Student with IBD-Advice?

[IrritableBob]

Hey everyone! I am new here, but I've had Crohn's as my constant companion for 2 1/2 years (officially).
Does anyone have any advice about going to school (universety) as someone with crohn's disease? Any ideas, thoughts, and tips --financial, time/energy management, and so on-- would be apprecaited.



Currently taking Imuran; previously on Remicade and prednisone

 

[Scipio]

Hello and welcome. As for going to school, a lot will depend on how severe or well-controlled your disease is. If your current medication has your symptoms well under control then I don't see any reason why you can't a have a pretty normal college experience - with the exception of avoiding your trigger foods and avoiding common college behaviors that are bad for your health in general (drinking binges, illegal drugs, etc.)

If your disease is not well-controlled then you are going to have to keep in close contact with a good GI in your college town who can continue to manage your care on a very regular basis. You are going to need a good GI nearby no matter what shape your disease is in. But if you are having flares then it's important that you be closely cared for by an IBD specialist.

Probably the other main thing you are going to need to do that most college kids don't is to be very responsible. To keep your disease in check you are going to have to keep up with all your medications and Dr. appointments. You are going to have to avoid the youthful carelessness and thoughtlessness that is common in students your age. In other words, your Crohn's is going to force you to be a little more grown up than is normal.

Good luck, have fun, and study hard. Make the most of your college days. You only get educated once in your life. Make it a good one.

 

[emmaaaargh]

Hiya IrritableBob! I'm in my first year of university and I've had Crohn's for almost 10 years, so I hope I'll be able to help a little bit here.

First of all, it's SO important to make sure your condition is known to your university's disability services. They don't have to tell all your lecturers/tutors if you don't want them to, but it's massively important so that they know if you need to take a lot of absences, need an extension on an assignment, or need any adjustments, such as toilet breaks in exams. They can also help with the process of securing you a room on-campus, or with its own bathroom, if that's possible. There's so much they can help with!

I think secondly the main advice I'd give is to allow yourself some healing time, especially if you're flaring. There'll be times when you can't do what everyone else is doing, and it'll be frustrating, but pushing yourself harder and harder just leads to things getting even worse (as I'm now experiencing). This ties into not getting too stressed, too. Stress just ruins everything, for no good reason!

I think the final general thing I'd say, though, is that you should enjoy yourself! There's so much excitement in transitioning to university life (I joke with my parents that it's like a tutorial level for adulthood) that sometimes it can feel really overwhelming, but the most important thing is that you're enjoying yourself. There's so much support out there if you need it, so feel free to have some fun!

I hope this helped a little! Please let me know if you have any specific questions and I'll do my best to answer them

 

[IrritableBob]

Hey Guys! Yeah thanks!

I should have probably mentioned that I am rather "old" compared to other students--24, to be exact. I've worked full time since graduating highschool (disease permitting--my initial diagnosis sent my life into a roaring standstill for almost 2 of the last four years), and I currently work full time night shift as a telemetry tech at a hospital. I am taking online classes through a community college, but I will need to transfer to a universety soon to attain the degree that I want. That being said, I'm still nervous about the transition--especially being an older student.

My Crohn's is controlled at this time, but I hear ya about stress triggering flares. It's always a concern of mine.

 

[Alexa Federico]

Hi there!

I graduated last year, in May 2016. I have had Crohn's for 10 years.

Here are some things I suggest!

1. Get in touch with your school's disability department. Every year I joined a pool of others with different disabilities to choose where I could live based on my needs (I always had my own bathroom, and a kitchen starting sophomore year).

2. Talk to the director of the dining services. I met with mine before I started school and he gave me a tour of the cafeteria and showed me where I could find gluten free and allergen friendly food, as well as letting me know I could ask them to make me something special or call ahead for a plain burger or something. He also went out and bought any foods I wanted to have stocked!

3. Be honest and tell your professors either in the beginning of the course or when you aren't feeling well and need to miss class. My professors were so understanding of me missing classes here and there and that way I wasn't afraid that they thought I was just skipping.

4. Give yourself rest and self care! We get more tired than people without IBD, and so much goes on in college. Take it easy, but enjoy it

Reach out if you have any questions!

Best,
Alexa

 

[Magnolia24]

I'm a grad student and made it through the first couple years without a hitch, but flared last month. I am glad that I contacted student disability services while I was well so that was already in place. I also knew who to contact within my program, an advisor of sorts, to let her know what was going on, so she could tell the necessary people, and I didn't end up feeling like I had to make a big thing of it, and could focus on what I needed to: getting well again.
So, I would say become aware of what/who your resources are while you are well, so that you already have a plan of who you need to contact if you flare and need support.
Also, food prep! I know you mentioned that clean eating has been important to you. Life can get crazy when you're busy with school, and you don't want to end up unprepared with the food that helps keep you healthy...it takes a little more planning, but try to think ahead and when you have time cook batches of things that will last you a few days...then you can dive back into school life and not have to worry about it for a bit.

 

[aypues]

when I went to college I was not doing well. This was back in the late 1990's. I was diagnosed after my 1st year. My 2nd year was so-so. 3rd year I had a major bleed and had to go on Prednisone. Beginning of 4th year I had to have surgery! I actually had to drop out of school for the quarter to recover!! It was ok because I was so far ahead in units - I actually managed to graduate early. But still, total disaster area. I wish they knew what they know now about IBD management. Remicade was barely approved in like 1998-1999, and they only used it as a last resort because once you failed that you were screwed. Now it's reversed - they start out on the big drugs to alter the course of the disease. Major difference.

Anyway, if I was in school now I would do a few things:
1) make sure I am being treated by an IBD specialist - and not a just GI generalist. Crohn's takes specific training to be treated optimally. It may take some research to find a doctor like this in your area. you may have to travel a bit to find one. it's worth it.
2) Get plenty of rest! In college I had loud roommates and stayed up way too late.
3) I would stop drinking. Drinking does your body no favors, especially for Crohn's. I experimented with that too much at frat parties, etc.
4) make sure you have a nice school-life balance. studying can become all encompassing. make sure you go see a movie or go out a couple times a month to relax.
5) get exercise. even a little bit will clear your mind and help to focus. Brain fog is a real thing with Crohn's.
6) take an active role in understanding your disease. I had no idea what all my labs meant way back then. now I monitor them closely and know what almost all of them mean. Just having a forum like this available is amazing and invaluable. we had nothing like this back then.

good luck!!!