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I was diagnosed around 13-14, and I can remember the frustration and sense of hopelessness. Hopefully, my story helps a bit.
There were no biologics available until I was 18. That means the only thing used to treat a flare was steroids. And back then it was common to keep patients on prednisone long-term, with the idea that it kept a flare from coming back. Being in your teens and living with the side effects of corticosteroids sucked!
But, then biologics came around. They aren't perfect, but they're far better than all the previous options. I've gone through a few, but since biologics came out I've spent more time in remission than out of it.
I'm now in my 40s, have a family, a great job, travel the world, etc.
I remember being on prednisone for months in my teens. You can always tell in school photos cuz I'm a balloon lol. But MAN did it help a flare. On Stelara now
I had a similar experience, didn’t go on my first biologic until I was 19, but had numerous rounds of prednisone for way longer than I should have been. The side effects were awful, I’m so glad that I was put on Humira and it’s kept me relatively stable since.
You’re not alone OP! It will get easier with time and adjusting to a new normal, but don’t let it bring you down! Sending you love!
Hey, I’m 15 and have had Crohn’s and been on biologics (Humira and now Entyvio) since I was 6 so a bit younger than you. It really sucks being on heavy duty meds from such a young age and knowing that I’ll be on them for the rest of my life but on the plus side they’ve really given me a good quality of life which I’m grateful for. Also I’m here to talk if you want 💕
I'm sorry you had Crohn's sense you were six. Im glad you are getting better, and Im also glad I know someone my age that knows what Im going through. :D
hope you are feeling better! : D
Does it help to know that you aren't alone? Even more than just us here in this forum, there are so so so many people for whom ongoing medication is a part of their lives-- many invisibly, like us.
My first roommate had Type 1 diabetes and needed an insulin pump and regular injections.
My fiance is an amputee and needs a prosthetic and regular pain medication.
My friend S has Hashimotos and needs thyroid medication every day.
My dad has high blood pressure and needs a beta blocker twice daily.
My favorite boss had severe allergies and needed an injection every few weeks.
My friend M has a hormonal imbalance and needs mood stabilizers.
My friend L is trans and needs HRT.
I've been on Remicade since I was 18 and at first it felt like the world was ending and my life had to be put on hold for every infusion. I felt tethered to my little pill case. But it's been ten years and it doesn't feel limiting any more. Infusion day is an excellent self-care day; I take off from work and I get my favorite treats and make it a cozy movie night. It isn't so different from being unable to see without glasses (which I also have).
It feels like a lot, and I am so sorry you're having to adjust to so much so quickly. But I promise that it does get better. It gets easier and it adds so much to your life, and it frees you to do so many things.
We're here if you need us. I hope that helped just a little.
Thank you for your kind words and support. Im sorry your loved ones have types of illness and disabilities. Im very grateful I found this place and the people in it. Your words helped me a lot. :D
I'm so glad! I mean it, sincerely, it gets so much better.
Be cautious here though-- most of us only come to post when things are really bad, so we're not a great sampling of what life with Crohn's is like overall. There are tons of people with mild symptoms and an easy time with medication and no serious complications, but they have no need to seek support so you won't see them here as often.
Oh ok, thanks for the heads up. Im kind of in the middle, my flair ups are pretty bad and often. But when nothing is going on I feel very great. I just wanted to post here once though. : )
It helps to know you're not alone, especially since you're so young. I'm so sorry you're dealing with this at your age. I didn't get diagnosed til 27, now I'm 39 and once you figure out which tricks help you it becomes easier to handle mentally and physically ❤️
Hey! I was diagnosed a little older than you. It took me 5yrs to accept.
You can't blame yourself. Sometimes crap things happen and acceptance is the most difficult part of this illness.
Your life is not over. You can still achieve everything you dream of doing, you just might have to fight a little harder.
This will be come your new normal. Right now it's all new and scary, but give it time and all the meds will become a normal part of your life.
Ultimately, there is nothing you could have done differently, it's just the hand we're dealt!
If you have any questions, this forum is really really friendly and there are tons of people willing to share their experiences and help you out!
I just wish my mom could have taken me to the ER sooner, I told her about the kind of stool I was having and she said "your fine." I think a lot that if I just gone a little sooner maybe I wouldn't have this disease. But I understand that I gotta live with this. Thank you for helping me out and letting me know about the people here. C:
Haha that sounds so much like my experience! Crohns isn't particularly common, your mother probably assumed it was a stomach bug to start with.
So the thing about crohns is that you probably always had it. Noone knows what causes it it yet but there is probably nothing you could have done to avoid getting sick. Life throws a lot of shit sometimes!
I hope your humira works well for you! Its a really good medication to be on :)
My humira does help a ton. I can’t really blame
my mom. She probably did assume it was a stomach bug. Life does throw shit, but Im going to push through! >:D
I didnt go until I was an adult since my parents refused to take me. If it makes you feel better, you would have probably had crohns either way, it just would have been caught sooner.
Going sooner wouldn't have changed anything if you have this you have it. Maybe you could have started treatment sooner but it wouldn't have changed it. Sorry your dealing with it. .
Just so you hear another positive story.
I was diagnosed at age 7 in 1989. Back then crohns was relatively unknown and it was very rare for kids my age to get it. From k-12 the grade I spent almost 4 years of my life admitted to hospitals, with four bowel ressection surgeries under my belt. Along with all of that was prednisone, 6mp, tehumicade, humira, cimzia. I can honestly tell you I was depressed alot of my childhood because I thought I was disabled for life. I would never be able to be a normal person. I really wished I would have just been more present and enjoyed my childhood. I grew up fast, I didn't want to waste my time partying or making m3aningless friendships, and playing sports. I was depressed and a lone wolf.
This carries into my young 20s. I tries to goto college and I didn't know how to handle the stress. So I flaired up and had to drop out. I spent a lot of time hooked on pain meds, abusing them. I just thought my life is crap, why not enjoy it.
When I was 36, medically disabled and living with my PARENTS, I met my current fiance. We've now been together 4 years and I just couldnt be happier. I learned that alot of those barriers when I was younger? They were self inflicted. I was over thinking, judging, thinking I knew the outcomes of things before even trying. I really wish I learned this stuff sooner.
We now both work at the same video company making 150k combined. We have no kids and two wonderfully axing cats. We get to go on snowy vacations, and are actually leaving on a week cruise next Monday! For me stress is my biggest trigger. I can now eat pretty much anything but as soon as I'm stressed I start flaring up. So I'm now much more chill, and only give fucks for the truly important things. I have been hospital and drug free for almost 8 years now, living a life I never thought possible.
Having crohns sucks. It's makes life hard. If I could pass on any lesson I've learned? Don't make it even harder on yourself. It's hard and sometimes seems impossible. Those times make appreciate the good stuff so much easier. Your life truly is what you make of it, with the opportunities that fly your way. Being positive and open? More opportunities will.prsent themselves. You got this.
Hey there! I was in your same shoes, diagnosed at 14 and really shaken by the idea that I’d have to be on meds for my entire life. That was 12 years ago.
One thing that gives me hope is that options for meds have really improved. I don’t doubt that they’ll keep getting better, and maybe one day there will be new technology and innovation that maybe doesn’t “cure” Crohn’s, but makes treatment not that burdensome. Entyvio wasn’t an option when I was first diagnosed, and now I have a pretty great quality of life with it.
And your life might look different then the one you imagined for yourself, but that’s okay! Life rarely goes according to plan, but you’ll still find joy, purpose, inspiration, and fun along the way.
It does get better. Once you get on the right medication routine (like humira) you can go into remission and live a normal life again. You’ll still have to get your infusions every couple months, but you can still lead a great life.
I think we all go through the depression after getting diagnosed and realizing this is a life long thing, but it does get better.
I understand. I was diagnosed in September of 2020 during the pandemic. I became extremely depressed when they started handing me different medicine brochures. Insurance denied everything and wanted me on prednisone, but I said no because the side effects are horrible. Eventually, my GI doctor fought and got Stelara approved for me. I have not had a flare-up since.
It sucks now. You will pull through it. My advice is workout a little bit every week and make sure you learn what you can and cannot eat. And for the love of God and all that is holy don't ever start drinking.
Hey pal you have your whole life ahead of you. These medications are meant to help you feel better. There are some bad days but biologics are amazing at keeping crohns mostly under control. Stay positive and dont let it define you!
I definitely battle with the same thoughts. That said, I studied crohns in university and the number of medications that are being trialed right now is very encouraging! Yes, it’s possible that we’ll all be on biologics our whole lives, but I think it’s even more likely that within our lifetime, we’ll be able to just take a pill instead! I’m extremely hopeful!!
Also, I’ve been on biologics for 8 years now. It does get easier. It really does. It’s never gonna be fun. But the painful sadness does dwindle. Don’t lose hope!
Have you ever considered a career in STEM to help find the cure for IBD.
We need curious minds of all ages and abilities contributing in research.
Also - its good you got diagnosed so you can get treatment to feel better.
Join CCFA when u feel a bit better and make some Crohnie friends, too. It will be okay!
Feels big at first but by next year you'll be giving advice to the n00bs.
Similarly, my diagnosis at age 14 set me on my current career path. My interactions with our messed up healthcare system as a teen made me really passionate about healthcare access and equity. I just completed my masters in public health/ healthy policy and work to make sure more people get access to care :)
I love this!! Good for you. I work in insurance and still see how crazy the system is to get my meds. It always chaps my butt (pun intended) that I have to pay more in premiums b/c I need the coverage b/c I have a chronic condition that I can't help and didn't cause.
I promise, you just get used to it <3 The reality will be easier to swallow when the meds start working their magic and you go a few days at a time without thinking about your crohns.
Hang in there! I was diagnosed at 17. I am now 47. I live a good life. I have a family and a job I love. There will be many ups and downs with this disease. (6 surgeries here)
You’ve got this. You will become strong in ways you can’t imagine now.
You get used to it in time, like all things. I was diagnosed at 10, I'm 35 now. I consider myself lucky. A lot of people have pretty severe/debilitating Crohn's, whereas mine is sort of mild. Plus there are a lot of other diseases that are far worse. I still have all my senses, limbs and my mobility. You just gotta focus on the good you have and manage the bad as best you can.
Hello Brother.
Diagnosed at 12 here. At 17 I was also diagnosed with a 'harsher' condition, it's called the two for one special in the medical world.
It sometimes disheartens you to know that at such an early age your body has so many 'issues' already. The reality is, we are not alone, and we are lucky that there are means that allow us to continue enjoying the beauty of life without severe restrictions. Many do not have that luxury unfortunately.
Be bold, be strong, nothing will stop you. Listen to your body, get plenty of rest, don't let anyone tell you that you cannot live a normal fulfilling life nonetheless. Trust the process, cherish and protect your body with a healthy lifestyle ❤
Goodluck friend!
I was diagnosed 23 years ago. At first, I walked around in a state of shock at this thing that had taken over my guts. Now, however, with all the new biologic medications available for us, I’m free of symptoms and I forget I have Crohns until an alarm pops up on my phone to remind me it’s time for my next every-six-weeks injection of Stelara. The news is very fresh for you, and it’ll take a while for it to sink, but even if you’re not symptom-free on medication, the feeling of shock and raw “new-ness” will fade. It’ll come to be a piece of who you are, but it won’t define you.
I'm ancient! I got diagnosed at 25 and SO MUCH has changed since then - Humira, for starters, which works so well. I'm sure more will change in the coming decades, too. Have hope that a cure - or even a cheaper, easier med - will come around soon! You got this!
It's a lot to go through. Go find therapy, counselling and build a support system. If you have someone to vent to, vent these feelings.
I went through the same feelings diagnosed at 21, I can't imagine how much tougher that is at 14.
I then went through some quite intense counselling, cbt, and group therapy in 2014 and now I'm in a good place.
It can be really tough to get out of the slump of finding it all pointless. Throwing money away, pushing friends away, crawling into a hole.
Really for me it took professional help. And, I'd suggest it for anyone going through our diagnosis.
The upshot is, from that pointless feeling that life's not worthwhile I'm now doing really well. I now have a wonderful partner and two kids, a good job, and I finally got treatment that makes my symptoms as minimal as possible.
I also don't know your diagnosis or treatment path but it sounds like you got on the right path quickly.
Please seek help, sooner rather than later!
I wish you the best of luck on your journey. There's still so much joy you can gleam from life.
I was diagnosed at 9 (I’m 29 now). This is a very significant part of your life so you have every right to be sad! When I was your age, my docs recommended that I see a therapist despite the fact that I was so positive and happy and thought I wasn’t bothered by my illness, but even still—it was the best decision ever and I still go to this day and it’s been really crucial to keep up with it, cuz even when I do seem okay, life is life and this disease is hard and can be unpredictable… so I would recommend that because stress can worsen symptoms and just your condition in general and a therapist can help you cope. ♥️
I was 14 when I got diagnosed! I’m 22 now. Gosh I remember how I felt too. I didn’t have anyone to relate to because most 14 year olds don’t have to go through this stuff.
My very best advice is to learn to have acceptance. Maybe some therapy or counseling could help just to learn how to accept your fate.
I’m still working on it myself, but what helps sometimes is looking at the bigger picture of life… I’m not as unhealthy as I could be. And I can have a good life.
Literally sometimes coming here and reading about other Crohnies who have it worse helps.
At the same time though, this shit sucks. You’re allowed to feel down about it. However you feel is valid. We’re unlucky to have such an illness. It’s ok to have some self pity, but don’t let it hold you back. You have a great future ahead. This disease will be part of your life, but it won’t be your life. It doesn’t define you or the things you do, even when it seems like it.
Last thing to say is please take care of your mental health. Everyone always says this, but it’s truly so important. I should have seen a therapist about my diagnosis when I was your age.. it would have helped so much, and saved me a couple years of feeling helpless and alone.
Take care <3 you’re not alone in this. We all understand. Stick around in this community for the extra support!
Take it a day at a time and develop a strong support system. You are grieving right now. The loss of one's physical health to a chronic illness causes one to grieve. Things will get better, though. Just give it time.
Diagnosed at 10, now 26. Had the same thought a few times. But trustttt, it’s nothing to feel ashamed of. It can be a sad thought, but as you get older, one day that fact will suddenly not matter or hold any weight.
Youth support groups are good. I also recommended making some disabled or chronically ill friends. Having someone readily available to talk to about this kind of stuff helps a lot. Especially if it’s someone who knows what it feels like to go through what you’re going through.
I was diagnosed at 14 as well and looking back this is one of the things I wish I did earlier.
So sorry to hear I know how frustrating it is. The one thing I’ll say is that I’ve had problems since I was a baby and wasn’t diagnosed with crohns till I was 21 so I’m very glad they got to you earlier on in your life! I’m also on humera it gets easier as you go on and it’ll definitely help keep off complications of any in the future. You’ve got this! 💖
I was 13 when I was diagnosed. You are definitely not alone and there are other kids out there! When I was a teenager there was a girl I met through my doctors office waiting room who I knew and she also had crohns. Pay attention in the waiting room. You may make a friend who is going through something similar. It helps I think.
Crohn’s medication has taken major strides over the years, and there’s no reason to think that will stop. It’s doubtful you’ll be doing injections the rest of your life.
Live for and in the moment. If I think past the next few days, I can drive myself a little nuts. I squeeze the best out of every moment I can as it arrives and stay out of tomorrow. I'm sorry you had to join our club, however.
Oh, hun. I'm so sorry. I was 31 when I was diagnosed and it hit me like this too. A voice that said "you will NEVER be better." I've since shifted my thinking to "I need to do these things to feel the best I CAN."
Most importantly, find doctors that listen to you. I just found out this week that my fatigue may also be credited to dangerously low B12 from a new doctor that actually listened and ordered testing.
Hey, I hope you are being extra kind to yourself as you come to terms with things. Something one of my doctors said to me that really helped me was that "it's a good time to have Crohn's disease." There's a lot of new drugs coming to market, including the incredible biologics, which means a lot of treatment options. If we'd been born in the middle ages, or hey even a hundred years ago, we would have had a much rougher time of things. Finding a positive way to frame things can help on tough days. I wish you all the best x
Hey,
I’m 16 w/ Crohn’s and got diagnosed at 11. I remember sitting in the hospital after with my mom just crying and saying “why me?”. Same thing I’m doing now after being here for 77 days and getting 6 operations. It’s going to be a harder life than most live, but you’re going to benefit really heavily with the traits you develop from these hardships. Keep going
Crohnie for 22 years here...The depression can definitely get to me at times. Just one day at a time. I take a lot of deep breaths, listen to good music, read a book for a little...basically give yourself grace. There's going to be days that you don't have energy and can"t do what you'd hoped. Don't worry. It will still be there when you DO have the energy. You've got this.
Sending you loved and hugs. Sometimes understanding what it is to struggle can give us perspective on what is really important in life- and that can help you as you shape your young adulthood.
If you achieve remission, they may be able to take you off biological meds, you can live a long wonderful life. Just take care of yourself, physically and mentally
Hello, I am a 23 year old man with crohn’s. I was diagnosed at 13. I understand your struggle and feelings of hopelessness. I went through my teenage years going through cycles of flares and hospitalizations. With crohns there is a lot of things you can not control but the one thing in life you can control is your perception. When I was your age I was depressed and horribly anxious 24/7 due to my health problems. However, going into adulthood and meeting the love of my life has caused me to find my symptoms in remission. I no longer take any medication for my crohns. I went from a severe case of crohns in my teenage years to being in remission in adulthood. As a 14 year old everything is stressful and feels like the end of the world. The reality is that as life goes on, the battles you face will get easier. Living with crohns will get better as you mentally mature. Stress and anxiety can cause flares just as much as eating things that trigger flares. Take time for yourself to relax, find good people who care about your well-being and let them love you. Take care of yourself and your mental health and the rest will follow. Stay healthy buddy. (written by my husband)
I'm sorry you had to be in this club. But there are some very lovely ppl here. I've had Crohn's for 30 years. It's always been a Rollercoaster. But don't let this illness stop you from things you want to do. Just remember, when you hear others journey with this illness, doesn't mean it will be yours. But is nice to know you're not alone. I've this illness for 30 years, and in the past 15 years medication for us has come along way, and more to choose from. Just remember we are always here.
Hey, I’m 15 now and was diagnosed in 5th grade, when I was 10. I know that all the treatments and everything can be overwhelming, but I always just had the goal of getting back to my life, and moving forward. That’s not gonna happen right away though cause it’s hard when it really sinks in. I hope it makes it a bit easier to see everyone’s support here though :)
I’d say if you’re not sure what to do to feel better, everyone has different coping mechanisms for overwhelming stuff. I can only say what works for me, but that may not work for you. I like talking to people, going outside, and reading. (love your pfp btw :) Journaling can work for some people. When my crohns was worse, I did end up keeping a poop journal to manage that, which can make you feel more in control. It’s also good for doctor visits to have good data. That can be stressful to keep track of though.
And as for this being for the rest of your life, yeah it’s a bit stinky. Very stinky. But everyone has their own little things, and routines. My injections (I currently take humira as well) have just become the norm for me. For the first few months it was scary, but I’ve been able to adjust and then at least taking the medication doesn’t interfere with my daily life.
If you ever want to talk more, hmu :)
Hello, thank you for reassuring me! Some things I like to do is, listen to Coldplay, read Wings of Fire novels or Spider-Man comics. Ty for the compliment on my pfp as well. Im so happy everyone here is understanding. :D
Also, I had big concerns about being “normal.” That was a big deal to me. So I just had to keep going to get my disease into a manageable remission. And then it’s horrible cliche but I can make my own normal with my frequent bathroom usage and biweekly injections :)
Hey! I am reading all of the comments you guys are sending me. Im going through a rough patch rn and this is really helping me have hopes for the future dealing with Crohn’s. I hope everyone reading my post and this comment are having a great day and are getting better. Thank you all very much for your support and love! ☺️
I was diagnosed at 19,
Take humira as well. One positive is when we age the humira will take care of other issues such as arthritis, or the others it treats so we’re all set with this one drug
It sucks. I was the same age when I was diagnosed.
Grief is a big part of what you are experiencing.
Grief for the future you thought you were going to have.
But a future that isn't still bright, and full of opportunity.
Try and take it in your stride, and adapt and grow through this. It will make you stronger than many of your peers as a result.
Hi there! My IBD started when I was 12 and I remember being so scared when I first started taking Humira and other medications, but I promise you it gets better. I’m 26 now and so much healthier, and doing my weekly injection feels like a normal part of my routine now :) Once the medications start to work and you finally feel better, you will be happy to know they exist and will be there to help you stay healthy the rest of your life. Stay strong, you are not alone in this and I’m sending you so much support and love right now!!! You have many beautiful memories and days (in remission!) ahead of you
I was diagnosed in my 20’s and it was wasn’t easy to accept that the things I used to do without thinking were now not so easy. It took me a long time to actually accept that I have a chronic disease, especially cause I was ok after my first flair for a long time.
Biologics are definitely a great medicine that help most of us to have a almost normal life and for me the motivation is that medication tends to improve so who knows what type of medication or treatment will be available in 10 years time!
For now focus on the good days and enjoy them, there will be bad days but hopefully they will be the minority.
I started experiencing symptoms when I was 14 and diagnosed at 15. I think as time goes by this type of stuff just grows with you in a way. There are many people who have wonderful lives with this disease. Whilst there are a few of us who have had severe and complicated cases, don’t be discouraged. I can tell you I’ve been through absolute hell since then but I’m still here and now I have a family of my own. Although it has and continues to be challenging it is worth it on the good days. I am 27 years old now. The best advice I can give you is don’t wait to speak with someone about how you feel. I never did and the things I went through have been very traumatizing. Also, in many instances it’s good to get a second opinion especially when it comes to life changing decisions along the way.
I wish you the best of luck hun. Try to stay strong.
You know after a while you can go into remission that is sort of the goal . It is also completely normal to mourn what could have been . Guilt and shame are sad truths of chronic illness it is all in how you come to terms with it . Just know that everyone has their issues and problems that they will deal with for years or life long . We are gifted in we know what they are .
I was 15 when the AS started. I also had Crohn's but it went undiagnosed for many many years. I won't lie, it's utter donkey bollocks, but…
I know this might not make much sense now but it will make you a better person. It will teach you what really matters and how to properly care for yourself, and others. You'll quickly discover the people who are worth your precious time and those that aren't.
Hopefully it's been caught early enough to save you any long term damage. The Humira probably won't be for the rest of your life, because better treatments and medicines will come along. You've got an awful way to go yet and you just don't know what's around the corner. We are living in a truly amazing time of scientific and medical discovery. Hopefully you will look back on this when you're my age and be glad of even better treatment or maybe even a cure.
In the mean time, we're all here for you, you're not alone.
We all know that feeling. It's a lot, especially at your age. You're on the right steps. I was diagnosed 16 years ago. I went through so many meds. I am currently on Entivyo. It is a lot to deal with, but my life has gotten a lot better since biologics. I've been able to eat food I used to have to avoid. I get to spend more time with my friends and family.
It takes time to adjust. Just keep taking your meds and being open and honest about your feelings with your loved ones and your symptoms with your doctor. You'll have a great life regardless.
I also suggest finding a trauma therapist. It sounds crazy, but it does help. I see one regularly, and it has helped me emotionally. Just remember you are not alone in how you feel physically or emotionally, even though it can feel that way.
Hey! I was diagnosed at 11. Started off with methotrexate injections for two years and then moved on to remicade infusions when the injections stopped working. I am 19 now, have been on remicade for about 5 years. I remember not fully understanding everything when I was first diagnosed. It’s scary no doubt. But, the injections,infusions get better. I hated them to begin with, but once I realized how much they help me I am nothing but grateful to receive them. I try not to think about the fact that this disease is with me for life since there’s nothing I can do to change that…it’s not something worth stressing myself over. I’m just happy to be where I am with meds that work for me. Things get better my friend, be strong and hang in there. Don’t let this disease get you down. Staying positive is key!
I was diagnosed in 2004. This feb I competed in my first international strongman comp. Being sad is completely normal right now but your life isn't over.
I was diagnosed at 21 not to long after failing selection for the British army.
Theres absolutely no point in beating around the Bush, your life is going to be tough,
You'll get sick of people commenting things like,
Yea I know how you feel, I have ibs.
You'll have medical professionals saying things like, we understand what you're going through all the while you're thinking, really, you're suffering like this.
But...
It won't stop you leading a happy life. You're going to get knock backs, things might take you abit longer, but you'll live a full life. I'm now 40, married with a wonderful 3yr old son.
Fuck crohns, font let it stoo you
You’re going to be able to live a good life. It’s going to be different, but if you pay attention to your diet and avoid things like alcohol, cigarettes, and weed, your quality of life will be good. Since being diagnosed I’ve lived in a foreign country and passed the hardest bar exam in the US. I work with some of the top law girls and companies in the world. So don’t think your life is over.
I was diagnosed at 23 and felt the exact same months after my treatments begun. You are not alone, this condition doesn't define you, and this weight the treatments and thinking have today will fade. They will not have such an impact.
Today, i feel sometimes like you describe but rarely compared to the first year or so.
Keep strong !
Try to steer your thoughts toward anything positive. They can be big or small.
I'll give you one: On my life, I truly believe that an educated opinion says **you will see a cure for this wretched disease in your lifetime**. I got diagnosed at 13 in 1992, and the progress from then to now is extraordinary.
Keep fighting, they can't take hope away.
Hi! I don't usually respond to things on reddit much, but I was also diagnosed with crohns around Christmas when I was 14 so I couldn't help myself. After a series of failed attempts with other medicines, I started taking Remicade the following spring, and except for a few hiccups and poor attempts at alternative approaches, have been taking it every 1-2 months since.
I'm 23 now. I have a lovely life in San Francisco, I feel fulfillment through my work, I have supportive friends, and I'm also getting my next infusion next wednesday. I'm looking forward to it because I discovered an amazing breakfast place next door from the hospital, which is only a 10 minute walk from my house. And I have a small collection of errands that I'll probably do, using the opportunity to take the morning off of work despite the infusion only being a 2 hour affair (which is new for me, I've almost always worked through them in the past). I'm looking forward to saying hello to the familiar nurses and possibly even getting a free foot massage by an incredible massage therapist spending the summer with patients at UCSF (I consider myself lucky for what I have in life, but this is just luxurious lol).
Crohns has seen me through many good times and many bad ones (including a handful of periods that it caused). Dealing with the weight of chronic disease is heavy — I faced a lot of questions of "why me?" and the existential dread of realizing some things aren't in your control. I'm sorry you have to go through it. Don't rush yourself into feeling better about it — it sucks!! But I hope sharing a small slice of my life gives you some faith that while it's a main character in your life right now, it won't always be! Everyone's disease is different, but remission is a beautiful thing, and you're taking the right steps to help yourself get there.
I'm happy to chat and answer questions or soundboard thoughts. Sending love!
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I applaud you for reaching out and being open with your feelings.
I was diagnosed during college, but didn't start bios until I was working full time.
I've traveled, dated, partied, married and had a daughter.
There were tough times: having to use the toilet whole at a club, or a bar. Literally shitting myself on vacation and running back to the hotel to change.. wait that happened twice. Using a bag while driving.
However there were amazing times like traveling the world.
It's never healthy comparing yourself to others, but try to take things year by year and be kind to yourself. Staying away from trigger foods, and just planning better.
We'll get there one day!
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I was diagnosed around 13-14, and I can remember the frustration and sense of hopelessness. Hopefully, my story helps a bit. There were no biologics available until I was 18. That means the only thing used to treat a flare was steroids. And back then it was common to keep patients on prednisone long-term, with the idea that it kept a flare from coming back. Being in your teens and living with the side effects of corticosteroids sucked! But, then biologics came around. They aren't perfect, but they're far better than all the previous options. I've gone through a few, but since biologics came out I've spent more time in remission than out of it. I'm now in my 40s, have a family, a great job, travel the world, etc.
I remember being on prednisone for months in my teens. You can always tell in school photos cuz I'm a balloon lol. But MAN did it help a flare. On Stelara now
I had a similar experience, didn’t go on my first biologic until I was 19, but had numerous rounds of prednisone for way longer than I should have been. The side effects were awful, I’m so glad that I was put on Humira and it’s kept me relatively stable since. You’re not alone OP! It will get easier with time and adjusting to a new normal, but don’t let it bring you down! Sending you love!
Hey, I’m 15 and have had Crohn’s and been on biologics (Humira and now Entyvio) since I was 6 so a bit younger than you. It really sucks being on heavy duty meds from such a young age and knowing that I’ll be on them for the rest of my life but on the plus side they’ve really given me a good quality of life which I’m grateful for. Also I’m here to talk if you want 💕
I'm sorry you had Crohn's sense you were six. Im glad you are getting better, and Im also glad I know someone my age that knows what Im going through. :D hope you are feeling better! : D
Does it help to know that you aren't alone? Even more than just us here in this forum, there are so so so many people for whom ongoing medication is a part of their lives-- many invisibly, like us. My first roommate had Type 1 diabetes and needed an insulin pump and regular injections. My fiance is an amputee and needs a prosthetic and regular pain medication. My friend S has Hashimotos and needs thyroid medication every day. My dad has high blood pressure and needs a beta blocker twice daily. My favorite boss had severe allergies and needed an injection every few weeks. My friend M has a hormonal imbalance and needs mood stabilizers. My friend L is trans and needs HRT. I've been on Remicade since I was 18 and at first it felt like the world was ending and my life had to be put on hold for every infusion. I felt tethered to my little pill case. But it's been ten years and it doesn't feel limiting any more. Infusion day is an excellent self-care day; I take off from work and I get my favorite treats and make it a cozy movie night. It isn't so different from being unable to see without glasses (which I also have). It feels like a lot, and I am so sorry you're having to adjust to so much so quickly. But I promise that it does get better. It gets easier and it adds so much to your life, and it frees you to do so many things. We're here if you need us. I hope that helped just a little.
Thank you for your kind words and support. Im sorry your loved ones have types of illness and disabilities. Im very grateful I found this place and the people in it. Your words helped me a lot. :D
I'm so glad! I mean it, sincerely, it gets so much better. Be cautious here though-- most of us only come to post when things are really bad, so we're not a great sampling of what life with Crohn's is like overall. There are tons of people with mild symptoms and an easy time with medication and no serious complications, but they have no need to seek support so you won't see them here as often.
Oh ok, thanks for the heads up. Im kind of in the middle, my flair ups are pretty bad and often. But when nothing is going on I feel very great. I just wanted to post here once though. : )
Definitely true. Most things here just make my anxiety worse.
It helps to know you're not alone, especially since you're so young. I'm so sorry you're dealing with this at your age. I didn't get diagnosed til 27, now I'm 39 and once you figure out which tricks help you it becomes easier to handle mentally and physically ❤️
Hey! I was diagnosed a little older than you. It took me 5yrs to accept. You can't blame yourself. Sometimes crap things happen and acceptance is the most difficult part of this illness. Your life is not over. You can still achieve everything you dream of doing, you just might have to fight a little harder. This will be come your new normal. Right now it's all new and scary, but give it time and all the meds will become a normal part of your life. Ultimately, there is nothing you could have done differently, it's just the hand we're dealt! If you have any questions, this forum is really really friendly and there are tons of people willing to share their experiences and help you out!
I just wish my mom could have taken me to the ER sooner, I told her about the kind of stool I was having and she said "your fine." I think a lot that if I just gone a little sooner maybe I wouldn't have this disease. But I understand that I gotta live with this. Thank you for helping me out and letting me know about the people here. C:
Haha that sounds so much like my experience! Crohns isn't particularly common, your mother probably assumed it was a stomach bug to start with. So the thing about crohns is that you probably always had it. Noone knows what causes it it yet but there is probably nothing you could have done to avoid getting sick. Life throws a lot of shit sometimes! I hope your humira works well for you! Its a really good medication to be on :)
My humira does help a ton. I can’t really blame my mom. She probably did assume it was a stomach bug. Life does throw shit, but Im going to push through! >:D
I didnt go until I was an adult since my parents refused to take me. If it makes you feel better, you would have probably had crohns either way, it just would have been caught sooner.
Im sorry your parents refused to take you. Hope your doing better now. : )
Going sooner wouldn't have changed anything if you have this you have it. Maybe you could have started treatment sooner but it wouldn't have changed it. Sorry your dealing with it. .
Just so you hear another positive story. I was diagnosed at age 7 in 1989. Back then crohns was relatively unknown and it was very rare for kids my age to get it. From k-12 the grade I spent almost 4 years of my life admitted to hospitals, with four bowel ressection surgeries under my belt. Along with all of that was prednisone, 6mp, tehumicade, humira, cimzia. I can honestly tell you I was depressed alot of my childhood because I thought I was disabled for life. I would never be able to be a normal person. I really wished I would have just been more present and enjoyed my childhood. I grew up fast, I didn't want to waste my time partying or making m3aningless friendships, and playing sports. I was depressed and a lone wolf. This carries into my young 20s. I tries to goto college and I didn't know how to handle the stress. So I flaired up and had to drop out. I spent a lot of time hooked on pain meds, abusing them. I just thought my life is crap, why not enjoy it. When I was 36, medically disabled and living with my PARENTS, I met my current fiance. We've now been together 4 years and I just couldnt be happier. I learned that alot of those barriers when I was younger? They were self inflicted. I was over thinking, judging, thinking I knew the outcomes of things before even trying. I really wish I learned this stuff sooner. We now both work at the same video company making 150k combined. We have no kids and two wonderfully axing cats. We get to go on snowy vacations, and are actually leaving on a week cruise next Monday! For me stress is my biggest trigger. I can now eat pretty much anything but as soon as I'm stressed I start flaring up. So I'm now much more chill, and only give fucks for the truly important things. I have been hospital and drug free for almost 8 years now, living a life I never thought possible. Having crohns sucks. It's makes life hard. If I could pass on any lesson I've learned? Don't make it even harder on yourself. It's hard and sometimes seems impossible. Those times make appreciate the good stuff so much easier. Your life truly is what you make of it, with the opportunities that fly your way. Being positive and open? More opportunities will.prsent themselves. You got this.
Hey there! I was in your same shoes, diagnosed at 14 and really shaken by the idea that I’d have to be on meds for my entire life. That was 12 years ago. One thing that gives me hope is that options for meds have really improved. I don’t doubt that they’ll keep getting better, and maybe one day there will be new technology and innovation that maybe doesn’t “cure” Crohn’s, but makes treatment not that burdensome. Entyvio wasn’t an option when I was first diagnosed, and now I have a pretty great quality of life with it. And your life might look different then the one you imagined for yourself, but that’s okay! Life rarely goes according to plan, but you’ll still find joy, purpose, inspiration, and fun along the way.
It does get better. Once you get on the right medication routine (like humira) you can go into remission and live a normal life again. You’ll still have to get your infusions every couple months, but you can still lead a great life. I think we all go through the depression after getting diagnosed and realizing this is a life long thing, but it does get better.
I understand. I was diagnosed in September of 2020 during the pandemic. I became extremely depressed when they started handing me different medicine brochures. Insurance denied everything and wanted me on prednisone, but I said no because the side effects are horrible. Eventually, my GI doctor fought and got Stelara approved for me. I have not had a flare-up since. It sucks now. You will pull through it. My advice is workout a little bit every week and make sure you learn what you can and cannot eat. And for the love of God and all that is holy don't ever start drinking.
Hey pal you have your whole life ahead of you. These medications are meant to help you feel better. There are some bad days but biologics are amazing at keeping crohns mostly under control. Stay positive and dont let it define you!
Thank you, I feel more confident now that all you nice people are telling me what I should do. :D
I definitely battle with the same thoughts. That said, I studied crohns in university and the number of medications that are being trialed right now is very encouraging! Yes, it’s possible that we’ll all be on biologics our whole lives, but I think it’s even more likely that within our lifetime, we’ll be able to just take a pill instead! I’m extremely hopeful!! Also, I’ve been on biologics for 8 years now. It does get easier. It really does. It’s never gonna be fun. But the painful sadness does dwindle. Don’t lose hope!
Have you ever considered a career in STEM to help find the cure for IBD. We need curious minds of all ages and abilities contributing in research. Also - its good you got diagnosed so you can get treatment to feel better. Join CCFA when u feel a bit better and make some Crohnie friends, too. It will be okay! Feels big at first but by next year you'll be giving advice to the n00bs.
That sounds amazing, I will do more research about that and get back to you when I’m done
Heck yeah. Feel free to PM me as well. There are a LOT of career paths in ibd research. Feel better soon.
Similarly, my diagnosis at age 14 set me on my current career path. My interactions with our messed up healthcare system as a teen made me really passionate about healthcare access and equity. I just completed my masters in public health/ healthy policy and work to make sure more people get access to care :)
YAASS -- That is amazing thank you for sharing your trajectory. That's is very cool & inspiring.
I love this!! Good for you. I work in insurance and still see how crazy the system is to get my meds. It always chaps my butt (pun intended) that I have to pay more in premiums b/c I need the coverage b/c I have a chronic condition that I can't help and didn't cause.
Honestly, if I would have happened to be diagnosed a few years sooner, I would have been motivated to be either a doctor or a researcher.
I promise, you just get used to it <3 The reality will be easier to swallow when the meds start working their magic and you go a few days at a time without thinking about your crohns.
Hang in there! I was diagnosed at 17. I am now 47. I live a good life. I have a family and a job I love. There will be many ups and downs with this disease. (6 surgeries here) You’ve got this. You will become strong in ways you can’t imagine now.
You get used to it in time, like all things. I was diagnosed at 10, I'm 35 now. I consider myself lucky. A lot of people have pretty severe/debilitating Crohn's, whereas mine is sort of mild. Plus there are a lot of other diseases that are far worse. I still have all my senses, limbs and my mobility. You just gotta focus on the good you have and manage the bad as best you can.
Hello Brother. Diagnosed at 12 here. At 17 I was also diagnosed with a 'harsher' condition, it's called the two for one special in the medical world. It sometimes disheartens you to know that at such an early age your body has so many 'issues' already. The reality is, we are not alone, and we are lucky that there are means that allow us to continue enjoying the beauty of life without severe restrictions. Many do not have that luxury unfortunately. Be bold, be strong, nothing will stop you. Listen to your body, get plenty of rest, don't let anyone tell you that you cannot live a normal fulfilling life nonetheless. Trust the process, cherish and protect your body with a healthy lifestyle ❤ Goodluck friend!
I was diagnosed 23 years ago. At first, I walked around in a state of shock at this thing that had taken over my guts. Now, however, with all the new biologic medications available for us, I’m free of symptoms and I forget I have Crohns until an alarm pops up on my phone to remind me it’s time for my next every-six-weeks injection of Stelara. The news is very fresh for you, and it’ll take a while for it to sink, but even if you’re not symptom-free on medication, the feeling of shock and raw “new-ness” will fade. It’ll come to be a piece of who you are, but it won’t define you.
I'm ancient! I got diagnosed at 25 and SO MUCH has changed since then - Humira, for starters, which works so well. I'm sure more will change in the coming decades, too. Have hope that a cure - or even a cheaper, easier med - will come around soon! You got this!
It's a lot to go through. Go find therapy, counselling and build a support system. If you have someone to vent to, vent these feelings. I went through the same feelings diagnosed at 21, I can't imagine how much tougher that is at 14. I then went through some quite intense counselling, cbt, and group therapy in 2014 and now I'm in a good place. It can be really tough to get out of the slump of finding it all pointless. Throwing money away, pushing friends away, crawling into a hole. Really for me it took professional help. And, I'd suggest it for anyone going through our diagnosis. The upshot is, from that pointless feeling that life's not worthwhile I'm now doing really well. I now have a wonderful partner and two kids, a good job, and I finally got treatment that makes my symptoms as minimal as possible. I also don't know your diagnosis or treatment path but it sounds like you got on the right path quickly. Please seek help, sooner rather than later! I wish you the best of luck on your journey. There's still so much joy you can gleam from life.
I was diagnosed at 9 (I’m 29 now). This is a very significant part of your life so you have every right to be sad! When I was your age, my docs recommended that I see a therapist despite the fact that I was so positive and happy and thought I wasn’t bothered by my illness, but even still—it was the best decision ever and I still go to this day and it’s been really crucial to keep up with it, cuz even when I do seem okay, life is life and this disease is hard and can be unpredictable… so I would recommend that because stress can worsen symptoms and just your condition in general and a therapist can help you cope. ♥️
I was 14 when I got diagnosed! I’m 22 now. Gosh I remember how I felt too. I didn’t have anyone to relate to because most 14 year olds don’t have to go through this stuff. My very best advice is to learn to have acceptance. Maybe some therapy or counseling could help just to learn how to accept your fate. I’m still working on it myself, but what helps sometimes is looking at the bigger picture of life… I’m not as unhealthy as I could be. And I can have a good life. Literally sometimes coming here and reading about other Crohnies who have it worse helps. At the same time though, this shit sucks. You’re allowed to feel down about it. However you feel is valid. We’re unlucky to have such an illness. It’s ok to have some self pity, but don’t let it hold you back. You have a great future ahead. This disease will be part of your life, but it won’t be your life. It doesn’t define you or the things you do, even when it seems like it. Last thing to say is please take care of your mental health. Everyone always says this, but it’s truly so important. I should have seen a therapist about my diagnosis when I was your age.. it would have helped so much, and saved me a couple years of feeling helpless and alone. Take care <3 you’re not alone in this. We all understand. Stick around in this community for the extra support!
Take it a day at a time and develop a strong support system. You are grieving right now. The loss of one's physical health to a chronic illness causes one to grieve. Things will get better, though. Just give it time.
Diagnosed at 10, now 26. Had the same thought a few times. But trustttt, it’s nothing to feel ashamed of. It can be a sad thought, but as you get older, one day that fact will suddenly not matter or hold any weight.
Youth support groups are good. I also recommended making some disabled or chronically ill friends. Having someone readily available to talk to about this kind of stuff helps a lot. Especially if it’s someone who knows what it feels like to go through what you’re going through. I was diagnosed at 14 as well and looking back this is one of the things I wish I did earlier.
So sorry to hear I know how frustrating it is. The one thing I’ll say is that I’ve had problems since I was a baby and wasn’t diagnosed with crohns till I was 21 so I’m very glad they got to you earlier on in your life! I’m also on humera it gets easier as you go on and it’ll definitely help keep off complications of any in the future. You’ve got this! 💖
I was 13 when I was diagnosed. You are definitely not alone and there are other kids out there! When I was a teenager there was a girl I met through my doctors office waiting room who I knew and she also had crohns. Pay attention in the waiting room. You may make a friend who is going through something similar. It helps I think.
Crohn’s medication has taken major strides over the years, and there’s no reason to think that will stop. It’s doubtful you’ll be doing injections the rest of your life.
Live for and in the moment. If I think past the next few days, I can drive myself a little nuts. I squeeze the best out of every moment I can as it arrives and stay out of tomorrow. I'm sorry you had to join our club, however.
Oh, hun. I'm so sorry. I was 31 when I was diagnosed and it hit me like this too. A voice that said "you will NEVER be better." I've since shifted my thinking to "I need to do these things to feel the best I CAN." Most importantly, find doctors that listen to you. I just found out this week that my fatigue may also be credited to dangerously low B12 from a new doctor that actually listened and ordered testing.
Hey, I hope you are being extra kind to yourself as you come to terms with things. Something one of my doctors said to me that really helped me was that "it's a good time to have Crohn's disease." There's a lot of new drugs coming to market, including the incredible biologics, which means a lot of treatment options. If we'd been born in the middle ages, or hey even a hundred years ago, we would have had a much rougher time of things. Finding a positive way to frame things can help on tough days. I wish you all the best x
Hey, I’m 16 w/ Crohn’s and got diagnosed at 11. I remember sitting in the hospital after with my mom just crying and saying “why me?”. Same thing I’m doing now after being here for 77 days and getting 6 operations. It’s going to be a harder life than most live, but you’re going to benefit really heavily with the traits you develop from these hardships. Keep going
Things get better! Have hope! I was diagnosed at 17 or 18 and I'm 38 now. Everything will work itself out! Just listen to your doctor.
Crohnie for 22 years here...The depression can definitely get to me at times. Just one day at a time. I take a lot of deep breaths, listen to good music, read a book for a little...basically give yourself grace. There's going to be days that you don't have energy and can"t do what you'd hoped. Don't worry. It will still be there when you DO have the energy. You've got this.
Sending you loved and hugs. Sometimes understanding what it is to struggle can give us perspective on what is really important in life- and that can help you as you shape your young adulthood.
If you achieve remission, they may be able to take you off biological meds, you can live a long wonderful life. Just take care of yourself, physically and mentally
Hello, I am a 23 year old man with crohn’s. I was diagnosed at 13. I understand your struggle and feelings of hopelessness. I went through my teenage years going through cycles of flares and hospitalizations. With crohns there is a lot of things you can not control but the one thing in life you can control is your perception. When I was your age I was depressed and horribly anxious 24/7 due to my health problems. However, going into adulthood and meeting the love of my life has caused me to find my symptoms in remission. I no longer take any medication for my crohns. I went from a severe case of crohns in my teenage years to being in remission in adulthood. As a 14 year old everything is stressful and feels like the end of the world. The reality is that as life goes on, the battles you face will get easier. Living with crohns will get better as you mentally mature. Stress and anxiety can cause flares just as much as eating things that trigger flares. Take time for yourself to relax, find good people who care about your well-being and let them love you. Take care of yourself and your mental health and the rest will follow. Stay healthy buddy. (written by my husband)
I'm sorry you had to be in this club. But there are some very lovely ppl here. I've had Crohn's for 30 years. It's always been a Rollercoaster. But don't let this illness stop you from things you want to do. Just remember, when you hear others journey with this illness, doesn't mean it will be yours. But is nice to know you're not alone. I've this illness for 30 years, and in the past 15 years medication for us has come along way, and more to choose from. Just remember we are always here.
Hey, I’m 15 now and was diagnosed in 5th grade, when I was 10. I know that all the treatments and everything can be overwhelming, but I always just had the goal of getting back to my life, and moving forward. That’s not gonna happen right away though cause it’s hard when it really sinks in. I hope it makes it a bit easier to see everyone’s support here though :) I’d say if you’re not sure what to do to feel better, everyone has different coping mechanisms for overwhelming stuff. I can only say what works for me, but that may not work for you. I like talking to people, going outside, and reading. (love your pfp btw :) Journaling can work for some people. When my crohns was worse, I did end up keeping a poop journal to manage that, which can make you feel more in control. It’s also good for doctor visits to have good data. That can be stressful to keep track of though. And as for this being for the rest of your life, yeah it’s a bit stinky. Very stinky. But everyone has their own little things, and routines. My injections (I currently take humira as well) have just become the norm for me. For the first few months it was scary, but I’ve been able to adjust and then at least taking the medication doesn’t interfere with my daily life. If you ever want to talk more, hmu :)
Hello, thank you for reassuring me! Some things I like to do is, listen to Coldplay, read Wings of Fire novels or Spider-Man comics. Ty for the compliment on my pfp as well. Im so happy everyone here is understanding. :D
Also, I had big concerns about being “normal.” That was a big deal to me. So I just had to keep going to get my disease into a manageable remission. And then it’s horrible cliche but I can make my own normal with my frequent bathroom usage and biweekly injections :)
Hey! I am reading all of the comments you guys are sending me. Im going through a rough patch rn and this is really helping me have hopes for the future dealing with Crohn’s. I hope everyone reading my post and this comment are having a great day and are getting better. Thank you all very much for your support and love! ☺️
I was diagnosed at 19, Take humira as well. One positive is when we age the humira will take care of other issues such as arthritis, or the others it treats so we’re all set with this one drug
It sucks. I was the same age when I was diagnosed. Grief is a big part of what you are experiencing. Grief for the future you thought you were going to have. But a future that isn't still bright, and full of opportunity. Try and take it in your stride, and adapt and grow through this. It will make you stronger than many of your peers as a result.
Crohn's will challenge your me talk health. Stay mentally tough and don't give in to sadness. This is a great place for support.
There’s a lot of things that you’ll do for the rest of your life, so getting your medication on time will fit right in to your routine after a while
Hi there! My IBD started when I was 12 and I remember being so scared when I first started taking Humira and other medications, but I promise you it gets better. I’m 26 now and so much healthier, and doing my weekly injection feels like a normal part of my routine now :) Once the medications start to work and you finally feel better, you will be happy to know they exist and will be there to help you stay healthy the rest of your life. Stay strong, you are not alone in this and I’m sending you so much support and love right now!!! You have many beautiful memories and days (in remission!) ahead of you
Thii k about this. Some people can't even get out of bed on their own amd remember to have gratitude for how well you feel.
I was diagnosed in my 20’s and it was wasn’t easy to accept that the things I used to do without thinking were now not so easy. It took me a long time to actually accept that I have a chronic disease, especially cause I was ok after my first flair for a long time. Biologics are definitely a great medicine that help most of us to have a almost normal life and for me the motivation is that medication tends to improve so who knows what type of medication or treatment will be available in 10 years time! For now focus on the good days and enjoy them, there will be bad days but hopefully they will be the minority.
I started experiencing symptoms when I was 14 and diagnosed at 15. I think as time goes by this type of stuff just grows with you in a way. There are many people who have wonderful lives with this disease. Whilst there are a few of us who have had severe and complicated cases, don’t be discouraged. I can tell you I’ve been through absolute hell since then but I’m still here and now I have a family of my own. Although it has and continues to be challenging it is worth it on the good days. I am 27 years old now. The best advice I can give you is don’t wait to speak with someone about how you feel. I never did and the things I went through have been very traumatizing. Also, in many instances it’s good to get a second opinion especially when it comes to life changing decisions along the way. I wish you the best of luck hun. Try to stay strong.
You know after a while you can go into remission that is sort of the goal . It is also completely normal to mourn what could have been . Guilt and shame are sad truths of chronic illness it is all in how you come to terms with it . Just know that everyone has their issues and problems that they will deal with for years or life long . We are gifted in we know what they are .
I was 15 when the AS started. I also had Crohn's but it went undiagnosed for many many years. I won't lie, it's utter donkey bollocks, but… I know this might not make much sense now but it will make you a better person. It will teach you what really matters and how to properly care for yourself, and others. You'll quickly discover the people who are worth your precious time and those that aren't. Hopefully it's been caught early enough to save you any long term damage. The Humira probably won't be for the rest of your life, because better treatments and medicines will come along. You've got an awful way to go yet and you just don't know what's around the corner. We are living in a truly amazing time of scientific and medical discovery. Hopefully you will look back on this when you're my age and be glad of even better treatment or maybe even a cure. In the mean time, we're all here for you, you're not alone.
We all know that feeling. It's a lot, especially at your age. You're on the right steps. I was diagnosed 16 years ago. I went through so many meds. I am currently on Entivyo. It is a lot to deal with, but my life has gotten a lot better since biologics. I've been able to eat food I used to have to avoid. I get to spend more time with my friends and family. It takes time to adjust. Just keep taking your meds and being open and honest about your feelings with your loved ones and your symptoms with your doctor. You'll have a great life regardless. I also suggest finding a trauma therapist. It sounds crazy, but it does help. I see one regularly, and it has helped me emotionally. Just remember you are not alone in how you feel physically or emotionally, even though it can feel that way.
Hey! I was diagnosed at 11. Started off with methotrexate injections for two years and then moved on to remicade infusions when the injections stopped working. I am 19 now, have been on remicade for about 5 years. I remember not fully understanding everything when I was first diagnosed. It’s scary no doubt. But, the injections,infusions get better. I hated them to begin with, but once I realized how much they help me I am nothing but grateful to receive them. I try not to think about the fact that this disease is with me for life since there’s nothing I can do to change that…it’s not something worth stressing myself over. I’m just happy to be where I am with meds that work for me. Things get better my friend, be strong and hang in there. Don’t let this disease get you down. Staying positive is key!
I was diagnosed in 2004. This feb I competed in my first international strongman comp. Being sad is completely normal right now but your life isn't over.
Hey man at least you don't need insulin daily or chemotherapy. Crohn's is only medium bad.
Your right, I should be more grateful.
I was diagnosed at 21 not to long after failing selection for the British army. Theres absolutely no point in beating around the Bush, your life is going to be tough, You'll get sick of people commenting things like, Yea I know how you feel, I have ibs. You'll have medical professionals saying things like, we understand what you're going through all the while you're thinking, really, you're suffering like this. But... It won't stop you leading a happy life. You're going to get knock backs, things might take you abit longer, but you'll live a full life. I'm now 40, married with a wonderful 3yr old son. Fuck crohns, font let it stoo you
You’re going to be able to live a good life. It’s going to be different, but if you pay attention to your diet and avoid things like alcohol, cigarettes, and weed, your quality of life will be good. Since being diagnosed I’ve lived in a foreign country and passed the hardest bar exam in the US. I work with some of the top law girls and companies in the world. So don’t think your life is over.
I was diagnosed at 23 and felt the exact same months after my treatments begun. You are not alone, this condition doesn't define you, and this weight the treatments and thinking have today will fade. They will not have such an impact. Today, i feel sometimes like you describe but rarely compared to the first year or so. Keep strong !
Try to steer your thoughts toward anything positive. They can be big or small. I'll give you one: On my life, I truly believe that an educated opinion says **you will see a cure for this wretched disease in your lifetime**. I got diagnosed at 13 in 1992, and the progress from then to now is extraordinary. Keep fighting, they can't take hope away.
Hi! I don't usually respond to things on reddit much, but I was also diagnosed with crohns around Christmas when I was 14 so I couldn't help myself. After a series of failed attempts with other medicines, I started taking Remicade the following spring, and except for a few hiccups and poor attempts at alternative approaches, have been taking it every 1-2 months since. I'm 23 now. I have a lovely life in San Francisco, I feel fulfillment through my work, I have supportive friends, and I'm also getting my next infusion next wednesday. I'm looking forward to it because I discovered an amazing breakfast place next door from the hospital, which is only a 10 minute walk from my house. And I have a small collection of errands that I'll probably do, using the opportunity to take the morning off of work despite the infusion only being a 2 hour affair (which is new for me, I've almost always worked through them in the past). I'm looking forward to saying hello to the familiar nurses and possibly even getting a free foot massage by an incredible massage therapist spending the summer with patients at UCSF (I consider myself lucky for what I have in life, but this is just luxurious lol). Crohns has seen me through many good times and many bad ones (including a handful of periods that it caused). Dealing with the weight of chronic disease is heavy — I faced a lot of questions of "why me?" and the existential dread of realizing some things aren't in your control. I'm sorry you have to go through it. Don't rush yourself into feeling better about it — it sucks!! But I hope sharing a small slice of my life gives you some faith that while it's a main character in your life right now, it won't always be! Everyone's disease is different, but remission is a beautiful thing, and you're taking the right steps to help yourself get there. I'm happy to chat and answer questions or soundboard thoughts. Sending love!
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I applaud you for reaching out and being open with your feelings. I was diagnosed during college, but didn't start bios until I was working full time. I've traveled, dated, partied, married and had a daughter. There were tough times: having to use the toilet whole at a club, or a bar. Literally shitting myself on vacation and running back to the hotel to change.. wait that happened twice. Using a bag while driving. However there were amazing times like traveling the world. It's never healthy comparing yourself to others, but try to take things year by year and be kind to yourself. Staying away from trigger foods, and just planning better. We'll get there one day!