6 ms·
As someone with Crohn's (diagnosed at 17, now have an ostomy), I often see a lot of conflation with IBS, which IBD is most definitely not. It's interesting, I'
by geerlingguy 5y ago
As someone with Crohn's (diagnosed at 17, now have an ostomy), I often see a lot of conflation with IBS, which IBD is most definitely not.
It's interesting, I've been part of some research studies, I've been through a number of surgeries, and I've literally tried every medical treatment that's available (and a couple that may be someday...) with some very good IBD research docs. And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare, especially the feelings and symptoms.
But they cannot 'cure' Crohn's or put it in remission. I currently have inflammation in my mouth, and unfortunately you can't just slice it out to take care of the problem like you can parts of the gut ;)
Anyways, all that to say these studies come and go, a few have a sliver of promise or offer some new route for a researcher to go, but in my few decades of Crohn's experience, I've grown to accept that short of a very significant stroke of luck, there probably won't be a cure in my lifetime.
And if there is, it'll probably crack the nut on a ton of other autoimmune diseases too. Hopefully!
- rp1 5y agoJust curious: have you tried infecting yourself with parasitic worms that suppress your immune system? That always sounded pretty cool…
- nanonomad 5y agoHave you tried giving things time off to heal with an elemental diet? It wasn't pleasant, but I survived off powdered amino acids, oil capsules, honey and cocoa for a couple months. The commerical/hospital preparations are for tube feeding patients and outrageously expensive. Look into nicotinic acid, a form of niacin. The "flushing" one. If you supplement with it start slow, get used to the burning sensation. It goes away after a few times. Avoid biologics unless you absolutely have to
- xtracto 5y agoI'll tell you something as someone who doesnt have crohn's but has suffered with IBS and undiagnosed permanent abdominal pain for 25 years: Yes... we've tried everything, including stupid diets and even FMT. If you've read it on the internets we have likely also . We are mostly aware and thinking 24/7 about our disease. So yeah, whenever someone randomly tells us to try X or Y random thing, most likely we've already tried it, or have pondered it and decided not to. So most similar comments are usually annoying.
- tornato7 5y agoI have/had severe Crohn's which I have successfully managed to remission through basically diet and only diet (I had allergic reactions to the common drugs). 90% of people who tell me they've 'tried' dieting haven't really. Have you actually strictly followed an elimination diet for at least a year? Most people say something like they stopped eating bread for three weeks and it didn't help. But that's not good data. One must eliminate every single source of gluten and dairy (or do something like SCD diet) by studying the ingredient labels on everything they consume, and do this for 1-2 years, with zero cheat days. Most people can't do this.
- tylorr 5y agoI have Ulcerative Colitis and biologics are working great for me, I take Simponi.
- dmead 5y agohave you tried telling the people who say "have you tried..." to eff off?
- geerlingguy 5y agoHeh, at this point in my Crohn's journey it's basically background noise.
- dmead 5y agoI can only imagine. The dumbest thing I've ever heard in my life was when a co worker said I should treat my deteriorating heart valves "naturally".
- PinkMilkshake 5y ago> they cannot 'cure' Crohn's or put it in remission My partner has had CD since 8 years old. Twice in her life she has been described as "in remission". One being now, as she hasn't had any active disease for a few years. > And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare I though the current understanding is there is no dietary intervention for CD. It certainly didn't work on my partner and none of her specialists said it would make any difference. But I have noticed doctors in different countries have different opinions, so maybe that's the reason? What ended up "beating" her CD was Stelara (ustekinumab) which is available through the Australian health system (our country of residence) but not in New Zealand (our home country) because their research showed it doesn't work.
- geerlingguy 5y agoI think you may have read the intended message a bit differently; I was trying to state that diet and lifestyle choices can't cure Crohn's or put it in remission; they may ease symptoms but they don't magically heal people (like some even in this thread would suggest). I'm currently on Stelara but it seems like it might not be doing much for me :( I'm glad your partner's had better luck with it!
- PinkMilkshake 5y agoApologies, I did read it wrong. I'm sorry to hear it hasn't worked out for you so far. I hope you find some relief in the future, it's a hell of a disease.
- wpasc 5y agoAnkylosing Spondylitis sufferer here. I wish you the best of health and may HLA-B27 eff right off (assuming you are HLA-B27 positive). I empathize with another comment you made about "Have you tried...?" Yes. We have. (Advil, Indocin, Sulfasalazine, Meloxicam, Diclofenac Sodium, Remicade, Humira, Enbrel, Curcumin, Vitamin D and also A-Z, Gluten Free, Vegan, Paleo, Whole30, Mediterranean, Yoga, Pilates, Acupuncture, Stem cell injections, Steroid injections, Physical Therapy, Glucosamine, Glutamine, BCAA's, Probiotics, Probiotic foods, electro stim therapy, heat, cold, stretching, Meditation, CBD, CBT, starch free, and probably other stuff I'm forgetting)
- wpasc 5y agoNot meant to be a negative comment, a lot of stuff helps to some degree. No cures though. to anyone wondering what worked and didnt, just work with your doctor and experiment with your doctor's permission, and be skeptical but hopeful.
- enimodas 5y agoDid you see that guy on, i think on the AS reddit, who did extreme saunaing? You seem to be willing to try things, maybe it's something for you ;)
- wpasc 5y agohah I have not but I'd like to have a sauna in my future home regardless. Currently I'm in an apt and going to a sauna in nyc is not super appealing to me (cost, friction in working it into my day with having to go somewhere, etc), but when I move to the suburbs I definitely want to get one.
- enimodas 5y agoHe's not using a normal sauna, but something with heaters/lamps. I'm not dedicated enough to try it myself: https://www.reddit.com/r/PsoriaticArthritis/comments/es5w6f/thermal_saunas/ff8c7xn/ https://www.reddit.com/r/PsoriaticArthritis/comments/es5w6f/...
- xutopia 5y agoHave you tried fungicides?
- sleepysysadmin 5y ago>And I've also seen that diet and lifestyle choices can definitely affect the severity of a flare, especially the feelings and symptoms. Which diets have you tried? >But they cannot 'cure' Crohn's or put it in remission. I'm certainly in remission. >I've grown to accept that short of a very significant stroke of luck, there probably won't be a cure in my lifetime. The cure exists, it's just not politically acceptable. Society would rather pump you up with crazy meds like remicade or chemotherapy like methotrexate than just do the cure. It took me years to find the cure because politics has poisoned the entire subject. The general advice given for crohns is literally not helping, and in fact probably making things worse.
- tsol 5y agoSo what, may I ask, was the cure for you? I consider hearing people out to be a useful thing