Gut is compromised, IBS, Colitis, Diverticulitis and Digestive Issues
March 27, 2023 10:29 PM Subscribe
I've been through 3 years of constant pain with my digestive tract and in spite of blood/stool/imaging and colonoscopy, the only definitive answers I've gotten were that there were infections (Blasto), food poisoning (last September which resolved), diverticulitis (last January which resolved) and fluctuating amylase levels (idiopathic). One small stone in gallbladder was found on ultrasound. SIBO still hasn't been ruled out.
IKYNMD, am looking for some good protocols on healing the gut. Colonoscopy - clean. Calprotectin was 85. PCR stool showed constant Blasto - for that GI doc put me on one single dose of Albendezole which didn't have an impact. Campybacter was treated with herbs and diet. Diverticulitis was treated with Augmenten. At the time of the diverticulitis fat stranding on Sigmoid was found. It was a simple case of diver and was sent home after 24 hours in hospital.
Have done numerous CT's for this, and still nothing is found. Am wary at this point to have any more CT's due to the radiation. I really don't know how to proceed. Am heading out for another GI visit, but don't know what other testing could be ordered at this point.
I seem to be sensitive to gluten and so this is now the last thing to be dropped. I have severe pain if I eat gluten but testing for Celiac came back negative a few times.
What I've tried: Glutamine, probiotics, butyric acid, mimosa pudica, aloe - nothing really helps. Mushy stools prevail. No.Matter.What.I.Do.
Any book recommendation that can get me back on a healing track would be appreciated.
IKYNMD, am looking for some good protocols on healing the gut. Colonoscopy - clean. Calprotectin was 85. PCR stool showed constant Blasto - for that GI doc put me on one single dose of Albendezole which didn't have an impact. Campybacter was treated with herbs and diet. Diverticulitis was treated with Augmenten. At the time of the diverticulitis fat stranding on Sigmoid was found. It was a simple case of diver and was sent home after 24 hours in hospital.
Have done numerous CT's for this, and still nothing is found. Am wary at this point to have any more CT's due to the radiation. I really don't know how to proceed. Am heading out for another GI visit, but don't know what other testing could be ordered at this point.
I seem to be sensitive to gluten and so this is now the last thing to be dropped. I have severe pain if I eat gluten but testing for Celiac came back negative a few times.
What I've tried: Glutamine, probiotics, butyric acid, mimosa pudica, aloe - nothing really helps. Mushy stools prevail. No.Matter.What.I.Do.
Any book recommendation that can get me back on a healing track would be appreciated.
Best answer: However for general ideas on what you should be hearing from your doctor, post on Reddit’s gastro subs. r/diverticulitis, r/gastritis, r/pancreatitis are ones I know (the mod for the last is exceptionally knowledgeable). While there, ask if anyone has a recommendation for a GI local to you.
posted by cotton dress sock at 11:26 PM on March 27, 2023 [1 favorite]
posted by cotton dress sock at 11:26 PM on March 27, 2023 [1 favorite]
Best answer: What I've tried: Glutamine, probiotics, butyric acid, mimosa pudica, aloe - nothing really helps. Mushy stools prevail. No.Matter.What.I.Do.
Have you tried stirring a couple of teaspoons of psyllium husk into whatever you eat that might not be ruined by a vaguely oatmeal-tasting powder that makes a slimy jelly when it gets wet?
Psyllium husk is almost entirely soluble fibre, and in the gut it contributes hugely to cohesion and lubricity of stool. If you give your intestines less physical work to do to move their contents along in nice clean peristalsis-optimized boluses, they have an easier time of it and might perhaps give you one too.
I've had much better results from stirring psyllium husk through other things than from taking it as a supplement in its own right (e.g. with water or juice). On its own, it makes a highly cohesive jelly that continues to thicken for quite surprising amounts of time, at which point it becomes resistant to mixing with other things. Taken in large quantities by people convinced that More Is Better, it can actually bring on very nasty clogging. But a teaspoon or two stirred into the oatmeal, or the smoothie, or sprinkled over the cole slaw before applying the dressing, or used as a thickener in a sauce or a gravy, will mix nicely through the stomach contents and end up making some truly excellent poo.
It works really well as an adjunct to insoluble fibre as well. Brown rice with a bit of psyllium husk stirred through after it's finished cooking is an absolute staple for me.
Don't bother with the flavoured versions (Metamucil etc); Tang is not a nutritional supplement. Plain husk bought in bags from the supermarket is the go.
posted by flabdablet at 1:23 AM on March 28, 2023 [2 favorites]
Have you tried stirring a couple of teaspoons of psyllium husk into whatever you eat that might not be ruined by a vaguely oatmeal-tasting powder that makes a slimy jelly when it gets wet?
Psyllium husk is almost entirely soluble fibre, and in the gut it contributes hugely to cohesion and lubricity of stool. If you give your intestines less physical work to do to move their contents along in nice clean peristalsis-optimized boluses, they have an easier time of it and might perhaps give you one too.
I've had much better results from stirring psyllium husk through other things than from taking it as a supplement in its own right (e.g. with water or juice). On its own, it makes a highly cohesive jelly that continues to thicken for quite surprising amounts of time, at which point it becomes resistant to mixing with other things. Taken in large quantities by people convinced that More Is Better, it can actually bring on very nasty clogging. But a teaspoon or two stirred into the oatmeal, or the smoothie, or sprinkled over the cole slaw before applying the dressing, or used as a thickener in a sauce or a gravy, will mix nicely through the stomach contents and end up making some truly excellent poo.
It works really well as an adjunct to insoluble fibre as well. Brown rice with a bit of psyllium husk stirred through after it's finished cooking is an absolute staple for me.
Don't bother with the flavoured versions (Metamucil etc); Tang is not a nutritional supplement. Plain husk bought in bags from the supermarket is the go.
posted by flabdablet at 1:23 AM on March 28, 2023 [2 favorites]
Best answer: I have diverticulitis. I have been hospitalized for it in the past.
To manage it:
Bulletproof prebiotics every morning. Turkey Tail mushrooms. Drink nearly gallon of water every day. Zero sugar. Ketogenic diet. Drink electrolytes (one in the morning, one in the evening). 30 minutes a day of resistance training (lifting weights) five days a week. Fast during the day. Eat a meal in the evening made from real food. No alcohol.
posted by King Bee at 4:22 AM on March 28, 2023 [1 favorite]
To manage it:
Bulletproof prebiotics every morning. Turkey Tail mushrooms. Drink nearly gallon of water every day. Zero sugar. Ketogenic diet. Drink electrolytes (one in the morning, one in the evening). 30 minutes a day of resistance training (lifting weights) five days a week. Fast during the day. Eat a meal in the evening made from real food. No alcohol.
posted by King Bee at 4:22 AM on March 28, 2023 [1 favorite]
Best answer: Pumpkin is a tremendous poo improver as well. Good balance of soluble and insoluble fibre there. Less dramatic dose response than psyllium husk but well worth incorporating into any dietary niche where it might fit. Can be cut, peeled and steamed in bulk, then frozen in portions for a quick microwave thaw and addition to salads, or to dishes that might otherwise end up a little meat-heavy.
posted by flabdablet at 6:14 AM on March 28, 2023 [1 favorite]
posted by flabdablet at 6:14 AM on March 28, 2023 [1 favorite]
Best answer: Ah wanted to mention - one possibility, which I’m not sure would be picked up on a CT, is “smouldering” diverticulitis, whereby some (ie slightly less) inflammation continues on an ongoing basis after a flare. If the inflammation is always in the same circumscribed location, that could be an indication for surgery, we were told. (But not if the diverticulosis underlying the -itis is everywhere, because then you’re just more likely to get a recurrence, plus deal with surgery and its risks.) I believe a colonoscopy would indicate the need for this if the CTs didn’t.
posted by cotton dress sock at 8:03 AM on March 28, 2023
posted by cotton dress sock at 8:03 AM on March 28, 2023
Response by poster: @cotton dress sock - how is smouldering diver dx'd?
posted by watercarrier at 8:04 AM on March 28, 2023
posted by watercarrier at 8:04 AM on March 28, 2023
My understanding (and this is based off one conversation with an ER doc, which I’m hoping I adequately grasped) is that it would be diagnosed through a colonoscopy.
posted by cotton dress sock at 3:15 PM on March 28, 2023
posted by cotton dress sock at 3:15 PM on March 28, 2023
Forgive me if you've already had these tests (I note you said you've found bacteria through PCR) but it might be helpful for you to do a GI Map. The gastro subreddits are always recommending it as it goes into far more detail than hospital tests and also puts the results in your hands, so you're not waiting on a doctor to give them to you (though you may want to consult a doctor to interpret them).
Have you been tested for h pylori through endoscope testing? I imagine you have, given your history, but just in case do ask for it. It can be the cause of many gastro issues and isn't always picked up in a stool test alone.
posted by fight or flight at 3:28 AM on March 29, 2023
Have you been tested for h pylori through endoscope testing? I imagine you have, given your history, but just in case do ask for it. It can be the cause of many gastro issues and isn't always picked up in a stool test alone.
posted by fight or flight at 3:28 AM on March 29, 2023
This sounds like my life. What finally seems to be working for me is taking a vitamin B complex with vitamin B1 (thiamine) in it.
posted by MexicanYenta at 10:46 AM on March 29, 2023
posted by MexicanYenta at 10:46 AM on March 29, 2023
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So far, this specialist is considering pancreas involvement, and has ordered an MRCP (specialized MRI of the pancreas). He is also considering microcolitis as a possibility. To test for this, a colonoscopy taking multiple small samples from many places in the colon needs to happen, because the inflammation can’t be visualized during the scope. Not every GI will take enough samples for this, in every colonoscopy. That’s all I have to share for now.
I would just recommend digging to find the most cautious, thoughtful, and skilled GI available. I hope the person you’re seeing soon is one of those. (If you’re disappointed, absolutely scour www.ratemds.com, locate the authors of relevant research papers, ask everyone you know. Because whichever test is recommended by us, ultimately the doctor has to be on board with it - and motivated to treat you.)
Really wish you the best.
posted by cotton dress sock at 11:22 PM on March 27, 2023 [1 favorite]