compounded PEM I'd get when working is a lot less frequent. I can't help but be aware of emptying because it always makes me retch as it starts, but then the pressure against the sphincter quickly eases and it's only a few minutes before all the discomfort's faded.

 

oh wow does it ever!

this is so true for me too, its really unpleasant waiting for it to ease, and bizarre how i can be throwing up food that i ate for breakfast at midnight!

Our experiences sound very similar except

at this point for me it just turns into full fledged vomitting until its all out. I might try harder to hold it down & see if it empties the proper way next time.

 

I used 'retch' because it's the only way I can think of to describe it, but it's a single muscle contraction. It can be strong enough that I look as if I'm about to throw up to anyone with me, but I never have.

If I've been able to fall asleep beforehand (usually when I haven't eaten enough to cause distension) I always jolt up into a sitting position by reflex, but I can lie back down again as soon as I've realised what's happening. It's nothing more than an oddity, really—I only mention it because it makes me aware of the point when my stomach starts to empty.

It's so miserable, and I've never had a doctor believe how long it goes on for. I've been assured I can't possibly know when my stomach's emptying, when the reality is that it's unfeasible I wouldn't know. It's like an 18-stone dance partner stepping off your foot.

 

I think of gastroparesis as a longr-term condition, but yes, it is possible to have a gastroparesis flare and diarrhea at the same time. Im currently in that situation, although it's partly because I'm unable to eat anything but clear liquids, and I also have very slow lower gut motility so have to take Miralax twice a day. If you are having signs of gastroparesis, like bloating, feeling very full after eating very little, vomiting after eating certain foods that are harder to digest (anything from raw fruit and veggies to legumes in any form) and are also having diarrhea, it could be because of something specific you're eating. But I would highly recommend seeing a gastroenterologist. The best way to diagnose gastroparesis is a gastric emptying study. It's not 100% accurate, but especially in more severe cases, it will definitely show that the stomach is not contracting to move food through into the duodenum at a normal rate. For me, it took over 4 hours for 20% of a small meal to pass through , whereas for someone without gastroparesis, the entire meal should be through at the two hour mark, I think. ( typically they give you plain white toast and eggs scrambled containing a radioisotope for tracking, but for those who can't tolerate solids, they may use a meal replacement drink instead.)

In the US at least, my understanding is that the main pharmaceutical treatments are erithromyacin (probably misspelled that) and metoclopramide (Reglan), although doctors can usually get dispensation to prescribe Domperidone (not FDA approved in the US but available in the UK and Canada and other countries) if the patient doesn't tolerate the first two.

I've recently been told that in cases where medication is contraindicated or doesn't work, Botox injections given endoscopically can relax the pylorus enough to allow emptying, compensating for the inhibited motility of the stomach.

As for diet, when I was first DXed with gastroparesis at age 16, in 1984, I was told to stay on a low-residue diet, and that had been working for 40 years. Some examples of what to avoid: raw fruit and vegetables (applesauce and some cooked fruit w/I skins ok), no raw vegetables, cooked vegetables limited to green beans, asparagus, tomatoes, potatoes, asparagus, Chard, maybe yams. No carrots, broccoli, cauliflower, or legumes of any kind ( including peas and corn--I don't even tolerate cornmeal). They advised no whole wheat or whole grains, but until recently I in handled those fine. No nuts, although again until recently, I tolerated but butters as long as not chunky.

Hope this helps a bit. All of this, for the most part, is based on my own experience here in the US. I highly advise anyone with gastroparesis or thinking they have gastroparesis to see a gastroenterologist and a nutritionist.

 

Before I got my gastroparesis diagnosis, one of the first things I noticed was that when I ate yogurt, one of my favorite foods, I would belch and the taste in my mouth would be like a sewer. A few years ago I finally started being able to eat Greek yogurt only, but any other fermented foods or even acidophilus tablets or other probiotics are a disaster for me.

As for FODMAP, I tried that briefly-- difficult because overlapping it with all the things I don't tolerate due to my gastroparesis and lactose intolerance made my diet super limited-- and it didn't help me at all. Just my experience.

 

I have been trying to get aggressive rest as much as possible but think I still may be Long-Term pem partly because I can't limit all activity-- recently I had to have three out of the house medical appointments in 2 weeks, though usually I avoid any out of the house travel /appointments/ etc.

I am wondering if anyone knows of any research, especially articles I might be able to print out, that talk about gastroparesis and me/cfs.

As I responded to @Subtropical Island , I have had gastroparesis since age 14, when I had emergency surgery for a perforated pyloric ulcer due to all the medications I was taking for my juvenile rheumatoid arthritis and also due to my doctor's not believing that someone my age could have an ulcer. The general surgeon who did the surgery did a pyloroplasty and vagotomy, The latter because he knew that I would be on these meds long-term and would be prone to lots of acid production so he wanted to limit that. Obviously, this was before the discovery of h pylori. My gastroparesis wasn't discovered and diagnosed until 2 years later, when I had bleeding ulcers underneath a large bezoar of undigested food, which had to be treated via irrigation and suction over the period of 6 days to get it all out. At that point I was put on Reglan And a low residue diet. I had pretty severe CNS effects to Reglan, The worst being severe depression with an onset of about 20 minutes after taking the medication, but also what others above have described-- I always have called it a dystonic reaction but it sounds like there are better ways of describing it. I don't know all the science.

I have managed the gastroparesis over all these years fairly well, even having had to go off Reglan And just just manage with diet. But in the last 2 months, I've been going downhill, with frequent flares. For a while, I could do what I usually do and what others here do-- a day or two of just clear liquids until my gut was finally able to empty-- and then I could resume my normal diet.

A week and a half ago, I stopped tolerating any solid food, and about 10 days ago I stopped tolerating anything but clear liquids, and have increasingly tolerated less and less of those without getting a lot of stomach pain and nausea.

I was admitted to the hospital 5 days ago for dehydration and also to try to see what is going on. Of course, while it seems that some of the clinicians here have heard of me/ CFS, none of them have much of any understanding of it at all. I had a really really good admitting doctor over the weekend who was determined not to discharge me until I could demonstrate that I could handle eating food and that if I didn't get to that point she had other plans to send me too a tertiary hospital-- in my area, that would be Stanford or UCSF. Unfortunately, she is off this week and the doctors I have been seeing are just telling me that as soon as I can tolerate clear liquids they will send me home and have me follow up with my gastroenterologist whom I was already ready to fire because she is so slow to respond even to urgent situations and when she does respond, her responses are inadequate to the situation.

Anyway, at least I did get a good GI doctor to do an EGD yesterday, and while he said my stomach looked red and inflamed-- did a biopsy for h pylori and waiting on that-- my pylorus looked fine with plenty of opening. He did a dilation procedure anyway just given my symptoms. Since then, unlike the last time I had a dilation procedure, I have been very nauseous and the pain has been at least as bad as it was before. I can barely get down the clear liquids they bring me, although I did convince my really good doctor over the weekend to switch my IV to glucose so at least I can get some calories that way.
I expressed to the doctor this morning my and my husband's concern that even if I tolerate the clear liquids here, once I am home-- and I will certainly be in very bad pem after this hospitalization-- it will be very difficult for me to get myself enough nutrition and hydration and I worry that I will end up back in the same situation.

My doctor over the weekend said she would work with us and make sure that I was not being sent home without a really good plan in case things got worse. Current doctor, not really a plan.

I am just wondering if there is anything I can hand to these doctors to let them No in their language what I've been telling them, which is that my me/cfs is very possibly making my gastroparesis worse. I really don't want to be in a situation where I need TPM or a feeding tube.

If anyone has any thoughts on this, I would be so grateful. Feeling pretty frustrated and concerned.

 

A quick search on PubMed suggests that there are basically no articles describing gastroparesis in ME or CFS or ME/CFS. I hadn't come across any previously although there has been discussion of gastroparesis in severe cases of ME/CFS needing feeding support. I doubt there is any reliable information to be honest.

 

Thanks. That's what I was guessing but figured it didn't hurt to ask