pancreatic divisum, gastroparesis, TPN

Pancreatic Divisum with Gastroparesis and Bowel Dysmotility Requiring TPN

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My health issues began 10 years ago, after a holiday Turkey. I was 29 and had just experienced a relationship break up. At the time I was eating bad food and drinking lots of alcohol. On the last night, we went to a different hotel. After visiting the mud baths, we were starving and ventured to a food vendor outside. This was a mistake. On the second day home, I didn’t feel well and had developed a very bad urinary tract infection. The infection had cleared but then at about two weeks, I developed a weird scratching feeling under my right rib. When the pain worsened, I saw doctor. I said that I had just returned from holiday and so he ran some general blood tests, but found nothing.

The pain continued to worsen and I struggled to eat. It felt like I had gas in my upper intestine and it’s pushing on my vagus nerve and diaphragm so I can’t breathe. Then, due to low acid, nothing can leave my stomach. I was sent for an endoscopy and colonoscopy. These two came back negative. The doctor said I was depressed, as I was now down 8 stone, and that I had IBS.

During this time, I was nauseous and became anxious for no reason. My vision was blurry and I felt like the food I ate wasn’t digesting. I was becoming so ill, that I could not function, so I left my job and returned to my parents’ house. The doctor there put me on Zoloft. Within a few weeks, I slowly managed to eat. Within two months, I was back to normal but would get these massive flares up now and again. I would become nauseous develop severe anxiety for a day, but then it would then pass. I noticed even though I went to the toilet I would never pass gas, but didn’t think much of it.

As I felt better, I stopped Zoloft. Within three months the pain was back, but I could still eat. This time the Zoloft didn’t work. My friend had tramadol and that was the only thing that stopped the pain. So the GP then gave me tramadol.

I was on tramadol for 4 years. I couldn’t drink alcohol, as this made it worse. I continued to have tests and the pain was still bad. I had MRI with secretin that showed pancreatic divisum, a congenital condition where the ducts have not fused but doctor didn’t feel it was the problem. Maybe he was wrong. Pancreatic divisums are associated chronic pancreatitis, which is in turn is associated with gastroparesis and upper bowel dysmotility, both of which I had. I also went to a pain clinic, but nothing worked. I had a gallbladder function test and CT scan, and again, everything was fine. Nothing showed up anywhere.

Gallbladder Removal, Metronidazole, and My Continuing Decline

In 2017, the decision was made to remove my gallbladder. I was told it might not help, but I felt I had no other option and so out it came. I had cholestasis but no stones. The doctor commented that I was constipated all the way round my colon and thought that might be the issue. I was okay for a few weeks and then things turned bad. I can no longer digest fats. Attempting to eat any fat gives me agony. I get cramping in my bowel.

After my gallbladder was removed, I couldn’t eat due to the pain. I decided to see a nutritionist and had a stool test. The test showed Klebsiella, a few other nasties, and candida. I was put on grapefruit seed extract and Uva Ursi. I started passing foul smelling gas and a lot of stool was coming out. I began to improve. I felt hungry again and began eating the rainbow, as they say. I told the nutritionist that I felt better on the grapefruit seed extract and was told begin taking it every day. This was too much and it led to increased bowel cramps and then vomiting. Every time I took the herb, I would get nauseous and vomit. She told me to stop and take probiotics. This too made me feel worse. I now could not tolerate anything. She gave up told me to go to a doctor.

So I went to a doctor and she gave me metronidazole (Flagyl). I took it. It was awful. The anxiety was terrible and the pain was insane. When I finally stopped, I was in agony whenever I ate, so I took some marshmallow root and slippery elm. This seemed to help a lot. For one week, I could eat. By the end of the week though, I was awful and back to not being able to eat or go to the toilet.

I would get electric shocks and jolts in my sleep to sounds and noises. I had intense nausea and pain and could only tolerate liquid sugary drinks. I finally got a referral to a gastrointestinal specialist. She agreed to do gastric emptying study. I have severe gastroparesis to solids and liquids and was given Domperidone. I took some probiotics and stayed on a soup diet. This helped for 4 weeks but then it all fell apart again and I was back to the point of needing a feeding tube.

I had a nasal jejunum (NJ) tube in the intestine in 2018. This made me worse and the pain in my gut was insane. I also had a foggy brain and experienced body jolts. They gave me a lot laxatives. I was left in this state for a year until my weight dropped to 42 kg. At that point, I was put on total parenteral nutrition (TPN), with a central line that sends nutrients directly to the bloodstream. Pancreatic divisum, gastroparesis, nasal jejunal tube

At this point, I did find a functional doctor, who was pretty sure I had SIBO. So just before TPN, we tried Rifaxamin and metronidazole. I only lasted two days. I felt so drugged. I didn’t feel better until I stopped. Then I felt ok for a few days but that was it.

On TPN, I gained some weight but still felt drugged. A few months later, I got a line infection, developed sepsis, and again in April. I also had a fungal infection, and was given high doses of antifungals by IV. I actually felt a bit better on this. I was craving chocolate, crisps. I wasn’t hungry but just wanted crap food.

Unexpected Pregnancy

I went back to my parents. I was with my partner and I was very ill now. After a month, my bloods were all over the place I didn’t feel right. Then in the August 2020, I picked up. I was very tired, but I felt a little happier. Then I started getting a bulge in the bottom of my gut. The doctor sent me to hospital. The next day was a shock. I was pregnant. With twins!

We decided to go ahead as I was already 20 weeks pregnant and this was my only chance of having children. When I hit the 3rd trimester my gut was gurgling. Gas came out and I could taste food but still couldn’t swallow as I would fall in to a coma type sleep.

I had the children by caesarean section. Afterwards, my body was just pouring out orange bile in the toilet. I was in agony. A few days later, I got Covid. I experienced no real symptoms, but my liver enzyme was over 400. Disaster struck again few weeks later when I developed sepsis again, and then again, a few weeks later. Both times I was treated with antibiotics, however the second time I went in to anaphylaxis.

Since pregnancy, my symptoms have worsened with increased anxiety and heart palpitations, especially in the morning. I still cannot eat or drink, as I fall in to my coma sleep. Every night I’m sweating and getting horrendous nightmares.

Treatments and Tests

Below are things I’ve tried and tests I have taken.

Alternative Treatments

  • Acupuncture – I pass out in my coma sleep after, have horrible nightmare and feel terribly anxious.
  • Cognitive behavioral and eye movement desensitization and reprocessing therapy
  • Visceral massage – Calmed me a little but the gas just got stuck and wouldn’t come out.
  • Hypnotherapy
  • Reiki
  • Chinese herbs again pass out asleep

Medications and Supplements

  • I currently take 2 mgs Motegrity but need an enema to get just gas out. But now it’s just passing through as water
  • Magnesium threonate. This helps with the anxiety
  • Ginger
  • Any herbs or supplements and I’m passing out asleep. It’s like my body can’t cope with processing it and shuts down.

Tests

  • Oats – shows high arabinose aspergillus, candida (I have pityriasis versicolor all over my body – a skin yeast infection) and low, B12, B2, B6. Again, I pass out or react with massive anxiety feeling when I take supplements
  • High oxalates
  • Methylation test shows that I slightly over-methylate.
  • B1 checked normal
  • Genova stool test: massive dysbiosis with high Bacteroides, Klebsiella candida, a few other really bad bacteria and hardly any good bacteria

Armin Labs Test

  • Low cd57 – it was 8
  • Coxsackie virus
  • Echo virus
  • Previous Epstein Barr virus not current

As I mentioned, I am on TPN. The ingredients of my nutrient packs are below.

The doctors have run out of ideas and so I am publishing my story here in the hope that someone out there will be able to help. Any suggestions on how to resolve these issues are appreciated. Thank you.

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15 Comments

    • Thank you for commenting. The issue I face is that I’m tarnished with a mental health issue and chronic fatigue.

      I’m having real problems trying to convince drs I need b1 and other vitamins.

      It’s got very complex. So all I get told is that I’m complex and then left on parental nutrition.

      I’m in the UK and conventional medicine just doesn’t help. Or acknowledge any functional medicine

  1. I have had low cd 57 at beginning of my health Journey. But I have found out that that test really is low in mold patients not Lyme which I was diagnosed with in 2011.
    You more than likely to have Sibo being that you’ve had your gallbladder removed and you now have had a C-section.. I had both of those too. I am currently treating sibo I have the constipation type but I am using herbs this time. I’ve done anabiotic‘s and have since found out they really do not help the constipation type. I also will never do antibiotics again since they have made my condition worse. I do hope you can stabilize and find a way to treat things from a natural perspective.

  2. Amazing perserverance, and my hat’s off to you, Annmarie.

    Ben Lynch, Dirty Genes, has helped many people with gut-brain issues, but your case seems really multivariant.

    Here, though, an MD doing something great, as a way to at least show you and the readers of your story there are real people working the holistic route to nutrition and health. Lots of work on glyphsate, and other soil poisons were put into our “systems.”

    https://youtu.be/hkNhFY-s4GM

    Zach Bush, MD is triple board-certified physician specializing in internal medicine, endocrinology and hospice care. He is the founder of Seraphic Group, an organization devoted to developing root-cause solutions for human and ecological health in the sectors of big farming, big pharma, and Western Medicine at large. He is also the founder of Farmers Footprint https://farmersfootprint.us/​, a non-profit coalition of farmers, educators, doctors, scientists, and business leaders aiming to expose the deleterious human and environmental impacts of chemical farming and pesticide reliance — while simultaneously offering a path forward through regenerative agricultural practices.

    Dr. Zach Bush’s work is critical in exposing the truth about our toxic food system or its health impact. To learn more please visit https://zachbushmd.com/​

    +–+

    Hang in there. I hope someone reading this can assist you.

  3. Hi Ann-Marie: I am astonished by your bravery and endurance. And so very sorry for your suffering.

    I look at the physics of the universe as it applies to the human body. I have a peer-review paper that is forthcoming. I am looking at something called Emergence Theory; it’s an offshoot of the Holographic Principle, proposed by Nobel laureate Gerard ‘t Hooft in the 1990s. It suggests light is the background against which we perceive.

    Emergence theory is not balls of matter in a sea of air. It’s more like precipitates in solution. When I am high density, my environment is by definition low density. But if I’m high density and my environment is low density … that’s an explosion! I need external tension to keep from flying apart. But angiotensin and aldosterone can cause me to retain sodium and this increasse my density, so I get caught in a loop. And when I’m low density, my environment is by definition high density. But if I’m low density and my environment is high density, that’s an implosion! I can use anti diuretic hormone to provide internal tension, but anti diuretic hormone, which makes me retain water, will lower my density! Another loop. (ME/CFS?)

    When we don’t keep pace with the speed of light — if we’re toggling either too quickly or too slowly — our mass-energy equivalence gets skewed toward matter. Under these conditions, instead of electricity and magnetism in the body, we get their material “precipitates”: copper and iron. When we precipitate out of solution (e.g. the rocky planets), it is a paradox: We are too cold because we are too fast. When we explode (e.g. the gas giants), it is also a paradox: We are too hot because we are too slow. When we die from frostbite, it is a kind of burning.

    According to this paradigm, frostbite (to be so cold, time explodes) is the opposite of cancer (to be so hot, time implodes).

    When time (the core metabolic rate) explodes too much or explodes too little (implodes), we become skewed toward matter. Once we are skewed toward matter, we become metabolically trapped. To increase our speed (i.e. to eat), will cause us to further precipitate out of solution, which will in turn require us to further increase our speed. It’s a kind of metabolic vortex.

    The speeds of light and time are twinned. Light can actually spin so fast that time moves backward. This, I believe, is what is happening with you. Interestingly, “time moving backward” is also what happens, according to this paradigm, during embryogenesis. (And pathogenesis. And oncogenesis.)

    “Time moving backward” does not mean events happen in reverse. It simply refers to how light is being rendered. When light is being rendered from matter, time speeds up (moves forward). When light is being rendered from energy, time slows down (moves backward). When my Krebs cycle spins backward, in reverse, I endogenously produce oxalate, a crystal found in plants capable of photosynthesis. Instead of using matter to make energy, I use energy to make matter.

    The first time I tried high-dose thiamine, I had a miraculous recovery. I cried, because it felt so good to feel normal. A few months later, when I tried high-dose thiamine again, I entered an odd metabolic state: a slow-motion grinding in my gut that took my breath away. I believe I was going so fast that time was slowing down. I had reached a metabolic “tipping point” where my intestines were moving so fast, they were actually stopping.

    In other words, time can either be fast and alkaline (melatonin, ketamine, general anesthesia). Or it can be slow and acidic (dimethyltryptamine, LSD, psilocybin). I suspect you are too fast and alkaline. In fact, you are so fast and alkaline you are close to the metabolic tipping point that is exploited in general anesthesia to help us lose consciousness.

    I wish I knew what the answer was. Unfortunately, I am involved in theoretical research. These ideas, though they are about to be published in peer-review, have not yet been put through the rigors of scientific testing.

    I wonder what is used in the “reverse” of general anesthesia, to bring patients back to consciousness again? I suspect they must be altering the pH or the pressure in such a way that it is altering the brain’s understanding of time.

    I believe the pineal gland is central to the body’s understanding of light, time, and circadian rhythm. When the body’s core metabolic rate is either too slow or too fast, the pineal gland can become calcified, which damages its functioning. Designs for Health iodine with selenium helped my pineal gland. Iodine can help the body detoxify fluorine (found in many prescription drugs), bromine, and chlorine. I tolerate iodine with selenium extremely well because I am a very slow oxidizer with high iron reserves (Irish heritage). Iodine with selenium is not for everyone.

    My body needed to slow its metabolic rate (ie to generate less acid via metabolism) but my brain would not allow it to do so unless it first perceived acidity. But when I consumed acidity (e.g. sodium), it could make my adrenals increase my metabolic rate — which was the opposite of what I needed. BUT, if I consumed alkalinity (e.g. potassium, the adrenal “brakes”), the perception of alkalinity would tell my BRAIN that I should speed up. So nothing I ate or drank was working. The same electrolyte seemed to be being interpreted in opposite ways by my body and my brain.

    A micro dose (actually a half of a micro dose) of psilocybin helped me out of the metabolic tailspin. Like LSD (“Acid”), it was allowing my brain to perceive the acidity signal, which then allowed my brain to slow the core metabolic rate. Unfortunately, I had started spinning so fast that nothing was reading to my brain as acidity; everything read as alkaline (or even as “moldy” to me).

    Without perceiving an acidic terrain, my brain seemed to be under the impression that slowing the metabolic rate would cause me to dip into metabolic alkalosis, which is life-threatening. Of course metabolic alkalosis and acidosis are both life-threatening, and if the pineal gland is damaged, and cannot accurately gauge the Planck length, it cannot accurately gauge the metabolic rate of the universe. It perceives alkalosis and acidosis where there is none.

    In other words, if I’m spinning so fast that I’m in subclinical metabolic acidosis, I need to keep my pH too alkaline. But having an alkaline pH will trigger my brain to spin too fast. And if I’m spinning so slow that I’m in subclinical metabolic alkalosis, I need to keep my pH too acidic. But having an acidic pH will trigger my brain to spin too slowly. We do not perceive subclinical metabolic acidosis in the same way we would not perceive that ice that was spinning at water’s speed was not water. Beneath the veneer of perception, it is very fast ice.

    Hope this helps.
    xxAlethea

    • PS I realize you are not able to take supplements. Iodine is something that can be taken transdermally (i.e. applied to the skin). However, in its liquid form, it is lacking the selenium, and when I take it without selenium, it has the tendency to make my heart beat too fast. Just FYI.

      I write more on these topics (human health + physics) at Welcome to Heaven dot com.

  4. I would recommend researching honokiol. It regulates the gut biome, promoting good bacteria and suppressing bad bacteria. It is effective against yeasts.

    “Honokiol, a major polyphenol isolated from Magnolia officinalis, has been shown to inhibit the growth of Candida albicans.”

    https://pubmed.ncbi.nlm.nih.gov/33263334/

    “The current results indicate that magnolol and honokiol enhance the intestinal anti-inflammatory capacities, elongate the villus height and crypt depth, and reduce goblet cell numbers to inhibit the intestinal epithelium apoptosis and effectively protect the intestinal mucosa. These results show that magnolol and honokiol protect the intestinal mucosal integrity and regulate gastrointestinal dysfunction.”

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5990993/

  5. Sorry to hear how much you are suffering. My son developed severe issues which sound very similar (pain, nausea, vomiting, acid reflux, burps getting stuck, wind) that started when his methylation got working. The hospital wouldn’t consider any feeding tubes so I had to experiment to find a solution. B5 had an almost Instant effect!! He had to build it up slowly as it caused adrenal issues to start with, but he’s been needing 100mg for the past 2 years to keep his guts under control. Too much causes extreme anxiety.

    https://pubmed.ncbi.nlm.nih.gov/27515213/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC438859/pdf/jcinvest00624-0111.pdf

    https://onlinelibrary.wiley.com/doi/full/10.1002/jgh3.12212?fbclid=IwAR3K8OC9d02hW-MC29T57vnIhG6JS4c9N9R_eXwHfcRt5oJmwT-WS3u04jM

    https://lpi.oregonstate.edu/mic/vitamins/pantothenic-acid

    https://www.drlamcoaching.com/blog/pantethine/?fbclid=IwAR0AG0Rscgqia7iuZ3nMbYLDbmjtBuWeR-qub0b6n2DoXF6NaUN5QhplemM

    https://journals.sagepub.com/doi/pdf/10.1177/1533210110392944

    https://books.google.co.uk/books?id=z7TZta-dejQC&pg=PT91&lpg=PT91&dq=dr+atkins+pantethine&source=bl&ots=MpZzai_JZK&sig=ACfU3U2P6TMzdiuW4L3a2l28cr6s5JzXoA&hl=en&sa=X&ved=2ahUKEwix7bL5nqnqAhVJTsAKHZPeBl4Q6AEwAXoECAIQAQ#v=onepage&q=dr%20atkins%20pantethine&f=false

    Massaging his valves was helpful https://www.healingnaturallybybee.com/abdominal-ileocecal-valve-massage

    Some markers to look for in low B5 is high cholesterol, in an OAT it is low pyruvate and citrate.

    My very best wishes

  6. I have a similar history except mine includes several serious lower abdominal surgeries removing sections of small and large intestines that then led to internal scar tissue which glued organs together. This created chronic SIBO, dysmotility, dysbiosis,gastroparesis, cramping, constipation, gas, weight loss and a fear of eating. I’ve tried everything you did and more, having traveled far and wide spending money I couldn’t afford bc I thought I was going to die anyway so why not use it trying to live? Like you things worked for awhile then stopped working. I also have hEDS, some mcas, chronic Lyme, lupus, cfs and significant family stress. What has helped the most is high dose thiamine with cofactors of other B vitamins, large amounts of magnesium and initially of potassium. I need a full complement of other vitamins also.

    I was functioning pretty well over the summer altho still very low energy, I could cook, eat small meals, walk 1-2 miles a day and sleep ok. Recently my digestion failed badly and I became convinced I was headed for yet another emergency abdominal surgery. I had SIBO, severe Gerd, horrendous upper abdominal cramping, constipation alternating to diarrhea, trapped wind, belching and minimal appetite. I tried antacid prescriptions but they only helped a little and I was concerned about lack of acid to digest good and destroy pathogens so I used only briefly on and off. I switched to a mostly liquid and soft foods diet, low fodmap and began herbal SIBO treatments of oregano oil, olive leaf, black seed, black walnut and other herbs plus separately manuka honey with extra propolis. It sounds like you have fragile mucosa as do I – if so, we need to be careful of treatments that irritate the gastrointestinal tract. Its probably why the marshmallow root and slippery elm helped you – both very soothing. The manuka honey, propolis, DGL and an herb called Bidens pilosa helped me with this tremendously.

    I’ve tried an enormous amount of body work especially myofascial and visceral release of my abdomen which in the past have been somewhat helpful with dysmotility. Recently however with this very bad GI flare, I started seeing a new acupuncturist who is extremely skilled, having taught in China. We worked initially on my belly bc that’s where the worst symptoms are, but bc the pain was severe enough to radiate to my back, and I have back pain anyway, we started focusing on spinal acupuncture. To my utter SHOCK, almost immediately afterwards, food started to move through my GI tract and my bowels moved normally after being in a state of on and off paralysis for months! These acupuncture treatments btw were completely different from what I’ve received before and were a bit like trigger point therapy. But not really. In my mind this success is akin to what can be accomplished with chiropractic adjustments that help the spinal nerves to properly innervate their corresponding organs such as pancreas, esophageal sphincter, duodenum etc etc etc. (I avoid chiro tho due to hEDS.)After one of her acupuncture treatments I am so sore for 1-2 days that I almost cry but it then passes and I feel better overall. I don’t know yet if the acupuncture will provide a longer term solution for me but I’m grateful for another tool in the toolkit. Again, I’d been to several other skilled practitioners before so even tho it didn’t work before for you (or me) it can be worth it to keep trying.

    I’m so sorry you are going through such incredibly painful health challenges and I hope that you gain some new ideas and encouragement from posts here. This is a wonderful website that has helped me in my health journey.

    • Thanks. My issue is I can’t even tolerate accupuncture. I seem to shut down. I’m trying to see if I can get more b1 in my tpn. But it’s so hard to get it.

      I can’t even drink water. I’m trying the Gupta program. But I know I need more than that.

      It’s terrifying

  7. If B12 is low and there are GI issues, I would think they would prescribe parenteral (injected) B12. This could be really crucial if autonomic nerve damage is worsening the dysmotility! Getting B12 parenterally can help nerves heal (I needed extra sleep when my nerves were healing, so if the B12 shots prompt sleep, I’m not sure that’s a bad thing). There is a lot of medical literature on this including the reasons why injections, not supplements, are important.

    I am a fan of Motegrity. But I take pyridostigmine bromide (Mestinon) for various symptoms and I feel it does help with gastroparesis for me (which my gastroparesis specialist gastroenterologist said made sense). I think there is a medical literature on pyridostigmine for gastroparesis as well.

    I wonder if it’s possible you have hypochlorhydria or achlorhydria given the dysbiosis, deficiencies, etc., but it doesn’t sound like they tested… for me improving motility and raising stomach acid levels have gone hand in hand.

    • I’ve not had stomach acid tested. But pretty sure it’s non existent

      I have mcas too. I’m worried about injecting as I’m reacting to so much.

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