Living With Crohns Disease | My Experience After 4 Years
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- Опубліковано 4 жов 2024
- I've been living with Crohns disease for 4 years now, and there have been many ups and downs over that time. This video will cover my initial diagnoses, symptoms, the medication (Prednisolone Steroids, Azathioprine, Pentasa Mesalazine, Stelara) I've taken and my overall thoughts on handling this auto-immune disease. Crohns disease is a chronic inflammatory disease of the intestines, especially the colon and ileum, associated with ulcers and fistulae - according to the Oxford dictionary. I hope this video is useful to you if you have Crohns disease, or maybe you know someone who has Crohns disease and you want to know a little more about it.
My Instagram:
/ bendroege_
Cheers!
I hope you enjoyed this video about my experience with Crohns disease. I would love to hear your own stories, so feel free leave a comment to share your own experience :)
I am also suffering with chrons from a year and I have taken 7 doses of entyvio in usa but unfortunately I came back to india nd my symptoms are repeating slowly…sevierly constipated
My 13 year old was diagnosed. What a horrible disease. 😢
Can u tell what fod to avoid
I'm a 15-year-old who's been struggling with Crohn's since I was 11. I've faced many obstacles that have prevented me from growing up like a normal teenager. I took Pentasa, Remicade, Humira, etc. but my antibodies kept coming back. Every day I'm striving to improve myself, my diet, my skills, my fitness, and my lifestyle to beat Crohn's.
Respect man. It’s hard bro. I’ve had it since I was 6 then got diagnosed at 13 and went through a whole lot of medications until I was 15 I started remicade. I’ve been doing all right but recently been struggling a bit, but I hear there’s a new experiment drug that’s supposedly ground breaking so I might trial for that. Keep that mind strong kid, it’s the #1 fighter to help you through all the bs man.
@@Itspecialty I've gotta look into that! Thanks.
Hell yeah you got this!! In the long run you'll be so mentally strong, that no challenge will be too difficult, stay strong!
@@Itspecialtyhi, what is this ground breaking drug?
@@joehutley3832 my doctor told me something about it and it’s in testing but he says it’s promising at a high success rate among remission. All we do now is wait.
Diagnosed autoimmune gastritis in hospital, and 3 grueling months later I’m getting the colonoscopy. Excruciating stomach/gut pain. Constipation, 60lbs lost, 8000+ Calprotectin, etc. I’m 20 and had this come on real suddenly, and just get worse. Hopefully, this long it’ll get better, and eventually I’ll be on Humira (have arthritis and it worked for me), healthy and happy. Wish me luck
I'm having Crohn's Disease (Large and small bowls are affected) from Iran.
I just want to appreciate you for making awareness the people of this insane autoimmune disease.
I'm just wishing that IBD would be stopped soon through a magical way.
Thank you brother, all the best on your journey!
Plzz guide to Urdu language I m suffer from this
@@deraghazikhanvlogs6279 AoA. May ALLAH PROTECT YOU BROTHER. WILL YOU PLEASE SHARE YOUR SYMPTOMS.
Tnx. Dealing with this disease for last 30 years. Resection, hospitalized many times, fistula, etc and no biologic has worked. Feels like fighting a losing battle. Down to 135lbs from 160. Ferling desperate. Best wishes
So sorry to hear that! Hoping you can get better treatment asap
My hubby started no gluten diet, no dairy products, no nightshades and his C reactive protein dropped down to a normal level in just 6 weeks. Also high doses of vitamin D and K
Seems like an attack on the best people. The finest people. Sometimes, I wonder if it isn't biowarfare.
@cangel201 that's great. I have tried that and didn't help, but I also took gluten test and was negative. Do you know if your hub is positive on gluten test?
Also Vit D makes me bleed badly for some reason
@mrc2165 I've read there's like 8+ gluten related proteins that can be reacting in our gut, not just gluten. See Cyrex labs, Dr Tom O'Bryan I believe. In IBD, it's essential to remove from diet.
I’ve been on steroids for about 7 years now. They barely work now. Good luck to you and everybody else with life’s random harshness
Woww that's a long time, sorry to hear they are wearing off now though :(
I’m 18 almost 19. I’m 123lbs at 5’11 i used to be 150lbs around December and had a normal life of work, gym, friends, going out and now it hurts to eat anything. I go to the bathroom multiple times a day. i’ve lost 10lbs in 1 day at my most, my weight is always fluctuating. i am so thin and weak to the point when i feel like a shell. the amount of comments i would get from family friends coworkers strangers and looks would kill me to my core and cause the worst depression. i debated about driving my car into a fucking concrete wall at 140 just so i didn’t have to feel like shit every fucking day, i am just getting with a GI specialist have had these symptoms for about 8 weeks and hopefully i can get back to a normal and healthy life. Thank you for making a video like this it gives me hope knowing i can be normal guy again.
Never lose hope man, God is always by your side🙏🏼
I’m 18 and my birthday is in May. The doctors think i have crohns but I’ll have to do a colonoscopy to be sure. Those comments about being skinny are roughy to hear for sure. But don’t worry brother we got this
Please don’t give up. Keep fighting. I’m 22 got diagnosed last year. Got in remission after being on biologic. I’m now in a flare again but I know I’ll get in remission again soon. Life is worth it. The fight is worth it.
Just wanted to drop a thanks for you making these videos. My best friend has Crohn disease since she was 10, and these videos help me learn more about it so I can better support her.
One of the experiences that comes back often as I read about Crohn is confidence. My best friend struggled for a long time as she was almost anoxeric at some point, and there was also the puffy face and everything, but she managed to gain alot of weight against all odds, and looks stunning now; I'm a photographer and she's my go to model. The ability to attain a positive self perception and confidence is really something I admire anyone with Crohn for given the unfair disadvantages is entails due to all the secondary effects.
Anyway, once again, thanks for the videos, they really help inform everyone better. It's little things like not insisting that someone drinks alcohol at a party if they have the disease; I think that can go a long way to support loved ones. Hope your vids can have even more of an impact.
PS: The cinematography in your last video is stunning, with the 4:3 ratio and the vintage lighting and everything. Really an awesome look 😊
Hey thanks so much! So glad to hear these videos have been helpful. Hope your friend is doing okay, it’s very supportive of you wanting to learn more about it.
((Thanks again for noticing the 4:3 style choice 😂 I’m happy someone noticed haha))
I just found this video. Thanks for sharing. I was diagnosed with IBS but im worried that i have IBD. I will have my colonoscopy next week. Please pray for me..
Sorry to hear that! But no need to stress, it’s almost better to be properly diagnosed as then you can get the right treatment
Informative for a med student to understand crohns better in the upcoming pts .
Glad to hear!
I don't have Crohns, but i had a small intestine, large intestine, and partial colon transplant in 2015. So i appreciate you making this video immensely.
Glad to hear you liked it! All the best :)
@benjaymun Thanks.
I hope you are doing well presently; and may God bless you for sending out information/your-feelings on these sorts of matters, there is really not a whole lot of people talking about these issues. I hope you will continue to make videos; & that your channel will grow, & most importantly, that your health and wellbeing carry on.
Thanks again for responding, not many do.
Thank you for sharing your experiences. I was diagnosed with Chrons last week. I am 42 years old. Currently taking 4g Pentasa
Stay strong man! Things will get better eventually, all the best with your journey :)
Hi 👋🏻 New follower here! I was diagnosed w/ Crohn’s yesterday 😢 So happy that I saw this vid!!!
Glad to hear it was helpful! Best of luck with your journey :)
Had Crohn’s for 42 years since the age of 13,5 resections and various ops connected to Crohn’s it’s unfortunately a long road hard and painful with no cure yet.various diets and drugs work for some to suppress the systems but doesn’t cure the root cause which they don’t know.I still can’t find a drug suitable for long term management but we all fight this disease hoping for a better day down the road.for me it nearly cost me my life at 17 but my advise to anyone is never give up talk to someone and seek whatever makes you feel good about yourself.hospitals doctor’s nurses will be part of your life treatment with Crohn’s,most importantly look after yourself listen to your body!.We’re all different so Crohn’s varies in each individual person with symptoms and severity and what works for one might not suit others.you know your needs you know your body and how you feel!.❤
I am 69 and in 1998 I had a Right Hemi Cholectomy (43) and dropped a lot of weight prior to this procedure. But the good news is I f you take care of your GUT it will take care of you! Keep things simple and you will enjoy a long and lovely life 🙏 Love to you all xx
Smashing Video mate! Spreading awearness for this disease and showing people it does not have to define you is just what a lot of people need to hear. I've subscribed and look forward to seeing more!
Thanks so much Thomas! Absolutely man, totally agree. Cheers!
Im 23 atm and have had Crohns since the age of 10... until around 15, I was constantly in and out of hospital until i started taking Inflixamab. All was working fine until last year when I developed antibodies. Sadly, i started the new treatment too late and ended up needing a Ileocecal resection with Primary Anastomosis. Since the operation ( back in Feb this year) ive been super good! Because of how much intestine was removed, I take medication to help control my bowel movement's but apart from that, all's good for now 😌
Hope everything is going well for you!
Hey! Thanks for the comment and for sharing your journey - very interesting to hear, and by the sounds of it you’ve been through a lot. That’s super interesting regarding Infliximab, always forgot that it can become ineffective at a certain point. Glad to hear you’re on the mend. Cheers!
@@benjaymun Yeah unfortunately Infliximab can become ineffective. I was on Infliximab/Remicade to start and was very optimistic since my Dad has been on that for decades, but ended up immediately developing antibodies against it. I switched over to Skyrizi which was approved in the US very recently and it's alright, not working as well as I hoped but I am in the hardest part of my CS degree right now and I'm not controlling my diet as much as I should so hopefully I can eventually get into remission once my environment/diet improves
Also thank you so much for sharing your story, it's been super helpful for me! I wish you the best of health
Edit: I want to add that I was on Prednisone in the downtime it took to get my Infliximab treatment approved and while it worked very well for me, it wasn't considered a viable long-term treatment since I believe it damages your liver. Also I didn't track my appearance too closely but I felt a lot of mood swings and increased agression on it which isn't exactly ideal
You probably have Typhoid Fever and should get tested for it. Crohnsisascam details the cause and cure for Crohn's, IBS and IBD. Read it and take it seriously but don't tell your doctor because they will just lie to you. Happened to me, so I know.
Hi did u have stunted growth bcs of developing crohns so young?
I’ve had great success with the carnivore diet. Look into it! Good luck! ❤
Thank you! I will :)
Thanks for your Vid hopefully you keep in remission. I was diagnosed with Crohns in 1981 when I was 21 not many people knew about it back then. Crohns is in my family and Ive been fighting it all my life with a number of operations and resections. My last repeat op was last year to remove a blockage at the join between the small and large bowel which I had to request the op as Im getting too old to deal with the intestinal blockages which are terrible to go thro. There is a mental side to deal with also with crohns so to anyone on here with crohns you are not alone keep fighting it and we will win in the end.
Thanks for your videos. Alot of us have this disease. And is terrible 😢
It is! I hope there’s a cure some day :)
Thank you so much for sharing these video's! Happy you are feeling better ❤
Hey no problem!! and thanks so much :))
really enjoyed this video. i’m 15 and got diagnosed about 6 months ago, im on 40mg of prednisone and i really felt when you said you lose confidence, it helps with my crohns but i lose all confidence in my body being on them.
Glad to hear this video helped you a little! It’s tough isn’t it, but just keep pushing through and hopefully it won’t be too much longer til you’re off it :)
I used prednisone for 3 months after that they started to give entyvio ….unfortunately I came back to india and I have no medicine now
@@priyaparabathini9989 hi how are u now?
Just wabted to say thank yiu for making this video, I'm trying to create an oc with Crohns disease, and its very important I portray it realistically, and your story really helped, so thank you.
So glad you liked it and it was helpful!
thanks this is the 2nd vid I watched since my recent diagnosis you helped me understand it a lot more.
Glad to hear it :)
Thank you so much for sharing your story. This video is so helpful
So glad to hear thank you!!
Thank you for sharing. My son has been going through this since he was 17.
No problem! Hope it was helpful. Sorry to hear your son is also going through this, but I hope he’s doing good now :)
I'm from Malaysia.
Been diagnosed with Crohn's Disease July 2022.
Been also told that I'd have this till I died😔
Yes it’s a life long disease, but you might not always have symptoms if you’re treated right :)
Thanks for your kind advice although I must say that I find it hard to accept the fact that it's life long disease 😔
Of course…but keep positive things will get better!
Thanks.
May God bless you!
My daughter is your age and was diagnosed with colitis 4 years ago. Getting off all dairy and gluten has been a game changer. Please see Dr Mark Hyman’s articles on autoimmune diets. The IBD docs like to give the immune suppressing drugs but diet is the key to remission. Good luck!
Sorry for your situation iv had crohns for 35 yrs My trouble is I was in denial for about 10 yrs with no meds but been on prednisone for 25 and pentasa I got massively depressed yrs ago and tried to bump myself off life’s beencrap since and I have crohns in the mouth I’m going to try. Fasting but my brain is badly affected and deteriorating for me I definitely know there is a disturbance between the heart chakra and emotions best wishes from NZ
27, having to go to the er every two weeks because I have crohsn and need surgery, yet I can't be off my meds to get it without going back to the er and getting meds I'm not post to have.
Ill never forget a doctor coming in from the ER and saying "are you taking your meds?" and when I tried to explain i cant until I get the surgery he out right belittled me for not taking them and told me I would be back no matter what, like I didn't know that..people think it just effects my needing to go to the bathroom, now I got a weird liver, I'm known to get blockages and god forbid I puke once, ill puke 300 more times..it sucks
So sorry to hear that :((
Thanks for the video. I got diagnosed with UC almost a year ago now. I was put on Budesonide steroids and 4g Pentasa daily and the inflammation is well under control, these days I'm just maintaining remission with 2g Pentasa daily. However, the reason I went to my GP was the FATIGUE (brain fog, concentration and this weird feeling in my head) that has made it impossible to keep up with the job... and I haven't been to the office in well over a year now. I have had fatigue for about ten years but last year it just went overboard and I had everything checked. Elevated ESR, high white blood count and the calprotectin level was in the 1200s. With the exception of one massive flare about a year prior to my diagnosis I still only have mild symptoms and some extraintestinal symptoms. Physically I am doing OK but it is the damn fatigue that is bothering me.
Long intro here but my questions is mainly: Did any of your medication help with the constant fatigue? Hope you are doing well and in remission!
Did they check your ferritin levels? I have UC and the fatigue is insane, but my iron and ferritin levels are always low, sometimes I get some iron infusions and they help a lot with my fatigue.
Thanks for the reply. I check my levels regularly and they are all fine. I am trying megadoses of vitamin B1 (Thiamine) atm. A few studies have shown improvement in fatigue in patients with quiescent IBD. I am only 10 days in and no magic happened yet, unfortunately. I figured it couldn't hurt to give it a try.
Hey thanks for the message and sharing your story!
I think in the beginning the steroids helped with my fatigue but once I was on them too long I felt worse. Over time once I started to get better, I returned back to my old self. Now I am on Stelara injections and feel great :)
What was your histamine quantitative blood levels?
Don't think i got them checked, not that I'm aware of
Been diagnosed with crohns 10yrs and it’s a hell of a ride
It sure is!
I am 31 and live in Melb as well. I have had UC for 4 years but have been on Mezavant ever since and been in remissjon thankfully. But the horrorshow and bloodbath before hopping on medication was absolutely wild.
Thank fuck for our PBS here that allows us affordable access to medication and our Medicare.
I'm 21 years old who is still kind of struggling with Crohn's since age 14. I had to go under 2 bowl intestine surgeries for small bowel and big intestine surgeries. I'm on the infusions INFLECTRA. I'm right now still in pain some days but most days feel better or worst. I'm also trying to improve my diet to but is a struggle since I'm a picky eater. I missed 2 months of school almost failing middle school from going in and out of the emergency room and hospital.
My son had crohns about 5 years ago when he was 12 . Went through 2 surgeries. Notice I said had Crohns. GOD healed my son. He grew 8 inches taller without any medication or treatment. So if you tried everything else, try God. Note: This has nothing to do with religion but with God's Power !
Just got off my second remission. I get full body arthritis along with my bowels. my stomach this time round wasn't as inflamed as the first time but my arthritis was way worse. If you want advice try intermediate fasting, it allows your dna from your bone marrow to heal itself and can only be done once fasting for about 24hours
Sorry to hear about your arthritis! Intermittent fasting is the best isn’t, personally I’ve become so lazy nowadays though but must get into it. 24 hour fasts are great, have you ever tried longer?
@@benjaymun 3 days was by best. it helps but it'll take a long time. I am doing once a week for 24 hours with just some salt and electrolytes. if it helps it helps
That’s awesome 3 days is crazy haha but glad to hear you’ve done it. I need to give it another crack
@@keir7181can you maintain weight on this diet ?
@@jj.c9531 i'm overweight so it's fine for me. I wouldn't do this if I was underweight
100mg is insanely high does of Prednisone… I’m on 32mg a day and it’s been amazing for me.
I agree! It was a very unpleasant experience especially having such a puffy face. Glad you’re finding it okay
@Benjaymun I was on 80mg a day for months till I could taper off. Moon face and lots of side effects. They don't call Pred, Satan's Little Helper, for nothing. The stuff destroys bones and minds...
Honestly that’s so true! Ahah that nickname makes so much sense, no wonder I felt so depressed by the end of it. When I look back at photos of myself I forgot how puffy my face was really geez
I absolutely hate the prednisone it makes me feel literally crazy and depressed,is it the same for you guy's?
My son went from being a serene, soft-spoken gentleman, to a haggard, high-strung crackhead type personality, the first few weeks on Pred, 40 MG day. Thankfully, he returned to normal, after the taper.
Thank you so much mate, very informative video! Have you ever heard that high vitamin D levels may have a good impact too? Would like to hear your thoughts on it!
Hey thank you Emiliano! So glad you enjoyed. I’ve never actually heard that, but I have no doubt that it’s true. Vitamin D is so important for our bodies and I for one am definitely not getting enough of it I’ll look into it, cheers!
@@benjaymun Wow, then I really recommend you to check it out indeed. Here in Brazil I know that there are doctors who treat Crohn only with a well-structured protocol for vitamin D supplementation, including high doses. I know a lot of people that have benefited from it. It was a decisive step in their lives. I hope you find content about it in english!
All the best!
@@emilianokelm1852 Oh wow, that's so fascinating I'll have to seriously look into it then. Thanks so much for telling me aboutit. Cheers!
Hello, sad to see so many young people living with the disease… I have the severe one with fistulas since 2001( was 29) I’m now 50… went through all the different types of medications possible… I’ve been on Inflectra ( remicade perfusions) every 7 weeks since 2011. It gave me a quality of life for a good 10 years… now it’s up and down… catch every viruses possible… since 2022… still I have it pretty good … I see so many young children and teenagers… it brakes my heart! Good luck everyone! Stay positive and try to enjoy the small stuff… yes vitamin D helps a lot… I take zinc magnesium and calcium plus just started after a series of antibiotics, taking probiotics twice a day! Again good luck!
My sister 77 has had Crowns since she was a teenager. She swears by Boswellia.
I used to have IBS for many years (up to 7 bowel movements/day). I tried Boswellia (375 mg in morning) and I felt better in 3 weeks. One year later I am completely cured.
Had it for 30 + years, after I changed to carnivore diet (10 days on beef, no carbs, no artificial oils etc), I stopped with medicine a..col, doctors know nothing about metabolism.
Woah 30 years is crazy. I’ve always wanted to try that diet, this is very convincing!
thank you that comment I was expected. I just got theblood test results and I know I need to be referred to hospital and gp said my blood tests are normal. Can you believe it? Now I need to tell them to refer me but I don`t want any medication. I will heal myself. wit no carbs, no red meat or only lean meat, no nuts just walnut and almond, no artificial oil, coconut, olive oil, tomatoes, greens, mushrooms, fruits and veggies..
Yes, meat, some veggies, some fruit. Great gut.
Processed foods I think Ben, I'm going carnivore for a while, discipline is the key I think (which I have little of lol)
Also do take coconut water and goats milk , avoid fatty food , carbonated drinks , alchol , spicy food and eat on time.
Yes exactly couldn’t agree more!
What does coconut water do?
ggod for inflamation , acidity stomatch and colon too@@megapiux9035
I've had Crohn's for 33 yrs. The treatment options were ghastly. I came up with my own protocol, and all this time later, it comes down to triggers in my diet. I never eat out. Stress, another. Oils of a foreign nature. I can handle butter and olive oil. Holistic approach. Anti inflammation- CBD an excellent thing. First years were dreadful, though. Many ways to deal with inflammation, alien to the body medications, shutting down immune system? Nope. Information is power. Medical protocol is ghastly.I have had no bleeds or critical attacks in two decades.
Yep, 100% agree. Seed oils may be one of the preeminent triggers actually; I avoid them at all costs!!! No gluten ever, there's @8 other gluten- related proteins to react to! Medical sys is a sham.
Low residue diet after emergency surgury,I will not take biologics and I'm fine
How did you find the imuran?
I’ve recently been prescribed this due to the anti inflammatories not being effective but tbh the side effects of it had really freaked me out and my gastroenterologist hasn’t really explained these in-depth.
Hey thanks for the comment! Personally the only issue I had with immuran was redness on my face and got sunburnt very easily. In terms of the side effects, the constant blood tests should indicate if there is a problem - at least that’s what I felt. But be sure to ask your gastroenterologist as many questions before you feel comfortable
Avoid getting Titanium Dioxide from foods and even from shampoo. Take a serious study about its effect on increasing inflammatory by the University sources on the web.
That's very interesting! I'll look into this for sure
It’s in so many products too. Great advice.
I'm living in a foreign country like 3 months straight of diarrhea and I have all these symptoms and I don't have health insurance and a colonoscopy is like $1k and it sounds like you been through the ringer with the amount of appointments and medications and everything I just don't see how this is possible for me to get any better until I get a job here (which will give me insurance) which will be next year when I'm off of the student visa. (You can't have a job on the student visa) I don't know I feel pretty loss and the fatigue is crazy I don't know what to do.
Wow thank you so so much for this video!! I found out I had celiac disease in July so I stopped eating gluten and my symptoms went away but after about 2 months I continued to see mucus and blood in my stool, have severe heartburn every morning, severe nausea, severe joint pain and I’m constantly running to the bathroom and my stomach is always bloated! I actually look pregnant 🤦♀️ I’m going for an endoscopy soon but not sure why it isn’t a colonoscopy 🤔
Sorry to hear you've gone through a tough time, hopefully an endoscopy will give some answers. But yes I agree, not sure why they wouldn't do both hmm
Hello, im also suffering crohn's disease from 5 yrs, but I'm admitting hospital for infection at year once. So can you suggest me what kind of food I have to taken and what should I do in my daily life.
Hey, sorry to hear that! I’d recommend talking to your doctor for diet advice as everyone is different :)
but if you want to be better lose the alcohol????
Of course! But, sometimes you need to enjoy life. All about minimising the harmful stuff
Once in a blue maybe but drink next to never
I HAVE SEVERE IBS SYMPTOMS AND I AM SCARED IT MIGHT LEAD TO THIS
That’s okay if it does! At least you can get get treatment :)
@@benjaymun ACTUALLY THAT'S NOT THE CASE. TREATMENT IS RARE AND EXTREMELY EXPENSIVE IN MY COUNTRY..I AM IN VARSITY AND I AM NOT ENJOYING ONE BIT OF IT. I AM CONSTANTLY BLOATED,GASSY TO A POINT OF GETTING BORBORGIMI WHICH IS SO EMBARRASSING I HAVE BEEN A VICTIM OF CYBERBULLYING NUMEROUS TIMES...I WENT TOTHE DOCTOR ALL HE DID WAS RECOMMEND SOFLAX..WHICH DID ABSOLUTELY NOTHING. IN QUET ENVIROMENTS MY BOWEL MOVEMNTS ARE SUPER LOUS...AND ITS NOT ONLY IBS-C ITS SIBO..I AM GETTING A JOB SO THAT I CAN DO A POPER DIAGNOSIS
try goats milk antiinflamatory and take coconut water for some time , try homeopathy , avid alchol , citrus and cofee and eat food on time.
Same,😔
My appetites been completely gone for the past 4 months, I have to force myself to eat. I have chronic abdominal pain and constipation. The first weeks I slowly started to develop these symptoms it was super painful in the abdomen just eating a quarter of a banana🥺
I wish u a very beautiful life and iron health.
Thank you!!
You had bad doctors in the start. The highest amount of Prednisone I got was 20 ml+ pentasa and Azayathioprin. And this is when I was having fevers and diarrhea 10 times a day. I have had Crohn's for 10 years now! You should have been on Prednisone for 4 months at most and got the Azayathioprin from the start.
Yes I agree! I felt like it was way too high but at the time nothing was working so it seemed to be the only option. That first year is the worst isn’t it!
Im so upset. Iorn leveles very low. Been diagnosed with crohnes also have bone marrow cancer and heart problems. Taking so much meds now about x20 different types. So fed up .i need to heal naturally. Changed diet. One says eat this other says not allowed. Im so confused about the best way forward. Please help. Im at my wits end.
So sorry to hear that! Best thing to do is see a doctor :)
@@benjaymun Hi, tx for reply. I'm seeing several specialists at the moment.
Keep seeing those specialists and find a functional practitioner, to help with diet. Please cut out all white processed foods (breads) and cut out sugar, cancer feeds off sugar more than average cells. Cut out all grain.
No seed oils at all; only olive, coconut, or ghee.
How you feeling now man. I’ve been on remicade for 6 years and I’ve been starting to get a few attacks. Maybe a flare, but I think alcohol has to do with it so I been drinking less. What mental strategy’s do you use to keep your mind occupied? Other than injections do you take any vitamins??
Hey man, I'm doing great these days! No real issues and haven't had a flare in years. I take greens powder, vitamin d and that's about all really. I used to take circumin and fish oil but couldn't be bothered anymore haha.
In terms of mental strategies, exercise is 100% my top priority whether it's weights or cardio. Or finding hobbies that can fill up your time and distract you from pain. I always found when I was at home my symptoms were bad because I used to think about it...but whenever I was out I was always good!
i am facing stomach issue from 1.5 year like loose stool and constipation and stomach pain after eating and some sound from stomach is this crohn nd loss of appetite
It’s possible but best to see a doctor!
It seems like you have a Helicobacter Pylori exactly the same symptom
My husband started experience chrones disease
Wishing him all the best with his recovery!
I have Celiac and now they suspect Crohn’s. Having a capsule endoscopy next week
Hope it goes okay for you!
I hope you’ll be okay and if you wind up having both, just know you will be okay and you will make it !! :) be sure to rest as much as you can and take things step by step and day by day (I have Crohn’s myself)
Very very true!!
Crohns is a beast. Remicade has saved my life x
As im currently in the moon face stage and off cortisone, i understand , i will nor go back on them but pentasa is killing me as it's hardly available in romania
it's horrible isn't it! Hoping you can get better treatment soon :)
Hey glad you are feeling better.
Prednisone is really bad for your immune system… probiotics and 5ASA are lot safer and help manage symptoms well. In the long term you’ll start seeing the side effects of immunosuppressants. I have seen people land in icu after exposed to a regular cough. Are you using any vitamins or immun booster to counteract the side effects??
Prednisone sucks Blllzzz makes you feel like a zombie.
Hey thank you!! Yes I agree, it's the worst. I only take vitamin D really, but also take greens powder everyday which who knows if it does anything but I do feel better off it. Use to take circumin and fish oil but stopped due to the cost
legit never having it again hopefully
Pretty convenient that your symptoms flared up when coming back from your holiday and back to the real world. Goes to show how much stress can add to flare ups
For sure. I was actually so shocked so quickly they returned. I’m sure it was a placebo but it freaked me out haha
Stress causes me to flare faster than just about anything!
Did you felt anxiety/depression for no reason while you had chron's in the beginning.
I think so! I guess it was more just exhausting and having no energy and knowing how hard the journey would be made me very down. But eventually once I got the right treatment I felt pretty good :)
Learn about gut- brain connection and buy book on Vagus nerve exercises. Try one fermented food daily, kimchi, natto, etc. Fix microbiome, everything falls into place with emotions.
Shirley here from the US that got to be a terrible disease to have, spending so much time on the toilet.
It’s not pleasant! But eventually it gets better :)
@@benjaymun That's good.
i am 23 and i think something is going wrong with me i am scared to share it with my family i had a trauma and iam confused,
Good luck my wife has crown.too she is not too good at the moment
Sorry to hear that! I hope she recovers soon :)
I wonder if the alcohol on vacations is what was setting you off.
100%
Whether you had mouth ulcers?
Kindly please reply.. I was suffering a lot
Sometimes! But not often
@@benjaymun any yawning problem? Respiratory problems?
Nope!
@@benjaymun hey wat was ur symptoms when this was started ?
Bro out of these four years, how many months in total you have had remission... And by remission i mean feeling completely normal and no problems with bowel movements
Been pretty much symptom free for 2 years now :)
I ahve been diagnosed with ulcerative colitis, i'm dead in live :/
Sorry to hear that! But it won't always be bad, things get better :)
thankss brother....
No worries!!
Hello. Do you know any disease which have all other symptoms of crohns. My doc said i have symptoms of crohs but he couldn't confirm it . I also have immense hairfall from all over the body
Bro are black stools also a symptom of crohn disease can you please tell bro
Hey man, it’s possible but it could be many other things too!
Can be, also can be a sign of intestinal bleeding. A crohns sufferer
Yes it can be it's probably from stool that has been inside you too long
You are so brave and handsome young man. All my prayers are with you. may Allah keep you healthy and happy always. Ameen. What is you body weight now. I think you said you have 6.1 height.? How old were you when you first get that and what were your symptoms before this actually happened.
Thank you! I’m about 73kg - and started getting symptoms at 17
@@benjaymun Thanks for your response. Will you please share your initial symptoms about 5 to six months leading up to the diagnosis.
Once again thanks a lot and always stay blessed.
A butterfly rash? Did the medication give you lupus?
Yes a rash all across my cheeks, it was horrible. But no lupus :)
Have you tried removing fiber from your diet?
Yes it was helpful when I did it!! These days I don’t have tonnes of fibre anyways out of laziness though haha
I’m so thankful for your video. Please could you tell me about your diet. Do you watch what you eat.
Do you have dairy?
Do you taken any supplements?
Do you take anything natural for it?
Please I bet that u reply. 🙏🏻🙏🏻
Thank you! I have a video on my channel explaining all that, might be best to watch that :)
But yes, no gluten, dairy and limit processed foods
@@benjaymun thanks so much for replying. It is very hard to know what to eat because some people say one thing and another says not to the same food. I will look for the video about foods.. you look really good. I’m so glad for you. It’s encouraging to see people doing well. It makes u think positively.
No problem! Hope it helped you out. Of course, always best to remain positive. The bad times won’t last forever
@@benjaymun there’s times when you can’t see the light on the other side.
Do you always eat good, do you ever drink milk or eat butter?
Thanks so much for engaging it is a gift.
I’m curious on what everyone’s Histamine quantitive Blood levels were
I thought I had it one day it just started and it felt like I was starving all the time, and I lost a lot of weight also but I was so sick I went to docs once and gave up and it went on for 7 years straight and still happens sometimes, it really makes you sick. Did it make you feel hungry? Because I need the right meds.
Iam from india My sister is suffering from chrons diseases please can you tell me the ,how can cure this
Waiting for your rply please give a advice it wil help us
So sorry to hear that! Best thing to do is see a doctor :)
Tq for rply
But they saying only we can control it , can't cure it
Pls can tell me the process or what treatment could be suggestable
@@gayathriammoju8771 wat are her symptoms? M also from india
My God! Try carnivore at least for 3 months. I bet after just 1month you will see huge improvements.
I really want to! I’ve always just put it off, but I defs will give it a go soon
@@benjaymun Good for you. The holidays are really rough on people with bowel issues. I am pretty good by now on just staying with my healthy food and avoiding everything that gums me up, such as anything that is highly processed and anything that is made with flour. The best to you. You deserve it!
For real! It's the hardest time of year, and the temptations to eat junk food is everywhere. Thanks so much for the nice words, have a great new years!
people feel embarrassed talking about it, and it causes loneliness. nobody thins twice to say in public that they suffer from migraines. but this... another story
of course, it's an invisible disease
Gastrointestinal doctors in Canada are the worst especially at Mount Sinani hospital.They get paid by the pharma companies. Relieve stress.calms chrons
Do allergies run in your family? We have several severe allergies.
Not so much! A few things but nothing severe :)
Some allergies are bad enough to bother your digestive system, but not enough to put you in the hospital. Soy is really bad, because they put it in everything. Constant struggle.
I have uclotiis since 10 years. I m too much taking care of my diet . It does work
A good diet is key!
I think that I have already commented once on your profile.
I have celiac disease, EoE and lymphoproliferative colitis.
May I ask you if your body tollerate easily casein or lactose?
What about nightshade vegetable such tomatoes/potatoes/zucchini ?
What about lentils/beans ?
I have been following a pure carnivore diet and recently I did try to re introduce new food items but I am failing big time.
Thanks
I did try meat based but it worsen my constipation and I started losing weight which I did not want to...then I started eliminating gluten 100% and started eating fermented vegetables(cooked), lactose free yogurt, probiotics supplement and apple cycder vinegar and lots of fruits as dinner at 6 pm(meaning it digests by 7 and then after 9pm body heals), only 3 meals a day, breakfast like king(oats, lactose free cheese, cofee), lunch like prince heavy lunch with rice and fermented vegs and sprouted lentils(pressure cooked) and then light dinner dinner lime pauper!(fruits and fruit juices) with this after 1 month my symptoms are going away and now no constipation and I started to gain quality muscles and weight!! plus I do 24 hrs fasting few times a month
@@amitloutube I would remove Oats and even fruits the last one for few months ( eat season and ecological).
Lactose free yoghurts are dangerous since without their natural fats the glucose and the insulin will spike a lot.
Remember also fishes such tuna/sardines and anchiovies (omega 3).
For dinner do intead a nice fresh salad with olive oil, ACV, some homemade Majonaise, with some asparagus and cabbage.
@@il3mendo thank you. I had crazy red rashes one day after having bread 3 times a day I ate by accident and then suddenly I realized maybe it's gluten and I now notice big improvement in gut health without gluten for last one month...I hope meat is good for me because I like fish and turkey filet I will check every week on different foods but gluten I am quite sure bad for my gut health
@@amitloutube gluten in Chron s or Ibd attacks the mucosa and the submucosa.
Fructans, which is the sugar/fiber of wheat get fermented and creates diarreah.
The skin has the same type of t cell which are present in the small and large intestine.
You must avoid bread and even rice/corn.
My fiancé got diagnosed with Cron’s Disease around 3 months ago and the doctor prescribed her with Pentasa only. We went on several holidays and when we came back she had seen a blood clot in her urine. Her doctor said that it doesn’t have to do with the disease and recommended another doctor who put her on antibiotics and did an ultrasound but found nothing abnormal. So he said that since the blood isn’t recurring it could’ve been an isolated issue but she’s fine. Do you think it might be related? Should we see another doctor? Could it be from the Pentasa? And for the Crohn’s disease is Pentasa enough or are steroids or stelara a must?
Btw she’s 28 and had the same symptoms of nausea, fatigue, headaches, and going to the toilet often. After she found out she has Cron’s and started taking medicine, these symptoms lessened but they still come and go. And funny enough during our holidays she was fine.
It’s hard not to have any symptoms… even on really good medication… fistulas can be a problem…maybe ask for a second opinion… good luck !
I just want to take a moment to tell you that Jesus sees you in your pain and hurting that he knows ypu have an empty void that no Matter what you try to fill it up with it won't get filled and healed without him. He loves you unconditionally. God himself sent he's son to die for you to break that separation of God and humanity that's how much ypu are worth for him. He loves ypu and is waiting for you. Feel free to just talk to him and ask for signs and you'll be blown away when ypu realize he's always been there.
Amen
I’ve had Crohn’s disease four to five years too. The typhoid shot injured me and caused Crohn’s. no diets, infusions, or supplements have helped. I see Australia has FMT but I don’t even know about that. My friend wants me to try colloidal silver or chelation but I’m not sure yet. I thought my Crohn’s was bc of using tumeric and trying the vegan diet but sadly the military didn’t catch it after they vaccinated me and I suffered for years and got done to 85ibs. I wish we could find the cure to cell inflammation that causes cancers and autoimmune diseases. God bless all
Did you ever have just mucus when going to the toilet ?
Luckily I never really had much mucus :)
OK thanks
Gettin flipped off… I had to click on. Lol 😆
Hahahah how could you not 😂
Do you feel mesalamine helped? They are now saying it is not helpful fo Crohns, but good for UC….thanks!
Hey! No definitely not haha, don't think it did anything. But often its the first medication you have to take to almost tick the box so you can move onto stronger drugs
@@benjaymun Started it a week or so ago. Felt better and symptoms almost vanished over the week. Now this week, a couple days of hell. Maybe need to give it more time. They say can take a couple months to really kick in. We'll see. Thanks much Ben.
How is it working so far I just stared it yesterday
@@kbaby24johnson It doesn't get rid of everything, but certainly has helped. If I go off of it, things seem to worsen...
Mesalasin doesn't work for Crohn's but helps with arthritis caused by it
only 4 years? try 28 years
💞💞💞💞
🙏🏼🙏🏼
With Crohn’s disease have you ever experienced a burning sensation and an inflammation around the anus (the skin surrounding it)?
Ohh 100% it’s the worst haha especially during a flare. It might take some time to recover, but from memory maybe there’s a cream you could use?
@@benjaymun well that’s what I’m thinking I have. Of course finding a competent Gastro who is willing to test has been difficult.
Hopefully you can find a good one soon!
Don't go near any refined oils in any food. Restaurants are out, unless expensive and can assure you no vegetable oil, vanilla, corn or soy oil. Helps tremendously.
Bro your handsome
thank u!
You're welcome!
Fell good meto sufer with chrhons
😢😢😢😢😢😢😢
May Allah give health and Imaan to everyone Amen
🙏🏼🙏🏼
Inshallah
Try homeopathy might help
I’ll look into it thanks!
Yes. Used instead of medication, 30+ years.
Gluten free!! , but yet you still drink alcohol 😅
I know it sounds stupid, but it’s all about minimising and still enjoying life 😂
Not all alcohol contains gluten.
So why are you flipping us off? We’re not the cause of your disease. 😂
Hahah of course! Crohn’s disease can go get fked 😂
@@benjaymun
100% 🤣