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How to support but not coddle

Hi, this is my first post in this forum. :)
My son who's 21 was just recently diagnosed with Crohn's. So far Remicade (on for 2 months) and now Methotrexate hasn't alleviated his pain and fatigue much at all. Here's my dilemma...he's a college student with a difficult major. He's gone to the college and now has accommodations in place, thank God. So the professors are being very understanding of his malady.

That helps but the real problem now is he can't get out of bed in the morning due to extreme fatigue!!!

He's missing crucial classes and will soon be loosing his academic scholarships if this keeps up. I've accepted that will probably be the case but I don't want him to end up having to drop out of school. :eek:

Here's my question:

Should I continue the compassionate support I've been giving (along with trying to gently motivate him) or is it time to get tough with him? Tell him I'm disappointed that he isn't getting to his classes and he needs to suck it up and get going?

It seems cruel but on the other hand sometimes the harder things are what is needed to get by in this world. KWIM?

I don't know what it is like to have Crohn's and I thought I'd ask you all to get your take. Thanks for reading this!!

my little penguin

Staff member
What dose of remicade is he on ?
5mg/kg every 8 weeks orhigher at 10 mg/kg every 4 weeks ???
When did he start methotrexate?
Remicade can take longer to take full effect especially if he needs a higher dose and frequency
My Ds was only 8 at the time but was on 7.5 mg/kg every 6 weeks
The lower dose was not enough for him

When did he stop steriods ?
Is his GI aware of how bad he is doing ??

Methotrexate can take up to 8 -12 weeks to be fully effective

Can he do een (exclusive enteral nutrition formula only )no solid food until remicade kicks in ... it works like steroids but no side effects
Some kids need that until remicade is more effective

As far as school can he withdraw for the semester under medical untilge is better ???

It is not a matter of will power
Or even doing something hard
Please google what colectomy for Crohns looks like
It will show graffic pictures of the damage done in the intestine
Inflammation is hard on the body
It’s make kids tired (exhausted )
Malnutrition unless it’s healed /elemental formula is used
It’s a long process
It may take more months to get better
Your sons doc can give documentation to get a medical withdrawal and then he could return in the fall

It’s just not as simple as going to work with a cold unfortunately
And it’s take months to up to a year to get things under control

Hugs to you and your son


Staff member
Have they checked his hemoglobin recently? Is he anemic? Have they checked iron recently? Iron stores (Ferritin) can be low even if hemoglobin is normal. Also B12 - low B12 could cause fatigue.

I would not be too tough on him. I have two girls - one with Crohn's and arthritis and the other with just arthritis. The younger one is 21 and in college and the older one just graduated. They have had some tough times when their diseases were not controlled and they have both taken medical leaves of absence. Inflammation takes a real toll on the body - it's not just normal fatigue my daughters say, it's like having the flu and being hit by a truck at the same time. Plus constant pain is exhausting too.

He's missing crucial classes and will soon be loosing his academic scholarships if this keeps up. I've accepted that will probably be the case but I don't want him to end up having to drop out of school.
Why would he lose his scholarship - are there attendance requirements? I would have him go and speak to his class dean and to the Office of Disabilities. They may be able to work something out. He should also have something about absences in his accommodations - that he will need extra absences for appointments, infusions and flares.

If he does not want to take this semester off, then I would figure out how to make his classes work. Could he drop one class, so he can focus on the rest of his classes? He can even ask the Office of Disabilities if it is possible to record classes. Does he have a notetaker, so he can get notes for the classes he misses?

Can he go to bed earlier? How much is he eating? Can he drink shakes - Boost or Ensure - to up his calories and give him some easily absorbed nutrition?

And while doing all that, I would make sure his Remicade level is ok and he doesn't need more frequent infusions.

My younger daughter is currently at school even though her Ankylosing Spondylitis is not under control. Her Crohn's is not great either, but it is her AS that is really severe. She took last semester off to have two surgeries. She now has many other issues in addition to the arthritis and IBD and is trying hard to juggle school and her many chronic illnesses.

Working with Office of Disabilities and with her class dean has really helped. She gets notes for classes she misses. She also made sure not to schedule classes that are too early in the morning. She is a chemistry major - a tough major, but it's what she enjoys. It can be done, but it may take her longer and she may need some help (accommodations) along the way.
I have to tentatively agree with Maya142 here. I’m a few years older than your son but I’m going through a similar thing myself. The fatigue in the morning is so ridiculous that I brush my teeth and get back into bed for 10 mins to recover....not much fun! It’s quite a ridiculous situation and I would give anything at the moment just to feel 50% instead of 20% for a day.

Honestly? I’m not too sure how I would react to some tough love right now. Realistically it isn’t going to change my situation. I’ve spent 18 months learning that pushing myself isn’t a good idea. If I thought someone was disappointed in me for it I wouldn’t know what to do. I don’t know the details of your son’s condition/temperament so I can only speak from my own experience, but I’m quite sensitive and I think it would do more harm than good with me. That being said as it’s never happened I can’t say it wouldn’t do me the world of good either! I think you really have to try hard to pick your battles with this disease, even if it means missing out. I don’t know if college is different in the US but I was undiagnosed while I was at university and I missed exams and classes with my ‘vomiting bugs’ as I thought they were at the time. I could always re-sit the exam or go to the lecturers office hours to get handouts and catch up.

Ultimately it depends on your son and his personality, you know him best. Does he have a friend or roommate you could speak to to try and get a more in depth idea of how he is other than the fatigue? I would imagine he’s very frustrated with the whole situation.

Please let us know how it goes [emoji4]
I can't tell you how much you 3 have helped me, giving your ideas and input!! Ya'll are the first people familiar with Crohn's that I've spoken to...your opinions really are something I value.

I decided against the tough love for now, Sophabulous. :) He is quite sensitive for a guy and and real perfectionist so I don't think (seeing it from your perspective) it would be helpful and maybe harmful to push right now.

Thank you My LIttle Penguin, you've given me a lot to consider. I showed my hubby a pic of a colonectomy of a Crohn's patient. He was astounded how bad the intestines get. My kiddo is on 5mg of Remicade I believe. It's good to know his dose can be upped. His gastro dr. is not the most communicative guy but I do believe he is considering upping it. He's ordered tests to check the remicade levels in his blood. He just started the Methotrexate last week.

He's missed all his morning classes this week but the accommodations office at the college found a note taker for his classes and 2 of his professors are starting to video stream their classes for him! So great of them to go to the trouble!! :thumleft:

Maya142: I have no idea of his bloodwork! Thanks for this...I will call and get the details from his doc...or ask for more bloodwork.

Big hugs to you all for the support. :rosette2: