i’m sixteen and i was diagnosed with crohn’s disease just a couple months ago. i know i have only just reached the surface of the different struggles and symptoms, but it has been very difficult and a major life style change. however, i find it very comforting to know there’s someone else out there with my same struggles but they’re still prospering and living a great life. thank you for making these videos and letting not only me, but other people with our disease, that were not alone.
Kylee Brown hey try the sc diet and check out kenny d honnas channel for tips its been helping me alot... i was recently diagnosed too and said no to meds right off the bat
I tried med free chrons disease. But my body said nope and lost 2ft off my intestinal track and had major flares.becareful it comes on fast.now back on meds .learned my lesson
I got diagnosed with crohns when I was 4 or 5 and I’m almost 13 now. I have had so much problems through this 8 years but since January this year I started a vegetarian diet and it has really helped my crohns. I still take medication but if I miss one day that doesn’t matter and I feel good anyway which I haven’t before. I’m so glad I find your channel cuz I have always felt like I was kinda alone and that no one really understood what I was going through, thank u a lot!!
I love your channel! I can relate to so many things. It's really nice knowing I'm not the only one going through this. I have binge watched all of your videos! ♥♥♥
Omg, I got diagnosed at the beginning of this year & I went on steroids and azathioprine & methotrexate both landed me in hospital as my body was rejecting both of them (different times this year) and I’ve been natural for 3 months & I feel the best I’ve ever felt!! I’m going to try and stay natural for as long as I possibly can! I don’t want the side effects of those drugs later on in life! So good to see you talking about this ❤️
Oh thank goodness! I saw the title and was super worried. Very happy to hear you seting the record straight right at the top. I'm glad to hear you've found a path that works for you! I have also gotten off azathioprine, less is sometimes more. But I'm on Stellara and it's a miracle for me. As you so rightly said, it's different for everyone.
I think a key thing here for other people is that people can have different levels of cal. protectine. If you always had a high level, you can't just stop outta nowhere and eat whatever you want. Not saying you cannot achieve a medication free life, but you have to work really hard to keep your gut healthy
Oh I can’t thank you enough for this video!! After requiring emergency surgery years ago I was in remission and able to be off Chron’s meds for 22 years. Now my condition has changed and I am needing meds in order to maintain an acceptable quality of life. Your insights are in line with my experiences living with this disease for the past 24 years. The truth is that I also find, as I approach my 59th birthday, that my body needs different kinds of support in general than it did in my thirties. Your sharing is a source of comfort and inspiration to me. Keep staying true to yourself and enjoy life💕
Hello! You literally have inspired to me to start a vlogging channel. I have Moderate/severe Crohns disease. I have questions. I have Advice. I have personal experiences to share as well! Thank you for the inspiration . Together we can help make a more of a voice to raise awareness for this invisible illness
I went through the exact same thought process about taking mediation. I have consistently weaned myself off medication every single time I've been prescribed after a flare up. I have tried every single diet out there, lived a very healthy life style determined to make it work without medication. I am now going through my 3rd flare up in 3 years and deeply regret my decision. I will never not take medication again. No matter what your lifestyle is like, this illness will win over time if untreated. I hope you continue to be healthy and completely respect we're all on our own journey with this.
Amen! That’s what people and I at one point believed. I had a healthy lifestyle and exercised. I looked good on the outside but had the worse flare up in my 30 years of having this disease. As you get older with this autoimmune disease it can change on you in a heart beat.
I love this video! I’m getting to the point where I want to start sharing my story. Today I’m getting back on meds Stellara after being off humira for a year. In this last year 3 hospital admissions and major struggles so Doc said it just is getting worse. Thanks so much
I get what your point is. Although the medication was working, you wanted to be able to know what your body needs by choosing the holistic approach. This meant that going off medication would let you see how certain foods affect you. By choosing the foods your body responds well to, you are able to feel better without medication. ❤️❤️❤️
thank you so much for making this video! i just found your channel and I absolutely love it. I have crohn's as well and it was really nice to find you, you're great
I'm so glad you're ok and you find a way to deal with Crohn's without med ♥ Unfortunately I received an additional dose to my treatment ... because of the stress I am no longer in remission .. basically I lost in 2 months what I've won in 2 years. I'll hold on to your advice :)) " If u don't make good decisions at least make sure they're funny" ♥♥♥
Very informative video.Thanks for all your posts.I was diagnosed with chrohns 2 and a bit years ago.Medication i was on was horrible.Side effects were truly awful.Nausea, catching every cold and flu going, tiredness and hair-loss.Thanks to the wonderful Aziathioprine.Terrible drug.Personally for me the side effects were too much.Decided to go on a gluten and dairy free diet and take CBD oil, from cbd brothers..My life has changed completely.I found out that i had non celiac wheat sensitivity which was causing terrible inflammation.So true about the diet being involved with flares. The cbd oil was a miracle.Well worth checking out buddy.Take care and peace.Hope everything works out for you and to everyone who is battling any disease.
I was recently (2 months ago) diagnosed with Crohn’s disease after several endoscopes, colonoscopies, CT scan’s, bloodwork, biopsies etc. I was having a flare up a few months before I had my “scopie’s” this year. I changed my diet and I felt better and some of my more severe symptoms went away (pre scope’s). My gastroanologist put me on the same meds that you were on. I read the side effects and thought NO WAY! I haven’t taken them and I see my doctor again tomorrow. I for the most part feel good when it comes to my “gut.” I’m still exhausted, but like you I would rather feel what my body is telling me than to take those meds!! The side effects are horrible! Like you when my body starts telling me I’m having a flare up I’ll consider the meds. but I won’t right now. Not to indorse but I started taking CBD gummies. 25mg in the am and 50mg in the evening. In the am it does help with my gut pain. I tried to not take it until my gut starts bugging me. But, I’ve decided that it works so well that I pretty much take it everyday now. It also helps with my insomnia. I know ironic but true! You can be totally exhausted from Crohn’s AND not able to sleep at night (my sarcasm but still true.) I’m really enjoying watching your videos. I’ve watched several just shaking my head like “preach, preach!!” So I decided I had to leave you a comment. As below…speaking for us Crohnies🤪
Hey fellow cronie! I know the pain you are talking about. It stinks. My dr reccomended I try turmeric. I take it in pill form morning and evening. It helps me greatly!! Just an idea to try. It's not for everyone, and it doesn't help some at all. Glad you're doing well.
@@KassieP-sf6nz it helps reduce inflammation. That can be enough for some to help reduce pain and problems from Crohn's. Never said it stopped or cured it. There isn't a cure at the moment.
I went for a long stretch without meds (close to 10 years I believe), now I'm back on things, I haven't noticed too much good things from them, I mean it took about 2 years to get my self back under control searching meds and such. now my joints are all on fire, so where my crohn's seems nice, I can hardly do the things I want to unless I take a bunch of naproxen which apparently people with crohn's shouldn't take. Things will get better, I just hate waiting.
I've recently turned to Vegetarianism & hoping it will help with my Crohns! I think been med free is important but also if we need meds we need them lol its just trial & error sometimes. Love Ya XxXxXxXxXxXxXxX
Couldn't agree with you more, Jessie! Trial and error is the main thing - learning from our own body's needs and listening when it's shouting for help! Hope being veggie sheds some positive light on the situation for you, let me know how you get on. L x
Ive been a sufferer since i was 6. I chose to come off all of my medications when i was 14. Began using strict diet and more recently treating with medical canabis. Im yet to have any surgery wich was recommended. I still flare. But i will say im able to function.
Hey, Im a fan of your vids i to have Crohns since 2013 im 23 now. I thought since that you have helped me through a hard time that I could help you and other people with the same issue. I've contacted a friend that has a TH-cam channel he like to live stream his content. I've mentioned your TH-cam channel hes going to kindly shout you out so that the word about Crohns is out there more. To show people there not the only ones going though it and to show that theirs ways to over come it. Thanks I hope you done mind but i thought I was a nice thing to do.
On Aza at the moment, but it's been 6 years and I'd love to come off them (every doctor has said my blood is fine but I don't feel fine!) been considering the natural approach for a while - we shall see! this video was very refreshing, thank you! x
I love your channel. I’m having a colonoscopy next week to confirm crohns but I know it’s crohns. Only taken the bloody doctors 7 years 😬 Thank you so much for your very informative and funny vlogs. Big hugs and how are you now ? Xxxx 💕💕💕
Hi I have recently been taken off infliximab as I was told I was in remission, I had been getting infusions every 6 weeks for 7 years and was really worried I would get really ill again, I have had good and bad days but I totally understand what you are saying about being in control of your own body, I could eat and drink everything when I was getting my treatment just suffered from bloating at times but now I am more aware of what I eat, it’s only been a couple of weeks since I stopped getting my treatment so it’s early days but I hope I can stay drug free, as much as I loved the freedom of my treatment the side affect scare me, thank you for your video it has made me feel more positive and I hope you continue to feel well xx
Hey I've just had a flare and had two doses of inflixamix 7 days a part. Seems to have got the stools under control however I really do not want to to be on inflixamix. Two questions please and I know you are not a doctor How are you getting on now, are guy still off the medication? Are my better getting off the medication sooner rather than later I your opinion? Please reply I'd love to chat with you Kirk from the UK
@@kirkford28 I was put back on Infliximab after being off the medication for about 3 months I started flaring again I have been on it ever since every six weeks it the only thing that seems to keep me well I think I have been getting infusions for 12 years now
Hej my name is mirwais from Afghanistan i diagnosed uc 10 years ago now i lost too much weight and many other side effect still I get prednisolone and asacol I really tired of my life my English is not Soo good if u put English sub to understand or if some help me to sammarize what she said iam very happy to see your channel i was thinking iam only one in the world that has this disease
Amazing job and story. I have my crohns and proctitis try to keep it undercontrol with proper diet. If you need any help please let me know. I have done tons of research.
Hello there, at the present time I drink only water, almond milk and coffee. I eat only organic as much as possible. Organic white rice, tons of eggs, maple syrup, vegetables and fruits. Lots of almond milk and granola. Coffee but No alcohol, No red meat. No meat at all if you can and No processed foods or takeout. And No NSAIDs. I just started making a lental stew with veggies and mix up the veggies here and there and I eat that over rice all week. Just try to make everything you eat your self. :) @@ElijahTWinch
I'm suffering from crohn disease from last 5 years and now from last 7 months taking remsima 120mg at start it was really good and I gain weight from 45kg to 50kg but suddenly its not working now and again diarrhea with bleeding, stomach pain and fatigue etc. Seriously am struggling for good life or normal life. :(
I'm with you I'm the same but with ulcerative colitis I'm even away on holiday and I'm in so much pain and discomfort the feeling of needed the rest room everytime you feel that sudden urge is a horrible feeling 😩
Please keep us updated!! how are you feeling without meds?? My predisone and aziothrprine has finished. On pentasa only at the moment. Im doing good on a strict diet regime
Very useful, as I’m on 150 m a day azathioprine , my stomach is fine now with it , arthritis and tiredness still exists and occasional nausea , it’s good to find out what could happen it I come off it . Your videos are really helping me to understand my concerns !
My old Babysitter told me about Celery Juice!! I'm gonna try it since now u can buy it in bottles, and not have to juice tons of Celery to get a cup. Cross your fingers!! Hope your doing well my friend. Thanks for the Videos
So glad that I came across your channel as I’m doing the same thing at the moment, coincidence much? Lol I had been on azathioprine for a few years and made the decision to come off it, hated the side effects especially Suppressing my immune system! And on top of that my 6weekly IV meds started to give me complications.. fun. So now going down the natural route.. it’s all trail and error really. Anyways, So happy I found your page, you’re funny and real! Keep it up x Hope all goes well for you
Omg "if u don't make good decisions at least make them funny" I died🤣🤣🤣🤣🤣 I needed a laugh I currently take Stelara and I still am in the toilet a lot! However I feel better than I did without it, I completely agree it's personal Love ur earrings they r too cuuute❤️ Thank u for sharing ur journey
Hahaha! Agree with you on that completely - it's so personal! Glad the meds are making you feel a LITTLE better, as it's better than nothing, right?! The earrings are from H&M, I basically live in them! L x
I also take Stelara, and the only side effect I have noticed is that I get sicker a lot more often... In the last half year alone I’ve had 3 fevers that lasted 3-6 days... Otherwise I feel good :D
anyone found a way to treat bad flares of crohns without medication? i'm worried the drugs are so intense that they are causing other issues (mercaptopurine, eg. lymphoma, liver and kidney toxicity, etc) and finding an alternative
I have just found your channel and I love it! My boyfriend has Crohn and since I met him 3 years ago he has been pretty good. I haven't seen all your videos but I'm risking: how is being in a relationship when you have a bad time (a really really bad time) with Crohn? I would love to know the point of view from the other side. I'll be waiting for more videos! Lots of love from Spain!!!!
Love this video! I’m all about listening to my body and what it needs. I’m thinking about a vegetarian diet because I’m just not tolerating meat as much but I’m nervous about adding more fiber. Any tips? I’m on mercaptopurine currently (only about 6 weeks in).
I have ulcerative colitis been off meds for 3 years but lately (this past week) I’ve been waking up with lower stomach pain.. not a sharp pain, but I wake up and feel like tenderness and soreness.. it goes away after my first bowl movement do you know what it could be?
Fair play to you!! I tried stopping predisone (steroid) the aziaphioprine and pentasa i stayed on but ended up flairing up :( Hope you stay in good health miss!!
I literally relate to this so much i havent been on alot of medication just the basics like steroids anti inflammatories ect. And it made me feel great Crohn’s wise but i just didnt feel good i gained alot of weight and i would rather just deal with the Crohn’s my way and i can actually manage it with diet which is great but also i have pretty extreme anxiety and its sort of hard to sort out my stomach issues and anxiety because they are kind of connected in a way (i get anxiety my stomach hurts, my stomach hurts i get anxiety) so i honestly dont know if i want to go on medication, Crohn’s really sucks lol
I had my consultation yesterday. So disappointed. I feel like the doctors are only concentrating on the amount of toilet visits and not the reality of how u actually feel in yourself. Your blood looks good so u must be fine! Well, who cares that u don't feel like waking up in the morning. I complained about Humira, wanted to come off it, too many side effects plus still have pain so what's the point? To shed all my hair? Lol... Now I have to wait 6 months for colonoscopy. It might get worse it might not. It's always reassuring to hear that from a doctor. Lol
I completely understand how you feel. I have had Crohns disease for 20yrs. No medication has worked,humira worked a little bit in that it ever so slightly reduced the number of times i went to the toilet. Now i am on Stelara and what do u know it aint working either. Im due for a sigmoidoscopy at the end of next week and im not expecting good news. This disease has completely destroyed my self esteem. I used to be brimming with confidence before this nightmare began. My doctor says im the worst case of Crohns disease in a patient that she has ever seen,so thanks doc another blow to the self esteem that i could do without. The doctors keep trying to get me to have a stoma done or they said i will end up losing my colon. I refuse. I really hope things go well for you,its a terrible disease. Stay strong and keep positive as hard as that can be sometimes. I wish you well
I live in Australia. Just looked up that Coimbra protocol,its not a cure and may only give partial relief so its a waste of time. Im lucky that i have a very honest surgeon who has told me that with Crohns disease a bag will not always be of benefit for many reasons. You do know that Crohns affects anywhere from your mouth to your bottom/bum? With me i have multiple fistula's. If i was to get a bag(hate the thought of it) my surgeon has said i could quite possibly develop fistula's at the bag site. So im not keen at all on the bag. You see just because they cut out the diseased part of your bowel,with crohns there's nothing to say it wont pop up somewhere else. Doctors dont like hearing that you might be thinking of trying something natural,its outside of what they supposedly know. My doctor flipped out when i told her i was going to try a natural alternative. I shouldnt have opened my mouth. Im trying a few different pro-biotics and other supplements with some success. Because of how sick i am its going to take a while to get a hugely noticeable difference. Im having a procedure Friday so i'll know how things have progressed after that. I feel like this new medication im on(Stelara) isnt doing a thing,if anything its making me worse since ive been on it. Can i ask you before you were diagnosed had you been on a lot of anti-biotics through your life?
All my problems started with stomach pains as a child, not necessarily diarrhoea, I just felt sick and unwell after eating. especially meat which made me violently throw up, stopped eating that long ago.they treated my stomach problems back then by different medication but it took up until my late teens, early twenties to see a Gastroenterologist I only got diagnosed with Crohns after my first bowel resection .up until then I had IBS or "stomach flu" or food poisoning (even though I ate nothing) which ended up on operating table,lol. I wasn't really taking any antibiotics as a child. Apart from my stomach pains I never had any health problems that would require them. I totally agree with u. There will be other complications with the bag and if they remove your colon there's no way of going back unless they want to do it temporarily? My mum's friend has not 1 but 2 permanent bags.... She doesn't even want to leave the house :(
Its amazing how this disease has surfaced in us differently. There seems to be nothing consistent in regards to the signs of having this awful disease. With me i had minor problems with my bottom when i was pre teenager,then they went away until my mid twenties and even then how i was diagnosed was because i went to the toilet 1 day and the bowl was just blood. So from that i was diagnosed with Crohns. Im the opposite to you as meat sits easy with me and stays in my body longer so i go to the toilet less,but you cant live off meat alone. The bag with me would to start be temporary to rest my colon and hopefully allow it to heal because i have abscess' inside my bottom. They 1st time they scraped them out i nearly bled to death. How come your mums friend has 2 bags? I dont understand that. We just cant give up and we have to keep pushing forward. Some days can be tough,really tough but just remember there is always somebody who is more worse off than you and me
Yeaa!!! That’s what I wanted to hear so can I eat whatever I want when I’m azathioprine because i have to start this medication in a couple of weeks but I’m so scared of the side affects ☹️
Hey, I definitely would not say that 'you can eat whatever you want' is good advice, so please be careful! In my experience (I can only talk about my own experience and am not a medically trained professional) I was lucky because Azathioprine massively reduced my stomach symptoms and therefore allowed me to have a relatively 'normal' diet compared to what I had been used to. However, I know that a lot of people are not as lucky as me and some people never manage remission through Azathioprine, so unfortunately what works for me may not work for someone else. Please make sure you discuss any decisions about your body, diet and medication with your GP, hospital consultant or dietician! Good luck, Lx
I really don’t understand your logic, the medication doesn’t make you numb, so the reason you couldn’t feel anything when you were on the medication was because your bowels weren’t getting damaged because the medication stopped your body attacking itself. It doesn’t mask damage it prevents it. When you are off medication you can feel it because your bowels are getting damaged 🤔
Thanks for your comment. I completely understand where you're coming from, but we all have different outlooks on the disease and how we deal with it. As I always state, this is just my experience and my opinion - so I'm not asking anyone to fully understand my logic! Good luck with your own journey. L x
Malia Grant with no medication people with CD can end up with serious complications like fístulas, ulcerations, abscess, bleeding, obstruction or perforation of the small intestine needing emergency surgical intervention to remove the damaged segments. Or ending with serious infections or sepsis .
@@pestanaspecas6501 perhaps. But many individuals do live with chrons and keep it under control through diet and lifestyle. No it’s not easy. Some people have been on every drug and never even tried to change their diet. That to me is insanity.
I’ve had chrons for nearly 10 years, been on many of the biologics, antibiotics, and steroids. I still developed abscesses, fistulas, and even had sepsis, all while on meds. Personally, I feel the meds have exacerbated my condition. They literally make you more susceptible to infection, and weaken your ability to fight things off. I’m coming off the meds now, with a strict regimen from a very good naturopath. It’s a whole lifestyle you have to adopt to do it successfully, but I am willing to try, as the regular treatments have been a nightmare for me.
Good evening !!! Amazing information depicted!!! Obviously every disease depends on the lifestyle of a person and we need a permanent solution for this so we should prefer Planet Ayurveda's treatment which will not have any side effects. all the products are pure and vegetarian.
i’m sixteen and i was diagnosed with crohn’s disease just a couple months ago. i know i have only just reached the surface of the different struggles and symptoms, but it has been very difficult and a major life style change. however, i find it very comforting to know there’s someone else out there with my same struggles but they’re still prospering and living a great life. thank you for making these videos and letting not only me, but other people with our disease, that were not alone.
Kylee Brown hey try the sc diet and check out kenny d honnas channel for tips its been helping me alot... i was recently diagnosed too and said no to meds right off the bat
I tried med free chrons disease. But my body said nope and lost 2ft off my intestinal track and had major flares.becareful it comes on fast.now back on meds .learned my lesson
I got diagnosed with crohns when I was 4 or 5 and I’m almost 13 now. I have had so much problems through this 8 years but since January this year I started a vegetarian diet and it has really helped my crohns. I still take medication but if I miss one day that doesn’t matter and I feel good anyway which I haven’t before. I’m so glad I find your channel cuz I have always felt like I was kinda alone and that no one really understood what I was going through, thank u a lot!!
I love your channel! I can relate to so many things. It's really nice knowing I'm not the only one going through this. I have binge watched all of your videos! ♥♥♥
Ah, Ally! You absolute babe! That means so much to me, thank you! L x
My wife stopped taking her Crohn's meds (that didn't work) soon after taking 5%CBD oil, it completely cured her in weeks and has been fine ever since!
What is CBD? oil
I suffer from ulcerative colitis
@@healthawareness CBD is cannabis oil
Sure it did... I've worked with cannabis for 15 years. The amount of cbd needed is too much. You are lying
@@supernova7799 lying? She now takes 15% Sativa CBD paste. Still no meds.
Omg, I got diagnosed at the beginning of this year & I went on steroids and azathioprine & methotrexate both landed me in hospital as my body was rejecting both of them (different times this year) and I’ve been natural for 3 months & I feel the best I’ve ever felt!! I’m going to try and stay natural for as long as I possibly can! I don’t want the side effects of those drugs later on in life! So good to see you talking about this ❤️
What do you mean natural?
How did it work for you to stay natural till to date? I am only asking because I am at the same point as you were 4 years ago.
Oh thank goodness! I saw the title and was super worried. Very happy to hear you seting the record straight right at the top. I'm glad to hear you've found a path that works for you! I have also gotten off azathioprine, less is sometimes more. But I'm on Stellara and it's a miracle for me. As you so rightly said, it's different for everyone.
I think a key thing here for other people is that people can have different levels of cal. protectine. If you always had a high level, you can't just stop outta nowhere and eat whatever you want. Not saying you cannot achieve a medication free life, but you have to work really hard to keep your gut healthy
Totally agree mines 1800 cal protectin I try my best to eat clean but I don't even know anymore
Could possibly get an update? 👀
Updates coming soon! New video gone live this evening but love the idea of an overall 'update'!
@GUTINSTINCT would love to see an update! Have you needed any meds over the past four years? Any serious flairs?
Oh I can’t thank you enough for this video!! After requiring emergency surgery years ago I was in remission and able to be off Chron’s meds for 22 years. Now my condition has changed and I am needing meds in order to maintain an acceptable quality of life. Your insights are in line with my experiences living with this disease for the past 24 years. The truth is that I also find, as I approach my 59th birthday, that my body needs different kinds of support in general than it did in my thirties. Your sharing is a source of comfort and inspiration to me. Keep staying true to yourself and enjoy life💕
22 years wooow? What was the surgery?
@@Knighttus My Chron’s perforated my intestine while I was waiting for a new drug to take effect. Happy to say, no other surgeries have been needed.
@@lindak5038 are you on any medecine?
@@Knighttus I am currently taking Azathioprine daily and Remicade infusions every eight weeks.
@@lindak5038 azathioprine and remicade? Is remicade forever? Omg
Hello! You literally have inspired to me to start a vlogging channel. I have Moderate/severe Crohns disease. I have questions. I have Advice. I have personal experiences to share as well! Thank you for the inspiration . Together we can help make a more of a voice to raise awareness for this invisible illness
I went through the exact same thought process about taking mediation. I have consistently weaned myself off medication every single time I've been prescribed after a flare up. I have tried every single diet out there, lived a very healthy life style determined to make it work without medication. I am now going through my 3rd flare up in 3 years and deeply regret my decision. I will never not take medication again. No matter what your lifestyle is like, this illness will win over time if untreated. I hope you continue to be healthy and completely respect we're all on our own journey with this.
Amen! That’s what people and I at one point believed. I had a healthy lifestyle and exercised. I looked good on the outside but had the worse flare up in my 30 years of having this disease. As you get older with this autoimmune disease it can change on you in a heart beat.
Please take celery & blueberry juice, its amazing for ulcers
I love this video! I’m getting to the point where I want to start sharing my story. Today I’m getting back on meds Stellara after being off humira for a year. In this last year 3 hospital admissions and major struggles so Doc said it just is getting worse. Thanks so much
I get what your point is. Although the medication was working, you wanted to be able to know what your body needs by choosing the holistic approach. This meant that going off medication would let you see how certain foods affect you. By choosing the foods your body responds well to, you are able to feel better without medication. ❤️❤️❤️
What did your IBD Nurse say when you said you wanted to come off treatment?
thank you so much for making this video! i just found your channel and I absolutely love it. I have crohn's as well and it was really nice to find you, you're great
I'm so glad you're ok and you find a way to deal with Crohn's without med ♥ Unfortunately I received an additional dose to my treatment ... because of the stress I am no longer in remission .. basically I lost in 2 months what I've won in 2 years.
I'll hold on to your advice :)) " If u don't make good decisions at least make sure they're funny" ♥♥♥
Very informative video.Thanks for all your posts.I was diagnosed with chrohns 2 and a bit years ago.Medication i was on was horrible.Side effects were truly awful.Nausea, catching every cold and flu going, tiredness and hair-loss.Thanks to the wonderful Aziathioprine.Terrible drug.Personally for me the side effects were too much.Decided to go on a gluten and dairy free diet and take CBD oil, from cbd brothers..My life has changed completely.I found out that i had non celiac wheat sensitivity which was causing terrible inflammation.So true about the diet being involved with flares. The cbd oil was a miracle.Well worth checking out buddy.Take care and peace.Hope everything works out for you and to everyone who is battling any disease.
Just found you! So needed these videos and your community! Making crohns fun and colourful and not functional, and chatty :)
I was recently (2 months ago) diagnosed with Crohn’s disease after several endoscopes, colonoscopies, CT scan’s, bloodwork, biopsies etc. I was having a flare up a few months before I had my “scopie’s” this year. I changed my diet and I felt better and some of my more severe symptoms went away (pre scope’s). My gastroanologist put me on the same meds that you were on. I read the side effects and thought NO WAY! I haven’t taken them and I see my doctor again tomorrow. I for the most part feel good when it comes to my “gut.” I’m still exhausted, but like you I would rather feel what my body is telling me than to take those meds!! The side effects are horrible! Like you when my body starts telling me I’m having a flare up I’ll consider the meds. but I won’t right now. Not to indorse but I started taking CBD gummies. 25mg in the am and 50mg in the evening. In the am it does help with my gut pain. I tried to not take it until my gut starts bugging me. But, I’ve decided that it works so well that I pretty much take it everyday now. It also helps with my insomnia. I know ironic but true! You can be totally exhausted from Crohn’s AND not able to sleep at night (my sarcasm but still true.)
I’m really enjoying watching your videos. I’ve watched several just shaking my head like “preach, preach!!” So I decided I had to leave you a comment.
As below…speaking for us Crohnies🤪
Hey fellow cronie!
I know the pain you are talking about. It stinks. My dr reccomended I try turmeric. I take it in pill form morning and evening. It helps me greatly!! Just an idea to try. It's not for everyone, and it doesn't help some at all. Glad you're doing well.
Totally agree with you.. Turmeric is really really helpful
Turmeric doesn't stop Crohn's
@@KassieP-sf6nz it helps reduce inflammation. That can be enough for some to help reduce pain and problems from Crohn's. Never said it stopped or cured it. There isn't a cure at the moment.
I went for a long stretch without meds (close to 10 years I believe), now I'm back on things, I haven't noticed too much good things from them, I mean it took about 2 years to get my self back under control searching meds and such. now my joints are all on fire, so where my crohn's seems nice, I can hardly do the things I want to unless I take a bunch of naproxen which apparently people with crohn's shouldn't take. Things will get better, I just hate waiting.
Caleb naproxen is very bad for the bowels x
Ya, not being able to move is hard on life though, I need to work and enjoy life. Laying in bed in pain is rough.
Look into cabbage juice and Phoenix tears !
Why take naproxen when you could take a non-NSAID like azathioprine?
I've recently turned to Vegetarianism & hoping it will help with my Crohns! I think been med free is important but also if we need meds we need them lol its just trial & error sometimes. Love Ya XxXxXxXxXxXxXxX
Couldn't agree with you more, Jessie! Trial and error is the main thing - learning from our own body's needs and listening when it's shouting for help! Hope being veggie sheds some positive light on the situation for you, let me know how you get on. L x
Jessie Reid try cabbage juice !
@@About36GreekssI tried cabbage juice but once I drank 32oz and still on one mesalamine, my feet got edema
Ive been a sufferer since i was 6. I chose to come off all of my medications when i was 14. Began using strict diet and more recently treating with medical canabis. Im yet to have any surgery wich was recommended. I still flare. But i will say im able to function.
Hey, Im a fan of your vids i to have Crohns since 2013 im 23 now. I thought since that you have helped me through a hard time that I could help you and other people with the same issue. I've contacted a friend that has a TH-cam channel he like to live stream his content. I've mentioned your TH-cam channel hes going to kindly shout you out so that the word about Crohns is out there more. To show people there not the only ones going though it and to show that theirs ways to over come it. Thanks I hope you done mind but i thought I was a nice thing to do.
On Aza at the moment, but it's been 6 years and I'd love to come off them (every doctor has said my blood is fine but I don't feel fine!) been considering the natural approach for a while - we shall see! this video was very refreshing, thank you! x
One of the prettiest girls on TH-cam representin us Crohnies.
I love your channel. I’m having a colonoscopy next week to confirm crohns but I know it’s crohns. Only taken the bloody doctors 7 years 😬 Thank you so much for your very informative and funny vlogs. Big hugs and how are you now ? Xxxx 💕💕💕
Hi I have recently been taken off infliximab as I was told I was in remission, I had been getting infusions every 6 weeks for 7 years and was really worried I would get really ill again, I have had good and bad days but I totally understand what you are saying about being in control of your own body, I could eat and drink everything when I was getting my treatment just suffered from bloating at times but now I am more aware of what I eat, it’s only been a couple of weeks since I stopped getting my treatment so it’s early days but I hope I can stay drug free, as much as I loved the freedom of my treatment the side affect scare me, thank you for your video it has made me feel more positive and I hope you continue to feel well xx
Hey I've just had a flare and had two doses of inflixamix 7 days a part. Seems to have got the stools under control however I really do not want to to be on inflixamix. Two questions please and I know you are not a doctor
How are you getting on now, are guy still off the medication?
Are my better getting off the medication sooner rather than later I your opinion?
Please reply I'd love to chat with you
Kirk from the UK
@@kirkford28 I was put back on Infliximab after being off the medication for about 3 months I started flaring again I have been on it ever since every six weeks it the only thing that seems to keep me well I think I have been getting infusions for 12 years now
@@graceholland2727 thank you & glad it works for you. Do you get any side effects?
@@kirkford28 I don’t seem to get any side effects it gives me more energy I feel more tired leading up to my next infusion
Hej my name is mirwais from Afghanistan i diagnosed uc 10 years ago now i lost too much weight and many other side effect still I get prednisolone and asacol I really tired of my life my English is not Soo good if u put English sub to understand or if some help me to sammarize what she said iam very happy to see your channel i was thinking iam only one in the world that has this disease
Amazing job and story. I have my crohns and proctitis try to keep it undercontrol with proper diet. If you need any help please let me know. I have done tons of research.
What does your daily diet look like?
Hello there, at the present time I drink only water, almond milk and coffee. I eat only organic as much as possible. Organic white rice, tons of eggs, maple syrup, vegetables and fruits. Lots of almond milk and granola. Coffee but No alcohol, No red meat. No meat at all if you can and No processed foods or takeout. And No NSAIDs. I just started making a lental stew with veggies and mix up the veggies here and there and I eat that over rice all week. Just try to make everything you eat your self. :) @@ElijahTWinch
I'm suffering from crohn disease from last 5 years and now from last 7 months taking remsima 120mg at start it was really good and I gain weight from 45kg to 50kg but suddenly its not working now and again diarrhea with bleeding, stomach pain and fatigue etc. Seriously am struggling for good life or normal life. :(
I'm with you I'm the same but with ulcerative colitis I'm even away on holiday and I'm in so much pain and discomfort the feeling of needed the rest room everytime you feel that sudden urge is a horrible feeling 😩
I was vegan when I got my Ulcerative Colitis flare-up... How is going vegan going to help you if the fiber intake is higher? :(
Omg me too
Please keep us updated!! how are you feeling without meds?? My predisone and aziothrprine has finished. On pentasa only at the moment. Im doing good on a strict diet regime
Very useful, as I’m on 150 m a day azathioprine , my stomach is fine now with it , arthritis and tiredness still exists and occasional nausea , it’s good to find out what could happen it I come off it . Your videos are really helping me to understand my concerns !
Love this video! Have enjoyed watching your journey to a more holistic approach and being more in tune with your body! Keep going xoxoxo
Are you on any meds now?? 5ys since this video. Thanks J Dubz
Where has the time gone?! I'm back now recording new videos 👋 let me know if there are any specific topics you'd like to see!
My old Babysitter told me about Celery Juice!! I'm gonna try it since now u can buy it in bottles, and not have to juice tons of Celery to get a cup. Cross your fingers!! Hope your doing well my friend. Thanks for the Videos
CROSSING FINGERS AND TOES! @@jdubs1007 Really intrigued to hear how you get on, good luck!
So glad that I came across your channel as I’m doing the same thing at the moment, coincidence much? Lol
I had been on azathioprine for a few years and made the decision to come off it, hated the side effects especially Suppressing my immune system! And on top of that my 6weekly IV meds started to give me complications.. fun.
So now going down the natural route.. it’s all trail and error really.
Anyways, So happy I found your page, you’re funny and real! Keep it up x
Hope all goes well for you
I have crohns and I get really sore mouth just wonder if you do? X
Omg "if u don't make good decisions at least make them funny" I died🤣🤣🤣🤣🤣 I needed a laugh I currently take Stelara and I still am in the toilet a lot! However I feel better than I did without it, I completely agree it's personal Love ur earrings they r too cuuute❤️ Thank u for sharing ur journey
Hahaha! Agree with you on that completely - it's so personal! Glad the meds are making you feel a LITTLE better, as it's better than nothing, right?! The earrings are from H&M, I basically live in them! L x
I also take Stelara, and the only side effect I have noticed is that I get sicker a lot more often... In the last half year alone I’ve had 3 fevers that lasted 3-6 days... Otherwise I feel good :D
I haven't had meds for 3 years forgot I have chroma untill I drink to much and to many takeaways then I stop eat healthy then I'm good as gold
anyone found a way to treat bad flares of crohns without medication? i'm worried the drugs are so intense that they are causing other issues (mercaptopurine, eg. lymphoma, liver and kidney toxicity, etc) and finding an alternative
I have just found your channel and I love it! My boyfriend has Crohn and since I met him 3 years ago he has been pretty good. I haven't seen all your videos but I'm risking: how is being in a relationship when you have a bad time (a really really bad time) with Crohn? I would love to know the point of view from the other side. I'll be waiting for more videos! Lots of love from Spain!!!!
Love this video! I’m all about listening to my body and what it needs. I’m thinking about a vegetarian diet because I’m just not tolerating meat as much but I’m nervous about adding more fiber. Any tips? I’m on mercaptopurine currently (only about 6 weeks in).
I have ulcerative colitis been off meds for 3 years but lately (this past week) I’ve been waking up with lower stomach pain.. not a sharp pain, but I wake up and feel like tenderness and soreness.. it goes away after my first bowl movement do you know what it could be?
good stuff ....... can't wait till your one year without meds anniversary
How do you feel now that you are off medication?
Fair play to you!! I tried stopping predisone (steroid) the aziaphioprine and pentasa i stayed on but ended up flairing up :(
Hope you stay in good health miss!!
I literally relate to this so much i havent been on alot of medication just the basics like steroids anti inflammatories ect. And it made me feel great Crohn’s wise but i just didnt feel good i gained alot of weight and i would rather just deal with the Crohn’s my way and i can actually manage it with diet which is great but also i have pretty extreme anxiety and its sort of hard to sort out my stomach issues and anxiety because they are kind of connected in a way (i get anxiety my stomach hurts, my stomach hurts i get anxiety) so i honestly dont know if i want to go on medication, Crohn’s really sucks lol
Can you touch on alcohol consumption on versus off medication?
I turned Pescatarian two years ago due to meat hurting my stomach more when digesting. It’s been good so far currently on Humira to control my Crohns
As your not on medication anymore do u still get flare ups?
Can you do a realistic what you eat in a day please xxxx 🌸🌸🌸
I had my consultation yesterday. So disappointed. I feel like the doctors are only concentrating on the amount of toilet visits and not the reality of how u actually feel in yourself. Your blood looks good so u must be fine! Well, who cares that u don't feel like waking up in the morning. I complained about Humira, wanted to come off it, too many side effects plus still have pain so what's the point? To shed all my hair? Lol... Now I have to wait 6 months for colonoscopy. It might get worse it might not. It's always reassuring to hear that from a doctor. Lol
I completely understand how you feel. I have had Crohns disease for 20yrs. No medication has worked,humira worked a little bit in that it ever so slightly reduced the number of times i went to the toilet. Now i am on Stelara and what do u know it aint working either. Im due for a sigmoidoscopy at the end of next week and im not expecting good news. This disease has completely destroyed my self esteem. I used to be brimming with confidence before this nightmare began. My doctor says im the worst case of Crohns disease in a patient that she has ever seen,so thanks doc another blow to the self esteem that i could do without. The doctors keep trying to get me to have a stoma done or they said i will end up losing my colon. I refuse. I really hope things go well for you,its a terrible disease. Stay strong and keep positive as hard as that can be sometimes. I wish you well
Hi Michael, thank you so much for your words
I live in Australia. Just looked up that Coimbra protocol,its not a cure and may only give partial relief so its a waste of time. Im lucky that i have a very honest surgeon who has told me that with Crohns disease a bag will not always be of benefit for many reasons. You do know that Crohns affects anywhere from your mouth to your bottom/bum? With me i have multiple fistula's. If i was to get a bag(hate the thought of it) my surgeon has said i could quite possibly develop fistula's at the bag site. So im not keen at all on the bag. You see just because they cut out the diseased part of your bowel,with crohns there's nothing to say it wont pop up somewhere else. Doctors dont like hearing that you might be thinking of trying something natural,its outside of what they supposedly know. My doctor flipped out when i told her i was going to try a natural alternative. I shouldnt have opened my mouth. Im trying a few different pro-biotics and other supplements with some success. Because of how sick i am its going to take a while to get a hugely noticeable difference. Im having a procedure Friday so i'll know how things have progressed after that. I feel like this new medication im on(Stelara) isnt doing a thing,if anything its making me worse since ive been on it. Can i ask you before you were diagnosed had you been on a lot of anti-biotics through your life?
All my problems started with stomach pains as a child, not necessarily diarrhoea, I just felt sick and unwell after eating. especially meat which made me violently throw up, stopped eating that long ago.they treated my stomach problems back then by different medication but it took up until my late teens, early twenties to see a Gastroenterologist I only got diagnosed with Crohns after my first bowel resection .up until then I had IBS or "stomach flu" or food poisoning (even though I ate nothing) which ended up on operating table,lol. I wasn't really taking any antibiotics as a child. Apart from my stomach pains I never had any health problems that would require them.
I totally agree with u. There will be other complications with the bag and if they remove your colon there's no way of going back unless they want to do it temporarily? My mum's friend has not 1 but 2 permanent bags.... She doesn't even want to leave the house :(
Its amazing how this disease has surfaced in us differently. There seems to be nothing consistent in regards to the signs of having this awful disease. With me i had minor problems with my bottom when i was pre teenager,then they went away until my mid twenties and even then how i was diagnosed was because i went to the toilet 1 day and the bowl was just blood. So from that i was diagnosed with Crohns. Im the opposite to you as meat sits easy with me and stays in my body longer so i go to the toilet less,but you cant live off meat alone. The bag with me would to start be temporary to rest my colon and hopefully allow it to heal because i have abscess' inside my bottom. They 1st time they scraped them out i nearly bled to death. How come your mums friend has 2 bags? I dont understand that. We just cant give up and we have to keep pushing forward. Some days can be tough,really tough but just remember there is always somebody who is more worse off than you and me
Yeaa!!! That’s what I wanted to hear so can I eat whatever I want when I’m azathioprine because i have to start this medication in a couple of weeks but I’m so scared of the side affects ☹️
Hey, I definitely would not say that 'you can eat whatever you want' is good advice, so please be careful! In my experience (I can only talk about my own experience and am not a medically trained professional) I was lucky because Azathioprine massively reduced my stomach symptoms and therefore allowed me to have a relatively 'normal' diet compared to what I had been used to. However, I know that a lot of people are not as lucky as me and some people never manage remission through Azathioprine, so unfortunately what works for me may not work for someone else. Please make sure you discuss any decisions about your body, diet and medication with your GP, hospital consultant or dietician! Good luck, Lx
GUT INSTINCT Okayy thank youuuu❤️
Hi! Any tips? I’ve just started azathioprine and am nervous that I might get side affects
❤️you
Hi Lotty! I did a video on Azathioprine last year - have a little look and let me know if it helps at all :) L x
the size effects for me only lasted about 6 weeks was defiantly worth getting on them
10 Keys to Conquer Crohn's & Colitis Jordan Rubin - please search it yourself ... May God bless you !
Do you also take medical cannabis?
Just wanna say I need that jumper in my life
Your so beautiful God bless you, your personality made me feel happy 🤍
♥️♥️♥️♥️ much love. I wish I would know you in real life, but I live in Germany 😅
I really don’t understand your logic, the medication doesn’t make you numb, so the reason you couldn’t feel anything when you were on the medication was because your bowels weren’t getting damaged because the medication stopped your body attacking itself. It doesn’t mask damage it prevents it. When you are off medication you can feel it because your bowels are getting damaged 🤔
Thanks for your comment. I completely understand where you're coming from, but we all have different outlooks on the disease and how we deal with it. As I always state, this is just my experience and my opinion - so I'm not asking anyone to fully understand my logic! Good luck with your own journey. L x
Malia Grant with no medication people with CD can end up with serious complications like fístulas, ulcerations, abscess, bleeding, obstruction or perforation of the small intestine needing emergency surgical intervention to remove the damaged segments. Or ending with serious infections or sepsis .
@@pestanaspecas6501 perhaps. But many individuals do live with chrons and keep it under control through diet and lifestyle. No it’s not easy. Some people have been on every drug and never even tried to change their diet. That to me is insanity.
I’ve had chrons for nearly 10 years, been on many of the biologics, antibiotics, and steroids. I still developed abscesses, fistulas, and even had sepsis, all while on meds. Personally, I feel the meds have exacerbated my condition. They literally make you more susceptible to infection, and weaken your ability to fight things off. I’m coming off the meds now, with a strict regimen from a very good naturopath. It’s a whole lifestyle you have to adopt to do it successfully, but I am willing to try, as the regular treatments have been a nightmare for me.
You're gorgeous 😍 the accent 😍
Natural things worked better for me .the meds were crap !!
4:03
Spam this time stamp...
Sorry 😘😂😂😂😂
i stopped taking plant foods lol
Your accent love it 😊
Stick with your medication!
Good evening !!! Amazing information depicted!!! Obviously every disease
depends on the lifestyle of a person and we need a permanent solution for this
so we should prefer Planet Ayurveda's treatment which will not have any side
effects. all the products are pure and vegetarian.
I can beleave that you had crohn and symptoms and is a bouel desease , and you were eating junk food . What do you expect.
💕💕