Digestion issue causing overexertion and severe weight loss

Discussion in 'Gastrointestinal and Urinary' started by cassava7, Jan 25, 2023.

  1. cassava7

    cassava7 Senior Member (Voting Rights)

    I am bedridden with severe ME and am struggling to maintain my weight because digestion is very harsh on me. The more I eat throughout the day, the harder digestion becomes, so I cannot eat enough. I have lost a significant amount of weight over the last months, to the point that I have become severely malnourished.

    After a week long stay at the hospital, I have had a nasogastric tube placed but it does not help because I still have to digest the feed (even though it is an easily digestible liquid that drips slowly over hours). In fact, it makes the problem worse — so far, I have not been able to finish a pouch of feed and it prevents me from eating my second and last meal of the day (dinner). The medical team essentially treated me as a malnourished patient and discharged me with a diagnosis of “functional digestive disorder”.

    I am not sure that the issue is gastroparesis. Before I reduced my portion sizes and forced myself to eat, I did almost vomit, I have moderate nausea, and fats do exacerbate my digestive symptoms very much (for multiple days). But it still seems to me that food empties from my stomach at a normal speed — the predominant sensation is postprandial fullness accompanied by upper abdominal bloating or pain, early satiety and some nausea.

    It is as though all my blood pools into my stomach during and after a meal (my hands become cold and pale and I shiver a lot) and stays there while my stomach is working very hard. Then, when I am done digesting and my stomach is empty, my blood comes out of it (my body warms up) and my typical overexertion symptoms come on: the flu-like feeling, a pounding headache, air hunger and exhaustion — as though I had post-exertional malaise from digesting.

    In my opinion, postprandial distress syndrome (PDS, one of the two main sub-types of functional dyspepsia) is closer to what I am experiencing than gastroparesis. However, I have been taking domperidone before my meals for months to accelerate gastric emptying, so this biases my assessment; also, to my knowledge, there is no indication that in PDS, digestion becomes harder with each meal.

    I have a gastric emptying scintigraphy scheduled next week to check for gastroparesis. However, the test meal is about as caloric as one of my usual meals (345 kcal), contains barely any fats and I will have it after being fasted overnight, i.e. the time of day when I digest the best, so I expect that it will come back clear.

    Has anyone run into the same issue? Might it be purely due to ME and/or dysautonomia (I have POTS)?
    Last edited: Jan 27, 2023
  2. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    I'm so sorry to hear that you are having to deal with this difficult problem. I'm so often amazed to hear that someone who makes really useful posts is doing that while going through so much.

    I can't offer much in the way of insights, but I have had times during my illness when I have experienced post-prandial discomfort every night after my evening meal. There's pain, particularly on breathing in, and, it's a bit like a mild shock*, my body goes cold, I need to be lying down, I have trouble thinking and I feel very fatigued. It's like, asking the body to digest while doing anything else is too much.

    * to be clear, not an electric shock, I mean when the body sort of shuts down.

    This is uncomfortable and annoying, but it didn't materially affect my daily food intake. So, the severity of it is not comparable to your situation @cassava7, but I thought I'd mention what I have experienced, as it sounds a bit similar. On those days when that was happening, my morning measures of POTS and shock index were worse, and it was correlated with a bad day generally, either that day or the next.
    Last edited: Jan 25, 2023
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  3. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
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  4. cassava7

    cassava7 Senior Member (Voting Rights)

    Thank you @Hutan. I have read some of the literature on functional dyspepsia and, interestingly, it mentions duodenitis (inflammation of the duodenum) which showed up on a gastroscopy that I had two months after getting a bad bout of gastroenteritis on a trip abroad in 2018. Gastritis also showed up on biopsies. This infection worsened my gradual ME onset.

    Annoyingly, the medical team at the hospital wrote me off with this “functional digestive disorder” diagnosis even though they did not do a gastroscopy, which the Rome IV criteria require in order to diagnose functional dyspepsia. They had planned to do one but cancelled it because I could not attend the pre-intervention consultation with the anesthesiologist on the day of my arrival. They did not know that I am bedridden so they did not plan for transportation to their office.

    In any case, I feel stuck between a rock and a hard place. My options are either eat enough, suffer these digestive symptoms and get PEM, or eat less and feel better but continue to lose weight. The third option is nasojejunal feeding but the medical team is opposed to it for now.
    Last edited: Jan 25, 2023
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  5. belbyr

    belbyr Established Member (Voting Rights)

    My biggest complaint is GI issues and I feel for you. Even my esophagus is affected. Chronic nausea, bloating, pain, IBS, etc.

    I'm different because I can handle fatty foods. My smart pill test showed normal, but one of my gastric emptying tests showed 'rapid'. It's been a medical mystery that Mayo, Wake Forest, and University of Louisville have not been able to fully figure out. We know I have POTS and it is most likely related. I'm supposed to go to Vanderbilt sometime later this year to try to connect those dots, since I live in TN. Nothing doctors have prescribed has helped except Ativan to some degree.
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  6. boolybooly

    boolybooly Senior Member (Voting Rights)

    I am concerned that you get the help you need and hesitate to talk about something I dont know anything about, but since you ask and trusting in your evident powers of discrimination there is something about your description @cassava7 which resembles problems I have been having in recent years with post food migraines.

    I have been able to reduce my problem significantly but not eliminate it by treating it as an inflammatory response to food antigens causing vasoconstriction. It began before COVID but COVID made it worse, I think because it made my inflammatory tendency worse by adding to my recurring viral load, which is very evident in my case.

    My condition might not seem similar to yours on the face of it, as I have no problem with lipid digestion but that could be to do with interrupted blood supply to the liver and gall bladder bile secretion in your case (have they checked for gall stones?). If eating causes systemic vasoconstriction then it could affect organs to varying degrees based on the vascularisation of the individual patient.

    The reason I think it is an inflammatory response causing vasoconstriction in my case is that I find the following interventions have all been helpful and they point to this. I am not saying it is so for you and this is not intended as advice for you but I feel I should state my reasoning so you can consider it.

    Through using an exclusion diet and correlating new foods with headaches, testing repeatedly, I find I cannot eat a lot of things now I used to eat freely, I mean a lot. Though funnily enough I am fine with cassava gari and tapioca starch, but not with potato or tomato (all nightshades cause malaise with swelling and ulcers in my mouth) nor wheat or oat (gluten seems to contribute to other reactions) nor maize corn of any kind even in tiny amounts (migraine trigger possibly from lectins), nor large amounts of any vegetable or animal protein nor much smaller amounts of chicken lamb and pork nor nuts. Beef is best for me in small amounts and eggs are OK singly. Legumes are only tolerable if very well cooked and not too much.
    (EDIT nor soya, processed or not)

    I found cutting out white sugar & fruit sugar (due to their proinflammatory effect) definitely helps.

    When I eat protein now I do best to supplement with digestive enzymes including bromelaine++ which does seem to help. I dont know if it is breaking up antigens or microthrombosis but it helps.

    I also supplement to support vasodilation with CoQ10 and Mg bisglycinate along with vitD to assist Ca/Mg absorbtion, Bvits incl B12, VitC, high nitrate veg like carrot and beetroot juice and celery (also for coumarin as blood thinner). I find vitabiotics "CardioAce", standard type, a good all round support.

    I also supplement and choose foods for anti-inflammatory aims, like rapeseed oil due to high Omega 3 ratio, I avoid sunflower with high omega6. Zn also seems to help keep the TH2 TH1 balance.

    I avoid dairy coconut palm MCT oils which seem to TH2 shift me quite significantly and set me up for inflammation.

    Each of these measures has helped reduce the migraines a little. When they were at their worst it felt like the blood in my brain was being sucked or squeezed out but I found heat therapy helped and that is a clue because it promotes vasodilation. I find I often have to keep my ambient temperature at 25-26°C to prevent a downward spiral of vasoconstriction and circulation deficits.

    I found Ca supps caused migraines and reasoned it was competing with Mg which is a vasodilator. I often find a dose of Mg has a palpable beneficial effect.

    I dont know what to make of all this and am still trying to process it mentally and comprehend what is really going on but I felt it best to offer these observations and theories to the discussion rather than stay silent.

    Have you investigated food intolerances or applied an exclusion diet?

    What is in the nasal tube feed, is it chemically pure or does it retain antigenic molecules, or MCT lipids?
    Last edited: Jan 27, 2023
  7. Milo

    Milo Senior Member (Voting Rights)

    Hello @cassava7, I am so very sorry you are dealing with this huge problem and have not found relief or even cause so far. I hope you can find answers in the tests that you are undergoing.

    I am not claiming to have answers for you, and you may already have explored these avenues, but I wonder whether digestive enzymes have been tried, and whether gallbladder and pancreas disease have been ruled out ? Digesting fats is one of major role of the liver through secretion of bile.

    Sending my best wishes.
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Hello @cassava7.

    I am so sorry you are doing so poorly.
    What a lot to deal with!

    I too wonder if you've had testing for gallstones. As well as liver function. I could say to myself, surely these have been tested for, and not mention them, but then stranger things have happened in medicine, as we know!

    I have had a barium swallow a couple times, and a gastroscopy twice. I would imagine you've had these. And, I've had a couple abdominal X-rays that were informative.

    I used to use Domperidone. I've also used digestive enzymes - these helped. Probiotics also help my digestion. Milk thistle helps as well.

    I have also tried a food allergy elimination diet, and hypoallergenic liquid meal drinks.

    I find dairy and gluten really play havoc with my digestion. I'm doing the FODMAP diet, and that helps, but I haven't eliminated all the digestive issues.

    You mention PEM after eating. For years I frequently had post prandial PEM. After meals I would become so fatigued I was pretty much immobilized. My cognition became worse then as well. So a crash after meals, that lasted a few hours.

    I had IBS for many years prior to ME, and also have POTS.

    Maybe Dysautonomia International might have some helpful ideas about digestive issues. Avoidance of dairy and gluten is suggested on that website.

    I wish you well with your search, and hope you receive excellent help!

    Take care,
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  9. cassava7

    cassava7 Senior Member (Voting Rights)

    Thank you all for your kind replies. I have tried the Super digestive enzymes from Now Foods to no avail, and my liver function is being monitored regularly by the hospital team as I am being refed and is fine.

    The gastric emptying scan showed that I do, in fact, have gastroparesis. The radiologist told me that my stomach retained about a quarter of the test meal (2 mini toasts with jam and butter and a small egg white omelet) after 4 hours, whereas the normal range is under 10% — and this was on a “good” day with regards to digestion.

    The exam was difficult, as the trips to the hospital and back home were long and I had to stand one minute every time my stomach was scanned (every hour after finishing the meal), but I am glad I had it.
    Last edited: Jan 30, 2023
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  10. Trish

    Trish Moderator Staff Member

    That sounds like it was worth doing. I hope this means the doctors will take your needs more seriously and help to find the best solutions for you to get the nourishment you need.
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  11. belbyr

    belbyr Established Member (Voting Rights)

    Now that you know you have gastroparesis, you can seek out a motility specialist. Are you in the U.S?
  12. cassava7

    cassava7 Senior Member (Voting Rights)

    I hope it will give me more leverage to ask for a nasojejunal tube. Contrary to the nasogastric one they have placed, this would bypass the stomach by feeding me directly into the small intestine. The medical team has been opposed to it, so I don’t know how it will go.

    I am in Paris, France. There is a public hospital here that specializes in GI motility disorders, including gastroparesis, and I have asked my doctor if he can refer me to it.
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  13. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

    Sorry to hear that you're going through this, and that they gave you a crappy functional diagnosis. I don't think what you described is a symptom of ME.

    How did the staff at the hospital treat you, were they sympathetic?
    bobbler likes this.

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