Remicade and going off to college

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awoenker12

awoenker12

Joined
Jun 3, 2018
Messages
182
Location
Chicago, Illinois
Hey everybody, I hope all you guys are well in these uncertain times. I am currently a high school senior and I am about ready to make my final decision on where i will be going to college this fall. A big concern between my parents and me is getting access to treatment. The school that I am leaning towards choosing, Iowa State, is about 5 hours away from home, which means if I were to attend, I would most likely need to arrange for treatments done there. My second choice school, UIC, is about an hour from my house, which means I could easily come home to get treatment done, however, it isn't necessarily more convenient. My current infusion center is only open from Monday-Thursday until 5, which makes it a bit more difficult. I would really like to go to Iowa State, but I think getting access to treatment is going to be the back breaker in the decision. Plus, I think my parents would like to see me go to UIC just for the convenience of everything, which upsets me.

Parents with kids in college, how do you guys manage everything with treatment? Did your son/daughter go to a school close to home for convenience of treatment so they could come home and get it done or did you allow them to far from home with treatments set up close to their school? I would appreciate anyone's feedback and advice as this is a very difficult decision for both me and my parents.
 
@awoenker12 - this is an exciting time for you! My son happened to want to go to a university driving distance to home and I am retired so these circumstances are different than yours. My son is on remicade and is on monthly infusions but we live in the Toronto area and have quite a few infusion sites to pick from with varying hours including weekends so it does make it easy when there is more flexibility. Did you try finding out what your options would be in Iowa? Could a nurse comed to your dorm. I don't live in the US but I know that @crohnsinct has a daughter in a remote area of the USA and was on Remicade while attending. I hope she might be able to offer you some suggestions. Don't give up on your dream - see what your options are first. Good luck and keep us posted.
 
@awoenker12 - these are always tough decisions to make but, often, with the right prep and research, things can work out.

My son went to school approx. 2 hours away from home. In Ontario (perhaps, Canada) infusions are done at Inviva, the company offers a number of infusion centres. This allowed him the choice to have infusions at the centre close to us (he would come home on those weekends) or, if it wasn't convenient, he was able to reschedule his infusion to a location close to his school. I don't think it works this way in the U.S., however, as Jo-mom said, there are some who have arranged for their infusions to be close to school (@crohnsinct @Jmrogers4 @Maya142 and @xmdmom might have suggestions). Try to ask your GI's office, ask the nurses at your infusion centre if they are aware of locations close to Iowa State and Janssen (manufacturer of Remicade - their client services dept may have a suggestion).

With regards to your parents' concerns, have you been in remission for a long period? Are they concerned about a flare? Would you be transferring to a local GI or staying with the one that you currently see? Do you anticipate that this would be a problem one way or the other?

In my son's case, his crohns was stable throughout his time away at school, however, he did have a number of injuries (unrelated to crohns) and quite a few infections (respiratory, skin rashes, etc. - likely some connection to immune suppression). The injuries and infections resulted in my son visiting the local ER a few times as well as quite a few visits to walk-in clinics. This then resulted in a few extra appointments with his GI due to concerns relating to respiratory infections, etc. I'm not telling you this to discourage you from going away to school, only to suggest you make some plans for this... discuss with your parents and GI if transferring your care to a local GI makes sense. How often do you plan to visit home, can follow ups with your GI be done then? Can you also transfer care to a local GP (so you can avoid walk-in clinics)?

Also, don't forget to register with the disability office at each school. Perhaps, look into the options at both schools and see what assistance they can offer.

If you have any other questions, feel free to ask.
 
Something else to look into...

What housing is available? When my son registered, he was able to request an apartment style residence due to crohns. His residence apartment offered it's own kitchen and greater privacy for bathroom (apartment had 4 bedrooms, 2 bathrooms and full size kitchen). This allowed him to keep his own food and prepare his meals. The alternative would have been no kitchen or sharing one kitchen for the entire floor (which would have meant much more take-out food).

(Our schools typically only offer residence for the first year, so from 2nd onward, he shared an apartment with friends.)

Not sure if this is an issue for you but, to maintain nutrition levels, my son also drank a couple of Boost nutrition shakes every day. It become more of a convenience for him, ie quicker than making breakfast and replaced a junk food breakfast and an easy snack mid day. But, from a parent's perspective, it reassured me that, whatever else he was eating, at least he had that basic nutrition.

How often do you have infusions? If it's every 8 weeks, is it possible for you to continue having infusions near home? My son came home for most infusions (every 6 weeks) and it gave us a chance to see him and he was able to see friends who'd stayed close to home. (But, I realize my son was only 2 hours away.)

Having these arrangements/plans in place may help alleviate your parents' concerns. :)
 
My parents and I definitely agree that we will have to set up infusions done close to the university no matter which school I choose.

As for my condition, I have been in remission for about one and a half years now, so things have been fairly stable. I'm not worried about any flare-ups in the near future, but I do think that might be a concern for my parents. Even though I am fine without my own personal bathroom, my mom wants me to have one which I guess isn't a bad idea in case things do get bad. Forgot to mention-my infusions are once every 7 weeks.

My GI doctor said he would be willing to still see me when I am home during the summer or on school breaks. He also said that he would help me find a doctor near the university if I were to go Iowa State. Same goes for my current infusion center.

Do you think that it is a good idea to stay close to home or do you think that it is ok to go far since my condition is stable?
 
It's tough to answer that question...

In hindsight, for the most part, my son would have been okay to be 5 hours away. But, having said that, in addition to his regular visits home (which included most of his infusions every six weeks), over the four years, I probably went out to pick him up 10 times due to 'something else' (injury, infection, etc.). Aside from medical reasons, because it was only 2 hours, there were other times I drove out because he wanted something from home or I was taking him some homecooked meals (and I didn't mind because it was an excuse for me to see him and 2 hours isn't terrible). These things are much harder when it's a 5 hour drive each way.

Maybe you need to answer some questions yourself...

- how would you feel if you needed to go to ER or a walk-in on your own? Not for crohns but related infections, etc. Living in a dorm leaves you vulnerable to catching a lot more infections (my son had TONS while at school, yet maybe only one or two since he's finished and has moved out of that environment). Would you feel comfortable managing your medical care, on your own, making the decisions, taking care of yourself even when not feeling 100%?

- will you have anyone else close to you? Any current friends going to the same school as you?

- How about taking care of yourself? Because we were close by, my son did 90% of his laundry, shopping, etc. but, being close to home did allow us to help him with some of that...

There's definite advantages to being closer to home BUT as you've been in remission for a while, if you're responsible with your own care, and you can find an infusion centre, etc close by, you'll probably be fine being away.

I know my son really enjoyed being away and he really came thru in taking care of himself. :)


If, after one year, being 5 hours away really isn't working for you and your parents, would it be possible to switch to the closer school?
 
Tesscorm makes good points. You might want to make a list of pros and cons of attending each school. If your heart is set for Iowa State but you choose the other in case you get a flare or an infection, but you remain healthy during your school years, will you have regrets for not going to your #1 choice? When do you have to make this decision? Do you have time to figure out the scenarios and then make an informed decision. Of course, being a parent, I would prefer the closer location. Things always have a way of working out so whatever you choose, I'm sure you will do well.
 
I have about 3 weeks to make a decision. Even though they are extending decision deadlines into the summer due to the current pandemic, my high school guidance counselor is requiring us to make a decision before we graduate which frustrates me a bit since graduation as of right now is May 16, although they will probably move that into the summer.

I think that with either school that I go to, I don't think that I will necessarily have problems with taking care of myself and doing things such as my own laundry, chores, etc. but the thing is from my parents perspective, going close to home provides more of a safety net to fall onto rather than going far, in the incidence of a "what if" situation arises.

The biggest thing that turns me down about going to school close to home is that the school is located in Chicago and I would prefer not to be in a large city. That is why I am leaning towards Iowa State, it is in a small town/ rural setting which I really like and their campus is much nicer than the school in the city. Also, there are a small number of students from my high school who will be attending Iowa State a couple of which are somewhat close friends, but I have one really close friend that is going to the school in the city which makes me not entirely upset if I chose to go there.
 
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Things we have Ds considering for college
How far is the Gi office for routine check ups /blood work ?
How far is the hospital for ER visits /imaging /scopes ?
Regular visits will that interfere with missing class time /labs due to distance .
What is the schools office of disabilities like ?
Do they standards in place for NOT dropping your grade due to medical abscence?
Stop the clock testing if your flaring ?
Do they offer tuition insurance if you need to take medical leave and when is the cutoff ?
Transportation to the Gi /hospital is it available ?

good luck
 
How far is the Gi office for routine check ups /blood work ?
How far is the hospital for ER visits /imaging /scopes ?
Click to expand...
I didn't think about a place to get my blood work done. At Iowa State, since it is in a small town/rural setting there might be a limited number of options from hospitals to infusion centers to GI doctors available. I have reached out to Iowa State and say that they can help me set up a proper care plan for my condition.
How far is the hospital for ER visits /imaging /scopes ?
Regular visits will that interfere with missing class time /labs due to distance .
Click to expand...
This is probably not as much of an issue if I chose the school in the city since I would probably have many more options.
Do they standards in place for NOT dropping your grade due to medical abscence?
Stop the clock testing if your flaring ?
Do they offer tuition insurance if you need to take medical leave and when is the cutoff ?
Transportation to the Gi /hospital is it available ?
Click to expand...
I have no idea if either of my schools have these options, so I will definitely look into this.
 
I don't know how I missed the tag for this!

Congratulations on your graduation, acceptances and finding a school that you really like! ALL major accomplishments!

First, what business is it of your guidance counselor to force you to make a decision before the deadline?! They are just worried about their statistics to report i.e.: how many kids going to 2 year vs 4 year schools, acceptance rates, and advertising what schools kids are going to. Don't let them force you to make a decision before you are completely ready.

That said, it sounds like you already really know where you want to go.

I am hesitant to tell you my daughter's story because depending on how you want to look at it, it can be argued either way.

When my daughter was in high school her GI was emphatic that her Crohn's not factor into her decision at all. He said people all over the world have Crohn's and are able to get care and that he could connect with a GI anywhere and work with them to coordinate her care.

Of course, my daughter picked a school clear across the country (a 7 hour plane flight, then a two hour drive from the airport to her school). Her school in in a pretty rural area with no major hospital. Just a small regional medical center. There are literally no GI's closer than two hours away. However, it is a large state school so the school has a well staffed medical center complete with a lab, radiology, 5 MD's, lots of nurses, nurse practitioners etc.

We had trouble finding an infusion center for her so opted for home infusions. It worked out great for her. The meds were shipped to the medical center where she picked them up and brought them to her room and put them in her fridge. The home care nurse came straight to her room and did the infusion at any time that worked for her. She says she will never go back to center infusions. She is now a rising senior in college.

My daughter lived in a suite style room. 4 single rooms and two bathrooms. So semi private bathroom but really no privacy. No kitchen facitlities so meal plan only.

She went to school already flaring quite a bit but the med center at school would call her GI to coordinate and her GI back home called all the shots with regard to treatment plan. She would go to the local lab (Quest or Labcorp) to get labs done.

In her junior year, she got very, very sick with her Crohn's. Her GI sent her to the local rural hospital. She was septic and in the E.R. for a day while they debated air lifting her to another hospital in a major city two hours away. But there are great doctors everywhere and the docs at this little hospital (a few of which were educated at some amazing major medical centers) did a great job. We ended up deciding to admit her there and although there was no GI on staff, the hospitalist called our GI every day and went over the plan and results etc. I honestly think she got better are there as the docs were humble and non territorial. Had we transferred her to the major hospital with their own GI staff they may not have let her GI have any opinion in the matter. She was eventually discharged, withdrew from her semester and came home. She actually spent another month in the hospital here at home. She will be graduating a semester after she had originally planned to graduate.

The thing with Crohn's is it rarely is a life or death situation where you don't have the luxury of 5 or 6 hours to get home or even a day to give someone time to come and get you and bring you home. You generally know something isn't right and feel yourself trending in a bad direction and can call your GI, get appropriate labs, a visit for an exam etc. If it is serious enough that you feel you need an exam with your GI, the missed day of school doesn't matter. BUT those are not the usual cases. I honestly think my daughter's dramatic situation was because she wasn't paying attention to symptoms and signs and just being stubborn about not missing school.

Having been through all that, would I change anything? NOT ONE BIT! As a matter of fact my second daughter with Crohn's just committed to her school also clear across the country and also in a remote town. She went one step further than her sister and picked a tiny school so not even a decent medical center on campus! But she loved the school and there are hospitals everywhere. She has already been doing home infusions through high school so will continue home infusions at college. The school only has one cafeteria and she will be in traditional dorms with a hall bath shared around twenty something other students.

If both schools were dead even, I would say go ahead and pick the closer school. But since you really love the one school and if there are no other concerns i.e.cost etc, life is too short to not go after your dream and be happy. To make a decision on the off chance that you might flare will only leave you with regrets should you not flare at all over the 4 years. Worst case is you pick the school you like and it is a logistical nightmare and you transfer.

You can have you parents PM me with any questions or just ask them here if you want.

One bit of advice (if it hasn't been mentioned already). Get tuition insurance before your freshman year for the entire 4 years. This will protect you in the case you have to withdraw from a semester due to medical reasons. If you get it while you are well and from the beginning there is no pre existing condition clause.

Good Luck!
 
Oh wait! I just read that the other choice is Chicago...all bets are off! I am a city gal and my favorite city is Chicago so you know where I think you should go 😂 JK...if you aren't a "city" person and prefer the burbs that is a big consideration.

Most schools have a disability services department, especially larger state schools. We could all give you a list of things to ask for but in general they are usually pretty cooperative.

AS far as coming home for GI visits etc. If you are stable you could probably get away with every 6 months. But even if you go more frequently, most colleges have a fall break in October. You could get home then. Most finish first semester mid December and you are off until mid January. That is another chance for a visit. My daughter's friends all have a 4 day weekend some time in February and then March spring break and you are home Mid May. There are lots of chances to come home but know that if you choose to go further away you are probably choosing not to go away on fun trips with friends during those short breaks or not staying at school to have fun during those short breaks because you have to go home for an appointment. This being said, my daughter somehow managed to sweet talk her GI to not require her to come home a lot. My bank account thanks him because it meant shuttle service to airport and a flight!
 
crohnsinct, I really appreciate the feedback! Growing up and living in the Chicago suburbs for 18 years has been really nice and I do like the area, but I am ready for a change in scenery. I have reached out to someone at Iowa State regarding my condition and they have said that they are willing to work with me and my current GI doctor in making a nice transition if I were to attend. For the past year, I have been only seeing my GI once every six months; same goes for my blood work. Also if I were to attend Iowa State, I would only come home probably for a few days in the fall, Christmas, and Spring Break.

I will have to see how this pandemic pans out too. I really hope campuses and universities will be open for the fall semester, but we will see. My school just moved our graduation ceremony to July 25, so I hope by then things will be re-opened.
 
Yeah...it is so sad what happened to all you seniors. I am glad your school is still planning a graduation. Our local school is just doing an online tribute of sorts.

You have a great point - experiencing another area/way of life etc is such a great aspect of school. Being coast people (first the NY metro area and now the San Fran area) we never had an appreciation for the rural and middle of the country way. That is changing rapidly with both of my girls' college choices.

Yep - my girls are both fretting over whether or not schools will be able to open in the fall. With the second corona wave expected to hit in the late fall who knows what will happen.

It sounds like you are picking a great school if they are so willing to work with you and your GI to help you find care locally. That alone would give me as a parent the warm and fuzzies and make me feel like my child would be well cared for in all respects.

You are a very mature young adult. Your parents should be proud!

Good luck and please keep us posted!
 
I thought I might as well provide an update. I worked out a plan where I am going to accept Iowa State, but if they continue to do online learning, but the school in Chicago has in-person learning, then I would probably switch to the school in Chicago. Or if they both have online learning, then i'll still stick with Iowa State. I thought this was a good way to keep my options open in case something like this were to happen. Both schools have been very understanding which I really appreciate.
 
That sounds great!!! Wishing you all the best luck, at whichever school you end up! :cool:
 
You way want to consider that Des Moines is only about 30 minutes from Ames, so accessing medical care shouldn't be too big of an issue.
 
Sorry, I just saw the tag... Yes my son is currently in college just finished junior year. My son is about 4 hours away so you're right not doable or practical for infusions but kept his doctor here, he is still in the same state though.
He has infusions done by a home health nurse who came to his dorm freshman year and now his apartment. We worked to set it up with his local GI before he left started about 4 months prior just to make sure we got all authorizations in place.
The biggest thing we did was worked with the disability office at the school for his housing so that he was in a suite. He had his own room and their was a kitchenette with a full size fridge and a small living area. His remicade was mailed to arrive the day before his infusion and was kept cold and he would put in his fridge when it came. Having his own room was nice as it gave a private place to receive his infusion.
He is in a small college town and there is not an infusion center there so this was the best option for him. He has friends who are attending school in larger areas with infusion centers and are getting infusions there.
Another thing to work out with disability office is getting notes/professors notes for absences due to treatment etc. He was always able to schedule his infusion between classes so never had to miss class but it's a good idea to have it in place before hand.
Good luck to you and congratulations on graduation!
 
Hey everybody, I think it is time for me to give an update. I ultimately chose to attend Iowa State, and I accepted my offer late, back at the beginning of June. So, at the time, I was worried that I would end up with one of my non-preferred housing options. And I was in for quite a surprise.

I ended up getting one of the suite styled dorms which was really nice. I was assigned a single room, all to myself, no roommate. In the single suites, you get to share a bathroom with the single suite next door. It gets even better. Apparently, my "suite mate" canceled his housing contract, so no one ever moved in next door. So that means I have an entire bathroom all to myself! What a coincidence!

Even though my condition is under control, having your own bathroom is nice even without Crohn's. The dining center food is 4.5/5 here and I try to watch what I eat. I mean, I can eat just about anything and I'll be alright. I just try to still eat healthy though.

As far as my Remicade infusions, the place where I got my infusions back home was part of a infusion clinic called Metro Infusion. What's great is that just before I moved in back in mid-August, a Metro Infusion Center opened up 2 miles away from campus! That meant that I could still receive my infusions through the same network! And what's even better is that the infusion clinic here by campus is much nicer than the one at home, except the only downside is that they didn't have wifi when I went to my first infusion there back in mid-September, but they should have it by the time I have my next infusion.

So for the most part, I'm doing well and college has been going really smoothly. I have a hybrid schedule with some in-person and some online and I feel like it is a really good mix. Anyway, thanks for the support everybody!
 
That's great, glad things are going well. My son had a suite style also, he still had 3 others in the suite. They all had their own room but shared a bathroom, living room and kitchenette, it even had a washer and dryer in the suite it was great.
Good luck with school hope the wifi is up and running for your next infusion
 

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