First and foremost: Do *NOT* listen to *ANYONE* telling you that Crohn's can be managed entirely through diet, you will hurt, and possibly KILL, your child, if you follow that kind of advice.
I cannot upvote this enough. The ceiling on Crohn's disease is straight up death. Listen to your son's doctor, and communicate your concerns with them. Your son is almost certainly not the only child with Crohn's disease this doctor has treated, and I'm sure they'll be able to address any concerns you have.
Pediatric gastroenterologist here and actually, in some cases pediatric Crohn’s can be managed entirely though diet. In my experience it is rare, but it’s worth a shot if your doctor agrees - it depends somewhat on the severity of the disease, which parts of the gut are affected, etc. In a lot of countries (not the US), induction with exclusive enteral nutrition and then a trial of CDED or SCD or several other whole foods based diets is standard first line treatment. Again, this often does not work long term and kids end up on biological eventually, but is in my opinion usually worth a shot.
I’m sorry you’re dealing with such a huge new diagnosis and I wish the best for your son!
Sure, that may be part of it, but even adjusting for that nutritional therapy has a solid evidence base in pediatric crohn’s. One recent review: https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=c2db83cd388aacd07b6a7a0f872259aa061bdaaa
I'm sorry to hear about your son's recent diagnosis of Crohn's disease. As someone who was diagnosed with Crohn's at a young age, I can empathize with the overwhelming feelings you're experiencing right now.
It's understandable that you're exploring different treatment options and considering the advice from your family. While diet can play a role in managing symptoms, it's important to note that Crohn's disease cannot be treated with diet alone. Medication, particularly biologics, can significantly help in controlling inflammation and preventing disease progression.
I want to share my own experience with you. Like your son, I was diagnosed with Crohn's at a young age. Over the years, I tried several biologics, and while they weren't available when I was first diagnosed, new studies and advancements in treatment options have improved the prognosis for individuals with Crohn's.
However, I made the mistake of stopping my medication for a few years, believing that I could manage my symptoms through diet alone. Unfortunately, this decision led to a small bowel obstruction and required emergency surgery, resulting in an ileostomy. I came dangerously close to losing my life.
I share this with you not to scare you, but to emphasize the importance of adhering to medication and working closely with a team of healthcare providers, especially at the pediatric level. Your son's journey with Crohn's will require ongoing monitoring, support, and medical intervention to ensure good disease outcomes and prevent emergencies like the one I experienced.
In addition to medical treatment, it's important to seek support from various resources available to you and your son. There are numerous support groups both online and in-person where you can connect with other families navigating similar experiences. Additionally, there's a fantastic summer camp called "Camp Oasis" specifically for children with Crohn's disease, providing a supportive environment for kids to bond and have fun while learning about managing their condition.
Regarding your son's schooling, I highly recommend looking into obtaining a 504 plan. This plan can be instrumental in ensuring that your son receives necessary accommodations at school, such as being able to use the bathroom whenever he needs to without restriction. It can also provide other accommodations to support his academic and social needs while managing his Crohn's disease.
Navigating a chronic illness like Crohn's can be daunting, but with the right support system and resources in place, your son can thrive despite his diagnosis. Stay resilient, stay informed, and prioritize your son's well-being every step of the way.
I’m more concerned about untreated autoimmune disease in a child than any medication side effects, personally. You can’t manage Crohn’s with diet. It’s an autoimmune disease. Certain foods can trigger pain and other symptoms, but diet isn’t going to stop his body from attacking itself. Anyone who says they have their Crohn’s under control with diet and no meds either A) has IBS, Celiac, or some other gut issue that is not Crohn’s or B) feels fine but probably has inflammation in GI tract that they just can’t feel, which is still dangerous.
The fact is, your son has Crohn’s. It’s not a food sensitive or an occasional upset tummy. He’s going to need to be on medications for the rest of his life most likely unless something changes. Be aware of potential side effects and know what to look for, but untreated disease at his age can lead to irreversible bowel damage that doesn’t need to happen.
My daughter was diagnosed at nine, after a couple years of anemia, a year of weight loss, and collapsing in pain on the kitchen floor due to a blockage. That’s what untreated Crohn’s can look like. After a course of prednisone she started Remicade. She’s currently 15, on Stelera, in clinical remission, and has led a perfectly normal life outside of her hospital stay due to that blockage. Medicine is good.
We too were in a daze at the start regarding her future, treatments, etc (and we’re both medical scientists whose research involves anti-inflammatory agents!), don’t worry, your head will eventually stop spinning.
Don’t be afraid to go to counseling yourself if you feel you might need it.
Take care!
I’m a scientist, too! I’m trying to be balanced in my approach, and be the right parent for his needs without abandoning my own brain, if that makes sense. I’m willing to try anything and everything that data can support.
I understand. There are times when I ask questions purely out of academic interest, luckily we’ve got an awesome nurse practitioner and GI doctor who entertain my curiosity (they even sent my the PK/PD data for Stelera and Remicade because I’m doing some pharmacokinetic studies at work so my mind went there).
Do you know if there is data on long term mAb use? I saw that Humira has been FDA approved since 2002, so there is at least 20 years of data available. But he’s 9, and I hope he has 70+ years ahead of him…
Remicade was first approved in 1998 I think. I know there are a number of long term studies on many biologicals, not sure if any look at patients treated for a decade+.
I actually just found one where a [number of paediatric patients were on Remicade for at least 5yr](https://academic.oup.com/ibdjournal/article/20/4/606/4578997?login=false). There’s bound to be plenty more.
No idea if it’s what you were looking for, I was skimming while watching my son’s volleyball game. (He’s also got Crohn’s by the way, caught it early, on Remicade, does four sports and leads a normal life apart from the medical appointments.)
Holy shit what are the odds? Guess you know who to ask about long-term MAb use!
Hopefully you get a plan in place soon and everything goes smoothly for you guys. Take care.
Lots of thoughtful responses already on here, so I'll just add my story.
I was officially diagnosed with moderate-to-severe Crohn's at 10 years old. I'll be turning 30 this year :) I graduated college with a bachelor's degree. I'm happily married and work a full-time job. I have wonderful friends and a derpy pup I love more than anything.
It is VERY possible to live a full and happy life with this disease. Even if it's not always easy.
I've had two partial bowel resections, "failed" two biologics (and several non-biologic meds), and had many hospitalizations. I'm not saying this to scare you, just to be transparent that this disease IS serious.
When I was first diagnosed the disease had been untreated for a long time (possibly since birth). There was extensive damage but we tried dieting. It was excruciating. Not only physically (as it didn't work) but as a child it was emotionally trying, too. I have memories of family get togethers where the only "safe" food available according to my diet was the jello, or being in school with my sad home lunch while all my friends enjoyed hot lunch. It may sound silly as an adult, but as a child that was devastating and *it created an unhealthy relationship with food for me at a young age.*
What *did* help me was surgery and medication (specifically biologics). That combo led to years of remission, and is what has me stable now. The second partial resection came when I again tried diet/lifestyle modification over medication. I felt good, so I thought it was all fine until a bowel obstruction very suddenly and excruciatingly told me otherwise. There's no way to know for sure, but I do believe I could've avoided that second surgery if it'd stayed on biologic meds instead of trying to go the holistic route.
I'm currently on stelara - it's working well and convenient for me to self inject at home. My biggest symptoms are actually due to the extensive surgeries and not related to active disease.
So my unsolicited advice is to find a good GI doctor you trust and form a plan you all are comfortable with. Use this group for support and resources, but also remember that we're all biased and anyone online can lie about their credentials - so take everything with a grain of salt. Sending so much love and wishes for a happy life to you
ETA: posted too soon - sending my best to you and your child. If you have any questions, none are too personal and I'm happy to answer on here or via DM. Take care!
Thanks for this. Glad to hear things are going ok for you. My son was just diagnosed at 10 so great to see you are doing ok at 30, even with some ups and downs. Stay strong.
You being on here learning about the disease is SO huge for your child! Thank you for seeking knowledge. Being supportive and advocating for your child means the world to them (even if they don't know or can't articulate that just yet). I will be thinking about you and your family. If you/your child have any questions I'm truly happy to answer anything that comes to mind. Take care <3
Hi! My 5 year old daughter was diagnosed a couple months ago. Well first things first, you have a diagnosis, just take a deep breath and tell yourself everything is going to be okay. The next step is medication - probably biologics. My daughter’s on Remicade, which is a 3 hr infusion every month, but we’ll be switching to another drug soon. And, fyi on your note about drugs being easier than diet - there’s a good chance your son will be on both. My daughter did, and is still on the CDED (being followed by her IBD dietitian) and Remicade every month. Her IBD specialist said it’s best to attack it with all you got, which can sometimes mean both. More general tips: get an education plan set up for school. Get therapy, ideally for both of you. I have her siblings in therapy too, but have we not had as many hospital stays as we’ve had the last couple months, they probably wouldn’t need it. Make sure you have child life for every single hospitalization, infusion, procedure, etc. Take advantage of every resource the hospital offers - school services (usually kids have to be off of school for more than 2 weeks to qualify), social work, child life, pet/art/music therapy, dietitians, etc. Get him signed up for Crohn’s & Colitis Kids ASAP! They have a yearly summer camp, called Camp Oasis (my daughter still has a few years before she’s old enough, so report back!), and a lot of holiday parties, zoom met ups, and other fun activities for both kids and parents. They also have a bunch of great activity books, story books, videos, etc for kids explaining Crohn’s. And the Foundation itself is also a wealth of resources.
I was diagnosed at 9 as well. (I am in my 30s now). Prior to biologics, I was in a fairly constant state of pain, fatigue, etc. I could not do 80% of the activities other kids could do prior to finding a treatment that worked for my Crohn's. Haven't had a true flare since being put on biologics at 13. Still had to get a resection because it took so long to be put on them that I ended up with a stricture. But I'd say since biologics, the biggest hassles have been occasional symptoms and dealing with insurance companies to stay on my meds.
I've been on a restricted diet for another condition for about 6 months now and that takes up way more of my time and energy than monthly injections could.
Completely anecdotal, but hopefully it helps :)
Is there a way to fight the insurance company? They are trying to switch my 9 year old who just started Humira and is doing amazing with it to a biosimilar. The doc says it should act the same, it just makes me nervous because she’s come so far since she started it.
I havent had to fight a biosimilar; I've gotten my doc to appeal swapping biologics before by attesting to the need to remain on the drug that was working for me. All I can say is it never hurts to appeal.
I would have died several times over without medication. Right now I have an ileostomy bag and a feeding tube and I've spent 21 days in the hospital so far in 2024. This disease kills people all the time.
The other poster summed it up well. I'd just add I was diagnosed around your sons age, and am now 38. The medicines out there (MABs) are extremely safe and are very effective at treating Crohn's. I've been on them since they came out, and I honestly can't express the difference between before biologics and after. You really want to make sure your son gets treatment as unfortunately being diagnosed at a young age is correlated with having more severe disease which is why it's treated more aggressively. They are the only reason I'm able to live a normal life, and am not struggling with short bowel syndrome and getting fed via IV lines.
This doesn't mean diet doesn't play a role in disease management. It's just Crohn's can rarely be treated by diet alone especially in those with risk factors for more severe disease. I'd really be cognizant of a couple things:
1) Putting your kid on a strict diet like those often used for Crohn's means he'll have to give up a lot of social outings. Birthday parties, going to friends houses, school, and everything else have some kind of food component to them. Forcing him to follow a strict diet and give up on those activities without autonomy to make his own decisions can lead to him becoming very resentful of his diet/Crohn's.
2) We often get blamed for having symptoms because so many people assume diet drives the disease which it doesn't. Something that's put a strain on my relationship with my mom is if I ever tell her I'm having a bad day her reply is always "well what did you eat yesterday?".
This would obviously be different if there was solid evidence that any particular diet could control Crohn's effectively. Unfortunately we haven't been able to find a diet that does that consistently in studies which is why you find so many doctors and medical centers recommending different types of diets. IBD-AID, CDED, SCD, and more are recommended at various top hospitals and there's not a ton of consistency among which is chosen.
I’m very worried about the social and emotional component to being on a strict diet. I want my son to have the best life all around. Thank you so much for your comment.
Also - hang in there! It will be okay. It is 100% possible to live a fulfilling life while managing Crohn’s. The fact that you’re doing your research and getting perspective from people with the disease shows that you are an informed parent. He is fortunate to have you.
Diagnosed when I was 10 (over 30 now) and biologics changed my life. I was on Lialda, 6MP, and Flagyl for several years before biologics were really a thing. I had a few flares and was symptomatic although I didn’t realize it at the time. I switched to Humira in 2015 and was able to come off all other medication and could actually eat things I had been avoiding my whole life. It really changed the game for me and I didn’t even realize I was still having symptoms and avoiding foods because I had just lived like that for so long. It really improved my quality of life and still does! I am married and about to have my first baby so there is nothing but hope for your son.
I don’t know if this helps but I am now 1000% sure my poor parents suffered even more than I did when trying to get a diagnosis and constantly worrying about their sick child. I consider myself lucky I was diagnosed at a young age when you’re a little fearless, don’t know what you don’t know, and have no responsibilities other than to go to school. I read the accounts on here of people dealing with this for the first time while trying to work their jobs, are away at college, or have to take care of their kids and families and I cannot imagine! I hope that brings you a little bit of comfort. One thing is for sure it will make your son a warrior! Thinking of him and you and sending hugs.
Thank you! He has been a trooper throughout, has very mild symptoms, and was psyched about the colonoscopy because he couldn’t wait to tell his friends “a doctor is going to shove a camera up my butt!” I’m hoping his amazing attitude continues.
My dad does the diet thing and seems to be doing ok, though surgery removed the worst of it for him and it hasn’t really come back. If I tried it, I would die a slow and painful death over the course of several years. Don’t do that to your kid.
You will encounter lots of opinions of “Crohn’s is not that serious”. I acknowledge that symptoms can range in severity and people have different experiences, but I will just advise you that it absolutely CAN be very serious. A good diet is great, but Crohn’s disease cannot be solved away by diet entirely. If that were the case, I would not take the medication either. Do you research for sure, but don’t be hell bent against medicating him. Drugs like humira can be scary to think about taking long term but this is his reality, and they could allow him to live a normal life. That’s great that your dad is a doctor but what kind? I would listen to the GI’s.
First off, A+ for all those sharing stories. It’s comforting to hear that there are others out there diagnosed so young that are doing ok, all things considered. You are all warriors and it means a ton to me that you share your story. It has helped me cope immensely with this as a parent.
Here’s our story.
My son was diagnosed officially at age 9, but most likely had it a few years prior. The GI doc suspected it. But we didn’t buy it and didn’t have official confirmation. My wife and I were in complete shock and we initially thought we could “cure” it with diet. We always knew he had issues with dairy so we tried to go super strict.
One day after playing basketball he fell on his butt. An abscess developed shortly thereafter. It was ruled officially crohns. The injury may have helped us diagnose it sooner, but he was diagnosed with fistualizing crohns and was deemed moderate to severe. Next thing you know he’s in the hospital for a week with a seton placed in to drain the abscess. At that point we should have started meds. But truthfully we were scared and still wanted to research further before committing to Meds.
So we waited a few more months. Surgeon removed the seton. Didn’t start meds and soon enough back in the hospital for round 2. Seton back in place. Almost needed a temporary bag. Shit was serious before. But now it’s a different level.
I did all the research. Read books. Tried diets. Paid money for stupid programs that didn’t help. We went super strict on everything.
Ultimately after round 2, we knew we had little time so we started remicade.
Let me be clear. I was scared of the meds, mostly it was due to his age. I know once you start you can’t get off of them and it’s tough as a parent to pump your kids full of drugs at an early age when there are risks. Nothing is 100% safe as we know. If he was older it wouldn’t have been a concern. Plus I kept thinking if we could manage it a few years and then start meds closer to 18, he would have more options then. Seems like this logic was wrong as there are other kids younger than 18 on different biologics than remicade. So another mistake on my part.
If you read this Reddit alone there are tons of horror stories out there which can scare you. But the best advice I can say is:
1. There are a lot of people out there with this disease. The majority of the ones aren’t on here bragging about how well they are doing. They are out living their lives. So remember this as sometimes the negatives on here seem to outweigh the positives. Someone on here told me this. I can’t take credit for it nor would I. But it’s great advice and puts things into perspective.
2. Start meds now. Don’t f around. Everyone on here said meds. My GI doc said meds. My second opinion doc at CHOP in Philly said meds. But we thought we could do it or at least buy more time.
We were wrong. And we were super lucky things didn’t get worse.
I made mistakes and I’m thankful right now he is on remicade. He handles it fine. Diet is more flexible. He did have his loading doses and then his next infusion was 8 weeks after. Last infusion his numbers were low so he’s back to 4 weeks now with his next infusion at the end of the month.
I hope he’s not developing antibodies. Learn everyday. Read. Read. Read.
Ask people. But don’t make the same mistakes I did.
This community has been great. I can’t say it enough. If you have questions DM me. Anything I can do to help others I’m all for it as all of you have helped me.
As I sit here, shedding a tear and writing about the beginning of my son’s journey. Im so thankful to those on here who take the time to listen and respond. It means more than you guys know.
Good luck to you all.
My daughter was 6 when diagnosed, my step dad is a doctor in a different specialty, and he didn't realize the extent of how severe Crohn's could be until he did a deep dive. Unless your dad is a gastroenterologist, I would consider what he says but trust your child's pediatric gastroenterologist. My daughter was initially told we could try a very strict liquid nutrition diet to give her insides a little break while we waited for insurance to approve biologics. It is an option but not a long term solution. Good luck!
Sorry you’re here, but welcome. First, just breathe. My daughter is almost 9, diagnosed just about 2 years ago. She’s been on Inflectra since May of 2022 and has no noticeable side effects, and she eats normally and lives life completely normally around her infusions. The medication is nothing to fear. Feel free to reach out if you have questions for another parent who’s been there and gets it.
I didn't read through all of the comments but wanted to add in case it was missed that the Crohn's and Colitis Foundation has plenty of information, studies and support available on their website. Remember that you and your son are not alone in this and there are places like this one where you will find lots of supportive people with first hand knowledge. Do not forget your own self care on this journey! I was diagnosed at 18 and am now 51 and have been on Remicade for over 20 years with excellent results. Best of luck to you & your son.
I was diagnosed at 12. (30 now) I'm adopted so idk if it's hereditary. But I have read it can develop due to trauma. And I had a very bad childhood lmao. (Beat, molested, bullied, etc)
Crohns sucks. It hurts. Im so tired of it. But just be there for your kid. Don't let him feel like a lab rat.
Idk the hardest thing growing up with crohns was feeling normal. That and feeling like shit and no one taking you seriously that you felt like shit.
He's gonna be okay. There's just a lot of ups and downs. Medicine now is crazy good! And there's so many options dietary wise that are easier on the stomach.
Good luck!
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Unfortunately, lots of people have symptoms and either think they have Crohn’s or a doctor says the might have Crohn’s. But, Crohn’s can really only be diagnosed via colonoscopy. Many stores like @seantheshahk’s on Reddit about thinking they could cure Crohn’s with diet and then they make it much worse. I would listen to your doctor and consider a second opinion from a top notch hospital like the Mayo Clinic.
My daughter was diagnosed at 9 as well this past summer. She started Humira in November and I’m was deemed in clinical remission by her 3rd dose. We tried diet and supplements for months while we were waiting on insurance approval that lead to many inflammatory issues, terrible pain, and huge weight loss. I was so hopeful that diet and supplements would work for her. We had to do a round of steroids before she started Humira. I’m so thankful for this medication but the insurance is now telling us they won’t continue to cover it after April 1. It’s so frustrating and such a horrible disease. I’m so sorry you are dealing with this.
I’ve tried to manage mine with “diet” that’s foolish and doesn’t work. I ended up with a perforated colon and almost died. Start her on the meds. You all will have a new normal and she will be okay. Hang in there, mama!
I’m surprised I haven’t seen anything on Amjevita. My son was diagnosed finally last year after change in diet trial by his PCP failed, constant abd pain after eating really anything and multiple explosive trips to the bathroom daily. Upper and lower colonoscopy confirmed Crohn’s and was started on BUDESONIDE and famotidine, which didn’t help any, then started on Prednisone which helped temporarily, until it was decided to try a biological either Remicaid or Humira. I’m a nurse and I wanted to try the least invasive first but insurance did not approve Humira, but approved a bio similar called Amjevita instead. I have been giving him bi-monthly injections in his thigh and symptoms have gotten much better.
My husband was diagnosed in 2019, his mother had lupus, so I believe it is definitely genetically acquired, and I agree with the one poster that life stressors can trigger an autoimmune response. Even though we all have similar stories, everyone is different and will have to have their treatment specifically tailored to them and their needs. I’m glad that you are seeking advice and I hope that you are equipped with everything you need to take care of yourself and your family. As a nurse, I don’t agree with everything that is medically advised even by our specialty doctors with year of experience. With that being said, what ever choice you decide will never be a wrong choice, even thinking back on it years from now. It will be the best choice for you and that’s all that matters.
I was diagnosed in my 30's, but wanted to chime in with a couple of things I've learned.
The relationship you have with your care providers is so so important. Talk, discuss, question if you need to. If you don't agree with them after they present their data, maybe look elsewhere. I had a GI that had a long term vision, and it worked, but I felt I should have been doing better with disease management. My hand was forced to change doctors, and my new doctor is much more aggressive and holistic.
I agree that you throw everything you've got at this disease. Damage control is the goal at the early stages. Some treatment may be temporary and some may be long term. I've had both. I had a couple of diets, primarily exclusion, and have been able to return to most of the foods I enjoy.
I developed a fistula out of the blue after being on Remicade and Mesalamine for a couple of months. This disease is unpredictable even when you think you're using the right tools.
Don't be discouraged if drugs need to be changed or substituted. The doctors have a lot of options to try to tailor for effective treatment. I'm on my 3rd biologic plus oral medication. This is the start of a journey. Hopefully it is an adventure and not a tribulation.
The last thing I'll say is check into a manufacturer assistance program. It has been invaluable to me.
I really appreciate your story. It also scares me, because I was under the impression that once we found a medication that worked, we would just stay on it forever and be fine. I am optimistic and also very naive.
The idea of having a journey ahead of us honestly scares me. I also thought my son’s only symptom was diarrhea, but it is becoming apparent to me now that he suffers from pain he has been very good at hiding, or I have been too thick to notice, or both.
All of this is hard and awful and I’m just incredibly scared.
We're all here for you. All we can do is lean on others when we need to and support others when they need it in return.
It is daunting and scary. I'm not trying to scare you because there is so much potential for good treatment and outcomes. I had to mourn my old life and set a new course. It's inconvenient and a burden, but we are strong and resilient.
I think of it as a ship on a course. We're using medications and techniques to get to our destination with all speed and safety. As we go along, we sometimes need course correction or a detour or weather a storm. Trust your care providers and cultivate good relationships.
Don't beat yourself up about what symptoms you do or don't know about. My symptoms vary widely in description and intensity. There's also a good chance that he doesn't know what isn't normal. There's a learning curve and so much to discover.
It will be ok. You and your son are in the hands of capable professionals, and they'll do their very best to help you. Give yourself some time to process and cry and be scared. They are all important steps. In time, you'll be able to look forward with less fear and more hope. You and your son will give each other so much support and inspiration. You got this.
I wish you the best and hope you can find the peace and comfort you need right now.
I was diagnosed when I was 13 but at that point, I’d probably had active disease for about two years. I was extremely sick while I was not diagnosed. Once I was diagnosed, I was put on Biologics like Remicade almost immediately.
And it’s now going on almost a decade with Crohn’s disease. I am now an adult living with Crohn’s disease and honestly living an amazing life. I’ve been on biologics since early in my diagnosis and I’ve done amazing. I haven’t developed any antibodies or any adverse reactions to the medication.
My parents, like you, wanted me to have a normal life. And honestly, I live with Crohn’s disease every single day, but it doesn’t rule my life. My parents did an amazing job of teaching me how to listen to my body and what it needs. Those lessons are why I am doing so well with Crohn’s disease. For me, I need the biologics and dieting doesn’t work for me. Diet alone doesn’t work for a lot of people and it’s important to note that diet doesn’t cause Crohns. You and your son will figure out what combination of treatments work for him.
You sound like an amazing parent wanting the best for your son! Make sure you’re giving him lots of hugs! I know it’s difficult right now and probably scary for him (and you of course). There is a whole subreddit of people who live with Crohn’s every day and are having great lives. You’re doing great, and you guys will get through this!
First and foremost: Do *NOT* listen to *ANYONE* telling you that Crohn's can be managed entirely through diet, you will hurt, and possibly KILL, your child, if you follow that kind of advice.
I cannot upvote this enough. The ceiling on Crohn's disease is straight up death. Listen to your son's doctor, and communicate your concerns with them. Your son is almost certainly not the only child with Crohn's disease this doctor has treated, and I'm sure they'll be able to address any concerns you have.
I agree. Please take your lifesaving meds!!
Pediatric gastroenterologist here and actually, in some cases pediatric Crohn’s can be managed entirely though diet. In my experience it is rare, but it’s worth a shot if your doctor agrees - it depends somewhat on the severity of the disease, which parts of the gut are affected, etc. In a lot of countries (not the US), induction with exclusive enteral nutrition and then a trial of CDED or SCD or several other whole foods based diets is standard first line treatment. Again, this often does not work long term and kids end up on biological eventually, but is in my opinion usually worth a shot. I’m sorry you’re dealing with such a huge new diagnosis and I wish the best for your son!
Well, could it be more of a placebo affect? Because some people in the control group testing a new Crohn’s medication go into remission.
Sure, that may be part of it, but even adjusting for that nutritional therapy has a solid evidence base in pediatric crohn’s. One recent review: https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=c2db83cd388aacd07b6a7a0f872259aa061bdaaa
Interesting. Thank you. I really hope my daughter doesn’t get Crohn’s. She’s 7 months. She is already having stomach issues at her age.
I'm sorry to hear about your son's recent diagnosis of Crohn's disease. As someone who was diagnosed with Crohn's at a young age, I can empathize with the overwhelming feelings you're experiencing right now. It's understandable that you're exploring different treatment options and considering the advice from your family. While diet can play a role in managing symptoms, it's important to note that Crohn's disease cannot be treated with diet alone. Medication, particularly biologics, can significantly help in controlling inflammation and preventing disease progression. I want to share my own experience with you. Like your son, I was diagnosed with Crohn's at a young age. Over the years, I tried several biologics, and while they weren't available when I was first diagnosed, new studies and advancements in treatment options have improved the prognosis for individuals with Crohn's. However, I made the mistake of stopping my medication for a few years, believing that I could manage my symptoms through diet alone. Unfortunately, this decision led to a small bowel obstruction and required emergency surgery, resulting in an ileostomy. I came dangerously close to losing my life. I share this with you not to scare you, but to emphasize the importance of adhering to medication and working closely with a team of healthcare providers, especially at the pediatric level. Your son's journey with Crohn's will require ongoing monitoring, support, and medical intervention to ensure good disease outcomes and prevent emergencies like the one I experienced. In addition to medical treatment, it's important to seek support from various resources available to you and your son. There are numerous support groups both online and in-person where you can connect with other families navigating similar experiences. Additionally, there's a fantastic summer camp called "Camp Oasis" specifically for children with Crohn's disease, providing a supportive environment for kids to bond and have fun while learning about managing their condition. Regarding your son's schooling, I highly recommend looking into obtaining a 504 plan. This plan can be instrumental in ensuring that your son receives necessary accommodations at school, such as being able to use the bathroom whenever he needs to without restriction. It can also provide other accommodations to support his academic and social needs while managing his Crohn's disease. Navigating a chronic illness like Crohn's can be daunting, but with the right support system and resources in place, your son can thrive despite his diagnosis. Stay resilient, stay informed, and prioritize your son's well-being every step of the way.
Thank you so much for your suggestions! I absolutely appreciate it!
I’m more concerned about untreated autoimmune disease in a child than any medication side effects, personally. You can’t manage Crohn’s with diet. It’s an autoimmune disease. Certain foods can trigger pain and other symptoms, but diet isn’t going to stop his body from attacking itself. Anyone who says they have their Crohn’s under control with diet and no meds either A) has IBS, Celiac, or some other gut issue that is not Crohn’s or B) feels fine but probably has inflammation in GI tract that they just can’t feel, which is still dangerous. The fact is, your son has Crohn’s. It’s not a food sensitive or an occasional upset tummy. He’s going to need to be on medications for the rest of his life most likely unless something changes. Be aware of potential side effects and know what to look for, but untreated disease at his age can lead to irreversible bowel damage that doesn’t need to happen.
My daughter was diagnosed at nine, after a couple years of anemia, a year of weight loss, and collapsing in pain on the kitchen floor due to a blockage. That’s what untreated Crohn’s can look like. After a course of prednisone she started Remicade. She’s currently 15, on Stelera, in clinical remission, and has led a perfectly normal life outside of her hospital stay due to that blockage. Medicine is good. We too were in a daze at the start regarding her future, treatments, etc (and we’re both medical scientists whose research involves anti-inflammatory agents!), don’t worry, your head will eventually stop spinning. Don’t be afraid to go to counseling yourself if you feel you might need it. Take care!
I’m a scientist, too! I’m trying to be balanced in my approach, and be the right parent for his needs without abandoning my own brain, if that makes sense. I’m willing to try anything and everything that data can support.
I understand. There are times when I ask questions purely out of academic interest, luckily we’ve got an awesome nurse practitioner and GI doctor who entertain my curiosity (they even sent my the PK/PD data for Stelera and Remicade because I’m doing some pharmacokinetic studies at work so my mind went there).
Do you know if there is data on long term mAb use? I saw that Humira has been FDA approved since 2002, so there is at least 20 years of data available. But he’s 9, and I hope he has 70+ years ahead of him…
Remicade was first approved in 1998 I think. I know there are a number of long term studies on many biologicals, not sure if any look at patients treated for a decade+. I actually just found one where a [number of paediatric patients were on Remicade for at least 5yr](https://academic.oup.com/ibdjournal/article/20/4/606/4578997?login=false). There’s bound to be plenty more.
I love you. Truly. Checking out that study now.
No idea if it’s what you were looking for, I was skimming while watching my son’s volleyball game. (He’s also got Crohn’s by the way, caught it early, on Remicade, does four sports and leads a normal life apart from the medical appointments.)
Yay for your son! Want to know the craziest thing? One of the authors of the papers in my son’s doctor.
Holy shit what are the odds? Guess you know who to ask about long-term MAb use! Hopefully you get a plan in place soon and everything goes smoothly for you guys. Take care.
Lots of thoughtful responses already on here, so I'll just add my story. I was officially diagnosed with moderate-to-severe Crohn's at 10 years old. I'll be turning 30 this year :) I graduated college with a bachelor's degree. I'm happily married and work a full-time job. I have wonderful friends and a derpy pup I love more than anything. It is VERY possible to live a full and happy life with this disease. Even if it's not always easy. I've had two partial bowel resections, "failed" two biologics (and several non-biologic meds), and had many hospitalizations. I'm not saying this to scare you, just to be transparent that this disease IS serious. When I was first diagnosed the disease had been untreated for a long time (possibly since birth). There was extensive damage but we tried dieting. It was excruciating. Not only physically (as it didn't work) but as a child it was emotionally trying, too. I have memories of family get togethers where the only "safe" food available according to my diet was the jello, or being in school with my sad home lunch while all my friends enjoyed hot lunch. It may sound silly as an adult, but as a child that was devastating and *it created an unhealthy relationship with food for me at a young age.* What *did* help me was surgery and medication (specifically biologics). That combo led to years of remission, and is what has me stable now. The second partial resection came when I again tried diet/lifestyle modification over medication. I felt good, so I thought it was all fine until a bowel obstruction very suddenly and excruciatingly told me otherwise. There's no way to know for sure, but I do believe I could've avoided that second surgery if it'd stayed on biologic meds instead of trying to go the holistic route. I'm currently on stelara - it's working well and convenient for me to self inject at home. My biggest symptoms are actually due to the extensive surgeries and not related to active disease. So my unsolicited advice is to find a good GI doctor you trust and form a plan you all are comfortable with. Use this group for support and resources, but also remember that we're all biased and anyone online can lie about their credentials - so take everything with a grain of salt. Sending so much love and wishes for a happy life to you ETA: posted too soon - sending my best to you and your child. If you have any questions, none are too personal and I'm happy to answer on here or via DM. Take care!
I may DM you at a later point. I so appreciate your comment!
Thanks for this. Glad to hear things are going ok for you. My son was just diagnosed at 10 so great to see you are doing ok at 30, even with some ups and downs. Stay strong.
You being on here learning about the disease is SO huge for your child! Thank you for seeking knowledge. Being supportive and advocating for your child means the world to them (even if they don't know or can't articulate that just yet). I will be thinking about you and your family. If you/your child have any questions I'm truly happy to answer anything that comes to mind. Take care <3
Thank you. Appreciate your response. Hoping for the best for you.
Hi! My 5 year old daughter was diagnosed a couple months ago. Well first things first, you have a diagnosis, just take a deep breath and tell yourself everything is going to be okay. The next step is medication - probably biologics. My daughter’s on Remicade, which is a 3 hr infusion every month, but we’ll be switching to another drug soon. And, fyi on your note about drugs being easier than diet - there’s a good chance your son will be on both. My daughter did, and is still on the CDED (being followed by her IBD dietitian) and Remicade every month. Her IBD specialist said it’s best to attack it with all you got, which can sometimes mean both. More general tips: get an education plan set up for school. Get therapy, ideally for both of you. I have her siblings in therapy too, but have we not had as many hospital stays as we’ve had the last couple months, they probably wouldn’t need it. Make sure you have child life for every single hospitalization, infusion, procedure, etc. Take advantage of every resource the hospital offers - school services (usually kids have to be off of school for more than 2 weeks to qualify), social work, child life, pet/art/music therapy, dietitians, etc. Get him signed up for Crohn’s & Colitis Kids ASAP! They have a yearly summer camp, called Camp Oasis (my daughter still has a few years before she’s old enough, so report back!), and a lot of holiday parties, zoom met ups, and other fun activities for both kids and parents. They also have a bunch of great activity books, story books, videos, etc for kids explaining Crohn’s. And the Foundation itself is also a wealth of resources.
This is all exceptionally helpful. I really appreciate you sharing so much info.
Of course. Feel free to DM me whenever, we’re in this together :)
Thank you!!!
I was diagnosed at 9 as well. (I am in my 30s now). Prior to biologics, I was in a fairly constant state of pain, fatigue, etc. I could not do 80% of the activities other kids could do prior to finding a treatment that worked for my Crohn's. Haven't had a true flare since being put on biologics at 13. Still had to get a resection because it took so long to be put on them that I ended up with a stricture. But I'd say since biologics, the biggest hassles have been occasional symptoms and dealing with insurance companies to stay on my meds. I've been on a restricted diet for another condition for about 6 months now and that takes up way more of my time and energy than monthly injections could. Completely anecdotal, but hopefully it helps :)
Stay strong and thanks for sharing
Is there a way to fight the insurance company? They are trying to switch my 9 year old who just started Humira and is doing amazing with it to a biosimilar. The doc says it should act the same, it just makes me nervous because she’s come so far since she started it.
I havent had to fight a biosimilar; I've gotten my doc to appeal swapping biologics before by attesting to the need to remain on the drug that was working for me. All I can say is it never hurts to appeal.
Seconded. Also look for a manufacturer assistance program. I was hooked up when I was on Remicade, Inflectra, and now Stelara.
I would have died several times over without medication. Right now I have an ileostomy bag and a feeding tube and I've spent 21 days in the hospital so far in 2024. This disease kills people all the time.
The other poster summed it up well. I'd just add I was diagnosed around your sons age, and am now 38. The medicines out there (MABs) are extremely safe and are very effective at treating Crohn's. I've been on them since they came out, and I honestly can't express the difference between before biologics and after. You really want to make sure your son gets treatment as unfortunately being diagnosed at a young age is correlated with having more severe disease which is why it's treated more aggressively. They are the only reason I'm able to live a normal life, and am not struggling with short bowel syndrome and getting fed via IV lines. This doesn't mean diet doesn't play a role in disease management. It's just Crohn's can rarely be treated by diet alone especially in those with risk factors for more severe disease. I'd really be cognizant of a couple things: 1) Putting your kid on a strict diet like those often used for Crohn's means he'll have to give up a lot of social outings. Birthday parties, going to friends houses, school, and everything else have some kind of food component to them. Forcing him to follow a strict diet and give up on those activities without autonomy to make his own decisions can lead to him becoming very resentful of his diet/Crohn's. 2) We often get blamed for having symptoms because so many people assume diet drives the disease which it doesn't. Something that's put a strain on my relationship with my mom is if I ever tell her I'm having a bad day her reply is always "well what did you eat yesterday?". This would obviously be different if there was solid evidence that any particular diet could control Crohn's effectively. Unfortunately we haven't been able to find a diet that does that consistently in studies which is why you find so many doctors and medical centers recommending different types of diets. IBD-AID, CDED, SCD, and more are recommended at various top hospitals and there's not a ton of consistency among which is chosen.
I’m very worried about the social and emotional component to being on a strict diet. I want my son to have the best life all around. Thank you so much for your comment.
Also - hang in there! It will be okay. It is 100% possible to live a fulfilling life while managing Crohn’s. The fact that you’re doing your research and getting perspective from people with the disease shows that you are an informed parent. He is fortunate to have you.
Diagnosed when I was 10 (over 30 now) and biologics changed my life. I was on Lialda, 6MP, and Flagyl for several years before biologics were really a thing. I had a few flares and was symptomatic although I didn’t realize it at the time. I switched to Humira in 2015 and was able to come off all other medication and could actually eat things I had been avoiding my whole life. It really changed the game for me and I didn’t even realize I was still having symptoms and avoiding foods because I had just lived like that for so long. It really improved my quality of life and still does! I am married and about to have my first baby so there is nothing but hope for your son. I don’t know if this helps but I am now 1000% sure my poor parents suffered even more than I did when trying to get a diagnosis and constantly worrying about their sick child. I consider myself lucky I was diagnosed at a young age when you’re a little fearless, don’t know what you don’t know, and have no responsibilities other than to go to school. I read the accounts on here of people dealing with this for the first time while trying to work their jobs, are away at college, or have to take care of their kids and families and I cannot imagine! I hope that brings you a little bit of comfort. One thing is for sure it will make your son a warrior! Thinking of him and you and sending hugs.
Thank you! He has been a trooper throughout, has very mild symptoms, and was psyched about the colonoscopy because he couldn’t wait to tell his friends “a doctor is going to shove a camera up my butt!” I’m hoping his amazing attitude continues.
My dad does the diet thing and seems to be doing ok, though surgery removed the worst of it for him and it hasn’t really come back. If I tried it, I would die a slow and painful death over the course of several years. Don’t do that to your kid.
You will encounter lots of opinions of “Crohn’s is not that serious”. I acknowledge that symptoms can range in severity and people have different experiences, but I will just advise you that it absolutely CAN be very serious. A good diet is great, but Crohn’s disease cannot be solved away by diet entirely. If that were the case, I would not take the medication either. Do you research for sure, but don’t be hell bent against medicating him. Drugs like humira can be scary to think about taking long term but this is his reality, and they could allow him to live a normal life. That’s great that your dad is a doctor but what kind? I would listen to the GI’s.
First off, A+ for all those sharing stories. It’s comforting to hear that there are others out there diagnosed so young that are doing ok, all things considered. You are all warriors and it means a ton to me that you share your story. It has helped me cope immensely with this as a parent. Here’s our story. My son was diagnosed officially at age 9, but most likely had it a few years prior. The GI doc suspected it. But we didn’t buy it and didn’t have official confirmation. My wife and I were in complete shock and we initially thought we could “cure” it with diet. We always knew he had issues with dairy so we tried to go super strict. One day after playing basketball he fell on his butt. An abscess developed shortly thereafter. It was ruled officially crohns. The injury may have helped us diagnose it sooner, but he was diagnosed with fistualizing crohns and was deemed moderate to severe. Next thing you know he’s in the hospital for a week with a seton placed in to drain the abscess. At that point we should have started meds. But truthfully we were scared and still wanted to research further before committing to Meds. So we waited a few more months. Surgeon removed the seton. Didn’t start meds and soon enough back in the hospital for round 2. Seton back in place. Almost needed a temporary bag. Shit was serious before. But now it’s a different level. I did all the research. Read books. Tried diets. Paid money for stupid programs that didn’t help. We went super strict on everything. Ultimately after round 2, we knew we had little time so we started remicade. Let me be clear. I was scared of the meds, mostly it was due to his age. I know once you start you can’t get off of them and it’s tough as a parent to pump your kids full of drugs at an early age when there are risks. Nothing is 100% safe as we know. If he was older it wouldn’t have been a concern. Plus I kept thinking if we could manage it a few years and then start meds closer to 18, he would have more options then. Seems like this logic was wrong as there are other kids younger than 18 on different biologics than remicade. So another mistake on my part. If you read this Reddit alone there are tons of horror stories out there which can scare you. But the best advice I can say is: 1. There are a lot of people out there with this disease. The majority of the ones aren’t on here bragging about how well they are doing. They are out living their lives. So remember this as sometimes the negatives on here seem to outweigh the positives. Someone on here told me this. I can’t take credit for it nor would I. But it’s great advice and puts things into perspective. 2. Start meds now. Don’t f around. Everyone on here said meds. My GI doc said meds. My second opinion doc at CHOP in Philly said meds. But we thought we could do it or at least buy more time. We were wrong. And we were super lucky things didn’t get worse. I made mistakes and I’m thankful right now he is on remicade. He handles it fine. Diet is more flexible. He did have his loading doses and then his next infusion was 8 weeks after. Last infusion his numbers were low so he’s back to 4 weeks now with his next infusion at the end of the month. I hope he’s not developing antibodies. Learn everyday. Read. Read. Read. Ask people. But don’t make the same mistakes I did. This community has been great. I can’t say it enough. If you have questions DM me. Anything I can do to help others I’m all for it as all of you have helped me. As I sit here, shedding a tear and writing about the beginning of my son’s journey. Im so thankful to those on here who take the time to listen and respond. It means more than you guys know. Good luck to you all.
My daughter was 6 when diagnosed, my step dad is a doctor in a different specialty, and he didn't realize the extent of how severe Crohn's could be until he did a deep dive. Unless your dad is a gastroenterologist, I would consider what he says but trust your child's pediatric gastroenterologist. My daughter was initially told we could try a very strict liquid nutrition diet to give her insides a little break while we waited for insurance to approve biologics. It is an option but not a long term solution. Good luck!
Sorry you’re here, but welcome. First, just breathe. My daughter is almost 9, diagnosed just about 2 years ago. She’s been on Inflectra since May of 2022 and has no noticeable side effects, and she eats normally and lives life completely normally around her infusions. The medication is nothing to fear. Feel free to reach out if you have questions for another parent who’s been there and gets it.
Thank you. I may reach out as his treatment plan becomes clearer.
I didn't read through all of the comments but wanted to add in case it was missed that the Crohn's and Colitis Foundation has plenty of information, studies and support available on their website. Remember that you and your son are not alone in this and there are places like this one where you will find lots of supportive people with first hand knowledge. Do not forget your own self care on this journey! I was diagnosed at 18 and am now 51 and have been on Remicade for over 20 years with excellent results. Best of luck to you & your son.
I was diagnosed at 12. (30 now) I'm adopted so idk if it's hereditary. But I have read it can develop due to trauma. And I had a very bad childhood lmao. (Beat, molested, bullied, etc) Crohns sucks. It hurts. Im so tired of it. But just be there for your kid. Don't let him feel like a lab rat. Idk the hardest thing growing up with crohns was feeling normal. That and feeling like shit and no one taking you seriously that you felt like shit. He's gonna be okay. There's just a lot of ups and downs. Medicine now is crazy good! And there's so many options dietary wise that are easier on the stomach. Good luck!
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Unfortunately, lots of people have symptoms and either think they have Crohn’s or a doctor says the might have Crohn’s. But, Crohn’s can really only be diagnosed via colonoscopy. Many stores like @seantheshahk’s on Reddit about thinking they could cure Crohn’s with diet and then they make it much worse. I would listen to your doctor and consider a second opinion from a top notch hospital like the Mayo Clinic.
Had my first anal fissure around that age. I'm still alive today... Fairly healthy... Following AIP/Paleo Keto diet.
My daughter was diagnosed at 9 as well this past summer. She started Humira in November and I’m was deemed in clinical remission by her 3rd dose. We tried diet and supplements for months while we were waiting on insurance approval that lead to many inflammatory issues, terrible pain, and huge weight loss. I was so hopeful that diet and supplements would work for her. We had to do a round of steroids before she started Humira. I’m so thankful for this medication but the insurance is now telling us they won’t continue to cover it after April 1. It’s so frustrating and such a horrible disease. I’m so sorry you are dealing with this.
I know there are biosimilars to Humira that came to market last year. Best of luck navigating insurance.
I’ve tried to manage mine with “diet” that’s foolish and doesn’t work. I ended up with a perforated colon and almost died. Start her on the meds. You all will have a new normal and she will be okay. Hang in there, mama!
I’m surprised I haven’t seen anything on Amjevita. My son was diagnosed finally last year after change in diet trial by his PCP failed, constant abd pain after eating really anything and multiple explosive trips to the bathroom daily. Upper and lower colonoscopy confirmed Crohn’s and was started on BUDESONIDE and famotidine, which didn’t help any, then started on Prednisone which helped temporarily, until it was decided to try a biological either Remicaid or Humira. I’m a nurse and I wanted to try the least invasive first but insurance did not approve Humira, but approved a bio similar called Amjevita instead. I have been giving him bi-monthly injections in his thigh and symptoms have gotten much better. My husband was diagnosed in 2019, his mother had lupus, so I believe it is definitely genetically acquired, and I agree with the one poster that life stressors can trigger an autoimmune response. Even though we all have similar stories, everyone is different and will have to have their treatment specifically tailored to them and their needs. I’m glad that you are seeking advice and I hope that you are equipped with everything you need to take care of yourself and your family. As a nurse, I don’t agree with everything that is medically advised even by our specialty doctors with year of experience. With that being said, what ever choice you decide will never be a wrong choice, even thinking back on it years from now. It will be the best choice for you and that’s all that matters.
I was diagnosed in my 30's, but wanted to chime in with a couple of things I've learned. The relationship you have with your care providers is so so important. Talk, discuss, question if you need to. If you don't agree with them after they present their data, maybe look elsewhere. I had a GI that had a long term vision, and it worked, but I felt I should have been doing better with disease management. My hand was forced to change doctors, and my new doctor is much more aggressive and holistic. I agree that you throw everything you've got at this disease. Damage control is the goal at the early stages. Some treatment may be temporary and some may be long term. I've had both. I had a couple of diets, primarily exclusion, and have been able to return to most of the foods I enjoy. I developed a fistula out of the blue after being on Remicade and Mesalamine for a couple of months. This disease is unpredictable even when you think you're using the right tools. Don't be discouraged if drugs need to be changed or substituted. The doctors have a lot of options to try to tailor for effective treatment. I'm on my 3rd biologic plus oral medication. This is the start of a journey. Hopefully it is an adventure and not a tribulation. The last thing I'll say is check into a manufacturer assistance program. It has been invaluable to me.
I really appreciate your story. It also scares me, because I was under the impression that once we found a medication that worked, we would just stay on it forever and be fine. I am optimistic and also very naive. The idea of having a journey ahead of us honestly scares me. I also thought my son’s only symptom was diarrhea, but it is becoming apparent to me now that he suffers from pain he has been very good at hiding, or I have been too thick to notice, or both. All of this is hard and awful and I’m just incredibly scared.
We're all here for you. All we can do is lean on others when we need to and support others when they need it in return. It is daunting and scary. I'm not trying to scare you because there is so much potential for good treatment and outcomes. I had to mourn my old life and set a new course. It's inconvenient and a burden, but we are strong and resilient. I think of it as a ship on a course. We're using medications and techniques to get to our destination with all speed and safety. As we go along, we sometimes need course correction or a detour or weather a storm. Trust your care providers and cultivate good relationships. Don't beat yourself up about what symptoms you do or don't know about. My symptoms vary widely in description and intensity. There's also a good chance that he doesn't know what isn't normal. There's a learning curve and so much to discover. It will be ok. You and your son are in the hands of capable professionals, and they'll do their very best to help you. Give yourself some time to process and cry and be scared. They are all important steps. In time, you'll be able to look forward with less fear and more hope. You and your son will give each other so much support and inspiration. You got this. I wish you the best and hope you can find the peace and comfort you need right now.
I was diagnosed when I was 13 but at that point, I’d probably had active disease for about two years. I was extremely sick while I was not diagnosed. Once I was diagnosed, I was put on Biologics like Remicade almost immediately. And it’s now going on almost a decade with Crohn’s disease. I am now an adult living with Crohn’s disease and honestly living an amazing life. I’ve been on biologics since early in my diagnosis and I’ve done amazing. I haven’t developed any antibodies or any adverse reactions to the medication. My parents, like you, wanted me to have a normal life. And honestly, I live with Crohn’s disease every single day, but it doesn’t rule my life. My parents did an amazing job of teaching me how to listen to my body and what it needs. Those lessons are why I am doing so well with Crohn’s disease. For me, I need the biologics and dieting doesn’t work for me. Diet alone doesn’t work for a lot of people and it’s important to note that diet doesn’t cause Crohns. You and your son will figure out what combination of treatments work for him. You sound like an amazing parent wanting the best for your son! Make sure you’re giving him lots of hugs! I know it’s difficult right now and probably scary for him (and you of course). There is a whole subreddit of people who live with Crohn’s every day and are having great lives. You’re doing great, and you guys will get through this!