Worried about my academic future with Crohn's

I've just been feeling particularly angsty recently. It seems like every flare simultaneously triggers an existential crisis. I am just about to start my final year of high school and I am scared what the future will hold with going to university etc whilst having Crohn's. At the moment, I am so low in energy that even getting out of bed, and trying to keep down a sustagen shake is a big effort for the day. When I'm like this, I feel completely useless, dysfunctional and unmotivated. Maybe I'm being a bit nihilistic, but spending weeks on end in this state and trying to distract myself from thinking about the bigger picture feels like a blurry waste of my life.
I see my friends getting their lives together, and can't help but feel a pang of envy; when they can energetically do everything that they please, but a full day of classes is a struggle for me.
I've always had high hopes for myself but they have been dashed. I used to be a straight A, dux student, and was talking about doing medicine. I'm not ready to put my goals on the back burner, but to think that I could do such a demanding course like this would be delusional.

How do you guys cope with knowing that sometimes you can't do as much as you'd like to do? Have any of you changed career paths due to Crohn's? I'd love to hear from some young adults about how you manage to go to uni, work, and live normal lives around Crohn's...

Hey cloud, I know how you feel. I got ill with Crohn's for the first time in April, during my first year at uni so I can only give you a bit of my experience from then. The best thing I found was telling my advisor as soon as possible when I kept missing class for being hospitalised. I pulled out of my lab class, (I study science) as that was a 10 hour day standing but decided to try continue with my other two courses, mostly just so I wouldn't fail the while year. I missed much more class than I was allowed but because of the circumstances they still let me take the exams. I could barely study at all because of the head fog but took them anyway and ended with a 75% and a 76%, which shows your mind can do a lot more than your body sometimes haha. I'm meant to start my second year on 31st August and im nervous but also excited to learn new stuff. I'm going to meet with my advisor and the head of my course to see if there is any extra help I can get, for example skyping into lectures the day after lab class so I can recover more, and also extra lenience towards missed classes.
So yeah, don't give up hope please, you can do anything you want to! The disease is just an extra obstacle but it will make the reward at the end so much sweeter because of everything you've had to overcome. Just don't be afraid to ask for help when you need it and I'm sure you'll do amazingly. If you ever want to chat, let me know!

@Cloud - firstly, don't give up. It is do-able. You just need to adopt a different strategy than your peers.
Have you advised your school what is happening? If so, have they offered to provide you with course schedules so you can pick things up outside of class (i.e., it takes away that "I must be in class to learn" mentality).

Having a chronic illness like Crohn's is managable for the most part, you just have to figure out a study plan that will allow you to have off-days but still get your course work done.

Perhaps you can take a few days "working from home" a week. It saves you the exertion of getting to school. You need to be self-disciplined though, and break up your study time in small manageable units - 30 mins one subject, 30 mins switch.
Maybe you can have a different friend call over after school those days and study a bit together, making the sessions interactive with flash cards or quizzes? That will help both of you with memory recall actually.

Its harder not to be "normal" but remember there is no such thing really as normal so just figure out how to make it work for you.

I have always had multiple chronic illnesses, and work wise, I have a good relationship with my boss. He understands sometimes I just have to do things like work from home, he knows I am not being lazy. The flexibility I am allowed in work means I am able to deliver as much work as everyone else, I just work in a different way. End result - my boss is happy to leave me do things my own way and I am less stressed.

Hang in there, its not the end of the road!!!! Its just a more interesting journey

Thanks kikig and Hattie95 so much for your kind suggestions! I will try them out I've decided to arrange some meetings with my teachers and principal so that we can work out a plan. My school is aware that I have Crohn's, but I don't think they fully understand the condition. I'm hoping that they can work out a plan so that I can manage my coursework when I'm well without burning myself out, and a plan for when I do have time off with flare ups. Do you find when you are having a flare it is better to take it easy and relax a bit, or to soldier on with work?

Cloud,

As the mom of a daughter, dx'd at age 16, I can tell you she struggled at different times throughout high school. The first thing she did was honestly talk to the dean to let her know what she was capable of when not feeling well. (At one point she took a semester pass/fail rather than earning letter grades). The school, fortunately was able to make great accommodations for her which allowed her to focus on healing and eventually getting back to feeling well and age-appropriately energetic ;-)

She is going to college soon - in two weeks!!!- and she also has communicated with administration there to let them know of her diagnosis. She has a letter from her GI that explains her diagnosis and what possible academic accommodations she may need should she not feel well.

When not feeling her best, she has learned to take things one step at a time. We have seen her go through a lot. When she is feeling well, it's as if she doesn't have this diagnosis. It doesn't slow her down.

I hope something I have explained might help you!

Best of luck!

Cloud,

My son was dx'd just at the end of last semester, during his sophomore year of HS. He missed almost every class after lunch and never made it a whole week the entire last 6 months of school. We communicated with his teachers and they were good about letting him have time to make up work on the days he could think clearly and get off the couch. I completely understand the difficulty in just getting up for the day. Hopefully your medications will help get you more stable. Ds is on Remicade, though not great, it's better. He started his junior year last week, we'll see how it goes.

Do you have a 504 with accommodations for school? Ds has one for an unrelated dx, we will be adding the Crohn's and asking for other academic and classroom accommodations this year. For him, the teachers will need to let him use the bathroom as needed and without penalty, allow him to turn work in late, preferably after the following weekend so he can do the work then, get notes from the teachers since he's often too tired to write that much at one time, etc. Would those types of accommodations help you? Or others? Speak to an administrator at school if you don't already have a 504 in place.

Many universities have a department that deals with physical and mental disabilities which Crohn's qualifies for. They will work with you and instructors concerning any accommodations you need. You just need to find the right school.

I know his dx changes your life, my son is rethinking what he's going to be doing as well. He's already decided he's going to go to a uni closer to home, unlike his sister across the country. Once your Crohn's is under better control, it'll make it easier to focus on the future. Good luck!

Hi Cloud
I also wanted to study medicine. I knew that realistically I would not be able to complete the study and also not be a realiable doctor on shifts. I ended up studying biology and became a biomedical researcher. The staff a uni were very understanding and supportive. Afterwards working in a lab where I was essentially my own boss on the day to day level was the right working environment for me - I could plan for myself.

I am now a medical writer and it is probably the best job for me at the moment. It is computer based and lets me use my analytical skills and medical knowledge. Right now I am doing it very part time just when it suits me. Check it out and see if that could be something for you.

Being ill makes us more realistic about things, that is for sure. For all your hopes and aspirations, please put yourself and your health first.

Hey Cloud,

I totally get what you're going through. I've had stomach problems since as far back as I can remember. I just recently got diagnosed with crohns though (Last month). Ever since then I haven't been feeling like myself. To make things worse, I'm currently studying computer science and engineering and have reached my final year. I just don't have the energy to sit through all my classes sometimes. I have also skipped a lot of classes because of this. Right now, I've started taking alternative medicine for the crohns (started last week). Hopefully it will help. I'm just taking things one step at a time. And that is what I think you could also try doing. Try to do your best without compromising you or your health.

Hi Cloud!

I probably can't offer any new advice, but here's some more support!

I was also diagnosed when I was going through Uni - when I was having a flare-up and had no idea what was going on, I informed Inclusion and Welfare (that was a medical centre place, you will have something similar at whichever Uni you go to) and they helped organise a plan for me to do while I was flaring.
I also talked to co-ordinators tutors asap and all were very understanding. You're health is paramount but that doesn't mean you have to miss out!
At that time I was doing a lot of classes at home. Handing homework in via email, listening to lectures online; that kind of stuff.
Since then I've informed Inclusion that is was Crohn's and i have an Adjustment plan if I ever need it. However this past semester I had no need and no one would have ever known I was a Crohnie.

Take everything one step at a time and good luck!!

I've been there and while I can't really offer advice I will tell you how I handled/handle things.

I worked a full time job and finished college while in a flare that ended up with me having surgery. I let my supervisor and professors know what was going on. Really, the only thing I did was endure. It was tough then and still kinda is. Focus on your goal. Let that guide you. When you need to rest, do it! Just think of what you want to accomplish and focus on that...

I will give you the old mans perspective - I was diagnosed at 24 - I am now in my late 50's. Has it stopped me from doing anything that I wanted to do - not really. Yes I have had to adapt - yes may be I got a little creative but you push on. I have a wonderful supporting family, great friends and an adaptable job working for a company that makes toilet paper. Keep your humor, strive for what you want and go for it. Yes there will be bends in the road - other folks have those too. You will adapt but please do not let the crohns rule your decision - I wish you the best

Hi Cloud!
It's definitely hard, but it's totally doable to continue with your education after high school. Most universities do have programs you can be in that help with physical and mental disabilities. I only found out about it when I was in my last year at university, but it was a huge help and I totally recommend you find out if the university you're going to or considering going to has one such program.

I think when it comes to either resting or soldiering on while feeling like junk, is a personal preference. I tried my best to soldier on (except for days I was glued to the bathroom) because I always felt so guilty for "wasting" time in bed/at home. I always figured if I was gunna feel like wrung out old dishrag...I might as well feel that way in class than at home - at least I wasn't feeling guilty on top of it. I won't lie though...there were times when I couldn't picture ever finishing...and wondered if any of it was worth it. It was tho, I'm done now. Have a great job and good benefits. Knowing I can financially take care of myself and my crohns takes ALOT of stress off me - which we all know is such a trigger for flares.