But if this works as well as hoped it will bring a lot of peace of mind that if I do ever need surgery, I won’t be going back in for more every few years.
Medical research is awesome, for all its inefficiencies.
Taken mesalazine as directed by my doctor for nearly 30 years, and been extremely lucky.
(I’ve had to take predisone three times for flare ups, but not for more than 20 years. As I said, extremely lucky).
We have no evidence biologics caused it but the fact that they reduce t-cell activity, it is definitely plausible. That is why all of them disclose the blanket cancer risks. She is not currently cancer free but we are concerned that the next one will be something with a much worse 5 year outlook
We would rather her not be on them but they are the best thing that currently exists.
Also some people are just prescribed steroids like prednisone for whatever reason, which has some pretty negative long term effects.
However I have been prescribed prednisolone for brief periods in the past when I’ve had active disease, which has a lot of known risks with long term use.
I don’t know if it’s still used much but at one stage my doctor considered prescribing Azathioprine (Imuran), which has some potential nasty side effects and risks.
Neuronal regulation of the gut immune system and neuromodulation for treating inflammatory bowel disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8565205/
It would be incredible if it works, since it would avoid treatment with systemic immunosuppresives which can promote infection/cancer. However maybe there is still a local risk of the above?
I would also be concerned about the implant getting covered in nasty biofilms over time.
If this type of thing works, does that mean that medication that target the nerves might work against inflammatory disease?
We really need to look at supply chain and environmental factors.
I sure hope a CRISPR edit treatment comes along to permanently cure some of the serious Crohn subtypes.
About 3 years ago I had gut issues so bad I thought I was close to death. NHS couldn't see any problems and were basically telling me I'd gone nuts. They refused to do any further testing.
After a year of suffering I tried a 7 day water-only fast and the pain finally went away. I broke fast with only paleo foods and stayed that way for 6 months. I gradually introduced other foods after that period with the last being gluten about 2 years after the initial fast. I am almost cured, however I will never abuse my gut in the same way again. Less carbs, more salads...
This is just my personal experience of course but I have discovered so many other people with similar gut issues who are also being ignored by their doctors that you can't blame one for wondering if there is a conspiracy at play.
I wouldn't have believed any of this a few years ago but now I have serious doubts in modern medicine's ability to deal with chronic health issues, especially in the gut.
We do eat so many more processed foods (and other things) that it doesn't require that much of a stretch to the imagination that diet is a part of the problem or indeed the root cause.
Lack of openmindedness bothers me immensely and the nature of human biology is under no obligation to fit into tidy boxes for the sake of our understanding. The real world is fuzzy.
If this stops inflammation/ scarring that’s a big part of it.
Or to put it another way: you get scarring before surgery, too. The problem is that overtime there’s only so much intestine you can remove.
Note that while TNF inhibitors like adalimumab (Humira) have a black box cancer warning in the US, this was based on assessing a small number of studies early on. We now have more than 20 years of studies and patient registry data, and later studies, including meta-analyses, have concluded that there is no additional risk of cancer with these TNF inhibitors.
E.g. see:
The best thing is if we could target these drugs to only be activated in areas of active inflammation.
The implant doesn't necessarily sit inside the gut though does it ? Just somewhere it can ping the relevant nerve.
Several theories have been proposed, including hygiene hypothesis, lack of fiber in the diet, and pollution, but finding causality has been hard. Worse yet, nobody knows what causes these illnesses.
It's also interesting to note many food allergies have increased in prevalence in the last 30 years - although the causes for that might be different, they are both GI related auto-immune conditions.
[1] https://www.gastrojournal.org/article/S0016-5085%2811%290016...
[2] https://www.thelancet.com/cms/attachment/1bc07ee3-782c-4670-...
Wonder how much of this is due to the relatively recent trend of having dual incomes with both parents working?
Cause and effect might be hard to tease out but it’s looking like there are some drastic differences in babies that were born early in the pandemic:
> only about 5% of the lockdown babies had developed a food allergy at age one, compared to 22.8% in the pre-COVID group.
> Of the lockdown babies only 17% needed an antibiotic by the age of one. In the pre-pandemic group, 80% of infants had taken antibiotics by 12 months
Can’t find a link to the original study at the moment but here’s a secondary source:
https://news.sky.com/story/covid-19-pandemic-babies-develope...
Children are given far more of them than adults. People moving from developing countries to developed countries won't receive as many. But if they have kids in a developed country, their kids will get a ton.
I think there are other foods that bother different people, but we haven't managed pin down exactly which foods bother which people. It's a hard problem, but surely there are other cases of "if you just avoid this specific food ingredient, you will recover", just like celiac disease.
So, on the one hand, sharing advice about which diets worked and didn't work can be helpful (like the 12 bananas a day diet). On the other hand, "I tried an unusual diet, which also happens to have a good amount of marketing behind it, and things are better" is one of the most common bits of advice you'll find for many diseases, and the problem is everyone recommends a different diet.
A relative of mine has Chrons disease and was close to death before it was diagnosed, the doctors recommended a junk food diet basically, high calorie foods with almost no fiber, and that's how he eats now and is doing much better. I don't recommend everyone follow the same diet, but for whatever it's worth, eating junk food has helped my relative, true story.
And this is what I mean, there's so much conflicting advice about which diet to try. I can't fault people for trying different diets, because I believe there are many unknown disease, like celiac disease, which can be treated with an exact (but as of yet unknown) diet. I also don't fault people for giving up and not enthusiastically trying every diet-of-the-week that gets suggested, it's tiring. Also, it's notable that the diets with the most marketing tend to be the ones most recommended.
Crohn's disease affects each patient differently. Depending on what part of the gut is being attacked [1], different digestive processes are implicated. That will lead to different kinds of foods being potentially problematic (as well as leading to a need for different kinds of supplementation).
The bottom line is: your mileage WILL vary.
(I've had Crohn's for nearly 45 years, since I was an adolescent.)
[1] My doc once told me about a patient he had that was affected in the throat!
ETA: for my personal experience, the one thing I can't eat is whole-kernel corn in any non-trivial quantity. It actually clogs me up. Oddly, popcorn is perfectly fine, as are corn tortillas and the like. It's happened to me twice. The first time I went to the ER and said I thought I had an obstructed bowel, and the admitting nurse said "can't be, if that were the case, you wouldn't be able to walk in yourself". I think that gives some perspective about what kinds of pain you can get used to. Second time it happened, I didn't bother, since there turned out to be nothing the ER docs could do other than monitor me. I just let it work itself out over the course of a couple days.
I'm certainly not suggesting there is a single treatment plan that'll work for everyone. As I said biology is fuzzy and it annoys me when people try to debug health issues like they were pieces of software. Discussing these things openly does help however.
Sounds like a job for a neural net. If people would log all what they eat and how they feel. If the neural net had access to all the components of the foods they are inputting, surely with enough data a pattern would emerge of what common component in what they eat is correlated with worse symptoms.
When a patient dies, society will treat a doctor very differently if it's perceived that the doctor was being unorthodox compared to too cautious. This doesn't mean that too cautious doesn't also cost lives. It's just really difficult to balance when the stakes are so high.
Anyway, good on you for taking ownership of your own health, and thank you for sharing your experience. I hope you continue to get better.
Just as an example of a more studied case, the probability that an overweight person reattains normal weight through diet and exercise is well under 1% [1]. Now consider that diets for Crohn's (like a water fast and strict elimination diet) are considerably more difficult to follow than a weight loss diet - it's no wonder that diet appears to be ineffective for most people.
After a similar experience to yours I haven't had any foods with the 8 major allergens (and a few more select things) for over seven years, aside from a handful of accidents early on. That's not an easy diet to follow, but gets easier with time and experience.
A quote from Ray Peat:
>“Besides fasting, or chronic protein deficiency, the common causes of hypothyroidism are excessive stress or “aerobic” (i.e. anaerobic) exercise, and diets containing beans, lentils, nuts, unsaturated fats (including carotene), and undercooked broccoli, cauliflower, cabbage, and mustard greens. Many health conscious people become hypothyroid with a synergistic program of undercooked vegetables, legumes instead of animal proteins, oils instead of butter, carotene instead of vitamin A, and breathless exercise instead of stimulating life.”
We see that health-consciousness, when lead somewhere by ideology, is not in itself sufficient to make progress.
Fasting would help initiate that, but I think so many people these days never stop eating long enough for their stomach to rumble.
I'm kind in the same boat as you were in. Nothing live threatening but definitely daily annoyance of gut issues that impacts my life.
Mind sharing some meals you eat for breakfast, lunch, dinner? I'd love to try some new healthier options.
The "why" is a little less clear, but it's likely a mix of genetic factors and environmental/infectious triggers. Plus good old-fashioned stress :)
Yet, the main two treatment options are "workaround/hacks" or a very invasive operation.
There's only one [1] potential nobel "curing" treatment which is just gaining traction.
But innmy opinion with current technology, stuff like GERD or chronic bowel incontinence (due to mechanical failure of anjs sphincter) should be 100% solved.
I've been in remission for long enough that I could probably start eating a lot of these things again, but I have no desire to go through another Crohn's episode, so I'll probably continue to avoid these foods for the next 40-50 years (unless there's a miracle Crohn's cure in the meantime). After that, as I understand, a weakening immune system from old age makes Crohn's symptoms significantly less likely or severe.
When I was diagnosed with UC, the inflammation perfectly correlated with a portion of the colon that was connected to a particular nerve (I can remember which - it was a few years ago by now).
I dismissed it as BS at the time, but a physiologist once asked me where I feel the physical sensation when I am stressed or anxious, and I said my gut. He thought that was very interesting (since I had recently been diagnosed with UC). I thought nothing of it, but maybe there is a link. (My wife, in contrast, feels anxiety and stress as a feeling in her chest.)
More and more, scientific research is pointing towards how all the systems in the body are connected one way or another, so I wouldn't be at all surprised if there is also a link between IBD and the nervous system.
> The vagus nerve regulates inflammation and cytokine release through the inflammatory reflex. Recent pilot clinical trials using implantable bioelectronic devices have demonstrated the efficacy of vagus nerve stimulation (VNS) in adult patients with inflammatory bowel diseases (IBD) as an alternative to drug treatments.
https://bioelecmed.biomedcentral.com/articles/10.1186/s42234...
Infection risk is currently the case with all current medications that act on the immune system. In all cases we are merely suppressing some pathway where the end goal is to reduce the immune response.
ThatMs really the best we can do until we actually identify the causes, and can address that rather than "dialing down" our immune systems.
For me my doctor recommends a mediterranean diet and to avoid emulsifiers, but it’s definitely not a cure and not universal.
If you go look at chrohns forums you’ll see a lot of experimenting and a lot of different diets because (to my understanding) chrohns has a lot of different and unknown causes.
For me high fiber foods can put me out of commission for the next day, for others it’s the opposite.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8120162/
I think it's called the Susan Shore device, and nowadays is the main hope for curing tinnitus to some degree.
She is currently on tremfya
When it comes to fiber in particular, I think what can confuse people is the difference between water soluble fibers like oatmeal, and extremely insoluble "macrofibers" like raw green asparagus, leafy greens, orange pith etc. The former is OK for some, the latter is no-go for everyone AFAIU.
Another curveball is nearly underbaked dough, like you'll find in a lot of commercial bread and rolls, even if it has zero fiber. If you can knead it back into dough with your hands, it might just form a nice lump in your gut as well.
I have the same thing as you with corn, and also with nuts unless eaten with lots of liquids. I think it goes back to the possibility of forming tough paste in the gut.
I tell people that if it looks the same coming out as it goes in, I can't have that banging around my guts.
Any fast or junk foods are totally fine since they're mostly low fiber, but high fiber foods are mostly okay, too.
Due to my strictures and the nightmare stories I've read from people online, I specifically eat foods that are mushy or smoothies and soups. Basically, I'm pre-digesting the foods before they're eaten so they're easier to pass through a narrowing intestional wall and it has worked well for years now. Only time I've had issues are when I eat too quickly, too much at once or have one of my problem foods.
I'm also on a biologic, which made all the difference after being untreated for about 6 months, which I wouldn't wish on my worst enemy.
Do you have a different reaction to soluble vs insoluble fiber?
And raisins affect me within 20min, but if I were to face something like potatoes or tomatoes then it doesn't give me issues until hours later (after my next meal or even the next day).
Dietary data is one of the hardest things to collect. Either you need to hospitalize people and control their whole diet, and your sample size is small, because of costs, or you need to rely on self reporting, and your data is unreliable.
Basically, much easier said than done.
That's a very delayed and weak signal.
So correlating that data with people's health could be very interesting!
I don't think that has much chance getting past an IRB though.
Plus—you have a chance of beating cancer. But a colectomy is a one-way trip!
(Prednisone will absolutely fuck you up long-term though. No cancer risk afaik, but osteoporosis risk is through the roof. I've heard of UC patients who needed joint replacements in their 30s from long-term steroid use...)
I got Pneumonia that turned into Sepsis in about 60 hours. It happened so fast that the doctors brought in an addiction specialist. The only other time they’ve seen this is when drunks pass out and aspirate on their vomit. (Crohn’s doesn’t let me drink, so we can rule that out…) After days of studies, we found the warning label on Stelara about the elevated risk of lung infections. My care team reached out the Janssen and confirmed it. After about 4 days of IV antibiotics, I was sent home to continue on oral antibiotics.
Still, if I die from something like this, it’s still worth it to take these biologics. At least I lived a much better life for a while thanks them. The side effects can be life threatening, but the ability to have a life is worth it.
TLDR: On Stelara, I went from Pneumonia to Sepsis in about 60 hours while taking oral antibiotics. The warnings on the labels of the biologics are serious - and the side effects can be life threatening.
Prednisone is the one exception though, unless life is completely unlivable or you have a significant chance of death (typically from perforation) I would avoid it.
It's interesting that this has become a talking point now for basically any new therapy. As soon as something new and promising comes out, we "don't understand the long-term effects" -- but this discounts (1) the years and years of research and development that go into them (2) the decades of research and development that has gone into the underlying platforms (3) the trials that have happened and (4) the known and understood negative effects of the disease being treated.
The FDA tends not to yolo new therapies.
We see this with GLP-1's all the time. They have side-effects, what will happen later, etc -- as though obesity doesn't have side-effects, and predispose you to every disease known to man?
I feel like this all started during the COVID vaccine hysteria, but maybe it was always there and I wasn't paying attention? I feel like a decade ago when a new treatment for a chronic disease came out people threw themselves at it.
I guess maybe as a concrete follow-up question: how many years would it take before you felt comfortable with it, and why that number specifically? 10? 20? 30?
I also should point out that "long term effects of taking them are not well understood" isn't my personal opinion per se, it's something I've read in the literature about these drugs, including relatively recent research (I wish I had a good source that summarizes this point, but I don't have one on hand). Concern about long term effects is real and legitimate, and pre-dates concern about COVID-19 vaccines (another instance where I believe the benefit far outweighs the risk, for the record). There must always be a balance between spending time testing vs. getting a pharmaceutical deployed. It would be absurd to imply that we're not making a tradeoff here.
For corticosteroids, I agree… But that’s not supposed to be used long term and is a bit of an emergency resort.
