College and Chronic Illness

Parents Forum
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<p>As we are contemplating my daugther's options for schools, I keep in the back of my mind health issues. My D has ulcerative colitis (a chronic illness in the family of Chrohn's disease) and requires ongoing medical treatment from a specialist. The schools that she is most interested in are all the way across the country, so there is no likelihood that she can come back periodically for check-ups she needs. </p>

<p>While I may be worrying prematurely, I am wondering if anyone else has had to deal with these issues. How good are the health centers at the universities? Do they have access to specialists for referals such as these or will we have to seek out someone? What about obtaining ongoing medication (my D takes about 25 pills daily)? What information do we need to provide up front--so far we have not mentioned anything about this in any of the application process? Should the available health care facilities be a consideration in the selection process? Am I worrying too much?</p>

<p>Also, for those of you who have gone through this, how have your sons and daughters handled it? Or if there are any students who are in similar circumstances, what have you found helpful in the transition? </p>

<p>I imagine my daughter getting caught up in the transistion, forgetting to take her medication and having a major relapse (again, just the worrying side of me coming out). Not that I think she is irresponsible, but she has a tendency to get caught up in the moment sometimes. She is also reluctant to talk about her condition; I remember her telling me as I drove her to the hospital to be admitted during the flare up when she was originally diagnosed that she had suffered from bouts like that since sixth grade--she was diagnosed during her junior year in high school--but didn't want to tell anyone because she was scared of what it might be. She is older and hopefully wiser, but in a new environment I don't know what she might do.</p>

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<p><a href="http://www.ccfa.org/about/news/mccreadypsa%5B/url%5D"&gt;http://www.ccfa.org/about/news/mccreadypsa&lt;/a&gt;&lt;/p>

<p>I don't have kids with a chronic illness, but coincidentally- last night my book group was held at a friends who has crohns disease and in two weeks I will be going to a benefit concert put on by a rock star with crohns. Visibilty & education is important to getting more research and help for sufferers.
Health care is important and I believe that you should ask as many questions as you need to to be satisfied. University medical centers are generally very good if they have a medical school, and if the university is put off by your inquiries, it wouldn't be where she wants to attend anyway.(oh I was speaking of using private insurance and finding a doctor in the area- the student health centers are understaffed and overstressed
A friend of Ds has rhematoid arthritis and takes lots of pills and has often been confined to her room because of pain and lack of mobility. She was able to graduate from a small LAC just using local resources and she has since moved to a larger city where she is coping relatively well.
It is scary when kids ahve a big medical problem- but most areas will have good doctors that should be able to work with her local doctor to coordinate her care.</p>

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<p>Lp75,</p>

<p>My dear, I am where you are. My DD is a graduate student now at UPenn, and has been dealing with Crohn's disease since she was eleven. (It was misdiagnosed as ulcerative colitis for the first 10 years.) The illness affects individuals so very differently that it is difficult to say how your child will be in a college setting. My daugher's experience was to have major flare-ups every three years, two of which required hospitalization. The first hospitalization was at the of her freshman year at Swarthmore (the College let her take incompletes and she finished her exams/papers in early June) and the last was April of this last year. It was really scary as the hospitalization lasted three weeks, she had two majors and comprehensives in both. She was absolutely determined to graduate, and as soon as she got out of the hospital in May, she went right back to school.</p>

<p>The most difficult thing for me is that the college health center did not know what to look for when she got sick her freshman year. When she went to see them, they put her on prednisone and sent her back to the dorm, saying to come back in TWO WEEKS> she was seriously dehydrated and feverish after one week and they realized they needed to send her to the emergency room. My child is tough, and she would not let on to me how badly she was feeling, she was making almost all of her classes, and none of the faculty knew what she was going through. It is such a private thing, and she refuses to be treated like a sick person. </p>

<p>So, my advice to you is to find out who the really good gastro guys are in the areas your child is considering college and make contact asap after she decides to enroll. Our good news is that my daughter was referred her senior year to a wonderful doctor at the UPenn Hospital when she had the most recent flare, he diagnosed her as having Crohn's & put her on Remicade; he is one of the people who first developed Remicade, the designer drug which has (so far) worked well for her. And since she is at UPenn now, she can see him regularly with ease, get her infusions right where she goes to school.</p>

<p>Another thing you will want to check is to see how your medical insurance will work in the state where your daughter goes to college. That was a little crazy for us, as we are in Tennessee, and a lot of issues had to be clarified.</p>

<p>When my daughter was hospitalized, I did stay with her in the hospital, which I would have done if she had been hospitalized in our hometown, so it didn't seem so different to have her far away, but I know I would have been able to tell she needed help sooner than she got it that first hospitalization. That is the hardest part, even now. </p>

<p>I think you are wise to be concerned, but we really do have to let our children grow. If you can get connected with good health care people, and help your daughter realize she will need to advocate for her care, I think it will be okay. </p>

<p>What a tough road. My heart goes out to you, and I will keep you in my prayers.</p>

<p>I would also like to recommend a good book by a guy named James Lang, called <em>Learning Sickness</em> . He is a college professor who has come to terms with having Crohn's; his story is poignant and helped me understand the psychological aspects of dealing with chronic disease.</p>

<p>Please feel free to PM me anytime!</p>

<p>Blessings!</p>

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<p>Emeraldkity,</p>

<p>Thanks so much for your post, and thanks for the part you will play in helping get funding for the research that might find a cure for these illnesses. Your concern is precious to me.</p>

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<p>" Should the available health care facilities be a consideration in the selection process? Am I worrying too much?"</p>

<p>I think that you are very wise to be concerned. I would suggest not sending your D to any place that lacks a major medical facility in the area and has specialists who are very familiar with her illness.</p>

<p>There is an enormous difference between the medical facilities available in various places in this country. There also are enormous differences in level's of medical professionals' expertise. I moved to a relatively small city a few years ago, and was shocked to find out how difficult it is to get help for fairly routine problems -- the type of things that, frankly, there was an overabundance of excellent specialists available in places like Boston, DC and Detroit.</p>

<p>Sparse as I have found the offerings here, yesterday I learned that an adjacent county doesn't have an obstetrician practicing at its local hospital!</p>

<p>Anyway, you are right to be concerned about your daughter's treatment options. Asking the right questions now, and guiding her to make a choice that takes the medical resources into account, could literally be lifesaving for her.</p>

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<p>well you are very welcome :)
I admit it was altruistic when I attended the first benefit concert last year- it was giving money to a good cause even if I hadn't heard of the cover bands- but most of my favorite band Pearl Jam- in a small club?
I scooped up this years tickets as soon as they came out! I can't say I am not getting anything out of it!
But seriously, it often takes a celebrity with or concerned about the disease to get more publicity and educate the public - look at how much attention Michael J Fox has gotten for Parkinsons.
It can only be positive for people with chronic illness to get support so they can participate in everyday life as much as possible ( and for more funds to go to research)</p>

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<p>Thank you both for your comments, particularly Momofthree. I am in tears right now as I read your responses and I realize how much this has been bothering me. I think back to the days and months before she was diagnosed; to all of the pain she went through, the doctors she visited who had no idea of what she had--even to the point of one saying "I can't diagnose you with your current symptoms. Come back when you have something more that I can work with." (four days before she was hospitalized)</p>

<p>I remember her struggle--if she didn't eat, it wouldn't bother her so she began skipping meals or just having something very light. Her weight dropped to 108 lbs. (she is 5'7") and she looked anorexic. After diagnosis she was placed on prednisone, ending up taking it for about 10 months as she tried to wean herself off of it but the symptoms kept coming back. She is now on an immune suppressant which is helping, but has to have periodic blood work to make sure her white cell count stays high enough and there isn't liver damage. </p>

<p>When we did the early college visits the latter part of her junior year, one of the things she looked for was a hospital close to the campus--just in case. She has been stable for nearly a year now and I think this has receded as a criteria.</p>

<p>Momofthree, like your daughter my D is tough and does not want or expect to be treated differently. She isn't about to admit to anyone that she might have some limitations. That is what scares me the most, and the fact that she will not want me to be worrying about her and will try to protect me from knowing. </p>

<p>Her current doctor is very good about encouraging her to take responsibility for her illness: to learn about it, the medications and the potential pitfalls she may encounter. I only hope she will listen to him. </p>

<p>Thank you for your support and your prayers. I will look for the book also. It is great just knowing someone else who has been through this. I wish the best for your daughter as well.</p>

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<p>Thanks, Lp75! I am a firm believer that prayer works, and I KNOW it is no coincidence that a doctor from "home" (Vanderbilt) has worked with my daughter's doc at Penn and referred her to him. I wonder if your daughter is taking Imuran, which my daughter takes along with the Remicade; her doc thinks it will help the Remicade keep working! It does require bi-weekly blood tests to make sure it isn't having a negative effect on the blood. </p>

<p>I think we just have to count on our kids to take their health seriously, and to be wise. I have come to realize that this is part of HER journey, a scary part, and so hard to let go of for the mom. But as some of my friends who are parents of diabetics have experienced, we do have to trust that they will monitor their health all the time. Too bad there is such a silence about IBD, but with such concerts as Emerald is going to, I think there is a new understanding. Also, the CCFA and many, many folks, made it possilbe to get Congress to pass an IBD act, which you may know of . . .it will provide money for research and supports folks who have become disabled through the disease. I am so hopeful of a cure, for this and for so many autoimmune diseases. Hugs to you!</p>

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<p>Best of luck to you and your daughter, lp75. You're smart to be concerned, and you're obviously also wise in dealing with medical professionals and getting the best care for your child. I'd add the suggestion to check your insurance coverage carefully and line up primary caregivers as well as specialists in your d's location asap. We made assumptions about coverage when our oldest went off to school and had some unpleasant surprises when she suffered a knee injury 2 years later. </p>

<p>A friend of my d's also has Crohn's disease and had several serious recurrences during high school. She chose a college about 30 miles from home and, happily, has been well since starting school. lp75 and momofthree, I hope for the best for your girls!</p>

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<p>Lp75, I commend you for starting this thread and sharing your very understandable concerns - and thank everyone who's posted their own experiences for being so thoughtful to respond with such helpful posts.</p>

<p>Although my own child does not have a chronic illness of this nature, she does have one, albeit a much more manageable one - nevertheless, this is one of my big worries, too: "Will she stay on top of it?" </p>

<p>Basically, I just wanted to let you all know how much this thread has touched home with me. Lp75, momofthree - it sounds to me as though you've got two strong young ladies there.</p>

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<p>Thanks to all of you--Momofthree, Northstarmom, Emeraldkity, Frazzled1, Blumini! It has been amazing really to read your words of support; the practical ideas regarding medical insurance and the success stories of your own sons and daughters.</p>

<p>Momofthree, your statement that "this is part of her journey" is so true, but it doesn't make it any less scary for me. I've done a pretty good job of hiding that so far (I think) because I know she doesn't want to be viewed as a "sick" person, especially by me. </p>

<p>She is, by the way, taking purinethol and colazol which appear to be keeping the flare-ups under control. I didn't know about the IBD act. That is a great step forward.</p>

<p>Blumini, I agree these are strong young ladies. And I share your concern of will she stay on top of it. I hope so.</p>

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<p>I think you should consider having your daughter attend a university that also has a top quality medical school and has its own teaching hospital, or is closely affilated with one -- or a college that is at least in the same city. The issue isn't so much what the health clinic on campus is like for routine care, but where your daughter could go or who she could see in the event that there are complications. Of course you want to check to make sure that the teaching hospital or medical facility would also accept your insurance. Many med school professors also maintain their own private practices and do see private patients. Also, at least where I live -- near UCSF - the medical school not only has its own hospital, but also staffs the local general hospital. </p>

<p>About ten years ago one of my family members had a chronic condition that was eluding diagnosis -- after being referred to one specialist after another who either misdiagnosed or couldn't come up with an answer, he just called the head of the relevant department at UCSF. The doctor there was not only able to properly diagnose the condition, but also was able to tell him how rare, unique & special he was to have that precise combination of symptoms (a mixed blessing, of course). </p>

<p>If you haven't already done something like this, try searching scholar.google.com for medical terms associated with your daughter's conditon -- that will pull up journal articles with the names of the leading researchers in the area, which in turn will give you a good idea of which medical colleges have the leading gastroenterology departments. Also you can browse online medical journals - you don't need access to full text articles, the abstracts and names of authors will tell you where the best work is going on right now. Try Gut online: <a href="http://gut.bmjjournals.com/%5B/url%5D"&gt;http://gut.bmjjournals.com/&lt;/a> - </p>

<p>I want to be clear -- this has absolutely no effect on quality of the college health clinic. But if your concern is what to do in the event of complications or if your daughter's condition gets worse, then it can't hurt to be in a place where leading researchers on the condition are located.</p>

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<p>"But if your concern is what to do in the event of complications or if your daughter's condition gets worse, then it can't hurt to be in a place where leading researchers on the condition are located."</p>

<p>Thank you, calmom, for the website. I agree with your statement and fortunately my daughter has selected schools in larger metropolitan areas. I really am hoping for both a good college health clinic and access to specialists should the need arise. I get the impression that once she decides where she is going, it is important to be proactive in setting up the connections to facilities, including specialists, checking out insurance issues and the like. So many things to think about, but I am really glad I asked.</p>

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<p>Good luck to you. Our first student has no health issues, but our 14 year old has a bunch. She jokes that the doctor's office is her second home. Health issues will be a consideration when she is picking colleges.
Make sure that your daughter signs an authorization for you to have access to her medical information. She does need to manage her health, but if she is sick, she will need you to help her out and then is not the time to be fighting with with the medical system that can not give you information with out her permission.</p>

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<p>LP75,
While I cannot answer your question, I just wanted to wish your daughter and you family good luck. I truly respect the courage and drive of your daughter. My dad suffered from Crohn's for many years and he never let his illness get in the way of anything he wanted to accomplish. It is wonderful that your daughter feel the same way.</p>

<p>Good Luck,
Amy</p>

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<p>LP
You have gotten a lot of excellent suggestions here, and I am not sure I can offer much more. Is your d a junior or senior? Are you in the middle of looking at colleges or deciding from amongst acceptances? Also, there was a thread about this, also with a student with Crohn's, a few months back. You might want to do a search and read that thread, as in that person's case, the student had to come home mid-semester to be rehospitalized, if I remember correctly.</p>

<p>My s. does not have chronic health issues, but he has had health issues, and had a bout of colitis (medication induced) just (literally) before he left for college. We did not know if he would have a relapse, or if this would develop into a chronic condition. The first thing I did was ask the docs currently treating him in the hospital here who they knew and could refer him to for follow-up in the city he was going to. I am also fortunate to know a few people (medical professionals) in the city where my s. is going to school, and I asked them for possible referrals as well.</p>

<p>The school my s. attends happens to be next to a large medical complex with many hospitals, though his school itself doesnt have a medical school. With an illness such as Crohns, I would think it wouldn't be a great idea so go to a small school in the middle of nowhere with only the school infirmary and the local docs in the college town for immediate care. Also, if the school has no airport nearby, that can be a factor to consider.</p>

<p>Whoever mentioned to check out your insurance coverage is also giving you wise advice. If you have a traditional PPO or indemnity insurance, you probably have better options than if you have a POS or HMO. If your insurance is provided by your or your spouses employer, you can usually change it in the fall for the next year, so if you have an HMO, you might want to explore a policy with more options. Be careful to check for any pre-existing exclusions, and be sure to get a letter called "proof of credible coverage" from your current insurance carrier, which shows that you have had no interruption in insurance coverage. This usually handles the possible pre-existing issue. GOOD LUCK!</p>