Daughter with UC - Advice for Managing UC in College?

My daughter, now 16, was diagnosed with UC in the summer of 2010 though I believe she had had it for a couple years prior. After having been hospitalized after a severe flare up in 2010 she when on Remicade injections and started Azathioprine. She no longer is doing the Remicade (did it 4X) she is maintaining her UC with Azathioprine. As she is starting to look at colleges I'm concerned about what being away at school will be like for her and how we can best prepare her...and us. Her flare ups are minor only 2-3x/year usually managed with a Prednisone burst, but what I'm mostly concerned about is her mornings. Though she is doing fine most of each day her mornings are almost always a different story. Painful and crampy, I'm concerned about how we can best prepare her for life away from home in a dorm environment. Also, anyone who can relate that may have tips on managing the morning routine I'd be grateful.

Here are some specific Qs I have:
- Is it advisable to have her live alone rather than with roommates?
- How do students with UC best manage their day?
- What kind of help can working with Disabilities Services provide for her?
- Is there anything you wish you knew about having UC when you left for college?

Thanks in advance for sharing your experiences and recommendations!

Thank you Joanna! Good for you for enduring and getting through college. That's an accomplishment even without UC.

I'm a college student, and I know just how rough it can be! I hope this isn't too discouraging, but for me I missed a lot of classes during my flares. I'm currently talking online courses, but still thinking about going back to the campus setting. Puffed rice, said it well at her first sign of uc symptoms she should take necessary precautions, eat well, eliminate certain foods/drinks and exercise. Most of all keep stress down (w/ exercising, resting, meditation, yoga etc) and eat right (probiotics, foods/supplements to reduce inflammation & restore gut flora). I agree that she should have her own bathroom, and perhaps stick to a later schedule. Mornings have been rough on me too! I've never talked to anyone at school about my condition, such as Disability services, but had I known that was an option, yes, I would've. The teachers, from what I've heard, are very cooperative- they'll give her more absences, let her leave without being excused. I think overall she'll feel much more at ease, if she can take care of business without having to worry about how many classes shes missed and if the teacher will let her leave during a test to go to the bathroom. All this adds additional stress, so yes I think it's a great idea for her to talk to disability services.

I am currently in college right now, but luckily for me my college is ten minutes away so I don't have to stay in a dorm. I would definitely want my own room...without a doubt, especially during flares. A lot of people, especially the college age, have no clue what we go through and a lot of them don't care. I feel that if I had a roommate it would be extremely embarrassing to have to tell them everything, I had a hard enough time telling my boyfriend about it all let alone a complete stranger.
I have actually never talked to Disability services, but now that you mentioned it I think I may have to do that. I have only ever told one of my teacher's about it and that is because it was absolutely necessary. I wish I was more open about it like some of the people who post on here because then I wouldn't be questioned or marked down on grades for leaving the classroom.
When I am not in a flare, college is great. When I am, not so much. I take as many online courses as I can as well because I never know when I am going to flare and sitting at home and doing homework is much easier than sitting in class and running to the bathroom two or three times during a class period. You start to get funny looks ha ;)
But overall, I would just provide her with good quality food and not the greasy gross food that are mainly in college settings, because that will definitely not help heal or prevent a flare for any of us.
She should be fine though, it is good that you are making preparations now because that will make the whole situation so much easier on all of you. And then when she goes back for her second year of college maybe you will know some new things and can make the necessary changes to better suit her needs. :)

I am now a college senior living with UC. I didn't have it as an incoming freshman but my symptoms hit the summer after freshman year. Here are my suggestions.

- Living in the dorms was a godsend for me. I was shy and found it much easier to make friends that way. If your daughter is comfortable with her disease and wouldn't mind dealing with a flare with other in the bathroom at the same time then I say go for it! My dorm was set up so there were about 28 girls to 3 toilets and rarely were all three full at the same time. However, in future years I lived with roommates in apartments with only 1 bathroom and there were a few times when I was at my worst that I had to poop in garbage bags because I couldn't wait for someone to finish showering and was too embarrassed to ask them to let me in mid-shower. So really a lot of this decision rides on your daughter's comfort level with her disease and the set up of the dorm. There are more expensive dorms at my school now that are suite-style with 8 people to 2 or 3 toilets so that might be an option where not quite so many people might have to know what you're going through.
- Others have mentioned the dorm food as a potential problem. I would agree with this if your daughter uses diet modification to treat her UC but remembering the dorm food my freshman year, there was always a good variety and I think even in my gluten-free, lactose-free days I could have made it work with some effort. But, a lot of dorms have small kitchens now so your daughter would likely have the option to cook her own food if dietary restrictions make eating at the dining hall too complicated or risky.
-When my UC was at its worst I had a lot of morning issues as well. I always like to choose morning classes to get my day started but some semesters I tried to avoid this to accomodate my morning urgency. Those times that I was having problems I would wake up 2 hours before class to hopefully get everything out of my system before I had to leave. It meant getting up pretty early sometimes which meant going to bed earlier than most of my friends which can mess with one's social calendar but it was definitely worth it.
-After a particularly bad flare that left me so weak I could barely walk I reached out to my school's disability services. The had a woman who worked solely with those with chronic illnesses and she saw many students suffering from IBD so they were familiar with my situation. They gave me a letter I could give to my teachers at the beginning of the semester that said I had a chronic medial problem (the letter was discreet but I was usually upfront with my professors when I shared the letter with them that I had UC) that had periods of good health and sickness that may make it impossible for me to attend class and suggested that I be given leniency for due dates, testing accommodations (i.e. being able to leave to use the bathroom), etc. The letter is non-binding - the teacher had no obligation to afford me such accommodations but in my experience everyone was sympathetic and as such my UC has never really impacted my grades. So yes, DEFINITELY have your daughter speak to the disability services on campus.

No other good bits of advice spring to mind right now. The first semester may be tough but your daughter will learn to adjust fast. And if a couple of months into the first semester your daughter decides she can't live in a dorm anymore or she want to try living in a dorm rather than alone if you choose that option, she may be able to change accommodations over winter break. This may be something to ask disability services when you speak with them.

Best of luck to your daughter! Even having to wrap my head around having a chronic disease, college has been the greatest time of my life. I have great friends and an amazing boyfriend who understand my condition and (for the most part) don't hassle me too much if I'm not feeling well enough to go out on the weekends with them and I have an amazing mother (and father) like yourself it seems, that have helped me through the whole process.