College & Crohn's

[Mehita]

Talk to me about college and having IBD. What has been your kid's experiences?

We're starting college visits this summer. Should we visit the disability offices during these visits? Or wait until he's more sure of where he wants to go?

What accommodations have your kid's needed and used? Any issues carrying over a 504 plan?

Does the disability office also deal with food issues? i.e. being gluten free? Or does that fall to dining?

Is asking for a (dorm) room with an attached bathroom an unusual request?

Did you change GI's? Hoping he'll still be on Remicade - what did you do about infusions?

Anything else?

Thanks

 

[Maya142]

Yes, visit the disability office if you can when you are visiting the college. Usually they have some experience with Crohn's.

My kiddo has a LOT of accommodations! Many are for her arthritis though:
--Use of a computer for note-taking (not all professors allow laptops in class)
--classes that start later in the day (she is in a lot of pain and stiff in the morning)
--extra time to write exams (because of the arthritis in her elbows and hands)
--extensions on assignments if necessary
--extra absences for days she does not feel well or has appointments.

Some are for Crohn's and Gastroparesis:
--Disability housing with access to a kitchen and private bathroom (or somewhat private - not a hall bathroom but she did share it with suite mates)
--The dining hall will make her bland food (grilled chicken or pasta for example), if there is nothing she can eat on the menu
--Bathroom breaks (stop the clock) during exams
--Allowed to bring in a snack and water during exams

Asking for a bathroom is not unusual but then he should be prepared to have a roommate that also needs that bathroom! One of M's suitemates had UC and I was worried that two kids with IBD in one apartment was a bad idea but it worked out.

They often cluster kids with disabilities (who have disability housing anyway) which my girls did not like but that's the way they seem to do it.

Disability services will help you coordinate with dining services for Celiac - usually the dining hall will have a special gluten free section.

Everything in college will be handled by your kiddo. Practicing in high school is a good idea - the last year of high school, both my girls handled everything by themselves. When M got to college she was pretty sick - flaring, in a lot of pain, not sleeping and dealing with infections of her GJ tube - and still handled almost everything by herself - talking to the Deans, advisors, disability services and professors.

It is a lot of coordination to get everyone on the same page and your kid will have to get used to advocating for himself or herself. It's hard and it does take some adjustment. It's also a lot of time and energy which seems counterproductive when the kiddo is sick anyway, but that's the way it is!

My girls did not change doctors (GI/rheumatologists) but they specifically chose to stay close to home - both are about an hour away from home. They come home for their appointments and my older one did come home for her infusions too (younger one was on injections and did them herself at school).

Another person to talk to once they are admitted and decide to go, is the director of health services. Tell them your kiddo has Crohn's and is on Remicade. It's helpful for them to know that your kid is immunosuppressed - both my girls were told NOT to come to the health center during walk-in hours because they'd be surrounded by germ-y college students! Instead, they email the health center NP or medical director directly for an appointment.

You can also have the health center do shots if your child does not want to give them to himself. We set up Humira with the health center for my older daughter - she could give it to herself but hated to, for a while. She had a nurse at the health center do it several times, decided that was too much work and then started doing it herself. But she was glad to have the option of someone else giving it to her. We did need a prescription from her pediatric rheumatologist for that.

If you are having shots shipped to school, usually you can arrange to have the shipped to the health center so that they do not sit in the college mail room forever, waiting to be sorted (since they have to stay cold). I know your son isn't on Humira, Mehita, but figured everyone should know!

It depends on how your kid is doing, but they may or may not use their accommodations. It's still very important to set all this up because if he flares, it'll be hard to get all the documentation done mid-semester.

My older daughter was doing really well the year before she started college and did NOT want register with the Office of Disabilities ("I'm FINE, Mom!"). I insisted and her guidance counselor at school insisted and eventually she agreed. She promptly flared the month before starting college and ended up needing a lot of support from the Office of Disabilities. She was very grateful that I had made her register.

There may be more useful accommodations that I will remember later - let me ask the girls.

Good luck!

 

[Mehita]

Thanks, Maya!

And I forgot to ask... though slim, there is a possibility of him going to school in Canada. If any Canadians have input, I'd appreciate that too!

 

[Maya142]

One other thing - the director of health services told my older daughter that dorms are "petri dishes" - college kids are ALWAYS sick! She told her to wash her hands a lot.

S is careful - she does wash her hands, uses Clorox wipes to clean (never knew they didn't have bleach in them till M got CDiff!) and does not share food or drinks, if she can help it. She tries to get enough sleep (but she is a college student so that doesn't always work!).

She has been sick less than her roommates, even on Humira and MTX. She does get a cold or two every year, but she's definitely not sick ALL the time, like some of her friends are. So it is possible for them to stay relatively healthy.

It might help that she is a girl and that her roommates are quite clean and not the typical filthy college students .

My younger daughter says that her school had quite an extensive gluten free section with a separate toaster. There were even separate jars of peanut butter and Nutella for the gluten free section to prevent cross contamination. So hopefully your son will be ok.

She also says she met one kiddo with Crohn's on the SCD whom the dining hall was able to accommodate.

I looked at M's accommodations and she has two more:
--A copy of the class notes for days she is absent
--A reduced load of classes if she is not doing well

However, M is really not doing well and I doubt all the things she needs would be necessary for most kids (especially a reduced academic load).

No idea about Canada unfortunately...I hope someone else will chime in soon about that.

 

[Tesscorm]

Wow, Maya, that covered everything!! You've given me some ideas and S is in his third year! :lol:

S didn't actually register with the disability office but I submitted a letter from his GI to the health office. And, he has used this same letter when there's been a conflict with an exam and his infusion.

After he was accepted at his school, in the paperwork, he requested an 'apartment' style residence (had a full kitchen) and specified that he had a disability/crohns. This allowed him to prepare his own food. He did share a bathroom but only with one other roommate. As Maya said, there was a possibility that he would be sharing with someone with another disability. Not sure if it's the case in S's school but, in some of the universities here, these 'apartment' style residences are offered to those with disabilities and those with the highest marks (they get first dibs - not sure how it works exactly as S wasn't in that category! :lol

As S is only less than two hours away, we did not change GIs. I spoke with his GI about this and his comment was that if S couldn't make it two hours to see him, he should be going directly to a hospital. Hasn't been a problem. Infusions - his infusions are done on Saturdays so he usually comes home for the weekend. His infusions are done at a 'chain' of infusion centres (not a hospital) and they also have a location just a few minutes from his school. When he hasn't been able to come home, I've had it moved to the centre close to school. The 'chain' is called Inviva - you can probably check if they have a centre near any Canadian schools he's considering.

S has not had any special accommodations but, hasn't really needed any except when there's been a conflict with an infusion/apptmt. But, this is also partly because, as Maya said, it takes a bit of effort. Most of the time, S said he'd just deal with the issue rather than go through the trouble of requesting the 'accommodation'. Very annoying and unfair.

I really like Maya's point of being able to call to make an apptmt at the walk-in clinic due to suppressed immune system! I may check on this for next year!

Something else re Canadian schools - residence is usually only offered for first year students. After that, it is up to them to find their own accommodations. Most college/university towns have tons and tons of private accommodations available for students, so it's not a problem. And, it is easier to find accommodations that meet his needs, ie for the last two years, S has been living in a 5 bedroom apt with four friends and each bedroom has a private bathroom. But, when doing this, if you want to keep the same accommodations for the next year, you need to keep paying rent (or sublet) when they are home for the summer. Of course, you can move out when the school ends but then you are dealing with finding someplace new, maybe different roommates, different location, moving everything out and back again, etc.

If the Canadian schools are located near Toronto, let me know and maybe I can give you info more specific to the city/town.

 

[Clash]

C is in his first year. We looked at several colleges but due to the fact that he really wanted to keep his job and that he's yet to reach remission he chose a local state college. With the other colleges he was accepted to we did speak with the disability offices and all agreed he could be placed in a suite dorm where there are 4 bedrooms and each has their own bathroom. Theyou encouraged us to establish this with housing quickly since it can fill up quickly.

One of the reasons he chose the college he did though was because it did not require freshmen to live on campus. He could effectively live at home (30 mins away) or get an apartment. He lived at home the first semester but now lives in an apartment with a roommate.

I rarely see this child now! I saw him Eastern and the Sunday before (Sundays are his only day off work). He calls to ask when Humira has arrived or if he has a refill available of other meds.

My non IBD daughter is further away at University and graduates this May. I see this child every weekend! As a senior college life doesn't have the allure it did the first two years and Mom always cooks!

The disability office has provided C with numerous accommodations but it is his responsibility to make his professors aware of specific needs he requires at that time. He has had two different disability advisors and he says one was way more hands on and laid back with him checking in while the other encourages (expects) him to give updates and such

 

[kimmidwife]

Mehita,
Good luck!
We have decided for Caitlyn to go next year to the local state college. We are going to meet with them tomorrow. We are very nervous about the whole college thing. For her first semester we are looking for her to do mostly online courses so she does not have a lot of pressure and we will see how it goes from there.

 

[Maya142]

Wow, Maya, that covered everything!! You've given me some ideas and S is in his third year!

Two kiddos...4 chronic illnesses - I was forced to learn fast, Tesscorm!

The health center has been VERY nice and accommodating and I'm very relieved that they have the girls come in when walk-in hours are over.

Just as a heads up, they will not talk to you unless your child signs a release - we had a problem with that when my older daughter got a UTI and they couldn't reach her rheumatologist to ask which antibiotic to give (the one they wanted to give interacted with MTX).

They finally broke the rules and agreed to talk to me even though S had not signed a release yet and we were able to figure it out. Even the Office of Disabilities would not talk to me until my girls gave permission.

They do have to handle their professors completely independently. Some professors are very kind and understanding, others are not. My older daughter had a really hard time with a chemistry professor who refused to let kids take make-up tests EVER. She could not control when she flared (obviously) and so missed two exams.

It took a lot of arguing and coordinating with the Office of Disabilities and the whole thing was very stressful for her. They do have to become good at advocating for themselves and asking and even fighting for what they need.

The first semester was the hardest for both my girls.

The other thing to remember is that kids feel like the sky will fall if they have to take time off to focus on their health, but sometimes it's just necessary. Both my girls have had to take time off and both eventually agreed that it was the best decision they ever made, though they were distraught when they had to withdraw.

Good luck to ALL the kids who are starting college next year!

 

[Clash]

Oh yeah ditto what Maya142 said. The Office of Disability did not want input from me. Even though C signed a waiver the advisor was adamant that C go through the process independent of me. I did sit in the room during the disability interview but I was not allowed to answer the questions she asked. C would often cut his eyes to me with each question but did fairly well covering all his needs. She explained that it needed to be this way because Mom would not be his advocate at college and that he needed to take control of the reins from the start.

It was hard because we are so used to filling in the gaps when it comes to explanation of illness, symptoms, etc and we've spent years elaborating the kiddo's answer of "fine" when doc asks "how's it going".

But two semesters in and although I worry about is he taking his folic, allergy, vitamin D, I've let go of control on the advocacy/school side and feel good about it.

 

[FrozenGirl]

Canadian here:

Residence wise it really depends where you go. At my school residence is offered first come first serve with preference to returning students and first years ( so if you started living in res you second year you wouldn't get preference.). That may change with disabilities though. I agree with everything everyone else has said. I stayed close to home and didn't live in res so I kept my doctor but if you are going far I would say connect with a local one for emergencies even if routine appointments are with your regular GI. Yes visit disability services before choosing. My college even had a disability services open house.

My college also doesn't have a dining hall so food is 100 percent up to you. There is a cafeteria with various fasts good places and sandwiches salad bar etc. Look into what food choices they have re dining hall vs fast food and pre made sandwiches.

Accommodations: I take exams in a separate room with stop clock time for washroom visits. I can audio record classes and have a note about unavoidable absences (though it is up to me to negotiate arrangements with teacher on how they will deal with that for exams, or graded attendance, only if we can't arrange it will the disability office step in (they have told me they can't force professors to exempt me from anything but will help with negotiation of needed).

 

[crohnsinct]

O is also looking at schools this year and as far away as the other side of the country. At this point, we are not talking to disability services. We will wait until the list gets whittled down and she gets her acceptances.

At her last appointment with the GI she discussed college. Since she is doing pretty well, he encouraged her to go anywhere she wants. Once she decides where she is going she is to tell her GI and he will find a doc for her. Her doc here will be the lead doc on her case but the local GI will give infusions and take care of anything that might pop up.

We started at her last appointment having her take over the whole conversation with me just in the room as any decisions re meds etc need my approval because of her age. Also, the plan is as things pop up for her or if there is anything concerning to have her email the GI. It is all part of the way they prepare the kids to transition to adult care.

 

[Jmrogers4]

We started the college visits over spring break. We did talk to the disability office at the colleges (except one but they were on spring break as well and everything was closed). They were actually very helpful as most of our questions regarded housing at this point. (I also checked where the nearest hospital was).
Can I tell you about my freak out moment and actually remained calm and didn't embarrass him. One the universities had a large greek system and our tour guide just happened to be president of one of the fraternities. He and Jack really hit it off and he asked if he wanted to see a fraternity house, of course Jack said yes so off we go. The house was actually pretty clean, the bedrooms he showed us were as well. Then he showed us where the freshman would sleep :ywow: big room with rows of bunk beds and an open window where he proceeds to tell us the window has to stay open year round (it was snowing the day we visited) because of the bacteria growth and all the freshman get sick but don't worry you'll have the strongest immune system after that. Do you know how hard it was not to scream "there's no fricking way you are living here in those conditions!" and drag him out. I waited until the next day until I was sure I could be calm before telling him what a horrible idea that was.
Luckily we were headed to good friends to stay the night and I could have a nice BIG glass of wine. Of course this school now happens to be his #1 choice but I have a whole year to work on him. BwaaahaaaHaa

 

[Tesscorm]

Omg, poor you!!! :lol:

 

[xmdmom]

Not much to add except I think it helps to have a good hospital and good doctor near by for emergencies even if your kid plans to keep old doctor.

 

[awmom]

Hi Mehita, sorry I'm late coming into this. N is in his second year of college 2 hours away. He refused to sign up with the disability office and while I had many reservations about this, I had to respect it.

Since there would be no assurance as to which dorm he would be assigned to, meaning we would not know if he would have to share bathrooms, who he would have to room with, etc., he took it upon himself to find a friend to room with and we got him into a private dorm (same price as the college one) where he was assured of a room with a shared bathroom.

The food was the biggest issue for him. We talked to the people in the dorm and they assured us that he could always ask for eggs, or a broiled piece of meat if nothing else in the menu suited him. The problem with this is that he never wanted to ask them to prepare something special because it took too much time and because he didn't want to set himself apart. What I ended up doing was bringing him food from home every other week, and then I found someone to cook for him and bring him meals on alternate weeks. This helped immensely!! He also had Peptamen to fall back on. For him, I do believe that finding food he could eat created a lot of anxiety. For his second year, he moved into an apartment, with the same friend, where they now have a kitchen, and he has actually learned to cook!! Next year they are moving to a house with another friend where all three will have to share a bathroom!!!

Regarding his doctor. He kept his same pedi doc for the first year. This past year, and after several tries with docs in his college town, we found someone we liked, and he is now handling all of his appointments by himself. Having said this, I will be talking to his doc this week as I have several questions.

I also found an infusion center for him that is fairly close to the university where he gets his remicade. He likes this infusion center much better than the one at home and also better than the one owned by his GI group. Luckily his new GI let him continue there. He will be doing an internship in California this summer and will need to find an infusion center there.

As far as getting sick, I am knocking on wood, he has been able to stay healthy. This, in spite of taking remi and Mtx and not keeping his apartment in the most sanitary of conditions I'm sure!!

The hardest part for me has been not being able to see him every day to determine how he is doing, since he always says he's fine, even when he is not. That, and letting go of his medical stuff since I don't trust that he will tell a doc everything, and that the doc might miss something. These past 6 months are the first I have not had access to his lab work because they changed the system....but'll be calling about that soon.

I worry every single day, but I know that he has to learn to manage. I am proud of him for
taking charge the way he has, even though I know he is not doing everything I wish he would (i.e. supplements, exercise, scrubbing his kitchen...). I am glad he is not too far from home and I can help out as needed.

Wishing you both happy college hunting!!

 

[kimmidwife]

We visited the local community college this past week. They asked for a copy of Caitlyn's old IEP for the disability office. Since she homeschooled high school I need to search for it. Thought I would pass this on in case the schools you visit ask for an IEP or 504 plan.