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Daughter newly diagnosed and applying to college

Hi all - I'm Claire's dad and new to the forum. C was diagnosed in August after about a year of symptoms and what must, in retrospect, have been her first flare. She supposedly has a mild case and, after the first stool test where fecal calprotectin was 900(!), it is back down to normal and her blood tests are clear. But she still has daily diarrhea and frequent fatigue and nausea. She's very conscientious about her meds (Pentasa) and she's pretty good about getting nutrition (Carnation Instant Breakfast in the morning). She's struggling with this new identity as a sick person, she's on Welbutrin (antidepressant, which really helped), just sent off her college applications, and just turned 18.

Here's what I'm struggling with: She's got only 9 months or so to come to grips with having this disease, learn all the facts about Crohns, understand her own body and what makes it feel better or worse, and learn to make choices that will keep her feeling OK, before she heads off to college. How hard do I push her? She's a great kid and very sensible in many ways; I know she'll get there eventually. I'd be much more comfortable taking a strong hand if she was younger and not quite so almost-out-of-the-house, but I worry that if I don't push her, she might not be ready when the time comes...

Any advice/warnings/wisdom?



There are a few parents on the parent's forum who have children either at college or about to go.

I sure someone will be a long shortly.

Welcome to the forum


Naples, Florida
Hi there and welcome to the community :) I'm glad you joined but am so sorry to hear about Claire. That must be tough on you, her, and your entire family. My heart goes out to all of you.

Various things:

1. Carnation instant breakfast is terrible. Looking at the ingredients here, it's just plain terrible and there are items in it EVERYONE with IBD should avoid. For example, it has Carrageenan which you can read about here. If she likes shakes/smoothies, I STRONGLY suggest she juice instead. Please see our diet/fitness/supplements forum here as we have many wonderful members helping others get into juicing. I'll even page Gianni for you, our resident juicing expert.

2. That she is still having the symptoms she's experiencing and only on Pentasa tells me the Pentasa isn't enough. Frankly, I cringe anytime I hear anyone is only on mesalamine (the active ingredient in Pentasa) as it's just not that good for Crohn's disease. It is approved for use in Ulcerative Colitis as mesalamine is thought to act topically and UC affects just the mucosa. But Crohn's disease is transmural (affects the entire width of the bowel) so mesalamine really isn't good for long term use alone for most people.

3. As mentioned by Catherine above, our Parents of Kids with IBD forum has parents with kids who are at or heading off to university. Be sure to check in there as they can offer a ton of advice.

4. Regarding the fatigue and nausea. She's likely deficient in one or all of the following: vitamin B12, vitamin D, and magnesium. Get her tested as people with Crohn's are COMMONLY deficient in these and proper supplementation can make a world of difference. Please note that serum magnesium testing isn't that good as the body does everything it can to keep serum magnesium levels static, to the point of taking it from bone. Yet people with Crohn's are VERY commonly deficient. Even if her test comes back normal on this one, I'd suggest discussing supplementation with her doctor and to see if it helps her symptoms. I can provide references to studies for all of these if you so desire.

I think I'll stop there as that is no doubt already a lot to take in. I'm happy to elaborate on anything if you wish. I'm sorry to throw so much at you already but the learning curve for Crohn's disease IS very steep.

Again, welcome. We're here for you and your entire family.

Crohn's Mom

Hi there zipp , and welcome ! :)

I'm sorry to hear of Claire's diagnosis, and so soon before she is starting college and "moving out". :(

I have to agree with David and say that Pentasa is probably not sufficient.
Is your daughter seeing a GI that specializes in IBD ?
I think your mind would be much more at ease if she were to get on the right meds combo and if you could see some of her symptoms subside before she leaves. :heart:

I also have a daughter that is off to college. She is in her sophomore year right now,and just today has finished her finals week. Lots of stress !
But she has great determination and it keeps her going :)

As far as the "pushing" goes... In my opinion I would say it's much wiser to "guide" than "push". I have found that a gentle push ~ like hey, how are you feeling ? ~ now and then; or ~ sneaky things like, ~ is it time for your refill on meds yet? do you need more money for that ? lol, are little, subtle ways of checking on their health.(and making sure they need med refills on time!) Sometimes one little innocent question can lead to great information.
However, I have also found that if I try and be a helicopter mom, it has a tendency to blow up in my face and sends her running in the opposite direction. I don't like the feeling that she is just telling me what she thinks I want to hear just to shut me up ! LOL

Dustykat on here (she also has 2 children with CD, and are in college) puts it very well when she says we have to learn to look at our children with an eagles eye ~ look at them without them knowing :)
It's a skill I am trying to master every day !

I wish you the best of luck; and I wish Claire all the luck in the world and hope she's accepted to the university of her dreams !
Please come join us in the Parent's section ~ there are a couple other awesome dad's too so you wont be alone in that department ! :D
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I dealt with the exact same thing about a year and a half ago... I was diagnosed after my first year of college and shortly after being diagnosed I transferred schools and left to live 200 miles from home. I know exactly what your daughter is going through and can assure you that, while it will be a bit of a change for her, and a pretty significant one for you, it will all be fine. A huge aspect of coping with this disease is getting to know your own body, and that's something that comes with time and experience. Basically trial and error. Sure, you can read about how to eat with Crohn's online, but ultimately, everyone is different and your daughter needs to figure out on her own what works and what doesn't.

Being a college student with Crohn's can be tough but it's far from impossible. Almost every college offers all sorts of support for students with Crohn's and in my experience it has been pretty easy to make the change. To keep a long post short, I'll just say that if you want any advice or input or if you want me to go into details of what exactly you/your daughter can do, send me a PM and I'd be more than happy to help! I know exactly what she's going through and I can imagine that you'd be worried, but hopefully I can help put your mind at ease, at least a little bit.
You know what, since I'm thinking about it, I might as well list a few tips I've learned being a college student with Crohn's...

-Most colleges' campus dining departments offer alternative options for people with Crohn's and will even make special portions to accommodate students with Crohn's. They'll take out the spices, cut the skins off fruits and veggies, offer vegan and gluten free options and will oftentimes specially order certain foods if they don't have them. My school has even offered to start including applesauce or saltines or chicken broth on a daily basis to help me through my flares. You just have to make an appointment to meet with someone in the dining department and I'm sure they'd be more than happy to talk with the chef to accommodate your daughter. I'm sure she's not the only one with dietary needs.

-Schools provide access to a professional dietitian as a part of the student health program. This can be helpful, especially since she was just diagnosed. Meeting with a dietitian on a regular basis would help her learn more about her illness and what she can and can't eat, as well as providing a starting point for creating her own diet. The dietitian can also work as a middleman between you and the dining staff to make sure that your daughter is getting sufficient nutrition from on campus dining. Especially since you're paying such a ridiculous amount for her meal plan.

-I'd highly suggest seeing the Disabled Student Services office as soon as your daughter gets on campus. They'll probably give you all the information I'm giving you and will help get your daughter in contact with dietitians, food services and others. It's also helpful to get her disease documented with DSS. That way, every semester her professors will be notified that she has Crohn's.

-Class related accommodations can be requested through the DSS office, such as additional time for assignments if needed, seating closer to the door for quick bathroom access, access to a stress-free testing area, excused absences during flares and a handful of others.

-If significant class time is missed, most colleges will allow for health related withdrawal. That way, if your daughter is hospitalized or is unable to complete a class due to her Crohn's, she won't be saddled with a big fat F on her transcript. Instead, she can get a W, which doesn't have an effect on her GPA and can later be replaced with something better if she chooses to retake the class.

-Some schools actually offer scholarships for students with disabilities, so that might be something to look into. I spoke with someone at my school's DSS office and found out that there was a yearly grant for any student with any sort of disease or disability. All I had to do was fill out an application and keep my GPA above a 2.0 and they would give me 3000 dollars a year! Which is amazingly helpful, because Crohn's can be super expensive.

-Stress is a pretty big factor for a lot of people with Crohn's. I know it really is for me... So, college can be kind of tough because of how stressful it is. My major (architecture) is especially stressful, but I'm trying my best to make it work... And the college has been really, really helpful in accommodating me. Some of the best advice I can give to a new student with Crohn's is advice that I almost never follow myself... But, I highly, HIGHLY suggest that she avoid procrastination and do everything she can to reduce stress... Be it taking yoga classes, doing breathing exercises, getting a massage during finals week or just getting homework done early... Do everything you can to avoid stress. As I mentioned earlier, she can talk to DSS to get a stress-free testing environment if that would help.

-If needed, the housing department can get your daughter a room with her own bathroom or one that's close to the bathroom to make it easier on her.

-Even if your daughter chooses not to talk with someone in the campus dining department, and I totally understand if she doesn't, on campus dining has a pretty wide variety of foods. I've had little to no problem finding something that tastes good and fits my diet on the normal menu. I've always hated having to ask for special treatment for my Crohn's and would be embarrassed asking the server to get me my specially made portion, especially in front of new friends that I'm trying to make a good first impression on. There's almost always something that I can get off the normal menu that works for me. You just have to get creative sometimes.

-One of the more important things I've learned is that you need to be your own advocate with Crohn's. There are tons of things can be done to make college totally doable for someone with Crohn's, you just have to be vocal and ask for it! If your daughter is actively out there fighting for herself and really wants to succeed in college, it shouldn't be a problem. Universities want you to succeed and they want you to get the best education possible and they've got the resources to help. You just have ask!

-Lastly, I've learned that COMMUNICATION is most important. It's best to sit down and talk to your teachers at the beginning of the semester and let them know that you have Crohn's and what it entails. You don't need to tell them that you have to sit on the toilet for hours a day pooping your guts out, because that's embarrassing... But I've found that, in many cases, my professors have personal experience with Crohn's and are very willing to do anything they can to see you succeed. If you miss class or if you miss an assignment it's best to send them an email as soon as possible so they know what's going on. Otherwise they might think you're slacking, when you're really in bed feeling awful. It's also good to communicate with your major's department about your disease. That way they'll know a bit more about you and can better accommodate you and help you succeed.

Anyways, that's all I can think of right now, but if I remember anything else, I'll let you know... So much for keeping my post short, huh? haha. Oh well, I think this is a good post to have somewhere on the forum... The best of luck to you and your daughter... I know exactly what she's going through and it can be tough... but I promise it'll all work out. If you have any questions I'd be more than happy to answer them!


Hey Zip,

I'd be much more comfortable taking a strong hand if she was younger and not quite so almost-out-of-the-house, but I worry that if I don't push her, she might not be ready when the time comes...
You know that's a very good question and one which answer differs from situation to situation. This is a critical part in C's life into becoming an adult, its a time in which the child is becoming more dependant and looking to seperate themselves from the paternal and maternal roles she grew up with. But yet at the same time this awful disease has turned on your strong paternal instincts and you probably feel the need nurture her in this trying time.

This was something I could tell that my mom was struggling with when I was diagnosed just 2 months before I was set to go to college. She wanted so badly to nurture me and just be that mom while at the same time she could tell I was trying to become my own individual.

I think the best way to deal with it is to be that Dad that goes on forums for her and researches the best ways to deal with the disease (as you are now:)) Provide her the information and let her decide. When the time comes for her to live on her own and go to college, she will learn.

When it finally became the time for me to go to college, my parents and my doctor hinted at them wanting me to stay at a local community college so I could be monitored but I knew that I had to throw myself into a real world situation, a very situation that I would need to face sooner or later and I felt sooner was better... better for my social, mental, and physical health. So I went to college 8 hours away and I lived the freshman dorm experience:). The first few months at college, I learned so much about my disease. It forced me to become more hyperaware and yes maybe the first month or two there is a drawback to being on your own and not having the necessary support and understanding around you, but you learn to be your own advocate. I started researching Gobs of studies and reports and clinical trials and drawing my own theories and that how I got into the world of nutrition.

She very well might not be ready when the time comes, but no matter what she does there will be that time when she is finally on her own and she won't be ready. She will learn, as did I, and as did many other crohnies:)

What I'm saying here is I think it's best to just let her know you are there if she ever needs anything, but let her fly:)

Enough about that... I better get on the topic for which I was paged here for:shifty:

Oh man I was cringing after reading the ingredients for those carnation breakfast essentials. David covered it, it has some things in there that I wouldn't touch with a 20 ft poll.

Learning the ins and outs of diets when it comes to crohn's is a very tedious process but one of the most important and basic things I think that everyone could do that is effected by this disease is to simply read the ingredients list on everything you buy. I don't even look at the nutritional facts sheets, because that doesn't tell me what I am actually eating and I can assess for myself what nutrients I would be truly getting. It is a good rule that if you can't pronounce the word or never heard of it then it most likely isn't good for you.

If diet is something that C is currently toying with, please do check out the diet fitness and supplement forum that David linked. The sub forum is full of great diets that have worked wonders on people and also talks about the many commercialized ingredients to avoid.

Personally I am a vegan and have chosen so because I believe that vegetables are extremely healing and that nutrient dense food is much more powerful than we ever thought:) One way that I make sure I attain all these wonderful nutrients is juicing:D

Juicing, for me, is the most important component of my treatment plan. It is great for Crohnies because a juicer will remove the fiber from the fruit or vegetable and only output the nutrient, mineral, and enzyme rich juice.

You can read my opinion on why I think Juicing is a viable treatment option here: http://www.crohnsforum.com/showthread.php?t=41838

And you can read some of my juice recipes here: http://www.crohnsforum.com/showthread.php?t=41839

In retrospect, looking back to my first year of having Crohn's I now realize how wrong my approach on diet was and how little I really knew about nutrition. I think it would be best to question everything you think you know about nutrition because Crohn's is a whole new ball game and demands a whole new way of thinking to successfully manage the disease. So please do utilize the diet fitness and supplement forum and please post the specifics of Claire's diet; I would love to hear them.

All the best



Staff member
Hi Zip,

As you've gotten some great advice already, I'll just welcome you to the forum! You'll find tons of info here and lots of very informed members who are always willing to share their experience and offer support! :ghug:

Also, please do look throught the Parents forum as there are some other parents with kids your daughter's age.

My son is 18 and will be heading off to university in September. I also worry about how he will deal with his crohns when on his own but, I think all you can do is share what you learn (even if it seems they aren't listening - my son's surprised me more than once, while at GI appointments, with the knowledge he has?!?!?) but, as Crohn's mom said, being a helicopter parent seems not to work too well! :)

There's lots to learn with Crohns and it is a very individual disease - what works for one, doesn't work for another... there will be some trial and error as your daughter and family learn what works for her :ghug:

Good luck!
My son is 19 and was diagnosed this past May. He's a sophomore in college, 6 1/2 hours a way. After diagnosis, he was home 3 or 4 weeks and then back to his college for a summer research job. I debated keeping him home to get used to taking care of himself but in the end decided it was better for him to live his life as normally as possible. He shopped and cooked for himself -- I was worried but he managed. He figured out what he could and couldn't eat by trial and error, and doctor's advice. His disease is (knock on wood) well controlled now and he feels generally well. Last spring, prior to diagnosis, he was very fatigued and needed to take incompletes in two classes. This year he is taking a fairly light course load and has accommodations in place in case he needs them.The hardest thing for him at school is getting enough sleep and coping with stress, which can trigger flares. I have tried to help my son become educated about the disease but he really isn't interested and/or is afraid to know much more... He doesn't think of himself as sick now that he is not having symptoms.

The daily diarrhea, fatigue and nausea suggest to me that the disease is not controlled and perhaps she needs other medication.

You will find a lot of helpful info on the forum.
My parents have struggled with letting me go off on my own, and when I'm home for breaks and such they still watch my diet like a hawk. It's gotten to the point where I've gotten a little agitated by them constantly questioning whether or not I should eat this or that.

While it might be instinctual for you to be overly controlling and super strict with your daughter and the management of her disease, ultimately it falls on her to learn to cope with it. She's going to be off on her own soon and she's 18 and is probably a responsible adult... So, in my opinion, you really have step back and let her figure things out on her own. Yes, you can be a guiding hand and provide her with information on Crohn's... Maybe introduce her to the forum or help her in touch with the on campus resources I mentioned above. But, ultimately I've found that it's best to learn things on your own through trial and error. Especially if she's going to be off on her own soon!


Super Moderator
Hi zip and :welcome:

I am so very sorry to hear of your daughter's diagnosis...:hug:

You have received such valuable advice Dad so I will add the points that I have found most useful to our situation. As T has said I have two children at university, my daughter who lives quite a distance away and my son who is still living at home.
My daughter is now in full control of her healthcare and I am in the process of passing it over to my son.

I think with a child your daughter's age the most important factors are:

1. At your daughter's age you can guide without pushing and in my view it would be best to treat her as an adult whilst still maintaining some level of parental responsibility. There is nothing better that a parent can do than enable their child to be an independent and fully functioning adult. :)

2. Keep the lines of communication open. You would no doubt know that it is a fine line with any teenager between saying nothing and saying too much. So that said choose your battles as they say. If it really isn't that important in the scheme of things then drop it and move on, you will find that it becomes natural to you not the stress the small stuff anymore.

3. Discuss openly and honestly the most important aspects of her care. You may not always know the answers so be honest in those circumstances and say so. You may find at times that no answers are required and what is needed is a hug and gentle "I know".

4. Read, read and read some more and question everything. Build a store of information that you can draw on if need be. There will be times when she ask directly for your help and other times where it is more appropriate to hand her a booklet or a piece of paper with a web address on it.

5. In the next few months involve her fully in all discussions related to health. When choosing universities discuss what health facilities are available and the need to have a solid back up plan for when she is away.

6. Obtain copies of all test results and go through them with her.

7. Normalise her Crohn's so that it becomes second nature to talk about it.

8. Stress to her that although she may be away from home you are here for her and just a phone call, text or email away.

9. Start looking at the universities and what they offer for students with a medical condition. Discuss this with your daughter, how she feels about it and what ways she can best optimise her experience there through making use of the universities disability services.
( I don't know how things work where you are but if a student is identified with a medical condition in the last couple of years at school and it is registered then it is automatically flagged to the universities that are applied to).

10. Lastly, when she leaves she will make choices that make you cringe but again just stress to her that you will be there for her no matter what. I have said it before and I will say it again...an 18 year old with Crohn's is no different to an 18 year old without Crohn's, they are both invincible! :eek2:

You will get there Dad and Claire will too. :) I know it is early days for your girl but she will step up to the plate when it counts and in the meantime you just keep being the fab Dad that you are. :)

Good luck and welcome aboard!
Dusty. xxx
David and the others made some excellent suggestions. I would first go to the GI doctor and ask if she could go on an additional medication. If she is still having frequent diarrhea and nausea, then Pentasa is not enough for her.

If possible, I suggest she enroll in a college close to home. If she wants to live in a dorm, pick a college that is close enough where she can come home on weekends. It is very important that she be somewhat near her GI doctor who can help her when she has flares or problems.

When she does pick out a college, it might be helpful for her to visit the Student Health services and discuss her medical condition with them. They may have some helpful suggestions, such as possible doctor recommendations near the college, etc. It is always helpful to tour the college but it would be especially helpful for her to determine where all the restrooms are near her classes.