Hello gorgeous, I just wanted to thank you for coming out with these videos. I was diagnosed when I was 17, a really long and hard 4 years ago! :( You should post a video about what doctors say. How they say there's nothing we can do besides take medication for the rest of your life. PS. I proved them wrong there. I got myself into fitness and I took really good care of myself and my body and I've been clean from mediation for a while now mostly because of my ego. I refuse to take steriods and meds forever so I started to eat healthy. I saw a massive difference. However, I fell off the healthy wagon and I'm starting to feel like a flare up again :((( I'm in the middle of planning out the next 8 weeks in regards to eating clean and this time I am determined to stick through it forever. No more processed foods!!!!!!
I love this video! I've had Crohns since I was 7 years old and I'm now 17 so I've been dealing with it for quite a while. I've had to quit my job, drop out of school, and rarely leave my bed due to it. None of the meds work and the only thing that has only (temporarily) helped was surgery. So glad to hear that I'm not the only one
I just wanted to thank you for making these videos. I am 20 years old and was diagnosed with Crohns at the age of 10, Ulcerative Colitis at the age of 16 and IBS at 19. In the 10 years that I've been battling the weight gain, hair loss, fatigue, chronic diarrhea etc. it's so nice to see the community that you've built on here. The weight gain was something that I struggled with the most, mentally, over the years and I always would tell my friends and family that it was because of my medication but I would get the "that's just an excuse" eye roll. I'm sorry that you and many others have gone through the same thing but it's so refreshing to hear that I'm not alone in this.
Ah, I became so emotional after this video and reading these comments. I've never really heard other people talking about their hair struggles, moon face, bloating with IBD. I've had Ulcerative Colitis since I was 16, now 10 years later I am finally in better control of my health, medication free but still deal with thinning hair and bloating, feeling gross. I just cut most of my hair off last week and this video has really made me feel like I'm not alone. Thank you so much for this and to everyone who has shared their story in the comments.
I am 24 and I have had Crohn's Disease for 10 years. I am so happy to finally hear someone communicate their true thoughts and emotions about this life changing disease. It turns your whole life upside down and I still struggle to find a sense of normalcy after 10 years. I would love to hear more of your story and more about you! I think it is very important for young women to feel they are not alone in this and that there is a supportive community available! You are fantastic and doing a wonderful job!
Your so inspirational! Keep going girl, I've been on azathioprine for months and I've experienced everything you have, finally getting off my steroids this week after a 6 month dose! Keep battling on 🙌🏼
Hey Avie May, thank you so much for the lovely comment. Poor you having to be on steroids for so long, they are honestly the worst so completely feel your pain. What dosage of Aza are you on at the moment, and in general do you feel like it's been beneficial for you? Sending you love x
Ava Hannon what’s up Ava I feel weird or maybe it’s cause I’m a man when I’m in a flare up I lose so much weight the Steroids make me feel a lot better an more confident about my size but now I’m on the injections an they work pretty well i Exercise when I don’t feel lazy but stay strong
Great videos and it's nice that you inspire others! I've had ulcerative colitis (very similar to CD) since the beginning of my sophomore year and had my whole colon and most of my rectum removed by mid senior year. keep up the videos!!
Thank you for talking about this, I've been feeling really alone in my ongoing battle with self image! I just have to remind myself every scar is a story of strength☀️
I'm glad I found you're channel. I like your videos, I hope you continue with them. I was diagnosed with Chron disease 3 years ago, I had a hard time before I found a doctor who helped me ... I'm in a year and a half remission, almost 2 ... I'm so happy to see you staying so pozitive and I hope you'll be better and better .... we all have to be ♥♥♥ stay strong ♥♥♥
Thank you for your message and it's amazing to hear that you've been in remission for so long! Having a great medical team is so important and I am glad that you have great support! Sending you love x
This is so refreshing! It's really helpful to kind of find someone who seems like me and my girlfriends, but who just so happens to be dealing with crohn's too. Really relatable. Please keep making these videos, I really like your outlook. Also that jumper is beautiful.
Thank you, that literally means the world! Glad you can relate and that you enjoy them! Am hoping to film another next week. PS) The jumper is from Zara x
I've had crohns since I was 6 and I'm 17 now I've had my large bowel removed I'm on azathioprine, infliximab allopurinol and a few other tablets and nothing works for me anymore because my body has became immune too most medications because it has produced anti bodies ! after being bullied through school because of having a stoma bag, my hair thinning and being told Im the most complicated person my doctor has treated, how annoying is it when people say 'you dont look ill' or its only a few pains take some paracetamol I literally feel like jumping up and punching them in the face!! well if I had the energy 😂
hey girl, I love your videos, and your analysis of body image is spot on. I had two years where I basically lost all of my hair, and I remember feeling the same things, even guilt for taking it so hard, as if it's something almost superficial, your hair~ but it's really not. Crohn's as a whole can totally effect your self image, and I think that's something that's not discussed enough. Love what you said about taking control back, that's super important. xxx
Hi Gabrielle! Thank you so much for your lovely message, it's so nice to hear from you. Totally relate to your feelings about hair loss, it is a really difficult thing to deal with but you do definitely feel judged at times for being so upset over something so seemingly unimportant - I think it's important to remember that everything we experience is important and that as a young woman body image is such a tricky topic for many of us anyway! Hope you're well and managing this weird disease in your own way x
I think you are the only person that really understands! Seriously! Keep making videos please! They are so inspiring and make waking up in the morning (once I finally fall asleep with all the steroids) worth it💜
Your videos are great! I was diagnosed with Crohn's when I was 17. After 7 years of having it I'm in a massive rut.. this video is so true, makes me want to tackle it head on. Please keep up your videos! Xxxx
I'm so glad I found your videos! Everything you said hits home. I have UC and the hair loss and steroid battle has been going on since Dec. I start a new treatment today, entyvio. Hopefully this one helps. You are beautiful ! Thank you for sharing your experience and thoughts. ❤️ Be well!
I loved the comment about building up courage to visit the doctor. I have had loose bowels for around 6 years. I just thought it was normal, until I started passing blood. So thought I better visit the doctor. Now i'm confused and shitting myself about my scheduled visit to the hospital. In the search for information, I have stumbled across you on youtube, your character is making a drab subject very entertaining. Please do some more uploads.
Thank you so much for your videos, currently struggling with crohn's and ugly hair LOL please please help me what toner do you use or your stylist? I would be forever grateful for some hair tips my hair has been thinning so it doesn't need to be a bad color on top of that I've decided.... the struggle is real.
You are so great! I really want to give some of the empowering energy back to you because I love you attitude and your videos. I saw an earlier one a few days after i got diagnosed with crohn's myself (3 months ago) and it made me feel like it's going to be OK. Keep it up and don't let the =) cron's get you down! you're gorgeous
Hi! I really love your videos! I recently got diagnosed with crohns, like a week ago. It has been really hard. I was in the hospital for two weeks on iv and 300ml water a day. Now im on steriods and immunosuppressive medication. Cant eat anything without it hurting. I feel like im constipated all the time, any tips? Thank you!!
Hi lovely, so sorry to hear your recent diagnosis but please do be assured that there are lots of us Crohn's Warriors out here who can offer support and advice. Do you have an IBD Nurse at your hospital who you can contact? They might be better for medical tips than I am, but I have heard that constipation can be a side effect of both Azathioprine (an immunosuppresive) and steroids too...!
I've been looking for so long for a video like this, thank you so much for sharing your experiences I can't tell you how helpful it is. I have just come off steroids for my Crohn's and I have moon face :( I feel that IBD just also affects your entire body confidence because you just know how sick you are inside, that's how it's made me feel. Can't wait for more videos x
I was recently diagnosed with Crohn's Disease. By recently I mean three days ago. I'm trying to educate myself and learn how to help myself and your channel has really been eye opening. Could you please do a 'What I Eat in A Day' ? I would like to see what others eat (even though I know I'll be different in the diet section) but I'm very interested. Thank you!!
I luv you're blogs, wish i was brave enough to do one! I have crohns disease in my large and small intestine, been feed through my veins, tubes up my nose etc etc.........as you say it is a shit disease, i now at the stage where i cannot work, it hurts me to just walk and have had to revert to wearing a wig as lost so much hair!!!! However i always try to look on the bright side and there are so many more people worse off although doesnt feel it sometimes! You're blogs make me smile/laugh, keep them going xxx
Thank you I just cut all my long hair off your story sounds exactly like mine oh my goodness thank you for being so bold it was nice to hear that there are other people out there that know how I feel
I already freaking love you! Yes to everything you are saying. And no it's not shallow the little things make a big difference especially when you feel like shit. I'm 24 and I've had crohn's for 15 years
Thank you, my love! That is a good idea - haven't quite got that one cracked yet but will start doing a food diary and then hopefully can produce a helpful video this Summer about it!
i just got discharged from the hospital after two weeks in. i'm on so many medications that are making me gain weight, my hair is falling out so bad, and the steroids are making me so puffy and swollen. i've been dealing with this flare up for over a year now. i just hate this so much.
Hey honey, so sorry to hear that you're going through such a rough time. I have experienced such similar side effects, so I understand how difficult they can make life and how much it can affect your self-esteem and confidence. Just remember you are still fab and maybe treat yourself to something that will put a smile on your face? You are stronger than you think you are x
I was diagnosed for 1 year now...so I experience all this stuff hair fall,puffy face when I got my steroid...plus sometime I loss weight sometimes I gain weight...I eat this pentasa medicine for one year...but no progressive result for mee...love your videos...stay healthy love you...
I've been in flare up for about a year. I tried Humira, it worked for about a month, then I metabolized it super quick so it stopped working, then I developed antibodies to it, so I switched to Remicade, now I'm metabolizing it too quickly, no antibodies yet though but it's not doing anything good either.. It's been a pretty disheartening year for me. I just want to be able to not constantly worry about where the bathroom is. I keep hoping they'll figure something out, more tests more tests. It's really depressing when you don't seem to get better, you just get more and more uncomfortable tests.
Poor you, Caleb, that sounds like a nightmare! Hopefully they manage to find a medication or solution to stabilise you for a little bit - otherwise, it's really draining and can't be good for your body!
Oh I can empathise so much after a year long flare & steroids I ended up with in hospital for emergency surgery, well 2 operations seven month recovery malnutrition 2 1/2 stone weightloss my hair fell out in clumps it broke my heart I've never been one to worry about my hair it's just hair I kept it highlighted and styled nice enough but it's only when I lose it you realise just how much it can hurt to look as rubbish as u feel inside. Thankfully it's finally growing back but I had to dye my hair dark to make it look thicker and chopped it all up into a short bob. Another thing which is hard to deal with is weight gain.. when u are so used to being skinny any weight gain (even if it's still normal within your healthy height weight ratio frame it can mess with your head and give you unnecessary issues with body image) I'm Struggling a lot with that atm even tho I look terrible having lost my boobs and arse & I want them back I still have a voice in my head telling me I look fat 😠
I feel like you've entered into my own thoughts, Caroline! These sound exactly like the struggles I go through - especially the weight one. I am at the heaviest I have ever been and my body just looks strange due to the constant battle between flare up weight loss and steroid weight gain. Still, people tell me that I'm 'being silly' but that only makes it worse when it feels like they don't understand. Sorry to hear you've been going through these things, it's a mental and emotional battles, as well as a physical one, which people often misunderstand. Luckily, if we can stick together and share our experiences, it makes things a little better to know you're not alone! x
you look great and I gained weight with krohns disease I'm lucky to be a male so bald can be easily accepted among peers. But you do look beautiful an y guy should be proud and fortunate to have a lovely intelligent lady like yourself by his side. Just a male perspective watched a few of you're videos best wishes with your daily struggles with krohns your videos are actually inspiring you seem to have that bubbly personality well best wishes
Hey I might have chrons disease!!! it all started about 2 months ago and I got a abscess on my bum and then I got erythema nodosum on my legs we got worried because we thought that my abscess was just a staph infection ( I had surgery) but about 3 weeks later I got erythema nodosum on my caffs and thighs we had never heard of chrons disease and possibly thought it was just some Some bruises from lack of Circulation my mom called after it worsened and I had an appointment with my surgeon 2 days latter but they wanted me sooner do to consern I went in and was told with my symptoms I could have chrons disease so I had a list of test given such as chest X-ray, blood getting drawn, a colonoscopy and many others I'm scared for my colonoscopy..... Wish me luck 😭
Is it okay to ask, what was the name of the steroids ? I got put on mine and I didn't think I got moon face. I was still skinny on steroids :/ They worked but I only got the losing hair parts and thing got better then worse.. It was weird.
Hey, maybe someone can answer my questions. I've been diagnosed with Crohn's last year and have been in and out of the hospital. I'm currently in the hospital again because of abscesses in my stomach. I have never lost weight because of this though and am a little overweight. Even though I'm not eating a lot because I just can't.. I'm just very confused, of course it gets even worse when I'm taking steroids. But just as you said it is very frustrating since there are a lot of people who think you must be skinny to have it. And honestly I would love to lose a little of the weight. I just don't seem to be able to. Workouts aren't really an option right now but since I'm really not eating a lot at all I'm just confused why I'm not losing ANY weight.. maybe someone has had similiar experiences and wants to share..
I have crohns also. I've had it for 2 years now going on 3. I'm going to college in the fall & im nervous because I have to share a bathroom with 11 other girls . Lol.. how do you deal with sharing a bathroom?
I keep getting comments that I look really good with my weight loss I used to be a size 16 but have dropped to a size 12 or 10 because of having Crohn’s I’m due to go for a colonoscopy soon which I am not looking forward to it is nice to find a support community of others who have this disease too
Hi Jasmin, totally feel your pain and sad to hear that you're finding it difficult. There are lots of online support groups available if ever you need a chat or to discuss things with anyone. Sending you lots of love x
Hi Qwyn, sorry to hear that you were recently diagnosed with Crohn's. The good news is that now that you have a diagnosis, they can focus on trying to get you better with the right medication. Support will be really important, so make sure you surround yourself with good friends who are understanding and also know that there is a growing community of us Crohn's Warriors who are always here for you too! x
Talking about poo is something most people find... awkward? :D But since I got Crohn's I have no problem talking about it, my family/friends also kind of, got used to it? And if it comes to the body image - myself as a man, I had an easier experience, because... I'm a man ;D But few of my female friends with Crohn's disease told me that they struggled with this in the beginning. But as years go by - you put everything in perspective and it gets easier ;) Nice vlog by the way! Greetings from Poland ;)
Hi, amazing that this video has reached Poland! Haha, I was exactly the same - I used to hate talking about anything bowel related but now find myself to be the most open person about it! Really admire your positive attitude, keep going!
Hello gorgeous,
I just wanted to thank you for coming out with these videos. I was diagnosed when I was 17, a really long and hard 4 years ago! :(
You should post a video about what doctors say. How they say there's nothing we can do besides take medication for the rest of your life.
PS. I proved them wrong there.
I got myself into fitness and I took really good care of myself and my body and I've been clean from mediation for a while now mostly because of my ego. I refuse to take steriods and meds forever so I started to eat healthy. I saw a massive difference. However, I fell off the healthy wagon and I'm starting to feel like a flare up again :(((
I'm in the middle of planning out the next 8 weeks in regards to eating clean and this time I am determined to stick through it forever. No more processed foods!!!!!!
I love this video! I've had Crohns since I was 7 years old and I'm now 17 so I've been dealing with it for quite a while. I've had to quit my job, drop out of school, and rarely leave my bed due to it. None of the meds work and the only thing that has only (temporarily) helped was surgery. So glad to hear that I'm not the only one
I just wanted to thank you for making these videos. I am 20 years old and was diagnosed with Crohns at the age of 10, Ulcerative Colitis at the age of 16 and IBS at 19. In the 10 years that I've been battling the weight gain, hair loss, fatigue, chronic diarrhea etc. it's so nice to see the community that you've built on here. The weight gain was something that I struggled with the most, mentally, over the years and I always would tell my friends and family that it was because of my medication but I would get the "that's just an excuse" eye roll. I'm sorry that you and many others have gone through the same thing but it's so refreshing to hear that I'm not alone in this.
Ah, I became so emotional after this video and reading these comments. I've never really heard other people talking about their hair struggles, moon face, bloating with IBD. I've had Ulcerative Colitis since I was 16, now 10 years later I am finally in better control of my health, medication free but still deal with thinning hair and bloating, feeling gross. I just cut most of my hair off last week and this video has really made me feel like I'm not alone. Thank you so much for this and to everyone who has shared their story in the comments.
I am 24 and I have had Crohn's Disease for 10 years. I am so happy to finally hear someone communicate their true thoughts and emotions about this life changing disease. It turns your whole life upside down and I still struggle to find a sense of normalcy after 10 years. I would love to hear more of your story and more about you! I think it is very important for young women to feel they are not alone in this and that there is a supportive community available! You are fantastic and doing a wonderful job!
Also I have that same exact necklace only the loop is a little bit smaller I absolutely love yours you have great Style;)
I have all the symptoms of Crohns. Been ill for nearly a year. The doctors think I have this. watching this has made me feel so much better! thanks x
Your so inspirational! Keep going girl, I've been on azathioprine for months and I've experienced everything you have, finally getting off my steroids this week after a 6 month dose! Keep battling on 🙌🏼
Hey Avie May, thank you so much for the lovely comment.
Poor you having to be on steroids for so long, they are honestly the worst so completely feel your pain. What dosage of Aza are you on at the moment, and in general do you feel like it's been beneficial for you?
Sending you love x
Ava Hannon what’s up Ava I feel weird or maybe it’s cause I’m a man when I’m in a flare up I lose so much weight the Steroids make me feel a lot better an more confident about my size but now I’m on the injections an they work pretty well i Exercise when I don’t feel lazy but stay strong
Great videos and it's nice that you inspire others! I've had ulcerative colitis (very similar to CD) since the beginning of my sophomore year and had my whole colon and most of my rectum removed by mid senior year. keep up the videos!!
Thank you for talking about this, I've been feeling really alone in my ongoing battle with self image! I just have to remind myself every scar is a story of strength☀️
I'm glad I found you're channel. I like your videos, I hope you continue with them. I was diagnosed with Chron disease 3 years ago, I had a hard time before I found a doctor who helped me ... I'm in a year and a half remission, almost 2 ... I'm so happy to see you staying so pozitive and I hope you'll be better and better .... we all have to be ♥♥♥ stay strong ♥♥♥
Thank you for your message and it's amazing to hear that you've been in remission for so long! Having a great medical team is so important and I am glad that you have great support!
Sending you love x
This is so refreshing! It's really helpful to kind of find someone who seems like me and my girlfriends, but who just so happens to be dealing with crohn's too. Really relatable. Please keep making these videos, I really like your outlook. Also that jumper is beautiful.
Thank you, that literally means the world! Glad you can relate and that you enjoy them! Am hoping to film another next week.
PS) The jumper is from Zara x
Looking forward to your next one!!
I've had crohns since I was 6 and I'm 17 now I've had my large bowel removed I'm on azathioprine, infliximab allopurinol and a few other tablets and nothing works for me anymore because my body has became immune too most medications because it has produced anti bodies ! after being bullied through school because of having a stoma bag, my hair thinning and being told Im the most complicated person my doctor has treated, how annoying is it when people say 'you dont look ill' or its only a few pains take some paracetamol I literally feel like jumping up and punching them in the face!! well if I had the energy 😂
hey girl, I love your videos, and your analysis of body image is spot on. I had two years where I basically lost all of my hair, and I remember feeling the same things, even guilt for taking it so hard, as if it's something almost superficial, your hair~ but it's really not. Crohn's as a whole can totally effect your self image, and I think that's something that's not discussed enough. Love what you said about taking control back, that's super important. xxx
Hi Gabrielle!
Thank you so much for your lovely message, it's so nice to hear from you.
Totally relate to your feelings about hair loss, it is a really difficult thing to deal with but you do definitely feel judged at times for being so upset over something so seemingly unimportant - I think it's important to remember that everything we experience is important and that as a young woman body image is such a tricky topic for many of us anyway!
Hope you're well and managing this weird disease in your own way x
I think you are the only person that really understands! Seriously! Keep making videos please! They are so inspiring and make waking up in the morning (once I finally fall asleep with all the steroids) worth it💜
Your videos are great! I was diagnosed with Crohn's when I was 17. After 7 years of having it I'm in a massive rut.. this video is so true, makes me want to tackle it head on. Please keep up your videos! Xxxx
I'm so glad I found your videos! Everything you said hits home. I have UC and the hair loss and steroid battle has been going on since Dec. I start a new treatment today, entyvio. Hopefully this one helps. You are beautiful ! Thank you for sharing your experience and thoughts. ❤️ Be well!
I loved the comment about building up courage to visit the doctor. I have had loose bowels for around 6 years. I just thought it was normal, until I started passing blood. So thought I better visit the doctor. Now i'm confused and shitting myself about my scheduled visit to the hospital. In the search for information, I have stumbled across you on youtube, your character is making a drab subject very entertaining. Please do some more uploads.
Thank you so much for your videos, currently struggling with crohn's and ugly hair LOL please please help me what toner do you use or your stylist? I would be forever grateful for some hair tips my hair has been thinning so it doesn't need to be a bad color on top of that I've decided.... the struggle is real.
You are so great! I really want to give some of the empowering energy back to you because I love you attitude and your videos. I saw an earlier one a few days after i got diagnosed with crohn's myself (3 months ago) and it made me feel like it's going to be OK. Keep it up and don't let the
=) cron's get you down! you're gorgeous
Hi! I really love your videos! I recently got diagnosed with crohns, like a week ago. It has been really hard. I was in the hospital for two weeks on iv and 300ml water a day. Now im on steriods and immunosuppressive medication. Cant eat anything without it hurting. I feel like im constipated all the time, any tips? Thank you!!
Hi lovely, so sorry to hear your recent diagnosis but please do be assured that there are lots of us Crohn's Warriors out here who can offer support and advice. Do you have an IBD Nurse at your hospital who you can contact? They might be better for medical tips than I am, but I have heard that constipation can be a side effect of both Azathioprine (an immunosuppresive) and steroids too...!
You're back..and looking smokin hott!!! Love that hair girl....and what you're doing!!! High five!
I've been looking for so long for a video like this, thank you so much for sharing your experiences I can't tell you how helpful it is. I have just come off steroids for my Crohn's and I have moon face :( I feel that IBD just also affects your entire body confidence because you just know how sick you are inside, that's how it's made me feel.
Can't wait for more videos x
Hated my moon face tho and agree people who say but you don't look any different is a bloody insult lol! xx
I was recently diagnosed with Crohn's Disease. By recently I mean three days ago. I'm trying to educate myself and learn how to help myself and your channel has really been eye opening. Could you please do a 'What I Eat in A Day' ? I would like to see what others eat (even though I know I'll be different in the diet section) but I'm very interested. Thank you!!
I luv you're blogs, wish i was brave enough to do one! I have crohns disease in my large and small intestine, been feed through my veins, tubes up my nose etc etc.........as you say it is a shit disease, i now at the stage where i cannot work, it hurts me to just walk and have had to revert to wearing a wig as lost so much hair!!!! However i always try to look on the bright side and there are so many more people worse off although doesnt feel it sometimes! You're blogs make me smile/laugh, keep them going xxx
Thank you I just cut all my long hair off your story sounds exactly like mine oh my goodness thank you for being so bold it was nice to hear that there are other people out there that know how I feel
I already freaking love you! Yes to everything you are saying. And no it's not shallow the little things make a big difference especially when you feel like shit. I'm 24 and I've had crohn's for 15 years
Please keep posting more I find your videos very helpful . And can you do a video about what you eat in the day
Thank you, my love!
That is a good idea - haven't quite got that one cracked yet but will start doing a food diary and then hopefully can produce a helpful video this Summer about it!
+GUT INSTINCT yes that would be very helpful.looking forward to it 😍 I love your videos and your personality
I love your honesty! Thank you for keeping it real!
Oh I love your videos! Please do more! So makes my day better!
Thank you, Karen - that means a lot!
What a great message to share! You look amazing by the way :)
Jemma, that's so sweet, thank you! Glad you enjoyed it.
Sending you love x
i just got discharged from the hospital after two weeks in. i'm on so many medications that are making me gain weight, my hair is falling out so bad, and the steroids are making me so puffy and swollen. i've been dealing with this flare up for over a year now. i just hate this so much.
Hey honey, so sorry to hear that you're going through such a rough time.
I have experienced such similar side effects, so I understand how difficult they can make life and how much it can affect your self-esteem and confidence. Just remember you are still fab and maybe treat yourself to something that will put a smile on your face?
You are stronger than you think you are x
shelbatr0n praying for you.
I was diagnosed for 1 year now...so I experience all this stuff hair fall,puffy face when I got my steroid...plus sometime I loss weight sometimes I gain weight...I eat this pentasa medicine for one year...but no progressive result for mee...love your videos...stay healthy love you...
I love your videos, please keep making them!
Thank you so much, that means a lot!
I've been in flare up for about a year. I tried Humira, it worked for about a month, then I metabolized it super quick so it stopped working, then I developed antibodies to it, so I switched to Remicade, now I'm metabolizing it too quickly, no antibodies yet though but it's not doing anything good either.. It's been a pretty disheartening year for me. I just want to be able to not constantly worry about where the bathroom is. I keep hoping they'll figure something out, more tests more tests. It's really depressing when you don't seem to get better, you just get more and more uncomfortable tests.
Poor you, Caleb, that sounds like a nightmare!
Hopefully they manage to find a medication or solution to stabilise you for a little bit - otherwise, it's really draining and can't be good for your body!
This is EXACTLY what it is and I'm so greatful I'm not alone with it. Kinda.
Oh I can empathise so much after a year long flare & steroids I ended up with in hospital for emergency surgery, well 2 operations seven month recovery malnutrition 2 1/2 stone weightloss my hair fell out in clumps it broke my heart I've never been one to worry about my hair it's just hair I kept it highlighted and styled nice enough but it's only when I lose it you realise just how much it can hurt to look as rubbish as u feel inside. Thankfully it's finally growing back but I had to dye my hair dark to make it look thicker and chopped it all up into a short bob. Another thing which is hard to deal with is weight gain.. when u are so used to being skinny any weight gain (even if it's still normal within your healthy height weight ratio frame it can mess with your head and give you unnecessary issues with body image) I'm Struggling a lot with that atm even tho I look terrible having lost my boobs and arse & I want them back I still have a voice in my head telling me I look fat 😠
I feel like you've entered into my own thoughts, Caroline!
These sound exactly like the struggles I go through - especially the weight one. I am at the heaviest I have ever been and my body just looks strange due to the constant battle between flare up weight loss and steroid weight gain. Still, people tell me that I'm 'being silly' but that only makes it worse when it feels like they don't understand.
Sorry to hear you've been going through these things, it's a mental and emotional battles, as well as a physical one, which people often misunderstand.
Luckily, if we can stick together and share our experiences, it makes things a little better to know you're not alone! x
Where did you get this shirt!!!
you look great and I gained weight with krohns disease I'm lucky to be a male so bald can be easily accepted among peers. But you do look beautiful an y guy should be proud and fortunate to have a lovely intelligent lady like yourself by his side. Just a male perspective watched a few of you're videos best wishes with your daily struggles with krohns your videos are actually inspiring you seem to have that bubbly personality well best wishes
Hey I might have chrons disease!!! it all started about 2 months ago and I got a abscess on my bum and then I got erythema nodosum on my legs we got worried because we thought that my abscess was just a staph infection ( I had surgery) but about 3 weeks later I got erythema nodosum on my caffs and thighs we had never heard of chrons disease and possibly thought it was just some Some bruises from lack of Circulation my mom called after it worsened and I had an appointment with my surgeon 2 days latter but they wanted me sooner do to consern I went in and was told with my symptoms I could have chrons disease so I had a list of test given such as chest X-ray, blood getting drawn, a colonoscopy and many others I'm scared for my colonoscopy..... Wish me luck 😭
My Crohn's Disease causes my hair to fall out and dramatic weight loss...I always tell people that Every person with Crohn's is different!
Is it okay to ask, what was the name of the steroids ? I got put on mine and I didn't think I got moon face. I was still skinny on steroids :/ They worked but I only got the losing hair parts and thing got better then worse.. It was weird.
Hey, maybe someone can answer my questions. I've been diagnosed with Crohn's last year and have been in and out of the hospital. I'm currently in the hospital again because of abscesses in my stomach. I have never lost weight because of this though and am a little overweight. Even though I'm not eating a lot because I just can't.. I'm just very confused, of course it gets even worse when I'm taking steroids. But just as you said it is very frustrating since there are a lot of people who think you must be skinny to have it. And honestly I would love to lose a little of the weight. I just don't seem to be able to. Workouts aren't really an option right now but since I'm really not eating a lot at all I'm just confused why I'm not losing ANY weight.. maybe someone has had similiar experiences and wants to share..
I have crohns also. I've had it for 2 years now going on 3. I'm going to college in the fall & im nervous because I have to share a bathroom with 11 other girls . Lol.. how do you deal with sharing a bathroom?
I would love to gain weight ever since i've got chrons i've lost weight and people keep bringing it up like i know i look at myself in the mirror ...
I keep getting comments that I look really good with my weight loss I used to be a size 16 but have dropped to a size 12 or 10 because of having Crohn’s I’m due to go for a colonoscopy soon which I am not looking forward to it is nice to find a support community of others who have this disease too
i have crohns and find so hard to fight it
Hi Jasmin, totally feel your pain and sad to hear that you're finding it difficult. There are lots of online support groups available if ever you need a chat or to discuss things with anyone.
Sending you lots of love x
Guys what is moon face please ?
Hey
Moon fan is when your cheeks are swollen
Im going to find out tomorrow if I have Crohn's or not 😣
qwyn williams I have and don't worry if you have because it gets better
Sofia Mendes yep I have Crohns..
sorry...
Hi Qwyn, sorry to hear that you were recently diagnosed with Crohn's.
The good news is that now that you have a diagnosis, they can focus on trying to get you better with the right medication.
Support will be really important, so make sure you surround yourself with good friends who are understanding and also know that there is a growing community of us Crohn's Warriors who are always here for you too! x
Talking about poo is something most people find... awkward? :D But since I got Crohn's I have no problem talking about it, my family/friends also kind of, got used to it? And if it comes to the body image - myself as a man, I had an easier experience, because... I'm a man ;D But few of my female friends with Crohn's disease told me that they struggled with this in the beginning. But as years go by - you put everything in perspective and it gets easier ;)
Nice vlog by the way! Greetings from Poland ;)
Hi, amazing that this video has reached Poland!
Haha, I was exactly the same - I used to hate talking about anything bowel related but now find myself to be the most open person about it!
Really admire your positive attitude, keep going!
Dont worrie about it! colitis is a beast to diagnose also.....
Sound like me I go 20 times a day no control I cough and I shit
Thanks
I have chrons and I had a flair up in 2013 on um on remicade treatments and helps me control my symptoms
So pretty 💕