Crohn's Disease; The Basics
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- Опубликовано: 2 янв 2017
- First video in a series by GUT INSTINCT
#1 What the hell is Crohn's Disease?
www.gutinstinct.blog
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For more info on Crohn's Disease, visit www.crohnsandcolitis.org.uk 
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I just want you to know that I'm currently a medical student in London and I linked this video in a presentation I gave regarding the current and future treatments of Crohn's disease; me and my colleagues are all in agreement as well... break the poo taboo! It's an incredibly difficult disease to live with, but I think you're doing an amazing job by raising awareness about the condition in such an accessible way, please keep doing what you're doing, you're an inspiration to many no doubt!
Hi Danielle!
That's amazing to hear (and so humbling as well) thank you. So happy that you found a use for me blabbing away and really, really appreciate all your kind words! It definitely is something that should be spoken about more and it makes me so happy to know that you recognise my goal of trying to make it less of a taboo.
Thanks again for your kind words, sending you so much love x
Danielle Hilton ☺)
Danielle Hilton hi☺
This comment was a year ago and yet it still fills me with the same overwhelmed joy and positivity it did when you first wrote it. Thank you so much x
If you are a medical student, can you answer me something? Why doesn't doctors prescribe loperamid to help with the diarrhea?
I was diagnosed when I was 10. I just turned 21 and after 3 surgeries, a colostomy bag for a while, and so many meds I'm finally in remission 😊 I still take medication and I suffer from side effects from the surgeries, but I'm doing pretty well. For anyone out there who is going through a flare up or a new diagnosis, you are strong and I am thinking of you 💙
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My favorite part: "chill out on the IBS!" Yes, I feel this so deeply! Thank you!
i'm 23. i got diagnosed with crohn's in 2012 and have been going through hell since then. in may 2016 i started going through the worst flare up of my entire life. i ended up hospitalized in september 2016 and apparently my colon is SUPER inflamed. i can't eat or drink, i'm bleeding a lot, puking, i'm rushing to the bathroom every hour, i get insane cramping, i am losing sleep, etc. i'm on remicade now and it isn't helping, i'm also on steroids which definitely aren't helping.
i've done an elimination diet and found out that i can't really have dairy, gluten, most meats, most veggies, most fruits, nuts or seeds. i'm thinking of switching to a vegan diet because i've heard amazing results for crohnies, but everything is different for each person.
i've lost so many friends because of this disease. people get tired of you bailing on plans because you have no energy or because you're shitting every 2 seconds. i'm so lonely. people don't understand :(
Hello darling,
It sounds like you're having a horrible time with it at the moment which makes me sad! I completely know where you're coming from and it can be a very isolating, lonely and debilitating place.
In terms of diet, I know a lot of people who do Vegan or Low FODMAP and say that it helps, but like you said, everyone is so different so that makes it even harder! In day to day life I avoid gluten, dairy and red meats (where possible, of course) and am allowing myself fruits and vegetables again.
I am also always so tired and feel like a walking zombie half the time. It's sad that people can't support you, I think a lot of that is down to it being an 'invisible illness' which sucks.
Try and stay positive; you are stronger than you know.
If ever you need a place to rant or moan or talk about Crohn's, you can always contact me.
Sending you lots of love and healthy wishes x
Some may say this is nothing to worry about, but family's and friend's unbelief that anything is wrong with us can be beyond flabbergasting.
Then, when your primary care doctor thinks you're crazy makes it worse.
It's like we have to prove we're sick instead of a professional proving we are and what can be done to save your sanity before you lose it all.
Of course we don't have broken limbs, nor bruises that prove something is seriously making us seriously sick.
Family and friends won't get it until they get it.
Read that one again.
Family and friends won't "Get it" until they get it.
But, I would not wish this on anyone.
I am not capable of that kind of hate.
We run fevers but not 24/7 so surely we must feel so much better than when the fever was spiking.
The " You're just dehydrated. Drink some water.", advice make me want to throat punch them sometimes. Not really, but...
Oh, and the; " Why don't you have a job? Or, " Why don't you work?"
I'm like, " I do! I have to clean my toilet and fumigate my house several times a day. Does that count?"
Sometimes, we can eat a bucket full of one food today and none of it for months.
Fiber is not my friend.
Carbs are like steak and chef salad after going days on nada except clear liquids and Jello. :/
Best wishes, love and understanding.
Yes, Crohn's Sux
shelbatr0n Your story is so similar to mine. But in January 2016 I had an ileostomy, at the time I thought it was the worst thing to happen to me. I had almost half my small intestine removed. I had it reversed January this year, the year I had it I was depressed and hated it. but now I've almost recovered from the reversal. I feel 100 times better, if none of your treatments are working this may be an option. surgery is a last option but but for a lot of people it helps a lot. look in to it
Ryan Robinson i actually was just discharged from the hospital last week after 3 weeks being in there. i've asked for the surgery to get the bag but because of where my crohns is located they want to try me on any and all medications that could work first.
shelbatr0n just remember the doctors only want what's best for you. if they don't think an operation is right for you then it's most likely not. Don't get into the mind set that they don't want to help cos they do. join a support group if you haven't already. I found talking to people going though the same thing helped. also try pure aloe vera juice, tastes what I imagine bleach would taste like but helped fore. oneday you'll find the right treatment
Hey great to hear from someone else with crohn's, I was diagnosed at age 8, I'm 35 now, currently working with my doctor to find a new treatment that will work. Frustration is so real with trying to find a way to eat and not just want to curl up in a ball and die after. Hope you find a good treatment.
Hi Caleb!
Gosh, that is a few too many years to be dealing with Crohn's! I can't even imagine being at that stage yet, as I haven't even hit the 2 year mark yet and it's already daunting, so really admire you. Totally appreciate how difficult it is to find the medication/food balance, I think it's one of Crohn's greatest mysteries, and every single person or Doctor seems to have a different opinion or view.
Hope you manage to find something that works for you, stay in touch x
Caleb did u ever got blood or any smelly discharge from your belly button ?
Hiba Arshad I have. come to find out I had a umbilical hernia which had a fissure to my intestines.
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a fellow crohnie! I've had it since I was 15. I'm now 33. I've been on practically every medication for Crohn's so far. Prednisone is *the worst*!! I still haven't lost the "buffalo hump" or "moon face" and I've not taken it for over 10 years! I was misdignosed with IBS too and then I got a rectal fissure and they knew it was Crohn's. I also sprung a leak and was hospitalized and nearly died from sepsis. after 3 months with a drain and antibiotics galore it finally healed. I've had more doctors and nurses looking at and inserting things into my bum than I'd like to admit. I wish you well. new subscriber!
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I’m 13 and I was diagnosed with Crohn’s disease 13 months ago. I found this video reassuring and made me feel like I’m not the only one. I’ve had 2 flare ups and had an NG tube inserted twice, for 8 weeks both times. The food I find that makes me ill is tomatoes. I also have 8 tablets too a day. I take immuno-suppressants too, called Azathiaprine. And yeah I have arthritis too and struggle with joint pains. Sounds like we’re quite similar. We both had a colonoscopy and I had an endoscopy. Anyway, thank you for uploading this video. It’s really helped me 😊
I was diagnosed at 16 and was so embarrassed, I really didn't start talking about it until 5 years ago (when I got so sick, I had to get an ostomy). I hit a all time low of depression and isolation. Talking about it, educating my friends & family, and spreading awareness helped me so much! I'm glad you jumped right into it and are helping others do the same!
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I'm 13 years old and I was diagnosed in September 2016 with Crohn's disease too. I've had an NG tube inserted twice for 32 weeks and it's not very nice. I feel like no one else understands how I feel, and then I found your channel and I feel like I'm not the only one now.
You have made me feel a lot happier now knowing there's someone in the same position as me and knows what it feels like. You're such an inspiration to me 😊 xx
Thank you, that is so lovely to hear and it means a lot :)
The NG tube definitely sounds unpleasant, I'm sorry you're having to go through that.
Stay strong, sending you love x
Millie Gilexo hii☺
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Omg it’s nice to know you have went threw the same thing as me I have ibd I got diagnosed with it in 2018 and I’m now 13 I’ve had the NG tube twice now and it hasn’t worked I’ve now on a new medication so hopefully this works and I hope you find something that works for you to x
I'm 14 now and have had Crohn's for 4 years so i would totally agree that its so nice to see there are other humans with Crohn's
Hi I've suffered with this for 26 years now. I thank you so much for telling people what it's like. I got so much stick because I couldn't go to work & felt poorly more often than not. I'm 41 now & watching someone like you has made me feel so much better cause this is what it's like. A lot of people think you are putting it on. You are such a lovely person for telling others what it is like. I thank you again. All the best. Xx
Just found your channel now and watched a bunch of your videos. I was diagnosed about 3 years ago and everything you talk about is SO TRUE. Thank you for making these videos, it makes me feel less alone in my battle with Crohn’s!!!
I was diagnosed at 15, I was lucky I was diagnosed because most people just thought I was being overdramatic or a typical teenager I'm 17 now and still struggling but it helps to know I'm not on my own ❤
I am so glad to see these informative videos. I was diagnosed at 9 and have lived with Crohns now for 21 years. It is important not only to let people know that there are all kinds of ways to learn about Crohns and to know many people have it. Like you said not so glamorous topic of health but getting resources out there are so helpful to those newly diagnosed.
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Your video really made me smile today (in the best possible way!) I am awaiting biopsy results but looks like I have Crohns - so I have been searching for information to get my head round it all. I think your attitude is brilliant 😊 thanks for making this video!
Thank you so much for this video! I was diagnosed with Crohn's in 2013, but had been suffering with it (unknowingly) for more than a year prior to that. I have had over a dozen surgeries in the past 4 years, and have had part of my colon removed. I lived with an ileostomy for 7 months (pooping in a bag is SOOO much fun). My Crohn's has now caused me to be diabetic as well, so in addition to my Crohn's meds (including Azathioprine, so thanks for that video as well), I also get to inject a hefty regimen of insulin, and take Metformin (which also makes you quite nauseous). Crohn's and diabetes are not friends, in fact they hate each other. Everything you eat (and I mean EVERYTHING) has a negative impact on one, or the other. Diabetes loves salads, and as you know, Crohn's HATES salads. Fried chicken used to be my miracle, feel better, dinner for when I was having a flare up, but that makes my diabetes very sad. The reason for my comment, is that one of my biggest struggles has been getting the people closest to me to understand how Crohn's makes me feel every day. This video has helped me so much with that. So once again thanks!! :-)
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i'm 14 years old and i was diagnosed 2 1/2 years ago and that's what was happening to me not the joints but everything else that u had happen. everything u say i can relate to. it's really nice to know that someone goes through stuff i go through bc i never here about people who have crohns❤️
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From the name to the purpose, this channel seems AMAZING!!! I got diagnosed when i was about 7, and i'm 16 now. You're the first person to have it in the Ileum as well.
Hi Joseph!
Thank you so much, I really appreciate it! Can't believe you got diagnosed at such a young age, that must have made growing up even more challenging - so I have so much respect for you going through all of that by the time you're 16! Hope you're learning to manage with it okay, sending you love x
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i’m so happy i found your channel! i was diagnosed 3 years ago with crohns, been in remission for the past 2 years thank god!!! 🙏🏼
Are you still in remission??
@@Knighttus I was until just recently when I had a baby!
@@caitlin3739 i hope you are doing good, btw what medecine were you on during 2 years?
I am nearly 23 and got diagnosed at 21. Keep posting, you help so much 💕 You explain chron's so well and what it's like in the daily life. I can relate to so much, people and family can't understand at times that I cannot work :/ My bones get so sore to the point I was getting ready for work brushing my hair and I just broke down on the bathroom floor from being so tired and sore.
I am 17 and have just been diagnosed with Crohn's, your vidoes are so helpful! And its so important to talk about it! Your so strong and amazing!!
omg... you explained it so well. had this for 20 years nearly. you say it how it is. look forward to more blogs. iv seen loads of blogs of ppl trying to explain it but your style is just so refreshing. keep them coming, no pressure lol
I love the complete honesty and condfidence you have whilst talking about Crohn’s. I wish there were more youtubers or people with Crohns or IBD’s that talked about it like you do
I have been suffering for years with Crohn's disease. Thank you so much for making these videos.
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I have just been diagnosed with Crohn's disease at 19. This has been going on for a while but I was just too embarrassed to say anything but when I did I had so many tests done and month's later they tell me I have Crohn's disease. I still feel like I'm in the dark because I'm still struggling to get to know what it is exactly. I love watching your videos they are really helping me to know what is going on and wrap my head around this. I'm glad I'm not in this alone. Thank you!
Thank you for helping be a voice! I went for a long time being mis-diagnosed and then finally was told in 2010 that I had Corhn's. There are still so many days when just staying home, and not feeling like I have to "plan out" a trip to do just the simplest things. You are a dear and made me laugh! Thank you!
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I’ve been bleeding non stop for 2 weeks and am being sent for a colonoscopy to check for this 🙃 (or ulcerative colitis). So now I’m watching every related video known to man so I can feel better prepared for this new journey
@@laurx39 got my answer over Christmas, yes it’s Ulcerative colitis! Now just working closely with my health team to figure out the best treatment plan ☺️
@@SmallFry16100 ah, I’m sorry it’s Colitis but thankful you’ve got some answers! I’ve been having symptoms of Crohns for 7 years and not getting any closer to a diagnosis. Hopefully it’s soon!
I have just been diagnosed with Crohn's and I have been thinking about how people just don't talk about it... It seems to be such a taboo! It is refreshing to hear someone who has the same mindset as I do towards the 'situation'. So thank you, for talking honestly, it really does help!
hello! my name is Lauren and I got diagnosed with crohns 4 years ago when I was 21 and I found out the same way you did! vomiting and diarrhea! Thank you for making these videos! I like speaking people your videos so they understand what I go through daily! everyone always tells me I'm young and shouldn't be so tired but they don't understand what I go through and it's very hard to explain too everyone all the time!! and finding a job where you can go to the bathroom when ever you want! Thank you for making these videos!!!
I just got diagnosed with Crohn's two weeks ago and I've been looking EVERYWHERE for a channel where someone talks about their experience with this!! I hope you can make more videos!! what's been most daunting for me is trying to figure out what my triggers are...it seems like such an impossible process and I don't even know where to begin with food some days.
Hey L! Pretty inspirational... I wish you all the best and hope are able to manage it better in the future! x
Thank you, Jonny, you babe! So nice to hear from you, especially such positive words.
Sending you love and maybe bump into you soon x
So happy I found this channel! Crohns really is such a lonely disease, I feel like no one really gets it when I tell them I have it so I've just stopped telling people. I've had crohns basically ever since middle school (I'm 21 now), had 2 small bowel resections from really bad flare ups, once in 7th grade and once in my senior year of high school. Have been in remission since the last surgery (2014) but lately I've been having a flare up again, ho hum. I miss sleeping through the night 🙃 hope things are going okay with you
Im 24 and ive dealt with crohns colitis for the past 2 years. Life with this disease is hard, especially when youre flaring. During that flare, having mouth ulcers suck, the bruises and sensitive areas on my legs suck. Being nauseated, hungry, and constant trips to the bathroom is the absolute worst. Its ashame hearing other peoples stories, but comforting to know im not alone. Thank you for sharing. Spreading the love to all of those in my shoes.
When you finally find someone to relate to you and seems like they have an introverted soul that matches yours !!! Chrones crew 💁🏾❤️❤️‼️‼️ thanks girl
I'm so sorry to hear this!!! I got diagnosed when I was 14 and now 18 I've nearly got it under control! I went through pretty much exactly the same treatments as you but now I'm doing immunosuppressive therapy and it seems to be working so well ( although it has so many complications with it) so I really hope it does the same for you. Please don't be to down, you look absolutely beautiful now so don't stress to much about how the steroids are making you look. I wish you endless amounts of luck and really hope it starts going right soon
How are you doing now?
GURL! where have you been my whole life?! i got diagnosed about two years ago and this damn disease is so life draining and isolating! Im like, a little bit sick all the time, but havent been hospitalized since my first real episode of madness lol. My doctors wont take me seriously and on the internet all you find is either suuuuper sick people talking about it or cringy info videos from 10 years ago. I just wanna send you loooooooots of love and support and THANK YOU for speaking out to the world for us all!
Hello darling,
I found that too - there was nothing relatable on the internet at all, and I was just fed up of it so decided to take matters into my own hands, haha!
So sad and sorry to hear that you are feeling drained and isolated, I can totally relate to both things!
Are you on any medication at the moment? How are you feeling?
Please definitely stay in touch, sending you lots of love xx
GUT INSTINCT and im so glad you did! ♡ ive had a flare up since xmas and besides my regular medication of Asacol and Egazil ive been on steroids and antibiotics but nothing helps this time around 🙄 i was treated with biologics before aaaaand guess ill be on it again. These long periods of not being able to really eat or keep food and try medications and just feel like crap while working and dealing with daily life is what im most wondering about, like how other people deal with that.. cause i feel like im on the brink of death 😂😂 I actually quit my full time work last year and only work like 70% now to be more stress free. Also changed my diet ALOT 🙄. What do you do when you have a flare up? Do you have contact with a specialist or..? Thank you for the reply sweetie ✨
Ur videos provide me with emotional support. It really helps with the depression that comes along with chrohns. Keep it up!!
You're amazing! Your video is making me feel so much better as I struggle with a flare up tonight. Thank you for making and sharing your videos - I totally relate.
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“Chill out on the IBS” omg yes!!! I got diagnosed when I was 23 as well. At first it would thought to be ulcerative proctitis, but after a year, I had a hemmorhoid, fissure, a fistula, and infected abscess that was leaking puss all the time, two surgeries, two colonoscopies and finally diagnosed with Crohn’s disease.
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these videos make all of this make sense I'm 17 and I was diagnosed 3 months ago and I really enjoy your videos and tomorow I start infusions
You are so funny i love your personality i got diagnosed about 3-4 years ago when i was about 10 years old im 13 as of now and its been very difficult for me because i also have social anxiety and unspecified trauma with stress disorder so yeah i have panic attacks often (If you have never had one) it genuinely sucks and i know that people on the outside can not see what i am feeling they can only see me crying shaking and basically breaking down my panic attacks are mostly due to my Crohn’s disease like if i have a flare up i dont want to go anywhere and if i think about going to my therapists then it gets me anxious and a panic attack ensues so that sucks lol i really love you channel btw its so fun watching you
I've crohns in my small intestines and was only diagnosed in January but had colitis for 4 years now🙄 it's great to see people speaking out about it here xx
U probably had crohns the whole time, have you had a mri when they diagnosed you with a colitis? Im saying this because they cant see your small intestine during a colonoscopy
Your videos have made me very thankful that even though I’m not taking care of my body appropriately that I am still (for the most part) healthy and only have pain sometimes and am on 1 medication, thankyou
I do not have Crohn's disease however my boyfriend does. We have been together for 2 years, he was diagnosed last year, I must say the diagnosis was great because it meant we didn't have to be as scared about what was going on. However, it was also rather frustrating because there isn't a lot of help or information available about Crohns. And much like you, we can't figure out what makes him flare up. I try to help him as much as possible, however it's very difficult to help him, when even he doesn't know what's going on. So I have found your videos very helpful. Thankyou very much!!!
I love this.
I'm 53, got diagnosed 2 years ago but I think I've had Crohn's for 7 or 8 years. It is empowering to have such an eloquent and engaging, 'reliable witness', confirming that my experience is shared and genuine. I don't mean that I feel doubt - but I experience the doubt or (unintentional) ignorance of others very regularly. It wears you down. Crohn's and people's reactions to/assumptions about it combine to play with the mind as much as the body.
Even on the days when I feel relatively well, I don't know for how long or whether my body will suddenly betray me in an array of ways , some of which are not just embarrassing but socially catastrophic; Never mind the accompanying burden I might place on others.
And I'm on my 3rd consultant because I won't be spoken to like a recalcitrant child.
It's a cruel, complex, systemic, multi-symptomatic, poorly understood and incurable disease, entailing a daily intake of drugs that would impress Scarface.
Your 2nd film is very funny too - many thanks.
Mel x
I have Crohn's disease and I can relate to a lot of your story ! I love the way you talk about it !!
Hey! Wow there seems to be so many videos and channels popping up now about crohn's! Love it! Fellow sufferer, hoping to make a video myself soon :) looking forward to watching more of your videos xxxx
Ps: OMG I hate people that confused between IBS and IBD. Also I'm on immunosuppressants and don't worry they're not so bad (for me anyway) :) xx
Thank you, Sally!
It's so good to see that there is more awareness about Crohn's these days - definitely nothing but a good thing :)
I've also seen your comment about immunosuppressants, what are you on? I've been on Azathioprine for over 6 weeks now and have to say that so far, they've been pretty good (minus a few side effects).
Sending you love, x
Yep I'm on azathioprine also. It's been completely fine for me, no side effects. I've been on it almost 7 years (I'm 28 years old). My doctor is talking about changing my treatments soon though potentially as he thinks my body is becoming resistant to the medications. There is a crohns and colitis walk coming up all over the UK next few months - I'm going to the Bristol one if you think about going!!!! x
Sally Boebally hi☺
Why dont y'all cure yourselves???Proper DIET. ORGANIC NON GMO. Most of the stuff is killing us sold in the guise of food. Endocannabonoid system research it.RICK SIMPSON OIL Cannabis oil cures cancers and auto immune Dis-ease. My Wife cured her chrones when they almost killed her with chemotherapy and other bullshit the doctors dont know anything they mearly push pills for pills it is a vicious cycle and they should be jailed for killing us. RESEARCH SPIRULINA. CHORELLA .
It's definitely helpful. I'm 27 and have been battling with crohns for 10 years. Through 3 pregnancies. Definitely not fun. I will say before really knowing what was wrong with me I thought eating healthy would help and I ate salads everyday. And one day i got terrifyingly sick. It was the raw veggies. It caused a huge mass in my stomach in which my crohns was at its worse. I literally thought I was going to die. I've had so many terrifying experiences throughout this adventure and I will say it's not for the weak. You're beautiful and have a wonderful outlook on the struggle youve been handed. Wish there was a magic cure.
Hi, I was diagnosed with Crohn's three weeks ago, at the age of 40, so today I decided to try and start getting me head around it all. Your video was great - really informative, it made me laugh and it explained things in a way that a leaflet doesn't (from actual experience). Thank you x
you are fantastic I've only found out 8weeks ago your youtube film help me so much you say wot were to scared to say you have brought I new light to me on my Chrons. thank you. xx
I just got diagnosed with Crohn's disease today after my colonoscopy and your video has made me feel a little better about it.
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Ive had Crohns for two years now, since 2015, I was on humira shots, but caused hair loss, so im now on entyvio infusions(working much better). This is a great video, to tell and show people what we go through.
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Hey chick. Paramedic in Texas here and I was diagnosed last Thursday with Crohn's. Like you, I didn't know anything about it so I'm researching everything I can which brought me to you lol. Hope you're doing ok!
Like the worst longest stomach flu ,I truly empathize with you people ,you are warriors
Thank you for putting this video up iv had the same problems for 6years been bk and farward to the docs but blood tests and the dreded finger just to be told the same thing its a tear nothing they can do to help so 6 years later hell of a lot worse bk to the docs today so hopefully ill get somewhere thank you for putting the video up because i have had the same problems just hope my doctor will help with time
Yess, keep doing this videos 😭😭 I'm leaving the hospital tomorrow and it would be fun if you did blogs about what you eat because I honestly have no idea what to eat.
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You look so good for all the medication your taking! My son, Adam just got Diagnosed last thurs.. so he has got to go to go to his Primary dr. and from there he will go to a GI dr. I am really taken back by this and I hope he can go through this same thing. He had stomach issues way before but it wasn't as bad.
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Thank you so much, Valerie 🧡 Sending Adam lots of love and strength on his journey with IBD x
I love you!!! Thank you for making me not feel so alone. We are in this together.
Thanks for spreading awareness! So many people afraid to talk about it, especially young people.
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I’m 21 and I just got diagnosed a week ago! Mine is in the end of small intestine. I have had stomach issues since middle school but I was super sick in January! I go Thursday to get on medication and I’m going to go for humira!
I love this channel, all though I dont have Chrons disease, i have something pretty similar which is Bile Acid Malapsorption which has the same symptoms other than the blood, although that is occasional. The amount of times that I had to leave school/work and events is embarassing and having friends that dont understand. This was really imformative so thank you ☺
i have that AND crohns 😔( my bile acid malapsorbtion was actually caused by me having several surgeries on my bowel for crohns, it is HELL so i knw wat ur goin thru
Thank you, thank you, thank you for making this video!!!! August 2017 I was diagnosed with chronic mild unspecified colitis ➡️ meaning it carries symptoms of both Crohn’s and Ulcerative Colitis, as well as non bleeding gastritis, and GERD with esophagitis. Four in one, isn’t that better than a hole in one? Hahaha not! Doctor immediately put me on 9 mg Entocort EC. Even though the doctor said the unsp-col was “mild”, the dang pain and all other symptoms have been nothing but!
This shit sucks!!! But I’m staying as positive as I can and am fighting to find a “diet” that works for me.
When I was younger, I don’t believe that I had ever, ever thought that I’d be dealing with this or any other disease, and I’m still young! Your videos explain everything I’ve been dealing with, you’re totally relatable with so many other sufferers. 😆
I pray that you continue to get well and remember that you’re not alone 😌
Thank you, my father died from cancer related to Crohn's. I have most symptoms so off to the doctor I go this time with my father's death certificate.
Hi
I was diagnosed with Crohn's disease on my 15th birthday. I started having symptoms in grade 3 which we mistook for lactose intolerance. I am now on humira and In remission. April they found other organs acting out and Iv been in and out of hospitals. I have been feeling so down so I started binge watching RUclipsrs with IBD
You are so awesome. Thank you for doing these videos
I'm 12 i got diagnosed with crohns when I was 8 I was sick on Christmas i can't have sugar grains soy wheat gluten lactos etc. I had to sell my Christmas candy when I found out, I lost a lot of weight and went through all of this stuff but I'm much healthier now and even though it effects my life I can still do most things I love and even go to summer camp. I might make a video also but thx for talking about it :)
'Chatting shit about shit!' Haha nice one! I've had it since I was 8, it's a battle for sure! I've had the moon face on prednisone and really missed me put mentally. I've not been Same since to be honest but getting there again. You honestly look nice, but I know how you're feeling. Stay strong 🙂
Thank you, Sam - that means a lot!
Prednisolone is awful, this is my 3rd course of them in a Year and I am so tired of the side effects; I suffer with swelling and insomnia the worst and it makes me very oversensitive too (or that could just be the severe lack of sleep!) Am just coming off them now and moving onto Azathioprine which should be interesting.
Sending you love, and if ever you need someone to rant or talk to about 'shit', my contact details are on my blog etc! x
GUT INSTINCT I'm on Azathioprine
How are you finding it? I'm just coming up to finishing my second week on it now. Had terrible nausea and heart palpitations the first week, but they seem to have both calmed down now...
GUT INSTINCT I'm fine , I've been on it for quite a while now. I also have infliximab infusions.
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How do you work with chrons disease and if you have a flare how would you tell your manager?
Thanks for explaining this so well. I was curious what camera You use for Vlogging? Hope you have a good day.
Thanks for sharing this! I’m 23 and just diagnosed with Crohn’s. Not a good time
Hi! Thank you so much for sharing. I've been having digestive problems since Nov. 2016 and was diagnosed with IBS in Jan. 2017. I've been put on a medicine that's has helped somewhat but went back to GI today because i've recently had bloody diarrhea. Therefore i've been scheduled for another scope because of the chance of having Crohn's/ Ulcerative Colitis... I'm 15 years old and my daily life is just "shitty" Lol. This is just so hard to deal with, but thankfully i do have a wonderful Dr. Thank you so much for sharing your story!
hey I loved the video! well done you for getting crohns noticed
I'm 22 and was just diagnosed with Crohn's a week ago. Like you my doctor told me that I might just have IBS. It took me going to the ER because I couldn't hold down food and became dehydrated for them to do a scan on me and see that my intestines were inflamed. That led to the colonoscopy a few weeks later and here I am. I have to wait to see the doctor again to start treatment and right now I'm definitely suffering. If you have any tips on foods that work well for you I'd love to hear about it.
I have all the symptoms other than bloody stool. Ive been suffering for 3 years and counting. Ive been to many hospitals. Ive went to so many doctors. I finally went to a GI specialist and they wont do anything for me at all. They tried to give me an antidepressant for my pain? No tests nothing. I just suffer and suffer and at the hospitals have had tests and scans (not by the specialist) and there were no signs of anything except inflammation in my small intestine. Thats the only answer ive gotten. Im in pain and something is obviously wrong but they say im perfectly healthy.. its nice to see people with the same symptoms. Its been a lonely road to diagnosis of whatever this may be..
Brie Pittz same! Except I only have had bloodwork and they says it’s ibs. I have anxiety and i don’t have diarrhea but i do have constipation. I feel so inflamed thought and it’s painful but the GI doctor doesn’t want to do anything and I’m scared it can be Crohn’s disease but from what I’ve heard it’s most likely to have diarrhea.
I was diagnosed a few weeks ago . I hate the hot flushes and nausea. I even steroid tablets , and calcium tablets
I have crohns 2, I was diagnosed in my mid twenties, it derailed my college career.
Its messing up my highschool grades I was in higher classes for people that are smart and my freshman and sophomore year i had a good gpa and I just got what they think is crohn's my junior year and my grades DROPPED... smh messing it up for me if I wanna go to good college in the future
Thank you so so much for sharing! First of all, you're absolutely beautiful. Secondly... girl... you GET me! I have crohn's disease also in the same area of my GI and had to do the liquid diet for awhile also and am now on an anti-inflammatory injection. I think this channel is an amazing thing that's going to help a lot of crohnsies. I'm trying to bring more awareness about Crohns disease on my channel also, so I really appreciate this!
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How are you doing now?
Great video, nice job! Is it possible to have Chron's disease without losing weight? I constantly have growling and gurgling intestines and stomach, along with feeling fatigued all the time and constantly belching no matter what I eat it seems. I get a lot of lower abdominal pain also, though I've never actually vomited. I do have GAD too and my Dr seems to blame this for everything. But because I eat a lot, being constantly hungry, and don't get out at all like I did before I developed GAD I've actually gone from being a very skinny 12 stone to almost 15 stone in the space of 2 years. Any thoughts would be really appreciated!
The thing that i find difficult is when someone might ask you to do something, i say yes, then let them down because of this bloody unpredictable disease
Hi I was diagnosed 10 ago they caught it early I deal with it and try not to dwell on the negatives effects that goes on with this disease
Hi! Im 19 years old now, diagnosed almost 7 years ago now. For me some of the things that sets me off are salads (those greens), spices (garlic, onions), and anything with a ton of fibre. I've been living with it for some time now, and for me I'm still unable to eat whatever I want :( (humira once a week)
I can't even drink a cup of water without my stomach going crazy. I don't even have to eat anything and it happens, especially a 2 or 3 am when I finally get to sleep.
I was diagnosed with crohn disease when I was 30 years old I am 60 now. I can totally relate to what you have been through. To hear what you say on this subject brings me to tears because now I dont feel like the only one who has this nasty disease without cure.
In highschool I was 115lbs, that is my goal to be my highschool weight. I cant get past 96 lbs a year ago I was 91lbs. Today I weight 96.6 lbs. I am 5'3" I am so ready to give up this battle. I am just fed-up period
I am on prednisone daily and have been for years, I told short term use its a miracle drug long-term use its a slow poison that can kill you. since the diagnosis I have had breast cancer removal of my R. breast ( took 3 surgeries to get it all) and a total and complete hysterectomy. I gave up on make up and since really it didn't make me feel good at all. trying to make myself look like I Feel great when I really feel shitty inside didn't help. I only looked good for the toilet and the bed. So now to the public at first glance I am passed off as looking like a drug addict. (sure wish I new what drugs those are) Whatever so Im a drug addict. and people are just to ignorant to educate themself on the devastation of having an incurable disease. I havent even got to the good stuff yet.
Thank you for making me feel that I am not alone.
If there was anything I can leave you with is this: if a G.I. specialist wants to give a crohns patient a "temporary colostomy" DONT! I promise, there isnt anything temporary about it.! get a second opinion asap. That was the best advice I ever could receive. crohns is unique person to person as you well know. God bless you and I hope you are doing well. I not alone anymore thank you
What was wrong with the colostomy?
I've been thinking of diagnosis of Crohns for so long.. last time I was at the drs I had a new dr who did a test and they found im loosing blood somewhere not much but I had no idea that could be a symptom.. I've had IBS since I remember! Like since potty training they couldn't figure out what I had so they decided to just say IBS.. theyre still shocked I can even go with my digestive system.. Its so not fun to have IBS when ur a kid! I cant imagine going now! Joints are worsening.. its a tired almost everyday but nights are usually better... uhhh..
im 16 and was diagnosed when i was 14, im so glad you dont sugarcoat it because its a bowel disease, and i think you look beautiful love !
Laura, you absolute babe - thank you!
Sad that you were diagnosed so young, that can't have made things easy or fun.
Definitely keep in touch, it makes things a little more manageable.
Sending you lots of love x
I’ve just recently been diagnosed with Crohn’s disease and diverticulitis. I’m on prednisone (steroid) and it keeps me up all through the night so I understand how you feel about no sleep. My story began with mesenteric adenitis (intestine infection) back in December. It went away and came back a week later. I saw a gastroenterologist, had a colonoscopy, and then was just told last week that I have Crohn’s and diverticulitis. I totally know how you feel. If you don’t mind, what foods are you able to eat and not have a flare up or foods that don’t trigger inflammation for you?
You are interesting, I'm having alot of flem every morning and too feel tired out in the mornings. But its pretty general. Thanks for the video. It hurts to see that you have this.
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Ye IBS is the one that doctors do say when associated with bowels. They said that for me but just had a endoscopy and gastroscopy which they took a biopsy off my stomach so waiting for the resutl which I am scared; this is for celiac disease.
Well done. Great video, good job on raising awareness! Crohns sounds absolutely vile! You pull off the moon face and lack of sleep very well, still a very pretty lady :) xx
Thank you gorgeous, so nice to hear from you. Hope you're well x
Brave and informative revelation
Im 12 and I was diagnosed last year and it took 9 months before i was diagnosed.
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Nice job Mrs!!! My sister in law has been living with chron's since her early teens and has always sounded like a major pain in the...well...ya know! conversation leads to cure...keep it up 😎😎
Charlie, so nice to hear from you! Hope you're well?
Crohn's world seems to be a small world when you talk about it! x
I have drink Water and ended up in the hospital, but I stop eating red meat, and I try not to have to much sugar, I was diagnosed a little over a year but I been dealing with this for more then two years I have been hospitalized so many times I can’t even count, it’s insane, I would like to know were I got this from.
The whole thing was the truth that's how I feel when I wake up every day feels like I'm in a whole nother personality but some kind of way we still got to stand strong cuz people just don't understand what we go through on a daily basis
You are such an adorable young woman. God bless you! You have a darling personality!
Had Chrons for about 3 years now. It's been one hell of a time with this disease. I get pop-ups from photo albums I posted on facebook when I was backpacking / traveling around the world before my Chrons really started to get more severe.
It always makes me realize how much energy I had back then, It makes me realize the changes in my mood, it makes me realize how I don't feel like doing a lot of things I used to enjoy.
I'm currently gluten-free, sugar-free (no added cane sugar only sugar from fruit), dairy free (sheep/ goats milk, kefir, yogurt, and cheese are ok for me) and that has definitely helped. If someone is looking to do an elimination diet that many people have had success with I recommend the book "Breaking the Vicious Cycle" and also search the SCD Diet (Specific Carbohydrate Diet) online! Another thing that helps for many people is Marijuana + extracts such as CBD.
Some health / supportive supplements I take are - Glutamine 20g per day in the morning on an empty stomach with Bone Broth, I make it at home from grass-fed cow bones (very restorative to the gut), Turmeric Curcumin (with 95% standardized curcuminoids), Boswellia extract, Ashwaganda extract, Holy Basil extract, Zinc, Vitamin D oil, Advanced B complex, Pure Liver Iron supplement (optimal absorption), Kyolic Aged Garlic Extract (very good!), FISH OIL!! (find a good one that is not rancid, many capsules are! pay more for the quality stuff that will really benefit you)
PROBIOTICS! You can eat fermented foods or drinks like goat milk kefir which are rich in probiotics to help repopulate the gut with beneficial bacteria. I take a probiotic called VSL #3 with 450 billion probiotic bacteria per serving, its expensive, but has been backed by research. Any probiotic will benefit you. Research the most beneficial bacteria for those with Chrons!
Many of the supplements I mentioned have anti-inflammatory properties. I take the bone broth with glutamine first thing in the morning on an empty stomach, then take my 2 Tumeric capsules after breakfast with a sachet of VSL #3 probtiocs. I then take the recommended daily dose of my vitamins/ minerals - B complex, Vitamin C (can be harsh on the gut for some), Pure Liver Iron, Zinc, Fish oil, Boswelia, Ashwaganda, Holy Basil, Kyolic Aged Garlic Extract and berberine. I then also take the Ashwaganda, Boswelia, Berberine and Kyolic Aged Garlic Extract after lunch and dinner. I finish the day with 20g of Glutamine in water before bed.
When choosing supplements make sure to research the most bioavailable/ absorbable forms. Many drugstore vitamins are cheap forms of the vitamins / minerals with low absorption, especially for those with compromised gut lining.
Its hard, but always helps me to look at other people who have it worse to put things into perspective. I have been blessed for most of my life and this is a hardship I/ we have to go through. That is not to belittle the suffering we have to endure, but I find it is a comparison that can help ease that suffering.
Much love to you all, I hope you all see improvements in your condition. Many many people are going throgh this.
Seb
A few more things to add - I have been an avid gym goer for the last 8 years, looking at me (like many) you would never know that I have this disease. I have an aesthetic physique that many others work towards achieving.The extreme fatigue can make it difficult to get out of bed let alone go for a workout at the gym - I have found though, that PHYSICAL ACTIVITY greatly increases energy levels and can help deal with some of the stress that having the disease can bring. Whether its weight training or something like yoga, I believe many people can benefit from keeping some sort of physical activity in their life.
I also recommend MEDITATION. There is more and more research on the cognitive benefits meditation has, but also its ability to help manage stress. I recommend at least 10 minutes of guided meditation 1-2 times daily, ideally morning and evening. There are many ways to learn to meditate, an app I recommend is Headspace. There are also many videos on RUclips. Some are better than others.
I hope these ideas and recommendations can help some of you.
Those are alots of suplements not many people can afford, which ones are the most necessary would you say? And also how are you doing currently?
Help! I’m getting the camera down my throat and up the other end too. I personally don’t feel like I have Crohn’s but have most symptoms and I’ve been struggling for years. My parents want me to get tested to be safe but I’m scared that I’m wasting peoples time. The pain isn’t always there but then it is it’s really bad and I end up calling an ambulance :/
I was diagnosed with crohns in 2012 they couldn't figure it out in new hampshire ended up moving to washington state they did a colonoscopy and found out right away ive been on pantasa for some time now i take it every once ina while bc i have a low to sometimes mild case but i know how you feel sometimes i gotta call out of work when the cramps get that bad and i was told to stay awat from greasy food or deep fried foods so i eat alotta grilled or boiled or baked foods
Also to stay away from sugary foods no milk products either it sucks but i learned to live with it was told i had it at 18 and im 24 now married and gonna have my first kid soon so dont let crohns stop you or anything you wanna do in life
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Hey I'm looking for some advice, I've got a lurgy, would normally take paracetamol or ibuprofen but I'm I bit worried is going to aggrevate my tummy, any ideas?
I'm 14 and got diagnosed a year ago with Crohn's disease I've been in and out of hospital for the past year. It took over six months for them to diagnose me I was tested constantly every week with different tests ranging from blood MRIs Stool all of it I had lost 10 kilograms and was constantly getting temperatures of 38 to 42 I would never be hungry and will get pains like there was some sort of fighting in my stomach. It was really scary because my family has a lot of history with bow cancer and other sorts of cancer sorry I was tested for all that they were never fully sure that it Crohn's disease. Whenever I was going to get a coalenoscope or gasgosgropy (sorry don't know how to spell that) They would never find anything. It was very difficult especially since I've only just started high school (I live in Australia) I had to have weekly blood tests and would miss weeks of school when I was sick I would be in bed all day. And when they finally decided to do treatment on me the treatment that was a drink supplement called fortisip I had to have that and no food at all for 8 weeks it was disgusting out here then that I'm on so many medication. I finally got off and been off them for about three weeks and my doctor put me back on them he did this three times in the year. My flares are as bad as they can get the doctor says Iv had olsers lining my stomach. I hate having Crohn's disease I think so many Melt dows angsiaty and panic attacks I see a therapist dietician specialist surgeons and so many more people I'm 14 and Crohn's disease has fourced me to grow up. It's so degrading I'm so self concession. My flowers have finally slowed down and is nearly contained but I am now dealing with a Perry anal abscess and fishers near and in my bottom. I think it's good someone is speaking up about it.
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Haha yes !🤗! (18year old now ....diagnosed at 3 iv had every medication possible ....now on adaminalab injections!) totally cheered me up ! Xx