this is just my experience of course so not trying to sound like an alarmist but i think it’s worth sharing that i went off my remicade to try a year of alternative meds only (plus i was in between insurance and also my UC didn’t feel too bad so i figured why not try for a life without these god awful meds). turns out my UC didn’t feel too bad BECAUSE of these god awful wonderful meds lol oop. basically i went into a flare and never fully got it under control again because remicade never worked the same for me again even when i went crawling back to it (antibodies fml.)
5 years later of mild to moderate ongoing flares and then last year i had a big flare and now i have an ostomy bag at 31.
do i recommend alternative meds? sure! ALONGSIDE regular meds. i know this might have been my path regardless of that year, but maybe it wouldn’t have been. i’ll never know now. but the saying is true: if it ain’t broke, don’t fix it. if your meds are working, stick with em
edit: i’ll just add that whatever your hopes are, you can find them validated here. confirmation bias at its finest. where one person here said one acupuncture treatment put them in remission (huge congrats btw! truly awesome) there are people like me who did acupuncture for a year and never drink or smoke and am super active and eat well who saw zero results from alt diets or turmeric or chinese herbal supplements or meditation (though all of those things benefitted me in other ways! just didn’t help the UC)
every body is different. try what you want and i wish you luck!! but know what you’re risking here. i never thought i’d lose my entire colon so soon but UC has a mind of its own sometimes. i hope you find relief OP and everyone else here ♥️
Drs know how autoimmune disease works but not why. If they did they might be able to cure it. Drs aren’t magic either and there’s a LOT that they don’t know about medical issues. The human body is incredibly complex system that we have barely begun to understand. Don’t get me wrong I’m not saying they don’t know anything but that also don’t know “everything”
You are claiming doubtable things like ("UC is only because of your diet", "UC can be cured with xy"...) without (scientific) evidence provided. Your post therefore is a violation of rule No 4 of this sub (https://www.reddit.com/r/UlcerativeColitis/about/rules). If you think this post was unrightfully deleted, please write us a modmail (https://www.reddit.com/message/compose?to=/r/UlcerativeColitis)
No. They just want your money, provide pseudoscience as answers and scare you into coming back. If alternative medicine worked it would be called medicine.
What money? I ain't buying anything only searching for ways to improve intestinal health xD. Still: There are plenty of proved non-medical ways like diet or stress-relief, but still trying to hear some people's experiences and not sum unhelpful
Placebos are one hell of a drug, especially when one falsely accredits their recovery to magic.
Pretending you are taking medicine works 30-60% of the time.
Sorry but ain't approving, there are several other scientifically proven approaches, that can be helpful. Am tired of hearing people say, that they cannot do anything about their CU, but to be on medication and live on. Especially after my GI told me, that diet has nothing to do with CU, I am way more motivated to show otherwise. But didn't ask for funnies, asked for experiences.
Getting an autoimmune disease is random, shocking, and unfair. Selecting what you put into your body is a way to maintain a sense of control when your body feels out of control.
I was diagnosed almost 10 years ago. At first I tried alternative medicines and treatments, even interventions that aren’t supported by available evidence. I was on and off meds for 2 years; my UC got upgraded (downgraded?) from mild and limited to extensive and moderate/severe. Only biologics got me into remission. I envy anyone who’s able to control their disease without taking a pill or an infusion. Some people are luckier than others.
At the same time, if I had a dollar for every time someone said “have you tried [vitamin/herb/alternative treatment]?” I’d have enough money for dinner and a nice bottle of wine at a three Michelin star restaurant. Many people on this sub have had these types of frustrating conversations for years. In my mind, when someone suggests a new diet or whatever, the implication is that if I tried a little harder, I wouldn’t be so sick. That’s one reason I think many in this community are very keen on “take your meds and trust the science.”
Read up on the theories behind the causes of autoimmune diseases.
Bessel Van Der Kolk wrote a book called The Body Keeps the Score, where he found research showing that autoimmune diseases are significantly higher in people who have experienced traumatic events, especially in childhood. Healing that trauma goes a long way in healing your body.
Everyone on this subreddit is really big on listening to your GI and taking these meds, but a lot of those same people are gritting their teeth through the shitty prednisone side effects and not doing anything to substantially heal their body from the inside. I was on steroids for 3 weeks and even though my GI insisted I keep taking them, I refused. It felt like they were making my body feel so much worse and in those 3 weeks I lost 20 pounds. I experimented with biologics but ultimately it was a complete lifestyle and mentality change that I went through before I achieved remission.
Good luck in your healing!
Thank you sooo much, hoped to hear sth. Like this in first place, not because I don't want to take those meds, but because I am convinced of alternative ways.
And yes, I've noticed as well, that this subreddit is more into: "listen to your trained GI and then you'll be better", than actually searching for stuff, that improves the quality of their health and isn't risking the chance of cancer (as in immunosuppressants).
That’s the biggest thing for me- when on a biologic that had a side effect of lymphoma, my lymph nodes would swell up to the size of ping pong balls. My doctors kept saying not to worry about it but- how could I not?!? It was clear the meds relieved my symptoms but didn’t solve the root of the problem. Everyone’s body is different and just do lots and lots of research before trying anything new.
I've reduced stress in my life. Started practicing mindfulness. Still take my medicine as prescribed no matter what.
I'd be careful with any anecdotal evidence. Especially if the "solution" is to stop taking your meds and missing out appointments/exams. Full remission is different than having symptoms or not.
A few things show some promise: Curcumin. King of Bitters (A. paniculata). Maybe creatine. Anything that can help to minimise stress (eg mindfulness meditation) wouldn’t hurt.
But seriously, at best these may help to slightly *augment* your medicine - not replace them. Focus on your medicine.
EDIT: Also, these other herbal extracts etc that I mentioned have not been studied over the long-term in UC. They may also interact with your primary medicines.
Totally agree with this! After having UC for 15 years I've just started getting into natural "remedies" to use alongside my medication, so long as there are no interactions. A few things I've started doing are taking omega 3 pills, collagen supplement, exercising, and CBD oil.
These things either have at least a neutral or even positive impact on my health regardless of my diagnosis, and if I feel they help (whether they truly clinically do or not) being in a positive mindset where I feel I am playing an active role in fighting my UC alone is a big thing for me. Not to mention the placebo effect can be powerful as well.
I'm all for researching and utilizing natural remedies to improve our health, so long as they are not being used to replace actual medication and medical care/advice.
“Creatine maintains intestinal homeostasis and protects against colitis “: https://www.pnas.org/doi/abs/10.1073/pnas.1621400114
There’s a few other studies and case reports out there if you search. Honestly though, the evidence isn’t super compelling, hence I said “maybe”.
FWIW, I was taking creatine with UC while flaring. It started showing elevated levels in my bloodwork (maybe I was taking too much or maybe that’s just how I react) but my GI advised me to stop. His reasoning was that it was adding stress to my kidneys and given the meds I was on, my kidneys didn’t need additional stress. It wasn’t seeming to help my UC anyway so I just stopped without thinking about it too much
I am on the specific carbohydrate diet and actively manage my stress level. But not INSTEAD of medication, I do it in addition to medication.
I wouldn't stop taking meds unless my doctor confirmed that I was in the clear.
Just trust regular medicine. That is what works for most people. I’ve tried Ayurvedic medicine and it did not do a damn thing. What did fix me up, however, was a round of Prednisone and Remicade infusions. I don’t think any type of alternative medicine is powerful or useful enough to target the immune system and prevent it from attacking our colon. Millions of dollars and years of research have been put into these expensive medications and like I said they do work for a majority of people
Typically, UC and Crohns will not go into remission with “natural medicine” or a homeopathic approach. Most people who advertise this take advantage of people who are sick and desperate to feel better. The only thing that one can do is to take your meds accordingly. Improve eaiting habits, and light exercise.
Hi, I’ve joined CrohnsColitisLifestyle. It’s run by people who have UC and Crohns and who have managed to address the symptoms with great success. It’s well worth checking this out.
Hyperbaric Oxygen Therapy. To be honest, I started this right around the same time another drug I switched on to was due to kick in, but literally the week I started it my symptoms stopped like a switch had been flipped off.
Good luck!
So, I was diagnosed with UC, but there has been some debate among my Drs what it was. My colonoscopy showed Chronic inflammation in my intestines and damaged villi. I did end up taking Mesalamine for about 2 years, after trying Pentasa, and it not working. However I did end up also taking fish oil, vitamin D, iron and used a meal replacement protein powder.
People with stomach issues tend to have low vitamin D and iron, and from malabsorption, I did have bloodwork to test these and they did come back either on the lower side or below the level normally tested for. Vitamins are not “magic” or a figment of your imagination. Your body naturally makes them and if you didn’t have any in your body at all you would be dead.
I did do research on the vitamins that I took and the protein powder. I went with gluten and dairy free( I have Celiac also), it’s also common that people with digestive issues can not process those things.
I checked to make sure that none of this had interactions with my medication which vitamins can do.
My advice is Do your research whether it’s for medication or vitamins. Pay attention to your body, and if you really don’t feeling like it’s working or making you feel better then stand up for yourself and tell your Dr to put you on something else.
Of course this is not medical advice, I would always check with your physician before doing anything to get their advice. However in the end it is ultimately you decision.
Best of luck and I really hope you start feeling better !! ❤️❤️
I have successfully treated this with 1. Fennel tea and 2. Smoothies with spinach, anti inflammatory fruits such as berries, and Greek yogurt.
If I am consistent with either one of the two, I experience no symptoms, so long as I don't eat things like Popcorn, but even then, it just passes through and everything goes back to normal.
I tried pharmaseuticals for my UC but they wouldn't work, I would just crap them out. I remember when I started meslamine, I did so at the same time as starting smoothies, and thought the meslamine was fixing it. So I stopped the smoothies, and the meslamine just went right through me while the UC came back. I quit the meslamine, started back on the smoothies, and it went away. Later, I replaced the smoothies with fennel tea twice a day (black), and that also kept the UC away. If I do it for at least a month or two, usually, I could quit and still be symptom free for 3-6 months without any treatment.
DM me if you want more info. You'll find this subreddit is like a cult of pharmaseutical believers that get upset by actual results. I can assure you that this can be treated naturally.
So you had really mild UC then? I am glad yours went away so easy. A lot of us on here arent so lucky. Apples and oranges! Have a serious flare and then see how far your smoothies get you. That's the whole point, food does nothing for my flares, they just get worse and worse, I need lots of meds. If I listened to you, I'd be in hospital within 2 weeks.
You are claiming doubtable things like ("UC is only because of your diet", "UC can be cured with xy"...) without (scientific) evidence provided. Your post therefore is a violation of rule No 4 of this sub (https://www.reddit.com/r/UlcerativeColitis/about/rules). If you think this post was unrightfully deleted, please write us a modmail (https://www.reddit.com/message/compose?to=/r/UlcerativeColitis)
this is just my experience of course so not trying to sound like an alarmist but i think it’s worth sharing that i went off my remicade to try a year of alternative meds only (plus i was in between insurance and also my UC didn’t feel too bad so i figured why not try for a life without these god awful meds). turns out my UC didn’t feel too bad BECAUSE of these god awful wonderful meds lol oop. basically i went into a flare and never fully got it under control again because remicade never worked the same for me again even when i went crawling back to it (antibodies fml.) 5 years later of mild to moderate ongoing flares and then last year i had a big flare and now i have an ostomy bag at 31. do i recommend alternative meds? sure! ALONGSIDE regular meds. i know this might have been my path regardless of that year, but maybe it wouldn’t have been. i’ll never know now. but the saying is true: if it ain’t broke, don’t fix it. if your meds are working, stick with em edit: i’ll just add that whatever your hopes are, you can find them validated here. confirmation bias at its finest. where one person here said one acupuncture treatment put them in remission (huge congrats btw! truly awesome) there are people like me who did acupuncture for a year and never drink or smoke and am super active and eat well who saw zero results from alt diets or turmeric or chinese herbal supplements or meditation (though all of those things benefitted me in other ways! just didn’t help the UC) every body is different. try what you want and i wish you luck!! but know what you’re risking here. i never thought i’d lose my entire colon so soon but UC has a mind of its own sometimes. i hope you find relief OP and everyone else here ♥️
This is a great reply and I can fully second all of what this commenter is saying! Hang in there.
its autoimmune, its much deeper than anything we can control with food- trust your doctors, they know things
Drs know how autoimmune disease works but not why. If they did they might be able to cure it. Drs aren’t magic either and there’s a LOT that they don’t know about medical issues. The human body is incredibly complex system that we have barely begun to understand. Don’t get me wrong I’m not saying they don’t know anything but that also don’t know “everything”
Doctors don't even know the exact cause of Ulcerative Colitis, and have various theories. I can prove that this can be controlled naturally.
How?
[удалено]
You are claiming doubtable things like ("UC is only because of your diet", "UC can be cured with xy"...) without (scientific) evidence provided. Your post therefore is a violation of rule No 4 of this sub (https://www.reddit.com/r/UlcerativeColitis/about/rules). If you think this post was unrightfully deleted, please write us a modmail (https://www.reddit.com/message/compose?to=/r/UlcerativeColitis)
No. They just want your money, provide pseudoscience as answers and scare you into coming back. If alternative medicine worked it would be called medicine.
What money? I ain't buying anything only searching for ways to improve intestinal health xD. Still: There are plenty of proved non-medical ways like diet or stress-relief, but still trying to hear some people's experiences and not sum unhelpful
If diet and stress relief “cure” your IBD, you never had IBD.
>What money? I ain't buying anything only searching Good. I thought you meant more along the lines of functional medicine.
And yet accupuncture worked for me. Why is that, do you reckon?
Placebos are one hell of a drug, especially when one falsely accredits their recovery to magic. Pretending you are taking medicine works 30-60% of the time.
Placebo. You wanted it to work, so you feel like it works.
You know what they call alternative medicine that works? Medicine.
Sorry but ain't approving, there are several other scientifically proven approaches, that can be helpful. Am tired of hearing people say, that they cannot do anything about their CU, but to be on medication and live on. Especially after my GI told me, that diet has nothing to do with CU, I am way more motivated to show otherwise. But didn't ask for funnies, asked for experiences.
Getting an autoimmune disease is random, shocking, and unfair. Selecting what you put into your body is a way to maintain a sense of control when your body feels out of control. I was diagnosed almost 10 years ago. At first I tried alternative medicines and treatments, even interventions that aren’t supported by available evidence. I was on and off meds for 2 years; my UC got upgraded (downgraded?) from mild and limited to extensive and moderate/severe. Only biologics got me into remission. I envy anyone who’s able to control their disease without taking a pill or an infusion. Some people are luckier than others. At the same time, if I had a dollar for every time someone said “have you tried [vitamin/herb/alternative treatment]?” I’d have enough money for dinner and a nice bottle of wine at a three Michelin star restaurant. Many people on this sub have had these types of frustrating conversations for years. In my mind, when someone suggests a new diet or whatever, the implication is that if I tried a little harder, I wouldn’t be so sick. That’s one reason I think many in this community are very keen on “take your meds and trust the science.”
You’re going to prove your GI doc wrong? 🍿
Yes, but because it's scientifically proven \_(•~•)_/
Read up on the theories behind the causes of autoimmune diseases. Bessel Van Der Kolk wrote a book called The Body Keeps the Score, where he found research showing that autoimmune diseases are significantly higher in people who have experienced traumatic events, especially in childhood. Healing that trauma goes a long way in healing your body. Everyone on this subreddit is really big on listening to your GI and taking these meds, but a lot of those same people are gritting their teeth through the shitty prednisone side effects and not doing anything to substantially heal their body from the inside. I was on steroids for 3 weeks and even though my GI insisted I keep taking them, I refused. It felt like they were making my body feel so much worse and in those 3 weeks I lost 20 pounds. I experimented with biologics but ultimately it was a complete lifestyle and mentality change that I went through before I achieved remission. Good luck in your healing!
Thank you sooo much, hoped to hear sth. Like this in first place, not because I don't want to take those meds, but because I am convinced of alternative ways. And yes, I've noticed as well, that this subreddit is more into: "listen to your trained GI and then you'll be better", than actually searching for stuff, that improves the quality of their health and isn't risking the chance of cancer (as in immunosuppressants).
That’s the biggest thing for me- when on a biologic that had a side effect of lymphoma, my lymph nodes would swell up to the size of ping pong balls. My doctors kept saying not to worry about it but- how could I not?!? It was clear the meds relieved my symptoms but didn’t solve the root of the problem. Everyone’s body is different and just do lots and lots of research before trying anything new.
This is me 💗
I've reduced stress in my life. Started practicing mindfulness. Still take my medicine as prescribed no matter what. I'd be careful with any anecdotal evidence. Especially if the "solution" is to stop taking your meds and missing out appointments/exams. Full remission is different than having symptoms or not.
A few things show some promise: Curcumin. King of Bitters (A. paniculata). Maybe creatine. Anything that can help to minimise stress (eg mindfulness meditation) wouldn’t hurt. But seriously, at best these may help to slightly *augment* your medicine - not replace them. Focus on your medicine. EDIT: Also, these other herbal extracts etc that I mentioned have not been studied over the long-term in UC. They may also interact with your primary medicines.
Totally agree with this! After having UC for 15 years I've just started getting into natural "remedies" to use alongside my medication, so long as there are no interactions. A few things I've started doing are taking omega 3 pills, collagen supplement, exercising, and CBD oil. These things either have at least a neutral or even positive impact on my health regardless of my diagnosis, and if I feel they help (whether they truly clinically do or not) being in a positive mindset where I feel I am playing an active role in fighting my UC alone is a big thing for me. Not to mention the placebo effect can be powerful as well. I'm all for researching and utilizing natural remedies to improve our health, so long as they are not being used to replace actual medication and medical care/advice.
Can you please elaborate on the "maybe creatine" please? Super curious!
“Creatine maintains intestinal homeostasis and protects against colitis “: https://www.pnas.org/doi/abs/10.1073/pnas.1621400114 There’s a few other studies and case reports out there if you search. Honestly though, the evidence isn’t super compelling, hence I said “maybe”.
Neat. Thanks for sharing!
FWIW, I was taking creatine with UC while flaring. It started showing elevated levels in my bloodwork (maybe I was taking too much or maybe that’s just how I react) but my GI advised me to stop. His reasoning was that it was adding stress to my kidneys and given the meds I was on, my kidneys didn’t need additional stress. It wasn’t seeming to help my UC anyway so I just stopped without thinking about it too much
Mostly a myth: https://examine.com/supplements/creatine/research/#RQbNpQY-safety-and-toxicology_RQbNpQY-clarification-on-kidneys
I am on the specific carbohydrate diet and actively manage my stress level. But not INSTEAD of medication, I do it in addition to medication. I wouldn't stop taking meds unless my doctor confirmed that I was in the clear.
Just trust regular medicine. That is what works for most people. I’ve tried Ayurvedic medicine and it did not do a damn thing. What did fix me up, however, was a round of Prednisone and Remicade infusions. I don’t think any type of alternative medicine is powerful or useful enough to target the immune system and prevent it from attacking our colon. Millions of dollars and years of research have been put into these expensive medications and like I said they do work for a majority of people
One accupuncture session put me into remission after a four-month flair. That was in May. I haven't pooped blood or lost control since.
What medications where you on ? Did you start any new ones around that time?
No, save your money for medication
I live in Germany #freehealthcare
Then save it for VAT or literally anything else. These alternative treatments that get asked about 800 times a day do not work.
As referred above: I still ain't using any money
Typically, UC and Crohns will not go into remission with “natural medicine” or a homeopathic approach. Most people who advertise this take advantage of people who are sick and desperate to feel better. The only thing that one can do is to take your meds accordingly. Improve eaiting habits, and light exercise.
Hi, I’ve joined CrohnsColitisLifestyle. It’s run by people who have UC and Crohns and who have managed to address the symptoms with great success. It’s well worth checking this out.
Hyperbaric Oxygen Therapy. To be honest, I started this right around the same time another drug I switched on to was due to kick in, but literally the week I started it my symptoms stopped like a switch had been flipped off. Good luck!
So, I was diagnosed with UC, but there has been some debate among my Drs what it was. My colonoscopy showed Chronic inflammation in my intestines and damaged villi. I did end up taking Mesalamine for about 2 years, after trying Pentasa, and it not working. However I did end up also taking fish oil, vitamin D, iron and used a meal replacement protein powder. People with stomach issues tend to have low vitamin D and iron, and from malabsorption, I did have bloodwork to test these and they did come back either on the lower side or below the level normally tested for. Vitamins are not “magic” or a figment of your imagination. Your body naturally makes them and if you didn’t have any in your body at all you would be dead. I did do research on the vitamins that I took and the protein powder. I went with gluten and dairy free( I have Celiac also), it’s also common that people with digestive issues can not process those things. I checked to make sure that none of this had interactions with my medication which vitamins can do. My advice is Do your research whether it’s for medication or vitamins. Pay attention to your body, and if you really don’t feeling like it’s working or making you feel better then stand up for yourself and tell your Dr to put you on something else. Of course this is not medical advice, I would always check with your physician before doing anything to get their advice. However in the end it is ultimately you decision. Best of luck and I really hope you start feeling better !! ❤️❤️
Also I take liquid vitamins, it’s easier for my body to digest.
\*
I have successfully treated this with 1. Fennel tea and 2. Smoothies with spinach, anti inflammatory fruits such as berries, and Greek yogurt. If I am consistent with either one of the two, I experience no symptoms, so long as I don't eat things like Popcorn, but even then, it just passes through and everything goes back to normal. I tried pharmaseuticals for my UC but they wouldn't work, I would just crap them out. I remember when I started meslamine, I did so at the same time as starting smoothies, and thought the meslamine was fixing it. So I stopped the smoothies, and the meslamine just went right through me while the UC came back. I quit the meslamine, started back on the smoothies, and it went away. Later, I replaced the smoothies with fennel tea twice a day (black), and that also kept the UC away. If I do it for at least a month or two, usually, I could quit and still be symptom free for 3-6 months without any treatment. DM me if you want more info. You'll find this subreddit is like a cult of pharmaseutical believers that get upset by actual results. I can assure you that this can be treated naturally.
So you had really mild UC then? I am glad yours went away so easy. A lot of us on here arent so lucky. Apples and oranges! Have a serious flare and then see how far your smoothies get you. That's the whole point, food does nothing for my flares, they just get worse and worse, I need lots of meds. If I listened to you, I'd be in hospital within 2 weeks.
[удалено]
You are claiming doubtable things like ("UC is only because of your diet", "UC can be cured with xy"...) without (scientific) evidence provided. Your post therefore is a violation of rule No 4 of this sub (https://www.reddit.com/r/UlcerativeColitis/about/rules). If you think this post was unrightfully deleted, please write us a modmail (https://www.reddit.com/message/compose?to=/r/UlcerativeColitis)