It's also the case that there is a bewildering variety of things that get sort of lumped together as "IBD." Crohn's and ulcerative colitis are two of them, but there's no particular reason to assume inflammatory bowel diseases all have the same set of causes. Pretty much all of them are made worse by an e. coli infection, though, so a drug that can target just those bacteria is helpful!
During my own IBD journey, I've managed to stump the heck out of two different teams of GIs. I had been diagnosed with UC by biopsy during colonoscopy, and then at my last colonoscopy, despite not having been on medication for more than two years, they determined not only that I don't have it now, but that I never did. They told me "remission" would look different from "this bowel has never had IBD." But they also insisted I had not been misdiagnosed.
And yet they told me with a straight face that it is incurable. I had it in the past, confirmed by pathology. I don't have it now. And it's incurable. I give up.
In the end, I don't care enough to fight them about the contradiction, because the part I most care about is the "I don't have it now" part, and we're all in agreement on that.
(Note for any who are interested: I stopped medication after successfully reducing my inflammation markers within normal limits by eating the exact same thing for every single meal for 20 months with no cheating of any kind. They told me that shouldn't have been possible either, but it worked. And yes, it was as miserable as it sounds, but less miserable than living with UC.)
Sounds like you first decimated the bacteria with antibiotics, and then made it heavily disadvantaged by eating something that preferentially feeds other gut bacteria. What was the food, out of curiosity?
Actually when I medicated it, it was with mesalamine, not an antibiotic. I didn't do anything to attack the bacteria.
The meal consisted of well-boiled meat (pork/beef/chicken together, slow cooked, overnight), and carrots, zucchini, and butternut squash cooked in its juice until it mostly wasn't soup anymore.
It's possible it still had some antibiotic properties, lots of commonly used drugs interact with our gut bacteria in varying ways. And indeed a quick search suggests that this might be the case: https://pmc.ncbi.nlm.nih.gov/articles/PMC5514548/
The meal consisted of well-boiled meat (pork/beef/chicken together, slow cooked, overnight), and carrots, zucchini, and butternut squash cooked in its juice until it mostly wasn't soup anymore.
I wanted it to be soft/easy to digest, but also nutritious. This was at least a wide enough variety of nutrients that I didn't feel miserable (just bored).
As someone with IBD who is on their fifth trip to the toilet since midnight (BST) I'd love to get the recipe. I've got a few months of steroids ahead and anything more long term and high impact is of enormous interest.
The meal consisted of well-boiled meat (pork/beef/chicken together, slow cooked, overnight), and carrots, zucchini, and butternut squash cooked in its juice in a pan until it mostly wasn't soup anymore. Salt to taste, but it's never gonna be delicious. It's tolerable. It's even fairly enjoyable once or twice. It's not a bad meal. But boy is it a tedious one after awhile.
I wasn't aware of any diet that excluded these things for reactivity reasons, and once boiled half to death, they were so soft as to be practically "pre-digested." I was trying to make it as easy on my gut as I could manage.
CRP and fecal calprotectin. The meal consisted of well-boiled meat (pork/beef/chicken together, slow cooked, overnight), and carrots, zucchini, and butternut squash cooked in its juice until it mostly wasn't soup anymore. Picked things that were very soft/easy to digest, with at least some nutritional value, because it didn't bother me. I just wanted to buy time for things to calm down.
It was meant to be an elimination diet with reintroduction, but every reintroduction attempt failed miserably for 20 months. Then, suddenly, it was fine.
I still mostly eat food I would recognize in its ingredient form instead of highly processed stuff, but if everybody's going out for pizza, I can have a couple slices and be fine. I just can't do that all the time.
Would you please stop posting in the flamewar style and breaking the site guidelines? Your account has been doing a great deal of this, and we've already had to warn you many times:
Not the person you're replying to, but my own IBD went away completely after I did keto for an extended period. This was a decade ago and it hasn't come back even as my diet returned to normal.
In my n=1 experience, it seems maybe significant dietary changes can perturb the gut ecosystem out of whatever state corresponds to IBD.
I had a similar experience, i.e. strict keto for 9 months and fully came off meds with no signs of UC or asthma. UC came back after around 2 years and I don't remember how long before I had to start asthma meds again. I can no longer do keto though, each time I try I get palpitations now after around a week.
Yeah my asthma went into remission as well, though this was also a period of my life when I was very physically active and in the best shape of my life, so it's hard to say what was the cause there.
They sometimes can, but most properly gut-adapted microbes only have their relative prevalence reduced by diet changes, by and large people unfortunately tend to snap back once diet is discontinued.
Ideally, you'd combine that with doing a stool transplant first, since it's the main thing (other than just antibiotics) that causes permanent compositional changes.
I'm not a scientist on any level, so my theory only went as far as "stop irritating the thing and let it heal itself."
When they started talking about putting me on immune-suppressant drugs during a pandemic, I thought that didn't sound like a very good idea, but maybe my body could sort itself out if I gave it the opportunity.
Not a terribly sophisticated take, but it works for things like not popping blisters or picking at scabs, so it seemed worth a shot.
i do the same, eating same thing for 2 years. While i don't have big IBD symptoms, i cannot now introduce new food, every time i try to introduce even very very small doses, i get a strange disproportionate reaction of my gut.
Gosh, I'm sorry. It does suck. For me, it was like that until it suddenly wasn't anymore. Nothing obviously changed. I kept "testing" reintroducing very small amounts of other food to try to end the elimination diet, like a bite every two months or something, and after 20 months, suddenly it went fine.
I say that just in hopes of encouraging you that healing might be right around the corner and you just might not know it yet. I certainly didn't know it was about to be over when it ended.
Doctors are the only people I’ve encountered who are ready to inform you of their poorly supported contradictory conclusions with full confidence, and are fully ready to meet any pushback with gaslighting or the dreaded “difficult patient” label.
They approach the phenomenon of dropping trust and respect for their profession in much the same way.
It’s really frustrating. I don’t get why they feel entitled to acting this way when no one else does.
After making you wait 40 minutes later than when your appointment was supposed to start, I’ve looked at your chart for about 2 minutes and have spoken to you 60 seconds I’ve confidently diagnosed you with X. Here’s a prescription, let’s see you back in 6 months.
My favorite is the "bless your heart" head tilt that strongly implies you're just too damn stupid to follow what they're saying, when it's obvious on its face that they're contradicting themselves.
"I was correctly diagnosed with it before."
"Correct."
"I do not have it now."
"Correct."
"It is not 'in remission.' I just do not have the disease."
"Correect."
"But it isn't curable."
"Correct."
"So if it wasn't 'cured,' what did happen to it?"
{head tilt} "You tell me. Follow it through. You used to have it. You do not have it anymore. It's not in remission. But it also hasn't been cured. What does that leave?"
"#$%^! I don't know! That's why I'm here, asking you! As far as I know, all it leaves is contradiction and impossibility!"
"Now, now. There's no need to be difficult."
(This is almost word for word the last conversation I had with my GI. I'm not exaggerating. I'm not paraphrasing. I went through it exactly like this, and she responded to me exactly like this.)
My trick is to learn the terminology/jargon of the specialists by buying meds students used textbooks. It completely changes the conversation dynamics even if initially it appears to slightly confuse them.
Sometimes it angers them but then it's a clear signal that you must see someone else ASAP. When we grilled my wife first oncologist on his protocol, he broke down and said that he was not up to date on the latest research. We requested someone else, he was a much better fit and most importantly she is still alive, her metastasis disappeared and the latest scans and bloodworks results are still NED (no evidence of disease).
Awesome for you and props! Let me tell you, doctors will gaslight patients who cure themselves because it is some kind of mental disorder they have I cannot figure out. They said THE EXACT SAME THING to my friend who also cured his UC with diet. "Well, you never had it because if you did you could not cure it." He is a Dentist and he literally yelled at them because he knew how unscientific it was what they were saying.
I am a FUT2 non-secretor who suffered with IBS-D for years. I had to cure myself as well. Very strict diet and high seaweed (it contains fucose (not fructose)). Not one doctor cares. I tell you, it is a mental disorder.
Yes, that was one of the inflammatory markers they checked. At diagnosis, I was in the mid-400s. After medication, I was in the low-200s. After 20 months of this elimination diet, I was in the 20s.
Multiple doctors told me it would not be possible to decrease the score without medication, one of them even while holding the results in his hands proving that I had done it.
During my own IBD journey, I've managed to stump the heck out of two different teams of GIs. I had been diagnosed with UC by biopsy during colonoscopy, and then at my last colonoscopy, despite not having been on medication for more than two years, they determined not only that I don't have it now, but that I never did. They told me "remission" would look different from "this bowel has never had IBD." But they also insisted I had not been misdiagnosed.
And yet they told me with a straight face that it is incurable. I had it in the past, confirmed by pathology. I don't have it now. And it's incurable. I give up.
In the end, I don't care enough to fight them about the contradiction, because the part I most care about is the "I don't have it now" part, and we're all in agreement on that.
(Note for any who are interested: I stopped medication after successfully reducing my inflammation markers within normal limits by eating the exact same thing for every single meal for 20 months with no cheating of any kind. They told me that shouldn't have been possible either, but it worked. And yes, it was as miserable as it sounds, but less miserable than living with UC.)