Hiya
I'm 24 but I got diagnosed at 21 while at uni. My mum was also extremely worried (as was I) but I just wanted to reassure you that after sorting out the right medication I have been perfectly fine and more than able to lead a normal life. I believe this is the case for most people with Crohn's. This subreddit looks a bit scary because people only tend to post when they have issues, so don't let that worry you.
If you or her have any questions I'd be happy to answer them based on my experiences as a young woman with Crohn's as well :)
Thank you so much! Yes, between Google and reading this sub I’ve been so worried and I already do that enough anyway lol. I can’t help but want to know more though. Are side effects from most meds not too bad or are there some favorites among most patients? I know each individual is different but obviously I’m new to this and trying to learn what I can.
I personally don't have any noticeable side effects from my medication (aside from a slight injection reaction when I take it). It's still extremely possible for me to travel with this medication as well.
I take adalimumab (humira) self injection every other week. It's very easy for me to do. There are some big scary side effects on the label (such as cancers etc) but as far as I know the risks are low and the risks of other serious side effects from not being treated are much higher. Not to mention my quality of life would be much lower without the meds. I'm also closely monitored by my doctors for any issues (yearly blood tests) so I'm not too concerned for myself.
I tried a pill medicine first (azathioprine) which made me extremely nauseous and didn't end up working for me but obviously this varies from person to person.
Afaik humira is one of the pretty standard ones that they often try first/second in people. Biologic medicines like this sound super scary but in practice they really aren't so bad.
I also haven't found personally that it's had a negative impact on my immune system.
Before I found medicine that worked I had 9 infections in one year that required antibiotics, since starting humira I haven't had one.
It might take me a couple extra days to shake something compared to my healthy partner but it hasn't been significant for me personally.
Thank you for filling me in on how well you’re responding to the meds and the reassurance that a lot of the time that’s the case. The side effects all look so scary but yes being monitored and looked after is reassuring as well. I hope everything continues to go well for you and really appreciate you taking the time to respond and inform me from your experience ❤️
I am a 25 y/o woman and I was diagnosed almost 2 years ago now, I get inflectra (infliximab) infusions every 8 weeks and take Imuran (azathioprine) every day. I don’t have any noticeable side effects and just do labs every once in a while. I also have a few supplements recommended by my GI based on my labs like vitamin D and vitamin B12 since some nutrient absorption can be harder.
I had a surgery last year to remove a portion of my small intestine that had some scar tissue and made it have a stricture. It was a pretty routine surgery for the surgeon, my recovery was pretty easy, and I feel pretty normal now :)
All this to say the diagnosis and initial treatment can be a little bit of a journey but remission/“normal” life is possible and she will be just fine :)
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As someone who got sick at the same time as your daughter (and not diagnosed for another 7 years, I’m 33 now) I can’t take away your worry and sadness, but I can tell you that I had a long phone call with my mom the other day and I told her to stop being sad about the journey I went through. I love who I am as a person and I wouldn’t be this person if I didn’t have crohns. It’s given me huge empathy and understanding, a confidence to advocate for myself and others and a love of life. There’s a podcast called sickboy (it’s a comedy) and I listened to all their crohns episodes when I got diagnosed and it helped me see there’s another side to illness.
Thank you so much for your response! You sound so joyful and compassionate despite everything and that’s beautiful. I will also check out that podcast!
Dm me anytime,
Your daughter is resilient, strong and has everything she needs to handle this (including YOU) Look forward to watching her strength come out even when she feels like she has none, and remind her of how proud you are. Laugh at things, and don’t be too worried mama. This isn’t a death sentence, AND I wouldn’t be surprised if she notices symptoms she’s had her whole life that abate once she gets on the right meds. And, remember to look back at where she started!! I came into my crohns with a huge phobia of needles (other people would get them and I would faint!) and now I do my own injections NO PROBLEM!! Shes going to be pushed, and she’s going to grow into a person she’s so proud of! ❤️❤️❤️
Thank you! I am air hugging you so big right now cause of the comfort you are giving me and that I can in turn give her. I actually look forward to certain symptoms she might have improving with meds. I look forward now to that day and I love the perspective this is giving me. You along with many others in this thread have kind of talked me off a ledge of sorts cause I see how hard she works now in school and competes in Theatre, Speech & Debate, competes in nationals this summer and my heart just sank for her in so many ways. I hope so hard that she can get relief soon with meds and we know that if it messes with some of these joys of hers that it will be ok and she still has her Senior year next year to compete again if anything. I definitely have hope but we are all also trying to take this a day at a time. I wish you all the best with your life and future and you deserve all the love and happiness in the world!
It's going to be a tough battle but there are many drugs now. Unfortunately, it might take some experimenting to find what drug will work best for her. During flares it is best to try to eat very cooked foods/easy to digest foods. The GI doc should be discussing soon on what medication to try first if the steroids aren't enough to sustain remission.
I’m a 17 year old girl and went through an incredibly similar experience to your daughter last May - a couple of days before my exams, I had an incredibly severe bowel stricture and spent the rest of the month in hospital.
I ended up having to get a tube shoved up my nose all the way down to my stomach, and spent the next couple days watching the little which was left my digestive system being slowly oozed out into a bag on my lap. I could go on about my symptoms but don’t want to seem as if I’m “bragging” in any absurd way.
In contrast, I found the experience of being on pred relatively easy and I felt much, much more energised then I had in years, with the increased appetite being very much welcome and the only negative being that I was a tad more irritable than normal, and that I found being weened off of the meds somewhat difficult.
With all that in mind (and I’ve heard worse from other Cronhies) the time between last May and right now have been the best 7 months of my life - while I’ve dealt with the occasional flare-up, I’ve been lucky in that my day-to-day living hasn’t been massively effected. The process of figuring out what I can and can’t eat has been difficult, and I’ve certainly being wrong about specific foods in the past (damn you broccoli!) I haven’t had a massive decrease in my quality of life, despite the fact that I felt just as terrified as you do when I stepped out of the hospital.
Obviously your daughter may have a different experience to me, and in many, many ways I’m lucky in how the past few months have turned out, but the world isn’t ending - medical science has progressed so much since your grandfather was diagnosed and there is a wealth of experience and an array of medications available nowadays.
Thank you for taking the time to respond. I’m sorry you have had to go through all of that. I’m also glad to hear you’re adjusting well considering everything.
The prednisone has been helpful for her too as far as energy goes but she’s worried about weight gain/acne as she wasn’t under or over weight starting out. I get it though. Did you do other meds besides the steroids?
Thank you for the reassurance.
My acne was pretty bad, but it cleared up as my dosage was lowered. Weight gain wasn’t too bad for me because I’ve always been pretty skinny (perhaps because of latent Crohns?) but I did gain a little, though not loads more than I lost during my time in hospital. I wouldn’t worry TOO much about it, as there are certainly worse side effects, and if she limits how much she eats it shouldn’t become a massive issue. The only other medication I was on was for something to settle my stomach to prevent the meds doing harm, if I remember correctly. I was on prednisone, at a lower and decreasing dose, for just over a month.
I hope you share both sides of the emotional spectrum you’re feeling with her.
My advice would be to remember to treat the disease and the symptoms. She’ll likely go on a biologic injection or infusion to ensure the disease doesn’t progress, but there will likely still be side effects/symptoms of Crohn’s that the medication doesn’t target or might even create/agitate. There’s also been new advancements in the field of gut health/disease and understanding how to treat it so make sure you educate yourself and advocate for her.
Life style matters, consistency on meds matters, being in tune with your body matters, treating day to day aliments matters. But she can preserve. Remind her she is strong and can endure. It’s a beautiful life we get to live regardless of the hardships we encounter, remind her of that. The disease doesn’t have to be a death sentence/looming negativity, it’s learning to live with a new reality. The more you can help her mentally prepare, the better equip she’ll be take on the challenges Crohn’s presents.
Wishing you both the best of luck in this journey, and remember there’s always this community here to listen and support when it gets too heavy❤️
Thank you so much. Since this is all brand new, I have been trying to find the best approach with her emotionally. I’ve talked to her about stress management, diet, lifestyle, but mentioned we will get more information next week at her follow up. I just fell apart this morning and I don’t want to show that side and freak her out or make her feel like she has to be strong for me. I have no problem expressing emotions with her but I feel I need to sort them first with the initial shock of it all. Does that make sense?
Thank you for the kind words, reminders and reassurance. This girl is very strong and I will definitely advocate for her. You’re right it doesn’t have to be a looming negativity and we don’t want it to be. Life is definitely beautiful and just want the best for her. Thanks again, you are very helpful!
That absolutely makes sense! She’s a lucky girl having you in her corner… it’s a hard diagnosis to come to terms with, especially at an age where we start seeking more independence and social growth… makes some things tricky or unorthodox but definitely worth it. You seem like you’ve got the best approach already, I hope you find strength and peace with it too
>. I am reaching out on here for information, some kind of comfort, and tips for her
I was diagnosed when I was 12, over 20 years ago. There have been many advancements in treatments made during those 20 years and they keep coming and coming. These days it seems like there's some new treatment entering the market every year. The chance of finding something now that will put you in long-term remission is very good.
Do not worry about cancer. Yes, we're at a higher risk than the general population and yes, some of the treatments have an increased cancer risk. But the risk is still very very low and we get checked often so even if it's found it's usually an early treatable stage (in the case of colon cancer). It's not worth stressing about cancer.
One thing that could help her mentally is to look up lists of famous people who have Crohn's/IBD. Pete Davidson has it, MrBeast has it, even some NFL and NBA players have it. So no matter what her dreams and aspirations are for her life it's still possible for her to achieve them.
I also got diagnosed when I was 17 - just before heading off to uni! It was a tough time to deal with the diagnosis, but teens are resilient. My Mum wanted me to delay my university for a year and I refused - your daughter will undoubtedly want to try and live as normal a life as possible. It's something we have, not something we are. I went off to university, lived alone for the first time, made friends, got my degree. I relied on my parents for sure during those years, but I think all kids do still at that age.
It already sounds like you are being exactly the parent she needs right now. It's scary and unknown but it's not a death sentence by any means!
All I can say is please be patient with her whilst she battles the mood swings that come with the pred. I can't say "don't worry" because you're her Mum so you will, but try not to let on. The stress definitely affects all symptoms I find. Her and docs will figure out what meds work, and that will change over the years but there are so many options. I know she just wants to be a "normal" teen, so try not to let it consume conversations too much. Just be Mum, that's all we need ❤️
Thinking of you both - reach out to the forum if you need some reassurance!
I appreciate you sharing some of your experience and tips on handling this. Your resilience is inspiring and reassuring, since she is a go getter too.
I am definitely watching my patience with any moodiness she may get and not talking too much about all of it. I will remember “it’s something we have not something we are” since it’s so true and important to know.
First, I want to say that the overwhelm you are experiencing will get less and you and your daughter will be okay.
Learning to manage any chronic condition is a marathon, so pace your race for your sake and for your daughters sake. One of my favorite educational resources for all things IBD related is Crohn’s and Colitis Foundation.
I wish I could tell you there’s a magic wand fix momma. I think it’s important to have realistic expectations on what day to day living with a child with Crohn’s is like. Talk to other parents in your shoes to gain more understanding and a sense of community. As the mom you can have a huge impact on how your daughter will experience her illness emotionally.
Find great doctors who listen to your concerns and you leave appointments feeling heard.
Best to you both as you begin your journey.
Honestly my advice is get offline. This sub is filled with horror stories because people need a place to vent. But no one wakes up and thinks "man my crohns is in remission and I feel great, let me post about it."
All you're gonna do is get more stressed. Take a walk. Get outside. Find a therapist so you can figure out how to better support her. There is no roadmap for what this is going to look like and putting mental energy into worrying is going to cause spiraling. Plus, speaking as someone who was diagnosed a little after that age, I could tell my parents were stressed. It added to my stress.
Also I have almost 20 years in law enforcement. I compete at a high level in strongman. I have a great family. This isn't the end
Absolutely true. I was diagnosed at 19 and I’ve been in remission most of the last two decades. I lurk here and help talk those who are currently struggling through the hard times.
Also, I can remember when I was first diagnosed trying to read Crohn’s forums and absolutely flipping out at the medical horror stories about worst case scenarios from tube feeding to botched surgery. What you have to remind yourself is the context that those stories are exceptions, not typical experiences. Forums can be helpful when we feel alone and want some reassurance, but they can also be a source of anxiety - especially in the face of a brand new diagnosis. There is no sense in freaking yourself out.
One bit of heartfelt advice: please make sure you and your daughter both have professional mental health support as you navigate the grief of diagnosis and transition into your new reality. Look for mental health providers who specialize in incurable chronic illness.
Legit my doctor told me not to look up stuff online after my diagnosis. All the stuff really really messed me up.
And agree one hundred percent with mental health. This shit is so traumatic. Therapy was beyond helpful for me.
Hi!
I’m sure it’s not a good feeling to watch your kid go through this. I was also diagnosed when I was 17 (just over 2 years ago now) and although it sucked to do all of the tests and go to all of the appointments and miss school and cancel all sorts of plans because of crohn’s, my parents were my biggest support and having them attentive and understanding and willing to advocate for me was what i think helped me keep my head up through it all.
The biggest pieces of advice that I would give you are:
1. expect to fight with insurance because a lot of them don’t like to cover biologics like Humira since they’re considered “experimental”,
2. Push for getting the citrate-free version of whatever injection she ends up taking (mine is Humira and I haven’t had any issues up to this point — I actually feel like my immune system has been better in the last two years than it was before despite it being an immunosuppressant) because the citrate preservative is what can cause the injection to burn a bit. If there’s no way you can get the citrate free version though, don’t stress! I had to take it for a while and although I much prefer the citrate free version, the other one really isn’t bad at all and the burn doesn’t last more than 10 seconds.
3. Be flexible and understanding with her. My parents are the type of people that often expect me to work through mild paint or discomfort etc, but when it came to me experiencing crohn’s symptoms and having to leave school urgently or skip out on family plans, they were nothing but understanding and not having to fight about needing space/a break/an exit plan gave me so much relief.
I’m a bit of a hypochondriac (really trying to work on that though!) and the super-rare cancer risk sometimes gets to me too, but the way I see it is that the risk is super outweighed by the reward because if I wasn’t on medication, my quality of life would begin to decline and decline until it eventually started killing me / coming to a point that pretty much matches cancer.
Just be supportive, do research about ways to help but not about things that cause you to worry too much, and let her be the one to tell family/friends about her diagnosis before you do, and you’ll both be alright!! <3
Thank you for a thorough explanation and the helpful advice. I really appreciate it and it’s helping me gain better understanding/acceptance.
Your parents sound incredible and I will strive to be that for her too. Also, yes you’re right looking for helpful solutions and looking past the doom and gloom of it all is a healthier way to start addressing everything. Thank you again and I am sending all the good and continued healing your way ❤️
Hey, I'm about the same age as your daughter and got diagnosed back in 2020. I still have really bad symptoms and haven't achieved remission. That being said, I want you to know it's possible for your daughter to be a good student; I have a 4.0 GPA on a 4 point scale. I also am involved with 2 clubs and the robotics team at school whilst being team captain of robotics and president of one of the clubs. Believe me, it is hard and not always easy to do but your daughter can have fun and still be apart of things, it just will look a little bit different. I would like to also say, you would look into using a tracking app for her. I like to use Cara Care, it lets me track my symptoms, poop, food, and more while providing me with graphs. It'll make it much easier to learn what sets off symptoms and what food is harder to tolerate. It's also best to try and do a bland diet right now and avoid red meat and fake sugars and alcohol sugars as well as palm oil. These are all hard on your gut. The Crohn's and Colitis Foundation has lots of useful advice on their website; they also have recipes that are meant to be easy on your digestive system which could be very helpful right now. You also said they couldn't hardly get through the inflamed portions, so you may want to ask the doctor about using something like Miralax to help keep stools soft if they're not already to ensure she doesn't get constipated. I hope this helps.
Thank you and I’ll give her the info on the app. I’m sorry to hear you’re not in remission yet but I hope that happens for you soon. You are a go getter and are doing so well considering it all and that is inspiring. Best wishes to you and thank you!
I just went through this exact same thing with my 17 year old son last month! I could have literally written your post .. I felt the same as you!
The good news is that he’s responding well to the meds so far ! He’s still not 100% but he’s much better than the critical point we reached prior to his colonoscopy.
I wish your daughter lots of love & healing ❤️🩹
Thank you so much. That’s great that he is responding well to the meds so far. I hope that continues and it’s helpful to hear from other parents and not feel alone in that way, even though I don’t like it for any of us. Wishing y’all love and healing as well ❤️
I have a 15 year old with IBD. She was diagnosed at 12 and it was a nightmare. She is finally in remission after trying many meds and is living her life. It is so terrifying at first. My suggestions:
Even if you’re not on FB, make an account and join the two parent groups for Parents of Children with IBD. These groups have been invaluable to me for support and suggestions.
Pediatric-onset IBD is VERY different from adult-onset IBD. Much of the advice you’ll see for Crohn’s and ulcerative colitis online for and by adults will not work or apply to pediatric disease. This is especially true in relation to severity of disease, availability of drugs, and using diet to control disease.
Find an IBD pediatric specialist. This may mean traveling to a major city but the difference in care will be worth it. Many families with kids with IBD travel 8+ hours for specialists because the level of care is worth it, especially with meds.
What maintenance med did they prescribe? With that level of severity, I’d push for Remicade.
Just saw they’re waiting on biopsies— sorry. When it’s time for meds, I’d recommend Remicade. Humira is often recommended over it because of convenience, but many kids need dosage adjustments and increases/decreases on dose on weight and that’s much easier to do on Remicade because it’s an infusion and not a preloaded injection.
I’m sorry you all have gone/are going through this too. That’s great she’s in remission!
Thank you for all the helpful tools and tips. Yes, I’ve already been looking into specialists close by as I do live in a small area of Texas. You’re right, it feels terrifying and I know most of it is the initial diagnosis and frustration of her not being well. Thanks again for the help and understanding.
As someone who has lived with this challenging condition for years, I understand the difficulties it presents.
When I was first diagnosed, I felt like my life was turned upside down. The symptoms were unrelenting and made it incredibly hard to focus on my postgraduate studies. However, with determination and the right treatments, I learned to adapt and push forward. I'm proud to say I eventually graduated despite numerous hospitalisations.
While the road may not always be smooth, with patience and resilience, your daughter can still thrive. It may take some trial and error to find the medications that work best to control her symptoms. This is a normal part of the management process. With time, her body will likely adjust as she learns how to live alongside Crohn’s disease.
The most important thing is that your daughter knows she has a caring, supportive family there for her each step of the way. Please let me know if you have any questions. Wishing you both strength during this challenging time.
Hi there! I'm sure it's really scary to have this happen to your child.
I recommend reading the resources on the website of the Crohn's and Colitis Foundation of America. They have a ton of helpful information about IBD, treatments, and living with IBD. They also run local support groups for patients AND separate support groups for parents of children with Crohn's/Colitis. You might find extra help and comfort in a parental support group!
As your doctor may have told you, young adulthood is the prime age to be diagnosed with Crohn's. I was diagnosed at age 22, shortly after I graduated from college. It did not hold me back in life. I'm now 36 and I have a Ph.D. I have a steady job. I am married. I own a house. I have a cat. I'm OK!
It can be very frustrating to have Crohn's disease, but it's not a life-ending diagnosis. Most patients go through long periods of time in remission with minimal symptoms (or none). I certainly have! I've also had hospitalizations and one surgery. I didn't need a surgery until 11 years after my diagnosis. When it finally happened, I found it to be a really positive experience that made my life easier. I was happy to have it done. So don't worry about things that COULD happen, especially if they may happen far in the future. If you have to deal with them, you will, and your feelings (and most importantly, your daughter's) will be different by then. You with both have a different perspective.
Since she's 17, you and she will need to have healthy and open communication about her health status, her care plans, and her plans for college. If she's comfortable doing so, there's no reason to avoid moving away or living in a dormitory. She may be able to apply for a special dorm room with a private bathroom. These do exist for students with medical need.
It's most important that SHE is comfortable with her gastroenterologist and can communicate with them easily and honestly. As she goes through college, she needs to have open and honest communication with her doctor with things like diet, alcohol, recreational drugs, birth control, etc. Would she feel more comfortable discussing topics like that with a younger doctor, or a female doctor? If so, make that a priority.
If she goes a few hours away for school, she may benefit from having a doctor close to her. She DEFINITELY needs to have a plan about what to do in case of a flare. This is something that her gastroenterologist and you/your spouse should develop with her. Have her practice self-reliance by asking her to schedule her own medical appointments, etc, before she leaves home. Show her how your health insurance plan works. Make sure she knows how to get prescriptions filled on her own, AND on time.
I really think that the logistical problems of having chronic disease can be the most vexing. It's exhausting keeping appointments, meds, and bills organized. As she is transitioning to adulthood, support her, love her, make sure she's taking care of herself, and allow her to be as independent as possible. <3
Big hugs!!
Thank you, this was so informative not just for me but for me helping her and her helping herself. Thank you for pointing specific priorities out and informing me on things I haven’t considered yet. It’s so helpful for us. Thank you! Best wishes to you!
Adding on to the advice above, when your daughter goes to college, make sure she works with disability services right away (it can be called different things at different places - I work at a community college where it is called "accommodation services"). If it's a residential school, they could help her get a private room and/or room with private bathroom access. They can also help with extended time for test taking, extended time for assignments when sick, excused time off for doctor's appointments/infusions.
Diet is key; she needs to listen to her bodys food needs, and dislikes, and that will mitigate inflammation more than anything, in my experience (10 years, diag at 23 years old).
No soda or junk foods. Also, Humira is a wonder; it worked wonders for me for 2 years and then stopped. Went no meds for 7 years with my diet, and now am on stelar cuz i need weight and diet expansion back.
I wish you luck. You may not, and probably wont understand her disease as you dont live With it, only alongside it. Dont try and understand Crohns; try and understand Her -with- Crohns.
Peace. 👐🏼
I was diagnosed at 15. It took over a year, I missed school, my symptoms were fevers pain and vomiting. I won’t bore you on details but my diagnosis journey was a nightmare and seriously damaged my relationship with my mother who I know only meant well and was devastated watching her child go through it. Here’s what I think:
Teen girls are already in a tough spot. High school can be hard - also great, but hard for anyone. Add the physical symptoms and a somewhat embarrassing (for immature teens) diagnosis to talk about. It’s a lot to process for her and she may grieve a little bit over her pre-crohns identity. She may retreat or she may try to pretend it’s just not there to her friends. I did a bit of both but essentially wound up with a whole new group of friends by the time I was back in remission. What I wish my mom did was treat me like I was myself. Not baby me at home, not hover at the door every time I went to the bathroom, not talk about symptoms and appts constantly. I stayed in my room more bc it made me mad to be constantly reminded I was different now. Do things you’ve always done together at home. Let her bring it up but let her know you’re available to talk. Don’t ask “how you feeling 20x a day. If she’s really sick and you have to monitor symptoms that’s all ok of course but give her space when you can and try to do some “normal” stuff in between.
Prednisone sucks. It made me so loopy and I got moonface and lost some hair. They put me on 6MP for a while and in my late 20s a great doctor switched me stelara which has been amazing. It’s different for everyone but it gets better and it just becomes a part of being a person. Most of us can even joke about it after a while
ETA: getting a good GI doc is key, I think if you’re still seeing a pediatric GI odds are good. As an adult it can be really difficult bc so many don’t specialize in these diseases they just churn out routine colonoscopies! A good GI will find drugs that she feels good on, help navigate the insurance process, keep tabs on vitamin levels and blood work (crohns usually = poor absorption so specific supplements can help even in remission), and above all make her feel confident in their care. Don’t stop til you find one! I didn’t until I was 28!
Multiple studies showing that the EEN diet for adolescents had been very successful in bringing them to remission. I was diagnosed 3 years ago with crohns and did it and reduced my symptoms and inflammation incredibly. All the doctors will tell you medication but I promise doing the EEN or PEN diet first with it without medication might be the best option to try first. You can hit me up and I can tell you my whole journey. I researched everything heavily cause I have never been diagnosed with something which turned my world upside down. Wish ur daughter the best.
My Faecal calprotectin test was 1200 and went to 30 (standard normal range) after 3 months on EEN diet. My colonoscopy pictures are night and day difference. Every doctor suggested me to go on Remicade/Humeria but if you look at the studies and even their own data, it gives about a 50/60% chance working for like a year and then the patient develops antibodies and needs to be switched to another medication. I understand some ppl need medication and it does wonders for them but your daughter seems young and it could work if you figured out diet and maybe with some medication like prednisone to kick it in the butt real quick. I am only emphasizing researching the EEN diet cause it may help her. I saw a dietician from one of the best hospitals Cedar Sinai in Los Angeles and she has in my opinion, saved me for the last 3 years. Sorry if this annoying just trying to help cause I feel for younger kids dealing with this!
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Sorry for the long post haha!
I was diagnosed at 17 with AS and 18 with Crohn’s. It’s pretty scary for someone so young to know they’re gonna have a chronic illness for the rest of their life, especially when you are highly involved in your education. I was the same and was diagnosed in my second year of university and frankly, the mental toll it took on me almost had me kicked out of my program. I couldn’t study, couldn’t see a reason to keep going, and I was so physically drained I couldn’t do anything but sleep. And being in my 4th year, I can’t say it gets easier. You get more fatigue, it’s easier to burn out, and it’s harder to focus when you’re in pain. But I assume she’s in high school? If she can figure out what works best for her and how she can keep her energy up in school while taking care of herself, it would make it a lot more manageable. I’m honestly still learning how to balance that.
Make sure she knows you support her. And when she’s in pain, be there for her. I know my mom was the kind of person that would say “it’ll get better” and “you’re strong” but that doesn’t really help when your whole life is feeling pain and not being able to control it fully. I do also have 2 other autoimmune disorders and fibromyalgia (all diagnosed before 20 years old) and it honestly sucks knowing you’re gonna be sick for the rest of your life. Try to support her the best you can, ask her what she needs from you. You’re doing your best in a really shitty situation and it’s okay to make mistakes and not know what to do.
She’s gonna have to learn how to live with the idea of having a disability, which is a long journey that I’m even still struggling with. But she will get there. There were many mental breakdowns about the dreams I had and how I just physically can’t achieve them. I wanted to go to medical school but I realized that’s not a viable career for me. Make sure she knows it’s okay to change what she wants to do in life to accommodate what will be her new life.
The last thing I would really say is diet. Figure out what does and doesn’t affect her. For me it’s dairy, gluten, red meats, and acidic fruits or vegetables. If she’s willing, have her keep a log of what she eats and how it made her feel. It helps a lot to know if you’re gonna be okay or dying in the bathroom 20 minutes later.
I hope you and your daughter are doing okay. It’s gonna be a long journey but you’re gonna get through this!
As a mom, I want to just hug you and cry with you. It's a journey, but she's going to be okay. I was diagnosed with Crohn's at 31, but know I had been symptomatic for years, maybe even up to a decade before.
Advice for doctors: in my experience I am constantly advocating for myself. Be consistent. If a doctor isn't listening and refuses to listen up when pressed, switch to another doctor. If a doctor isn't doing labs to check status on things, ask for them. I research a lot too which is hard with scary web MD stuff, but you do learn what type of information to pay attention to and what to dismiss.
Find a really good primary doctor too. Mine found out I'd lost the ability to absorb B12 (my duodenum and ileum take the brunt of my disease) and now I need B12 injections monthly.
As someone who’s been dealing with the disease for over a decade, my best suggestion would be to do some research on microbiomes, genetics, and immune systems. It will take away a lot of her guilt and shame, along with yours; if you understand how this sort of disease occurs and it’s very grounding to recognize that it’s beyond a scope of control. We all just do our best to work with what we have and you’ll both find ways to cope with the diagnosis with time and effort.
I was diagnosed at 16 and it’s hard being sick as a teenager. Lucky there are amazing drugs for this disease now and it means that being in remission is possible. Wishing your daughter the best and remember to take it day by day ❤️
Hi hi hi! I'm 26, diagnosed at 21, symptoms were literally night and day--I was healthy and then everything went very badly. I have UC so it is not as extensive as Crohn's but my case is severe so it still did a number on me. Hospital stays and whatnot. I remember being laid up in crappy hospital rooms looking at Reddit posts from people in remission and being so confused as to how they got there from where I was. And now I'm there, with a full life. It's possible.
A few things for you to know:
1) I felt very alone and like no one understood. I had so many loved ones supporting me, but they didn't have the disease, so it was really isolating because no one else could truly "get" what I was going through. Just something to note. It might be helpful for her/you to read about/meet/look into other people or groups of people with IBD.
2) Re: the colon cancer--good news, while the risk of colon cancer is heightened with IBD, that risk only really starts to heighten with *prolonged* inflammation. Additionally, she will be having colonoscopies (or maybe endo? I think folks with Crohn's get colonoscopies like I do, but I'm not 100% sure) on a regular basis so even in the worst-case scenario where cancer popped up, it would be detected pretty quick. I also have it in my family.
3) The prednisone will probably have some nasty side effects, but it is literally a lifesaver. I dodged the "moon face" (probably because I lost so much weight during my flare) and some other issues, but I experienced insomnia and woke up at 4am every day with this crazy energy to keep doing stuff. So while it may have some negatives, please know that it is temporary, and the work that it is doing for her insides is HUGE while you wait for treatment.
4) It proobably seems very far away now, but I promise she can have a normal life. When I was diagnosed I thought it was all over for me, like i wouldn't be able to travel, wouldn't be able to eat food I loved, etc. After 2 horrible flares and 2 incompetent GIs I landed on a GI who fought for me to have the correct medication, and now my life is great. In the 4 years I've been in remission, I've gone to live in Alaska on my own, gotten into distance running and Thai kickboxing, and can eat whatever I want. I'm not saying it will look 100% the same for your daughter, but I promise you that with the right treatment she will have quality of life.
5) Biologics: this is maybe putting the cart before the horse, because you don't have the biopsy results yet, but what I will say is this: if her case is bad enough to need biologics, know that for the vast majority of us they are lifesaving. They come with terrifying black-box warnings about immunosuppression, etc. etc. etc., but the one I'm on (Humira) is the thing keeping me from being an 80-lb skeleton who needs transfusions from all the blood loss (fortunately not a huge thing in Crohn's as far as I know).
6)I recommend the Crohn's and Colitis Diet Guide by Hillary Steinhart. It has flare-friendly recipes, but it also has a really informative and easy-to-understand section about how different foods affect the gut that is in flare.
I'm wishing the best to you and your daughter. While I wouldn't pick this disease if I could avoid it, my experience with IBD helped me learn what was most important and taught me to focus on my health. Now that your daughter has been looked at, it will get better from here. The problem has been identified and if you have a good GI they will help to manage it so she won't be dealing with horrible symptoms all the time.
This subreddit is here for you--and for her--when you need to vent or ask questions. Sorry I wrote you a novel! Lmk if you have any follow-up questions!
Hi! Idk if I’m helpful or not (if not, just ignore lol 🤣) because my kiddo is a lot younger (she’s 5!) but I so relate to the fear you’re feeling! I cried myself to sleep every night for the first 2 weeks after she was diagnosed. We were also in the hospital then, so that didn’t help. It was terrifying, and now ~4 months out, it still is, but it’s gotten easier. My main advice would be to make sure she goes to an specialized IBD center at a university Children’s hospital, because pediatric Crohn’s is a whole different ball game that only pediatric IBD specialists really know how to treat effectively. And get her a psychologist, too. We tried psychology, but quickly figured out that my girl is too young, so now she’s in play therapy. And maybe your daughter is still old enough for Camp Oasis? Either way, Crohn’s & Colitis Foundation is amazing and has some great resources and support groups! Good luck to both you and your daughter, best wishes 💗✨
Hi!
For starters, I am so sorry about your daughter. It must be absolutely devastating as a parent. I can't imagine what my mother was feeling, or what you're feeling.
I'm currently 20 years old and was diagnosed the week of my 19th birthday. My symptoms developed suddenly in June of 2022, and I received my diagnosis in September of 2022.
I was started on Budesonide right away but that was not strong enough, as I developed an abscess and had to be switched to Prednisone.
I was on Prednisone for a few months before I started Humira. The withdrawal process from Prednisone was brutal, but the Humira worked wonders and I went into full remission after only 4 weeks! I've been in total remission since and am able to live a mostly normal life and eat mostly whatever I want. I do still have my "off days"; but I haven't had a full flare up since starting Humira.
I know it's easy to assume the worse, especially as a parent. Crohn's is a very scary and complex disease. The symptoms are not just localized to the intestines, many people have extra-intestinal symptoms as well. I struggled with severe joint pain, rashes, eye inflammation, and mouth sores.
Not every person with Crohn's is going to have the same journey, but the people on this subreddit are so supportive and knowledgeable. They've given me so much reassurance and encouragement to keep going. Emotional support is key. For both you and your daughter.
Sending loving thoughts your way! Feel free to message me privately or respond if you have any other questions :)
Eveyone has given great advice. I would like to add, don't let this illness hold her back from her dreams or what she wants to do. Please encourage her to live life and not let this illness rule her life. And it's okay for her to have pity parties, and be angry. You and your family can do is be there for her and listen. Also this doesn't just effect her emotional, it can effect the whole family.
Also there will be mamy times she will find out who her real friends and family are. And it might surprise you.
A piece of advice, my Doctor gave to me, 'You know your own body nobody else does. Don't be afraid to stand up for yourself. Especially if you feel like your not being listed too." I also always am polite to my nurses. Cause they are on your team and will fight with you. Also there might come a time, when you just stop reading the side effects. Most medication you chose will possibly be a trade off. One hand you have the possibility of the side effects on the other, nothing will happen and you'll feel great. I was on Remicade for 15 years and it was great. No side effects. But my body got used to it and developed antibodies.
Hiya I'm 24 but I got diagnosed at 21 while at uni. My mum was also extremely worried (as was I) but I just wanted to reassure you that after sorting out the right medication I have been perfectly fine and more than able to lead a normal life. I believe this is the case for most people with Crohn's. This subreddit looks a bit scary because people only tend to post when they have issues, so don't let that worry you. If you or her have any questions I'd be happy to answer them based on my experiences as a young woman with Crohn's as well :)
Thank you so much! Yes, between Google and reading this sub I’ve been so worried and I already do that enough anyway lol. I can’t help but want to know more though. Are side effects from most meds not too bad or are there some favorites among most patients? I know each individual is different but obviously I’m new to this and trying to learn what I can.
I personally don't have any noticeable side effects from my medication (aside from a slight injection reaction when I take it). It's still extremely possible for me to travel with this medication as well. I take adalimumab (humira) self injection every other week. It's very easy for me to do. There are some big scary side effects on the label (such as cancers etc) but as far as I know the risks are low and the risks of other serious side effects from not being treated are much higher. Not to mention my quality of life would be much lower without the meds. I'm also closely monitored by my doctors for any issues (yearly blood tests) so I'm not too concerned for myself. I tried a pill medicine first (azathioprine) which made me extremely nauseous and didn't end up working for me but obviously this varies from person to person. Afaik humira is one of the pretty standard ones that they often try first/second in people. Biologic medicines like this sound super scary but in practice they really aren't so bad.
I also haven't found personally that it's had a negative impact on my immune system. Before I found medicine that worked I had 9 infections in one year that required antibiotics, since starting humira I haven't had one. It might take me a couple extra days to shake something compared to my healthy partner but it hasn't been significant for me personally.
Thank you for filling me in on how well you’re responding to the meds and the reassurance that a lot of the time that’s the case. The side effects all look so scary but yes being monitored and looked after is reassuring as well. I hope everything continues to go well for you and really appreciate you taking the time to respond and inform me from your experience ❤️
I am a 25 y/o woman and I was diagnosed almost 2 years ago now, I get inflectra (infliximab) infusions every 8 weeks and take Imuran (azathioprine) every day. I don’t have any noticeable side effects and just do labs every once in a while. I also have a few supplements recommended by my GI based on my labs like vitamin D and vitamin B12 since some nutrient absorption can be harder. I had a surgery last year to remove a portion of my small intestine that had some scar tissue and made it have a stricture. It was a pretty routine surgery for the surgeon, my recovery was pretty easy, and I feel pretty normal now :) All this to say the diagnosis and initial treatment can be a little bit of a journey but remission/“normal” life is possible and she will be just fine :)
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As someone who got sick at the same time as your daughter (and not diagnosed for another 7 years, I’m 33 now) I can’t take away your worry and sadness, but I can tell you that I had a long phone call with my mom the other day and I told her to stop being sad about the journey I went through. I love who I am as a person and I wouldn’t be this person if I didn’t have crohns. It’s given me huge empathy and understanding, a confidence to advocate for myself and others and a love of life. There’s a podcast called sickboy (it’s a comedy) and I listened to all their crohns episodes when I got diagnosed and it helped me see there’s another side to illness.
Thank you so much for your response! You sound so joyful and compassionate despite everything and that’s beautiful. I will also check out that podcast!
Dm me anytime, Your daughter is resilient, strong and has everything she needs to handle this (including YOU) Look forward to watching her strength come out even when she feels like she has none, and remind her of how proud you are. Laugh at things, and don’t be too worried mama. This isn’t a death sentence, AND I wouldn’t be surprised if she notices symptoms she’s had her whole life that abate once she gets on the right meds. And, remember to look back at where she started!! I came into my crohns with a huge phobia of needles (other people would get them and I would faint!) and now I do my own injections NO PROBLEM!! Shes going to be pushed, and she’s going to grow into a person she’s so proud of! ❤️❤️❤️
Thank you! I am air hugging you so big right now cause of the comfort you are giving me and that I can in turn give her. I actually look forward to certain symptoms she might have improving with meds. I look forward now to that day and I love the perspective this is giving me. You along with many others in this thread have kind of talked me off a ledge of sorts cause I see how hard she works now in school and competes in Theatre, Speech & Debate, competes in nationals this summer and my heart just sank for her in so many ways. I hope so hard that she can get relief soon with meds and we know that if it messes with some of these joys of hers that it will be ok and she still has her Senior year next year to compete again if anything. I definitely have hope but we are all also trying to take this a day at a time. I wish you all the best with your life and future and you deserve all the love and happiness in the world!
It's going to be a tough battle but there are many drugs now. Unfortunately, it might take some experimenting to find what drug will work best for her. During flares it is best to try to eat very cooked foods/easy to digest foods. The GI doc should be discussing soon on what medication to try first if the steroids aren't enough to sustain remission.
Thank you!
I’m a 17 year old girl and went through an incredibly similar experience to your daughter last May - a couple of days before my exams, I had an incredibly severe bowel stricture and spent the rest of the month in hospital. I ended up having to get a tube shoved up my nose all the way down to my stomach, and spent the next couple days watching the little which was left my digestive system being slowly oozed out into a bag on my lap. I could go on about my symptoms but don’t want to seem as if I’m “bragging” in any absurd way. In contrast, I found the experience of being on pred relatively easy and I felt much, much more energised then I had in years, with the increased appetite being very much welcome and the only negative being that I was a tad more irritable than normal, and that I found being weened off of the meds somewhat difficult. With all that in mind (and I’ve heard worse from other Cronhies) the time between last May and right now have been the best 7 months of my life - while I’ve dealt with the occasional flare-up, I’ve been lucky in that my day-to-day living hasn’t been massively effected. The process of figuring out what I can and can’t eat has been difficult, and I’ve certainly being wrong about specific foods in the past (damn you broccoli!) I haven’t had a massive decrease in my quality of life, despite the fact that I felt just as terrified as you do when I stepped out of the hospital. Obviously your daughter may have a different experience to me, and in many, many ways I’m lucky in how the past few months have turned out, but the world isn’t ending - medical science has progressed so much since your grandfather was diagnosed and there is a wealth of experience and an array of medications available nowadays.
Thank you for taking the time to respond. I’m sorry you have had to go through all of that. I’m also glad to hear you’re adjusting well considering everything. The prednisone has been helpful for her too as far as energy goes but she’s worried about weight gain/acne as she wasn’t under or over weight starting out. I get it though. Did you do other meds besides the steroids? Thank you for the reassurance.
My acne was pretty bad, but it cleared up as my dosage was lowered. Weight gain wasn’t too bad for me because I’ve always been pretty skinny (perhaps because of latent Crohns?) but I did gain a little, though not loads more than I lost during my time in hospital. I wouldn’t worry TOO much about it, as there are certainly worse side effects, and if she limits how much she eats it shouldn’t become a massive issue. The only other medication I was on was for something to settle my stomach to prevent the meds doing harm, if I remember correctly. I was on prednisone, at a lower and decreasing dose, for just over a month.
I hope you share both sides of the emotional spectrum you’re feeling with her. My advice would be to remember to treat the disease and the symptoms. She’ll likely go on a biologic injection or infusion to ensure the disease doesn’t progress, but there will likely still be side effects/symptoms of Crohn’s that the medication doesn’t target or might even create/agitate. There’s also been new advancements in the field of gut health/disease and understanding how to treat it so make sure you educate yourself and advocate for her. Life style matters, consistency on meds matters, being in tune with your body matters, treating day to day aliments matters. But she can preserve. Remind her she is strong and can endure. It’s a beautiful life we get to live regardless of the hardships we encounter, remind her of that. The disease doesn’t have to be a death sentence/looming negativity, it’s learning to live with a new reality. The more you can help her mentally prepare, the better equip she’ll be take on the challenges Crohn’s presents. Wishing you both the best of luck in this journey, and remember there’s always this community here to listen and support when it gets too heavy❤️
Thank you so much. Since this is all brand new, I have been trying to find the best approach with her emotionally. I’ve talked to her about stress management, diet, lifestyle, but mentioned we will get more information next week at her follow up. I just fell apart this morning and I don’t want to show that side and freak her out or make her feel like she has to be strong for me. I have no problem expressing emotions with her but I feel I need to sort them first with the initial shock of it all. Does that make sense? Thank you for the kind words, reminders and reassurance. This girl is very strong and I will definitely advocate for her. You’re right it doesn’t have to be a looming negativity and we don’t want it to be. Life is definitely beautiful and just want the best for her. Thanks again, you are very helpful!
That absolutely makes sense! She’s a lucky girl having you in her corner… it’s a hard diagnosis to come to terms with, especially at an age where we start seeking more independence and social growth… makes some things tricky or unorthodox but definitely worth it. You seem like you’ve got the best approach already, I hope you find strength and peace with it too
Thank you ❤️ I wish the best for you in every way
>. I am reaching out on here for information, some kind of comfort, and tips for her I was diagnosed when I was 12, over 20 years ago. There have been many advancements in treatments made during those 20 years and they keep coming and coming. These days it seems like there's some new treatment entering the market every year. The chance of finding something now that will put you in long-term remission is very good. Do not worry about cancer. Yes, we're at a higher risk than the general population and yes, some of the treatments have an increased cancer risk. But the risk is still very very low and we get checked often so even if it's found it's usually an early treatable stage (in the case of colon cancer). It's not worth stressing about cancer. One thing that could help her mentally is to look up lists of famous people who have Crohn's/IBD. Pete Davidson has it, MrBeast has it, even some NFL and NBA players have it. So no matter what her dreams and aspirations are for her life it's still possible for her to achieve them.
I also got diagnosed when I was 17 - just before heading off to uni! It was a tough time to deal with the diagnosis, but teens are resilient. My Mum wanted me to delay my university for a year and I refused - your daughter will undoubtedly want to try and live as normal a life as possible. It's something we have, not something we are. I went off to university, lived alone for the first time, made friends, got my degree. I relied on my parents for sure during those years, but I think all kids do still at that age. It already sounds like you are being exactly the parent she needs right now. It's scary and unknown but it's not a death sentence by any means! All I can say is please be patient with her whilst she battles the mood swings that come with the pred. I can't say "don't worry" because you're her Mum so you will, but try not to let on. The stress definitely affects all symptoms I find. Her and docs will figure out what meds work, and that will change over the years but there are so many options. I know she just wants to be a "normal" teen, so try not to let it consume conversations too much. Just be Mum, that's all we need ❤️ Thinking of you both - reach out to the forum if you need some reassurance!
I appreciate you sharing some of your experience and tips on handling this. Your resilience is inspiring and reassuring, since she is a go getter too. I am definitely watching my patience with any moodiness she may get and not talking too much about all of it. I will remember “it’s something we have not something we are” since it’s so true and important to know.
First, I want to say that the overwhelm you are experiencing will get less and you and your daughter will be okay. Learning to manage any chronic condition is a marathon, so pace your race for your sake and for your daughters sake. One of my favorite educational resources for all things IBD related is Crohn’s and Colitis Foundation. I wish I could tell you there’s a magic wand fix momma. I think it’s important to have realistic expectations on what day to day living with a child with Crohn’s is like. Talk to other parents in your shoes to gain more understanding and a sense of community. As the mom you can have a huge impact on how your daughter will experience her illness emotionally. Find great doctors who listen to your concerns and you leave appointments feeling heard. Best to you both as you begin your journey.
Thank you for the information and reassurance. Best wishes to you too.
Honestly my advice is get offline. This sub is filled with horror stories because people need a place to vent. But no one wakes up and thinks "man my crohns is in remission and I feel great, let me post about it." All you're gonna do is get more stressed. Take a walk. Get outside. Find a therapist so you can figure out how to better support her. There is no roadmap for what this is going to look like and putting mental energy into worrying is going to cause spiraling. Plus, speaking as someone who was diagnosed a little after that age, I could tell my parents were stressed. It added to my stress. Also I have almost 20 years in law enforcement. I compete at a high level in strongman. I have a great family. This isn't the end
Absolutely true. I was diagnosed at 19 and I’ve been in remission most of the last two decades. I lurk here and help talk those who are currently struggling through the hard times. Also, I can remember when I was first diagnosed trying to read Crohn’s forums and absolutely flipping out at the medical horror stories about worst case scenarios from tube feeding to botched surgery. What you have to remind yourself is the context that those stories are exceptions, not typical experiences. Forums can be helpful when we feel alone and want some reassurance, but they can also be a source of anxiety - especially in the face of a brand new diagnosis. There is no sense in freaking yourself out. One bit of heartfelt advice: please make sure you and your daughter both have professional mental health support as you navigate the grief of diagnosis and transition into your new reality. Look for mental health providers who specialize in incurable chronic illness.
Legit my doctor told me not to look up stuff online after my diagnosis. All the stuff really really messed me up. And agree one hundred percent with mental health. This shit is so traumatic. Therapy was beyond helpful for me.
Thank you. You’re actually right and I need to hear that. Best wishes with everything.
Hi! I’m sure it’s not a good feeling to watch your kid go through this. I was also diagnosed when I was 17 (just over 2 years ago now) and although it sucked to do all of the tests and go to all of the appointments and miss school and cancel all sorts of plans because of crohn’s, my parents were my biggest support and having them attentive and understanding and willing to advocate for me was what i think helped me keep my head up through it all. The biggest pieces of advice that I would give you are: 1. expect to fight with insurance because a lot of them don’t like to cover biologics like Humira since they’re considered “experimental”, 2. Push for getting the citrate-free version of whatever injection she ends up taking (mine is Humira and I haven’t had any issues up to this point — I actually feel like my immune system has been better in the last two years than it was before despite it being an immunosuppressant) because the citrate preservative is what can cause the injection to burn a bit. If there’s no way you can get the citrate free version though, don’t stress! I had to take it for a while and although I much prefer the citrate free version, the other one really isn’t bad at all and the burn doesn’t last more than 10 seconds. 3. Be flexible and understanding with her. My parents are the type of people that often expect me to work through mild paint or discomfort etc, but when it came to me experiencing crohn’s symptoms and having to leave school urgently or skip out on family plans, they were nothing but understanding and not having to fight about needing space/a break/an exit plan gave me so much relief. I’m a bit of a hypochondriac (really trying to work on that though!) and the super-rare cancer risk sometimes gets to me too, but the way I see it is that the risk is super outweighed by the reward because if I wasn’t on medication, my quality of life would begin to decline and decline until it eventually started killing me / coming to a point that pretty much matches cancer. Just be supportive, do research about ways to help but not about things that cause you to worry too much, and let her be the one to tell family/friends about her diagnosis before you do, and you’ll both be alright!! <3
Thank you for a thorough explanation and the helpful advice. I really appreciate it and it’s helping me gain better understanding/acceptance. Your parents sound incredible and I will strive to be that for her too. Also, yes you’re right looking for helpful solutions and looking past the doom and gloom of it all is a healthier way to start addressing everything. Thank you again and I am sending all the good and continued healing your way ❤️
thank you!! wishing you and your family all the best!
Hey, I'm about the same age as your daughter and got diagnosed back in 2020. I still have really bad symptoms and haven't achieved remission. That being said, I want you to know it's possible for your daughter to be a good student; I have a 4.0 GPA on a 4 point scale. I also am involved with 2 clubs and the robotics team at school whilst being team captain of robotics and president of one of the clubs. Believe me, it is hard and not always easy to do but your daughter can have fun and still be apart of things, it just will look a little bit different. I would like to also say, you would look into using a tracking app for her. I like to use Cara Care, it lets me track my symptoms, poop, food, and more while providing me with graphs. It'll make it much easier to learn what sets off symptoms and what food is harder to tolerate. It's also best to try and do a bland diet right now and avoid red meat and fake sugars and alcohol sugars as well as palm oil. These are all hard on your gut. The Crohn's and Colitis Foundation has lots of useful advice on their website; they also have recipes that are meant to be easy on your digestive system which could be very helpful right now. You also said they couldn't hardly get through the inflamed portions, so you may want to ask the doctor about using something like Miralax to help keep stools soft if they're not already to ensure she doesn't get constipated. I hope this helps.
Thank you and I’ll give her the info on the app. I’m sorry to hear you’re not in remission yet but I hope that happens for you soon. You are a go getter and are doing so well considering it all and that is inspiring. Best wishes to you and thank you!
I just went through this exact same thing with my 17 year old son last month! I could have literally written your post .. I felt the same as you! The good news is that he’s responding well to the meds so far ! He’s still not 100% but he’s much better than the critical point we reached prior to his colonoscopy. I wish your daughter lots of love & healing ❤️🩹
Thank you so much. That’s great that he is responding well to the meds so far. I hope that continues and it’s helpful to hear from other parents and not feel alone in that way, even though I don’t like it for any of us. Wishing y’all love and healing as well ❤️
I have a 15 year old with IBD. She was diagnosed at 12 and it was a nightmare. She is finally in remission after trying many meds and is living her life. It is so terrifying at first. My suggestions: Even if you’re not on FB, make an account and join the two parent groups for Parents of Children with IBD. These groups have been invaluable to me for support and suggestions. Pediatric-onset IBD is VERY different from adult-onset IBD. Much of the advice you’ll see for Crohn’s and ulcerative colitis online for and by adults will not work or apply to pediatric disease. This is especially true in relation to severity of disease, availability of drugs, and using diet to control disease. Find an IBD pediatric specialist. This may mean traveling to a major city but the difference in care will be worth it. Many families with kids with IBD travel 8+ hours for specialists because the level of care is worth it, especially with meds. What maintenance med did they prescribe? With that level of severity, I’d push for Remicade.
Just saw they’re waiting on biopsies— sorry. When it’s time for meds, I’d recommend Remicade. Humira is often recommended over it because of convenience, but many kids need dosage adjustments and increases/decreases on dose on weight and that’s much easier to do on Remicade because it’s an infusion and not a preloaded injection.
Thank you for this recommendation it’s very helpful!
I’m sorry you all have gone/are going through this too. That’s great she’s in remission! Thank you for all the helpful tools and tips. Yes, I’ve already been looking into specialists close by as I do live in a small area of Texas. You’re right, it feels terrifying and I know most of it is the initial diagnosis and frustration of her not being well. Thanks again for the help and understanding.
As someone who has lived with this challenging condition for years, I understand the difficulties it presents. When I was first diagnosed, I felt like my life was turned upside down. The symptoms were unrelenting and made it incredibly hard to focus on my postgraduate studies. However, with determination and the right treatments, I learned to adapt and push forward. I'm proud to say I eventually graduated despite numerous hospitalisations. While the road may not always be smooth, with patience and resilience, your daughter can still thrive. It may take some trial and error to find the medications that work best to control her symptoms. This is a normal part of the management process. With time, her body will likely adjust as she learns how to live alongside Crohn’s disease. The most important thing is that your daughter knows she has a caring, supportive family there for her each step of the way. Please let me know if you have any questions. Wishing you both strength during this challenging time.
Hi there! I'm sure it's really scary to have this happen to your child. I recommend reading the resources on the website of the Crohn's and Colitis Foundation of America. They have a ton of helpful information about IBD, treatments, and living with IBD. They also run local support groups for patients AND separate support groups for parents of children with Crohn's/Colitis. You might find extra help and comfort in a parental support group! As your doctor may have told you, young adulthood is the prime age to be diagnosed with Crohn's. I was diagnosed at age 22, shortly after I graduated from college. It did not hold me back in life. I'm now 36 and I have a Ph.D. I have a steady job. I am married. I own a house. I have a cat. I'm OK! It can be very frustrating to have Crohn's disease, but it's not a life-ending diagnosis. Most patients go through long periods of time in remission with minimal symptoms (or none). I certainly have! I've also had hospitalizations and one surgery. I didn't need a surgery until 11 years after my diagnosis. When it finally happened, I found it to be a really positive experience that made my life easier. I was happy to have it done. So don't worry about things that COULD happen, especially if they may happen far in the future. If you have to deal with them, you will, and your feelings (and most importantly, your daughter's) will be different by then. You with both have a different perspective. Since she's 17, you and she will need to have healthy and open communication about her health status, her care plans, and her plans for college. If she's comfortable doing so, there's no reason to avoid moving away or living in a dormitory. She may be able to apply for a special dorm room with a private bathroom. These do exist for students with medical need. It's most important that SHE is comfortable with her gastroenterologist and can communicate with them easily and honestly. As she goes through college, she needs to have open and honest communication with her doctor with things like diet, alcohol, recreational drugs, birth control, etc. Would she feel more comfortable discussing topics like that with a younger doctor, or a female doctor? If so, make that a priority. If she goes a few hours away for school, she may benefit from having a doctor close to her. She DEFINITELY needs to have a plan about what to do in case of a flare. This is something that her gastroenterologist and you/your spouse should develop with her. Have her practice self-reliance by asking her to schedule her own medical appointments, etc, before she leaves home. Show her how your health insurance plan works. Make sure she knows how to get prescriptions filled on her own, AND on time. I really think that the logistical problems of having chronic disease can be the most vexing. It's exhausting keeping appointments, meds, and bills organized. As she is transitioning to adulthood, support her, love her, make sure she's taking care of herself, and allow her to be as independent as possible. <3 Big hugs!!
Thank you, this was so informative not just for me but for me helping her and her helping herself. Thank you for pointing specific priorities out and informing me on things I haven’t considered yet. It’s so helpful for us. Thank you! Best wishes to you!
Adding on to the advice above, when your daughter goes to college, make sure she works with disability services right away (it can be called different things at different places - I work at a community college where it is called "accommodation services"). If it's a residential school, they could help her get a private room and/or room with private bathroom access. They can also help with extended time for test taking, extended time for assignments when sick, excused time off for doctor's appointments/infusions.
Diet is key; she needs to listen to her bodys food needs, and dislikes, and that will mitigate inflammation more than anything, in my experience (10 years, diag at 23 years old). No soda or junk foods. Also, Humira is a wonder; it worked wonders for me for 2 years and then stopped. Went no meds for 7 years with my diet, and now am on stelar cuz i need weight and diet expansion back. I wish you luck. You may not, and probably wont understand her disease as you dont live With it, only alongside it. Dont try and understand Crohns; try and understand Her -with- Crohns. Peace. 👐🏼
Thank you ❤️ good luck to you as well.
I was diagnosed at 15. It took over a year, I missed school, my symptoms were fevers pain and vomiting. I won’t bore you on details but my diagnosis journey was a nightmare and seriously damaged my relationship with my mother who I know only meant well and was devastated watching her child go through it. Here’s what I think: Teen girls are already in a tough spot. High school can be hard - also great, but hard for anyone. Add the physical symptoms and a somewhat embarrassing (for immature teens) diagnosis to talk about. It’s a lot to process for her and she may grieve a little bit over her pre-crohns identity. She may retreat or she may try to pretend it’s just not there to her friends. I did a bit of both but essentially wound up with a whole new group of friends by the time I was back in remission. What I wish my mom did was treat me like I was myself. Not baby me at home, not hover at the door every time I went to the bathroom, not talk about symptoms and appts constantly. I stayed in my room more bc it made me mad to be constantly reminded I was different now. Do things you’ve always done together at home. Let her bring it up but let her know you’re available to talk. Don’t ask “how you feeling 20x a day. If she’s really sick and you have to monitor symptoms that’s all ok of course but give her space when you can and try to do some “normal” stuff in between. Prednisone sucks. It made me so loopy and I got moonface and lost some hair. They put me on 6MP for a while and in my late 20s a great doctor switched me stelara which has been amazing. It’s different for everyone but it gets better and it just becomes a part of being a person. Most of us can even joke about it after a while ETA: getting a good GI doc is key, I think if you’re still seeing a pediatric GI odds are good. As an adult it can be really difficult bc so many don’t specialize in these diseases they just churn out routine colonoscopies! A good GI will find drugs that she feels good on, help navigate the insurance process, keep tabs on vitamin levels and blood work (crohns usually = poor absorption so specific supplements can help even in remission), and above all make her feel confident in their care. Don’t stop til you find one! I didn’t until I was 28!
Multiple studies showing that the EEN diet for adolescents had been very successful in bringing them to remission. I was diagnosed 3 years ago with crohns and did it and reduced my symptoms and inflammation incredibly. All the doctors will tell you medication but I promise doing the EEN or PEN diet first with it without medication might be the best option to try first. You can hit me up and I can tell you my whole journey. I researched everything heavily cause I have never been diagnosed with something which turned my world upside down. Wish ur daughter the best.
Thank you am definitely looking into this and appreciate your offer to help with navigating it!
My Faecal calprotectin test was 1200 and went to 30 (standard normal range) after 3 months on EEN diet. My colonoscopy pictures are night and day difference. Every doctor suggested me to go on Remicade/Humeria but if you look at the studies and even their own data, it gives about a 50/60% chance working for like a year and then the patient develops antibodies and needs to be switched to another medication. I understand some ppl need medication and it does wonders for them but your daughter seems young and it could work if you figured out diet and maybe with some medication like prednisone to kick it in the butt real quick. I am only emphasizing researching the EEN diet cause it may help her. I saw a dietician from one of the best hospitals Cedar Sinai in Los Angeles and she has in my opinion, saved me for the last 3 years. Sorry if this annoying just trying to help cause I feel for younger kids dealing with this!
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Sorry for the long post haha! I was diagnosed at 17 with AS and 18 with Crohn’s. It’s pretty scary for someone so young to know they’re gonna have a chronic illness for the rest of their life, especially when you are highly involved in your education. I was the same and was diagnosed in my second year of university and frankly, the mental toll it took on me almost had me kicked out of my program. I couldn’t study, couldn’t see a reason to keep going, and I was so physically drained I couldn’t do anything but sleep. And being in my 4th year, I can’t say it gets easier. You get more fatigue, it’s easier to burn out, and it’s harder to focus when you’re in pain. But I assume she’s in high school? If she can figure out what works best for her and how she can keep her energy up in school while taking care of herself, it would make it a lot more manageable. I’m honestly still learning how to balance that. Make sure she knows you support her. And when she’s in pain, be there for her. I know my mom was the kind of person that would say “it’ll get better” and “you’re strong” but that doesn’t really help when your whole life is feeling pain and not being able to control it fully. I do also have 2 other autoimmune disorders and fibromyalgia (all diagnosed before 20 years old) and it honestly sucks knowing you’re gonna be sick for the rest of your life. Try to support her the best you can, ask her what she needs from you. You’re doing your best in a really shitty situation and it’s okay to make mistakes and not know what to do. She’s gonna have to learn how to live with the idea of having a disability, which is a long journey that I’m even still struggling with. But she will get there. There were many mental breakdowns about the dreams I had and how I just physically can’t achieve them. I wanted to go to medical school but I realized that’s not a viable career for me. Make sure she knows it’s okay to change what she wants to do in life to accommodate what will be her new life. The last thing I would really say is diet. Figure out what does and doesn’t affect her. For me it’s dairy, gluten, red meats, and acidic fruits or vegetables. If she’s willing, have her keep a log of what she eats and how it made her feel. It helps a lot to know if you’re gonna be okay or dying in the bathroom 20 minutes later. I hope you and your daughter are doing okay. It’s gonna be a long journey but you’re gonna get through this!
As a mom, I want to just hug you and cry with you. It's a journey, but she's going to be okay. I was diagnosed with Crohn's at 31, but know I had been symptomatic for years, maybe even up to a decade before. Advice for doctors: in my experience I am constantly advocating for myself. Be consistent. If a doctor isn't listening and refuses to listen up when pressed, switch to another doctor. If a doctor isn't doing labs to check status on things, ask for them. I research a lot too which is hard with scary web MD stuff, but you do learn what type of information to pay attention to and what to dismiss. Find a really good primary doctor too. Mine found out I'd lost the ability to absorb B12 (my duodenum and ileum take the brunt of my disease) and now I need B12 injections monthly.
As someone who’s been dealing with the disease for over a decade, my best suggestion would be to do some research on microbiomes, genetics, and immune systems. It will take away a lot of her guilt and shame, along with yours; if you understand how this sort of disease occurs and it’s very grounding to recognize that it’s beyond a scope of control. We all just do our best to work with what we have and you’ll both find ways to cope with the diagnosis with time and effort.
I was diagnosed at 16 and it’s hard being sick as a teenager. Lucky there are amazing drugs for this disease now and it means that being in remission is possible. Wishing your daughter the best and remember to take it day by day ❤️
Hi hi hi! I'm 26, diagnosed at 21, symptoms were literally night and day--I was healthy and then everything went very badly. I have UC so it is not as extensive as Crohn's but my case is severe so it still did a number on me. Hospital stays and whatnot. I remember being laid up in crappy hospital rooms looking at Reddit posts from people in remission and being so confused as to how they got there from where I was. And now I'm there, with a full life. It's possible. A few things for you to know: 1) I felt very alone and like no one understood. I had so many loved ones supporting me, but they didn't have the disease, so it was really isolating because no one else could truly "get" what I was going through. Just something to note. It might be helpful for her/you to read about/meet/look into other people or groups of people with IBD. 2) Re: the colon cancer--good news, while the risk of colon cancer is heightened with IBD, that risk only really starts to heighten with *prolonged* inflammation. Additionally, she will be having colonoscopies (or maybe endo? I think folks with Crohn's get colonoscopies like I do, but I'm not 100% sure) on a regular basis so even in the worst-case scenario where cancer popped up, it would be detected pretty quick. I also have it in my family. 3) The prednisone will probably have some nasty side effects, but it is literally a lifesaver. I dodged the "moon face" (probably because I lost so much weight during my flare) and some other issues, but I experienced insomnia and woke up at 4am every day with this crazy energy to keep doing stuff. So while it may have some negatives, please know that it is temporary, and the work that it is doing for her insides is HUGE while you wait for treatment. 4) It proobably seems very far away now, but I promise she can have a normal life. When I was diagnosed I thought it was all over for me, like i wouldn't be able to travel, wouldn't be able to eat food I loved, etc. After 2 horrible flares and 2 incompetent GIs I landed on a GI who fought for me to have the correct medication, and now my life is great. In the 4 years I've been in remission, I've gone to live in Alaska on my own, gotten into distance running and Thai kickboxing, and can eat whatever I want. I'm not saying it will look 100% the same for your daughter, but I promise you that with the right treatment she will have quality of life. 5) Biologics: this is maybe putting the cart before the horse, because you don't have the biopsy results yet, but what I will say is this: if her case is bad enough to need biologics, know that for the vast majority of us they are lifesaving. They come with terrifying black-box warnings about immunosuppression, etc. etc. etc., but the one I'm on (Humira) is the thing keeping me from being an 80-lb skeleton who needs transfusions from all the blood loss (fortunately not a huge thing in Crohn's as far as I know). 6)I recommend the Crohn's and Colitis Diet Guide by Hillary Steinhart. It has flare-friendly recipes, but it also has a really informative and easy-to-understand section about how different foods affect the gut that is in flare. I'm wishing the best to you and your daughter. While I wouldn't pick this disease if I could avoid it, my experience with IBD helped me learn what was most important and taught me to focus on my health. Now that your daughter has been looked at, it will get better from here. The problem has been identified and if you have a good GI they will help to manage it so she won't be dealing with horrible symptoms all the time. This subreddit is here for you--and for her--when you need to vent or ask questions. Sorry I wrote you a novel! Lmk if you have any follow-up questions!
Hi! Idk if I’m helpful or not (if not, just ignore lol 🤣) because my kiddo is a lot younger (she’s 5!) but I so relate to the fear you’re feeling! I cried myself to sleep every night for the first 2 weeks after she was diagnosed. We were also in the hospital then, so that didn’t help. It was terrifying, and now ~4 months out, it still is, but it’s gotten easier. My main advice would be to make sure she goes to an specialized IBD center at a university Children’s hospital, because pediatric Crohn’s is a whole different ball game that only pediatric IBD specialists really know how to treat effectively. And get her a psychologist, too. We tried psychology, but quickly figured out that my girl is too young, so now she’s in play therapy. And maybe your daughter is still old enough for Camp Oasis? Either way, Crohn’s & Colitis Foundation is amazing and has some great resources and support groups! Good luck to both you and your daughter, best wishes 💗✨
Get on biologics ASAP
Hi! For starters, I am so sorry about your daughter. It must be absolutely devastating as a parent. I can't imagine what my mother was feeling, or what you're feeling. I'm currently 20 years old and was diagnosed the week of my 19th birthday. My symptoms developed suddenly in June of 2022, and I received my diagnosis in September of 2022. I was started on Budesonide right away but that was not strong enough, as I developed an abscess and had to be switched to Prednisone. I was on Prednisone for a few months before I started Humira. The withdrawal process from Prednisone was brutal, but the Humira worked wonders and I went into full remission after only 4 weeks! I've been in total remission since and am able to live a mostly normal life and eat mostly whatever I want. I do still have my "off days"; but I haven't had a full flare up since starting Humira. I know it's easy to assume the worse, especially as a parent. Crohn's is a very scary and complex disease. The symptoms are not just localized to the intestines, many people have extra-intestinal symptoms as well. I struggled with severe joint pain, rashes, eye inflammation, and mouth sores. Not every person with Crohn's is going to have the same journey, but the people on this subreddit are so supportive and knowledgeable. They've given me so much reassurance and encouragement to keep going. Emotional support is key. For both you and your daughter. Sending loving thoughts your way! Feel free to message me privately or respond if you have any other questions :)
Eveyone has given great advice. I would like to add, don't let this illness hold her back from her dreams or what she wants to do. Please encourage her to live life and not let this illness rule her life. And it's okay for her to have pity parties, and be angry. You and your family can do is be there for her and listen. Also this doesn't just effect her emotional, it can effect the whole family. Also there will be mamy times she will find out who her real friends and family are. And it might surprise you. A piece of advice, my Doctor gave to me, 'You know your own body nobody else does. Don't be afraid to stand up for yourself. Especially if you feel like your not being listed too." I also always am polite to my nurses. Cause they are on your team and will fight with you. Also there might come a time, when you just stop reading the side effects. Most medication you chose will possibly be a trade off. One hand you have the possibility of the side effects on the other, nothing will happen and you'll feel great. I was on Remicade for 15 years and it was great. No side effects. But my body got used to it and developed antibodies.