I’ve had gastrointestinal issues all my life. They started when I was a newborn; doctors diagnosed me as ‘withholding’, which is a polite way of implying that somebody is causing their own indigestion by refusing to take a shit. My distraught parents consulted several doctors who reaffirmed the original ‘diagnosis’ and finally resorted to administering enemas after other approaches had failed.
Presumably driven to innovation, half-mad with pain, sometime during my toilet training I arrived at a hack solution on my own. Rather than sitting on the toilet, I adopted an improvised ‘squatting’ posture with my feet planted on the seat, which my mother affectionately christened ‘The Spider-Man pose’. I had no way of knowing at the time, of course, that a good chunk of the modern world does their business in a similar-if-somewhat-less-elevated position.
The new posture was a winner in the sense that I could actually move stool. Unfortunately, it did fuck all for my chronic constipation and extreme pain. So my adolescence was full of grueling, agonizing bowel movements that persisted into my teens. For me, it was ordinary to go six or seven days without shitting and then spend a tortured 2-3 hours in the bathroom, passing a frankly terrifying amount of stool in a single sitting and then recuperating for several hours afterwards. This sounds like a gross exaggeration: Let me assure you it is nothing of the sort.
Things proceeded without much fanfare in this fashion for years. I saw several doctors during high school and they amended the consensus diagnosis from Withholding to ‘Irritable Bowel Syndrome’, the less-glamorous-but-equally-nebulous baby sibling of IBD (Irritable Bowel Disease). I was prescribed laxatives, antibiotics and steroids in approximately equal portions on the whim of the prescribing physician. I was directed to the food pyramid and instructed to adjust my intake towards more fiber and grains.
None of this helped and my condition worsened. It wasn’t until after I had graduated high school that things became truly intolerable. By this time I had developed a bad case of hemorrhoids, was occasionally shitting blood, and suffering from chronic abdominal pain and persistent fatigue. My parents trucked me around to several specialists (gastroenterologists), each of whom reaffirmed that I had IBS. I had two colonoscopies, both of which were inconclusive because my body wouldn’t properly flush even when I was following the cleansing instructions zealously (I imagine they weren’t written with people who only shit bi-weekly in mind).
It was about this time I started to get seriously desperate. All my life I’d been pretty athletic, but I was running out of energy to do anything and that worried me. I broke out the laptop and started digging, trying to keep my wits about me but willing to try more-or-less anything for which I could imagine a plausible mechanism. At this point I had moved out of my parents house and was poorer than most readers here will be able to properly envision, so I didn’t have access to a doctor. The only lever I had was my lifestyle, so I adjusted my diet and tried several supplements (the promising few I could afford). After running the gamut, I hit a bit of good luck.
On a hunch, after reading Gary Taubes’ Good Calories Bad Calories, I started pulling grains out of my diet: The effects were immediate and powerful. My energy levels returned to nearly normal and, for the first time in my twenty-something years of life, my bowel movements got a little easier. I remember running downstairs, tears streaming down my face, to tell my roommate that I had figured it out: I was allergic to gluten.
My initial conclusion was, of course, embarrassingly wrong. Removing wheat had been a good first step, but it wasn’t a cure. My symptoms had been consistent (and consistently worsening) my entire life, but now they came and went, seemingly at the whims of a capricious god, with no rhyme or reason whatsoever. Anybody reading this who knows anything about the reward systems of the brain is going to understand immediately how this engendered in me a sudden, insatiable interest in anything nutrition or gut-health related.
The rabbit hole deepens...
Over the course of much experimentation and several years worth of research I had developed a tenuous control over my condition. The flare-ups and remissions were at least explicable if not fully predictable, and I had become convinced that I was suffering from Ulcerative Colitis (a form of IBD which is really a fancy way of saying Colon Bad: Causes Unclear). Along the way I’d developed a cynical distrust of medical practices (especially in the US and especially where the gut is concerned) as I learned how little is truly known about the human microbiome and how large a role it plays in our health.
Then I had the worst flare-up of my life. I had no energy. I couldn’t get off the couch, and I was losing copious amounts of blood to the toilet. I lost something like 20lbs and if it weren’t for the generosity of my roommates helping to take care of me, I have no idea what I would’ve done.
This went on for about six months until I decided that I would try getting on the formerly useless Medical Carousel again. As it happened, I was able to afford a specialist this time around. They set me up for a colonoscopy and, since I was practically starved already, the results were conclusive this time around: I had Ulcerative Colitis. One of my friends had to explain to the nurse who gave me the news when I came around that—no—she hadn’t upset me, and that I was just excited to be proven right.
The feeling was elation followed by anti-climax; they’d confirmed what I’d already known. Ulcerative Colitis is more of a syndrome than a disease, which is to say that it’s a constellation of symptoms that we frequently see together: It says nothing whatsoever about the underlying mechanism.
What nobody ever tells you about these gut conditions is that they are basically a very slow, unattractive death sentence with a lot of discomfort to look forward to in the interim. The prognosis is something like this: many rounds of consistent steroids, antibiotics and NSAIDS (whichever you don’t react to, if any) to hopefully induce periods of remission followed by unexplained flare-ups until your intestines finally give out, at which point your options are death-by-sepsis or surgically removing them in favor of an ostomy-bag.
Having plunged deep into the available literature, I was resolved to fight the inevitable. By this time, however, I had already tried every fanatical lifestyle change that seemed likely to help. Perhaps you will think less of me for this, but having pored over hundreds of medical journals and listening to specialists discuss what little we know of the gut (which—in its own way—is rather a lot), I have concluded that antibiotics ought to be the very last line of defense, ranked up there with chemotherapy in terms of how much damage they do for the benefit of alleviating your symptoms. At least with chemotherapy, you hope to reduce/remove the underlying problem—antibiotics for an IBD flare-up is really more of a band-aid solution.
Anyway, I was desperate to try something with a little more promise and a little less side-effect. Enter FMTs: It was vexing to discover that here in the United States, FMTs (Fecal Matter Transplants) are an approved treatment to repopulate the gut biome post-chemo, but otherwise unsanctioned; it is apparently a sanctioned treatment for IBD in at least a few other countries. It seemed promising albeit gross. Honestly, most of the pushback seemed to stem from this singular fact: it’s basically disgusting. Having neither the money nor the requisite knowledge to make the arrangements, I discarded flying to another country as an option.
You know what they say about desperate people… (please don’t try this at home I guess)
I’ll attempt to skip the gory details here, but I arranged to perform a homebrew FMT, utilizing a cough-donation-cough from a generous friend of mine who was a stellar specimen of gut health. At the time, he was in the military which meant that he’d recently been screened for all the relevant parasites. In any case, I’d done my homework thoroughly enough to feel confident that I wasn’t going to get myself killed.
The results were immediate. My energy levels came back from all-time-low to better-than-ever, and (sorry) my bowel movements were easy and picturesque for the first time in my life. I stopped bleeding. For those who are curious, there were some unexpected side-effects. Namely, during the subsequent two weeks everything smelt like my friend’s poo (this was apparently an internal thing, nobody else could smell it—WEIRD) and I had sudden, serious carb-cravings; I’d been low-carb for years and this was very noticeable.
It’s been 4-5 years since then and my condition—while not always perfect—hasn’t been nearly that bad since. I occasionally have flare-ups but they tend to resolve themselves and my diet/lifestyle seems to be holding my condition in check approximately 95% of the time. That being said, things seem to be slowly worsening over time and I wonder what I’ll do the next time around. I’ve got no delusions about being cured, since IBD seems to have some sort of underlying genetic component and we’re still pretty foggy on the mechanism.
The whole thing has soured me considerably on the medical mainstream though, and I’m somebody who is staunchly against hokey bullshit like homeopathic remedies. I suspect there’s truth in the nuance here. It’s not as though the scientific method is a bunch of shit, but there’s a lot more that goes into medicine than simple, on-the-ground experimentation. Individual practitioners are experiencing information overwhelm to an extent that was formerly unimaginable and we all know that there are Incentive Structure Issues around drug research and manufacturing.
I don’t know what the moral of the story is. Perhaps that it’s an odd time to be alive. I felt compelled to share my story after reading, but I will admit that—looking it over—I feel pretty exposed. Nonetheless, if there’s a place to share this, it would be here.
I wish every single one of you the best of luck. It seems like we may need it.
That being said, things seem to be slowly worsening over time and I wonder what I’ll do the next time around. I’ve got no delusions about being cured, since IBD seems to have some sort of underlying genetic component and we’re still pretty foggy on the mechanism.
It is bizarre how large an impact the microbiome has on human health. You have probably long tried this (in this case, feel free to ignore to hell and back), but for me, adding a probiotic with B. infantis in particular, supplementing psyllium (start low on that one) and consuming a lot of live, wild ferments (e.g. kimchi) made a huge difference.
I’m very curious about your homebrew FMT.. I’m assuming this was via a capsule of some sort and you ingested it? Or did you perform a self colonoscopy?
The latter, although I don’t think the gruesome details (beyond that) are really topical. I suspect that oral supplementation of this nature is significantly less effective and, other than a little mechanical discomfort, I don’t know why anyone would opt for an oblique approach. The desired bacterial translocation is pretty straight-forward and you can achieve it in a similarly direct manner.
If your desire for details extends beyond mere curiosity, I’ll respond to a DM. Just trying to be courteous to other uses.
Very interesting story. One question: you said that the prognosis is “many rounds of heavy-duty antibiotics to hopefully induce periods of remission,” but my understanding was that UC was autoimmune, and that the standard treatment was steroids or other immune system modulators? That’s certainly what the Mayo Clinic says. Did the specialist mention any of these kinds of medications to you?
Oh, yeah. I should probably amend that. It’s basically steroids, antibiotics, anti-inflammatories (whichever flavor you can handle) and a strong recommendation that you increase your fiber intake. I mentioned having been given each of these in roughly equal portions, but then failed to include it as a part of the prognosis.
My experience with corticosteroids was hit-or-miss, and I had severe, acute depression as a side-effect (I have never experienced anything like depression before or after, so it was pretty blatant). In any case, I don’t really see steroids as being much better, since AFAIK, pretty much everyone relapses w/ steroids as well, and then they have to be adjusted.
EDIT: I’m not specifically trying to be overly pessimistic/fatalist here, it’s just that I’ve had a very bad time w/ traditional approaches to treatment for IBD. Take everything I say with a grain of salt, obviously. I think that people should do whatever they can to feel better.
I’ll update the post, and thank-you for the reply.
I’ve had gastrointestinal issues all my life. They started when I was a newborn; doctors diagnosed me as ‘withholding’, which is a polite way of implying that somebody is causing their own indigestion by refusing to take a shit. My distraught parents consulted several doctors who reaffirmed the original ‘diagnosis’ and finally resorted to administering enemas after other approaches had failed.
Presumably driven to innovation, half-mad with pain, sometime during my toilet training I arrived at a hack solution on my own. Rather than sitting on the toilet, I adopted an improvised ‘squatting’ posture with my feet planted on the seat, which my mother affectionately christened ‘The Spider-Man pose’. I had no way of knowing at the time, of course, that a good chunk of the modern world does their business in a similar-if-somewhat-less-elevated position.
The new posture was a winner in the sense that I could actually move stool. Unfortunately, it did fuck all for my chronic constipation and extreme pain. So my adolescence was full of grueling, agonizing bowel movements that persisted into my teens. For me, it was ordinary to go six or seven days without shitting and then spend a tortured 2-3 hours in the bathroom, passing a frankly terrifying amount of stool in a single sitting and then recuperating for several hours afterwards. This sounds like a gross exaggeration: Let me assure you it is nothing of the sort.
Things proceeded without much fanfare in this fashion for years. I saw several doctors during high school and they amended the consensus diagnosis from Withholding to ‘Irritable Bowel Syndrome’, the less-glamorous-but-equally-nebulous baby sibling of IBD (Irritable Bowel Disease). I was prescribed laxatives, antibiotics and steroids in approximately equal portions on the whim of the prescribing physician. I was directed to the food pyramid and instructed to adjust my intake towards more fiber and grains.
None of this helped and my condition worsened. It wasn’t until after I had graduated high school that things became truly intolerable. By this time I had developed a bad case of hemorrhoids, was occasionally shitting blood, and suffering from chronic abdominal pain and persistent fatigue. My parents trucked me around to several specialists (gastroenterologists), each of whom reaffirmed that I had IBS. I had two colonoscopies, both of which were inconclusive because my body wouldn’t properly flush even when I was following the cleansing instructions zealously (I imagine they weren’t written with people who only shit bi-weekly in mind).
It was about this time I started to get seriously desperate. All my life I’d been pretty athletic, but I was running out of energy to do anything and that worried me. I broke out the laptop and started digging, trying to keep my wits about me but willing to try more-or-less anything for which I could imagine a plausible mechanism. At this point I had moved out of my parents house and was poorer than most readers here will be able to properly envision, so I didn’t have access to a doctor. The only lever I had was my lifestyle, so I adjusted my diet and tried several supplements (the promising few I could afford). After running the gamut, I hit a bit of good luck.
On a hunch, after reading Gary Taubes’ Good Calories Bad Calories, I started pulling grains out of my diet: The effects were immediate and powerful. My energy levels returned to nearly normal and, for the first time in my twenty-something years of life, my bowel movements got a little easier. I remember running downstairs, tears streaming down my face, to tell my roommate that I had figured it out: I was allergic to gluten.
My initial conclusion was, of course, embarrassingly wrong. Removing wheat had been a good first step, but it wasn’t a cure. My symptoms had been consistent (and consistently worsening) my entire life, but now they came and went, seemingly at the whims of a capricious god, with no rhyme or reason whatsoever. Anybody reading this who knows anything about the reward systems of the brain is going to understand immediately how this engendered in me a sudden, insatiable interest in anything nutrition or gut-health related.
The rabbit hole deepens...
Over the course of much experimentation and several years worth of research I had developed a tenuous control over my condition. The flare-ups and remissions were at least explicable if not fully predictable, and I had become convinced that I was suffering from Ulcerative Colitis (a form of IBD which is really a fancy way of saying Colon Bad: Causes Unclear). Along the way I’d developed a cynical distrust of medical practices (especially in the US and especially where the gut is concerned) as I learned how little is truly known about the human microbiome and how large a role it plays in our health.
Then I had the worst flare-up of my life. I had no energy. I couldn’t get off the couch, and I was losing copious amounts of blood to the toilet. I lost something like 20lbs and if it weren’t for the generosity of my roommates helping to take care of me, I have no idea what I would’ve done.
This went on for about six months until I decided that I would try getting on the formerly useless Medical Carousel again. As it happened, I was able to afford a specialist this time around. They set me up for a colonoscopy and, since I was practically starved already, the results were conclusive this time around: I had Ulcerative Colitis. One of my friends had to explain to the nurse who gave me the news when I came around that—no—she hadn’t upset me, and that I was just excited to be proven right.
The feeling was elation followed by anti-climax; they’d confirmed what I’d already known. Ulcerative Colitis is more of a syndrome than a disease, which is to say that it’s a constellation of symptoms that we frequently see together: It says nothing whatsoever about the underlying mechanism.
What nobody ever tells you about these gut conditions is that they are basically a very slow, unattractive death sentence with a lot of discomfort to look forward to in the interim. The prognosis is something like this: many rounds of consistent steroids, antibiotics and NSAIDS (whichever you don’t react to, if any) to hopefully induce periods of remission followed by unexplained flare-ups until your intestines finally give out, at which point your options are death-by-sepsis or surgically removing them in favor of an ostomy-bag.
Having plunged deep into the available literature, I was resolved to fight the inevitable. By this time, however, I had already tried every fanatical lifestyle change that seemed likely to help. Perhaps you will think less of me for this, but having pored over hundreds of medical journals and listening to specialists discuss what little we know of the gut (which—in its own way—is rather a lot), I have concluded that antibiotics ought to be the very last line of defense, ranked up there with chemotherapy in terms of how much damage they do for the benefit of alleviating your symptoms. At least with chemotherapy, you hope to reduce/remove the underlying problem—antibiotics for an IBD flare-up is really more of a band-aid solution.
Anyway, I was desperate to try something with a little more promise and a little less side-effect. Enter FMTs: It was vexing to discover that here in the United States, FMTs (Fecal Matter Transplants) are an approved treatment to repopulate the gut biome post-chemo, but otherwise unsanctioned; it is apparently a sanctioned treatment for IBD in at least a few other countries. It seemed promising albeit gross. Honestly, most of the pushback seemed to stem from this singular fact: it’s basically disgusting. Having neither the money nor the requisite knowledge to make the arrangements, I discarded flying to another country as an option.
You know what they say about desperate people… (please don’t try this at home I guess)
I’ll attempt to skip the gory details here, but I arranged to perform a homebrew FMT, utilizing a cough-donation-cough from a generous friend of mine who was a stellar specimen of gut health. At the time, he was in the military which meant that he’d recently been screened for all the relevant parasites. In any case, I’d done my homework thoroughly enough to feel confident that I wasn’t going to get myself killed.
The results were immediate. My energy levels came back from all-time-low to better-than-ever, and (sorry) my bowel movements were easy and picturesque for the first time in my life. I stopped bleeding. For those who are curious, there were some unexpected side-effects. Namely, during the subsequent two weeks everything smelt like my friend’s poo (this was apparently an internal thing, nobody else could smell it—WEIRD) and I had sudden, serious carb-cravings; I’d been low-carb for years and this was very noticeable.
It’s been 4-5 years since then and my condition—while not always perfect—hasn’t been nearly that bad since. I occasionally have flare-ups but they tend to resolve themselves and my diet/lifestyle seems to be holding my condition in check approximately 95% of the time. That being said, things seem to be slowly worsening over time and I wonder what I’ll do the next time around. I’ve got no delusions about being cured, since IBD seems to have some sort of underlying genetic component and we’re still pretty foggy on the mechanism.
The whole thing has soured me considerably on the medical mainstream though, and I’m somebody who is staunchly against hokey bullshit like homeopathic remedies. I suspect there’s truth in the nuance here. It’s not as though the scientific method is a bunch of shit, but there’s a lot more that goes into medicine than simple, on-the-ground experimentation. Individual practitioners are experiencing information overwhelm to an extent that was formerly unimaginable and we all know that there are Incentive Structure Issues around drug research and manufacturing.
I don’t know what the moral of the story is. Perhaps that it’s an odd time to be alive. I felt compelled to share my story after reading, but I will admit that—looking it over—I feel pretty exposed. Nonetheless, if there’s a place to share this, it would be here.
I wish every single one of you the best of luck. It seems like we may need it.
Have you seen https://www.lesswrong.com/posts/i48nw33pW9kuXsFBw/being-a-donor-for-fecal-microbiota-transplants-fmt-do-good ?
If doing FMT once helped maybe doing it more frequently with even higher-quality material would help?
That’s super useful. Thank-you, I’ll definitely follow-up on this. I imagine it would be.
Mad respect. Hope you are okay now.
It is bizarre how large an impact the microbiome has on human health. You have probably long tried this (in this case, feel free to ignore to hell and back), but for me, adding a probiotic with B. infantis in particular, supplementing psyllium (start low on that one) and consuming a lot of live, wild ferments (e.g. kimchi) made a huge difference.
I’m very curious about your homebrew FMT.. I’m assuming this was via a capsule of some sort and you ingested it? Or did you perform a self colonoscopy?
The latter, although I don’t think the gruesome details (beyond that) are really topical. I suspect that oral supplementation of this nature is significantly less effective and, other than a little mechanical discomfort, I don’t know why anyone would opt for an oblique approach. The desired bacterial translocation is pretty straight-forward and you can achieve it in a similarly direct manner.
If your desire for details extends beyond mere curiosity, I’ll respond to a DM. Just trying to be courteous to other uses.
Very interesting story. One question: you said that the prognosis is “many rounds of heavy-duty antibiotics to hopefully induce periods of remission,” but my understanding was that UC was autoimmune, and that the standard treatment was steroids or other immune system modulators? That’s certainly what the Mayo Clinic says. Did the specialist mention any of these kinds of medications to you?
Oh, yeah. I should probably amend that. It’s basically steroids, antibiotics, anti-inflammatories (whichever flavor you can handle) and a strong recommendation that you increase your fiber intake. I mentioned having been given each of these in roughly equal portions, but then failed to include it as a part of the prognosis.
My experience with corticosteroids was hit-or-miss, and I had severe, acute depression as a side-effect (I have never experienced anything like depression before or after, so it was pretty blatant). In any case, I don’t really see steroids as being much better, since AFAIK, pretty much everyone relapses w/ steroids as well, and then they have to be adjusted.
EDIT: I’m not specifically trying to be overly pessimistic/fatalist here, it’s just that I’ve had a very bad time w/ traditional approaches to treatment for IBD. Take everything I say with a grain of salt, obviously. I think that people should do whatever they can to feel better.
I’ll update the post, and thank-you for the reply.