Community Forum

college student with crohn's--disabled student?Has anyone out there applied for disabled student status from their college?

My sons school seems to encourage it, as does the CCFA website.

I did not consider it until after his first quarter at school, my son came home 17 lbs lighter (6ft1", 140 lbs) and very sick with an abcess/fistula.

Yesterday he had surg. to drain the abcess, unroof the fistula as much as possible and had a seton put in.  He goes back to school 3 days.

His gastro. said he had never head of anybody applying for disabled student status because of crohns.  It isnt like he needs a translator or a reader-just maybe scheduling priority so he can leave one day a week open for the 600 mile round-trip home for treatment.  Our healthcare doesnt have offices in San Luis Obispo.

Does anybody have experience with college and crohns?

Thanks in advance,

Sue

 Reply posted for aloinca.

Thanks for your reply!  I wish we had done this before he showed evidence of being really sick...we are in the process of applying--just waiting on the HMO, which they said could take a few weeks.  So he will miss out on applying for classes early, but if he is able to stay in college, will benefit for the next quarter.

How is your son doing in college with crohn's?

 Reply posted for sueymac.

my son's university's definition of  a disability includes chronic illness.  his physician signed a form the school provided and my son filed it in the office for accessible education.  (each college calls it something else).  he was able to get a single room at the double dorm room rate.   the oae states that most diababilties are not visible.  i suggest you file for the disability and encourage your son to make a well appointment at the student health center to record his health history.  sounds like a dumb waste of time to a college kid, but if he gets ill, he'll be happy they have a chart on him already.

 Reply posted for alteredsight.

Thanks for your helpful reply.  You make a good point with the disability thing for the future.  I have been trying not to worry about when he is out of college--just hoping he will always have a job with health insurance!

I really appreciate your input--keep up the good work!

 Reply posted for sueymac.

I'm not sure if anybody touched on this but here goes.

I am a 23 year old college student with Crohn's, Hashimoto's, Autoimmune Pancreatitis, Chronic Anemia and Arthritis.  My school has what they call The Office of Disability Services.  If his school has the same, and I do not see why they wouldn't, yes he can absolutely register with them.  He is technically medically disabled.  Just becuase his problem is on the inside it is no less legitimate and it most certainly affects his ablitliy to go to school.  For me personally, professors are required to find a note-taker for me and they are urged to be understanding of my absences.

You may also want to apply for federal disability.  I assume he is on your inssurance and that he probably can't stay on it once he is not a student anymore.  With his condition he can't realistically be without health insurance.  Disability would allow him to get medicaid.  Also there my be programs to help him pay for some of his school expenses as well as offer resources to help him seek and attain employment with employers sympathetic to his particular condition.

I hope this helps.

 Reply posted for jesspt.

It is nice to hear of someone being able to maintain their education!

I did talk to someone in the disabled student services office and they were very supportive.  Because our health plan currently requires us to get our son and bring him home for treatment (a 1200mile trip for us, up and back twice), our son could benefit from getting a schedule with one day class-free.  He is still missing study groups and work time--but at least not an actual lecture.

Good luck with your studies and thanks for replying.

 Reply posted for sueymac.

I am currently a grad student and I've been living with CD for 12 years.  I didn't apply for disability for my undergrad or my current schooling.  However, during undergrad I did let most of professors know about my CD.  They were very accommodating about restroom breaks, getting excused from class/labs, though I did go to a smaller university.

 Reply posted for sueymac.

My son's surgery sounds very similar (fistulotomy).  After reading your post we even used your description of "unroof" with the doctor and he began using it to describe the procedure.  My son does not have a Seton.  Can your son feel it, like a foreign "thing"?  Does it wick/drain much?  

My son is in eighth grade.  He has been getting straight As, has been extremely outgoing and/but a class clown.  This has been a blow to his ego.  I also have a son who is a second year college student (he is the one I always thought would have Crohn's (because of heredity and he has always been undernourished looking), he is 6ft and weights 143 lbs.)  So in reading your post ,I try to imagine how he would feel away from home dealing with this.

I would think you could switch out the showerhead for a handheld without any problem (we just unscrewed one and screwed on the new one). Others in the family wanted to be sure it maintained the same water pressure.   We chose a Waterpik from Target, but there are a variety.  The dr explained that the foam soap is less dense to rinse off and because it is foamy it gets into everywhere it needs to. My son did not like the thin pads, so the gauze helps give him confidence.  It is basically the type of wound dressing they sent him home with. 

This week we have our first appointment with a Pediatric GI at the Univ of Michigan.  We are trying to maximize my son's growth.  He is 80 lbs and 5ft 2in.  He is the second smallest in his grade, but  is an older eighth grader.

Wishing you the strength (because I know the stress and worry wear you down) to guide your son. 

college student with crohn's--disabled student?Thank you for the details--I am assuming your son had similar surg? Is he in high school or college?  My sons college apt. doesnt have the handheld--my hotel room did and he was showering there while I stayed in our town.  We have a great handheld that installs easily without much altering the shower (purchased for bathing the dog)...I wonder if the school would let us install that?  Hmmm.

The antibiotic cream is a good idea..so far he is just using something like calmoseptine which is a barrier ointment.  He has gone from the fat pads to slim minipads applied to his underpants, but I thinkI will send your descrip to him to see if that would be better. 

Each day he seems to be in less pain.  The seton is annoying more than painful.  I think he will last the quarter at this point.  He should be starting Remicade soon.  Now I am just seeing if ***can let my son go to ***, which is only two hours from school as opposed to five hours, for Remicade.  Either way, we will be doing ALOT of driving, but would do anything to help him feel better.

Thank you very much for valuable insight!

 

 Reply posted for sueymac.

I hope by now that your son is feeling alot better.  My son is anxious to start basketball but our visit (1/709) to the colorectal surgeon has us waiting until Monday for a sports physical.  I am writing because in the four days we have been following some suggestions by the doctor -- my son's wound is much closer to being healed. 

The doctor suggested a handheld shower head and foam soap (of any kind, antibacterial/plain soap he said their all the same),  He said to use foam soap in your hand right on the wound and rinse before and after with the shower head directly.  Use a gauze pad to press against the wound and remove any mucuous add a layer of triple anitbiotic first aid cream and you are done.  My son likes to add a guaze pad without the paper lining (BandAid brand) and cloth tape (like in a tape type dispenser) a few times at the top and once between the legs.  This keeps clothes from absorbing the anitbiotic cream or any discharge.  I am truly amazed at how quickly doing this, 3X a day (before school, afterschool and before bed)  has made the wound smaller and closed up.  I wish we had known three weeks ago.  Plain showers and sitz baths had not made much difference--but did keep it from being infected.

Just thought I'd pass along something that helped us. 

 Reply posted for fushiastarz.

Thank you so much for your good information.  I hope your son heals very quickly.

My son is now resting after a shower .  We made the 5hr drive to his college town .  He walked (awkwardly) with me to get his textbooks.

He is doing a little better everyday.  I am glad he is trying to get back to school.  I am staying in a hotel in his town for most of the week to make sure he is ok.  If he decides it is too much, we will at least have tried.

Tomorrow I will go on campus to visit the health center and the disabled student offices.

No one would wish this upon anybody--but when I read aloud to him about your son I think it helped to make my son not feel like the only soul to endure this.

thank you very much for taking the time to help!

Sue

 Reply posted for sueymac.

I would definitely let the college know about your son's Crohn's and ask for Disabled status.  My son is 14 years old and we have done that through school here. They have been accomodating.  We too are dealing with a holiday season abcess/fistula wound care situation. My son's surgery was December 15th  it is not completely healed yet.  However, he did not have a Seton put in.  He wants to snowboard and play basketball and is very frustrated by the slow healing time.  I hope the Seton allows for a quick return to school and activities.  With the disabled status possibly your son  would be excused to return home for having the doctor's office check him or give treatment.  My sister is a homecare nurse and says she has patients that take weeks to heal-- and that is with a nurse coming in for wound dressing changes.  My sis also suggested taking a multi-vitamin, drinking fluids  and showering several times a day. Wishing you both a quick recovery.  You are not alone.

 Reply posted for sueymac.

Hi there!  I wasn't diagnosed with CD until I was 27 and out of college, but I believe I had been suffering from the symptoms since high school (I didn't know they were all related until I wound up in the hospital with an abscess that had to be drained July/Aug '07).

From your last post it seemed as if you were going to help your son register the disability.  If it helps teachers be that little bit more understanding when classes, quizes and exams are missed it's well worth it.  I remember vividly throwing up/getting the dry heaves seven times in one night during college.  I even crawled into bed with my mom for comfort!!  I stayed home the next day and missed a history quiz.  In a class with 100+ students the teacher didn't allow any make-ups.  Perhaps if I and the teacher knew about my condition at the time, he would've made an exception.  One quiz isn't the end of the world, but you just never know when a flare is going to hit and may need the consideration.  In my own personal tale, I was in the hospital for a total of 17 days.  Very luckily I was discharged the night before my sister's wedding! 

On a side note, I met a representative for the www.chronsandme.com organization at a seminar and he mentioned that they offer scholarships to those with CD and attending school.  Just wanted to pass this along in case you'd like to look into financial assistance for college.  Every little bit helps!

Take care and good luck.  I hope your son recovers quickly from the abscess and fistula.

Jen

 Reply posted for krii.

Thank you for your replies.

It has been a hard time.  Today I had to unpack and pack his wound from his surgery.  He was good and it went ok.  I will try to have some medical person check it out tomorrow and then hope all looks good to head back to college on Sun.  Once there, I will go to the Disabled Student office and talk to the people there.  I am going to stay a few days to deal with the wound if nec.  Am also looking into getting a wound nurse to treat him there if needed.

I appreciate your reponses very much.  This is uncharted territory and it feels kind of nightmarish right now.

Sue

 Reply posted for sueymac.

I don't know about Crohn's, but if your child has ADD, you can file for a special variance to your college to allow your son to have deadlines customized to him.  Especially allowing him extra time to make up the work he has missed.  With my daughter, the school had an application that the dr. needed to sign off on.  I think the dr. stated different ways that the college needed to accomodate her, like with extra time on tests because she had such a hard time focussing.  Hope this helps.  Christine

 Reply posted for sueymac.

I would absolutely encourage your son to apply for whatever he needs to get through school successfully. I have a friend who teaches at a large university, and one of his students has Crohn's. Once the faculty is aware of it, they are usually very understanding. Dealing with this disease is stressful enough, without the added pressure of "punishment" or consequence for having to miss a school or work event for an MD appointment or even a trip to the bathroom.

I'm a nurse, and I've had to set up family medical leave (FMLA) to protect my job. It's in place on an as-needed basis, and I have up to 12 weeks a year that I can call in sick for, anytime I need to. Best wishes!