Crohn's in College

gumby44: I cannot take biologics because I am already at high risk of lymphoma due to my low white blood cell count. I would take them if I could because they sound like they could really help me, but it's just not a possibility at this point in my life. I see what you mean about leaving for a semester. I have been considering it but right now I just got a new doctor up here that I am seeing soon and i'm not missing that much class. So far I have missed about a class a week. THe only problem lis that once I get to 3 in each of my 5 classes, then they start taking points off of my grade. if I get to 6 then i'm automatically locked out of the class. Since I was born with Crohn's, I have never let it get in my way school wise. I am a very hard working student and was even in the top 5th of my class. I have never needed teachers cooperation before, I am just very good at playing catch up. Right now I am juggling this whole ordeal and getting better. It's not easy but this is definitely not the worse that I have ever been. I am very limited with treatments due to other health problems that I have. No, my parents are not supportive of me at all. Never have been. My parents think that I am faking it when I am not able to exit the bathroom or urgently have to run to the bathroom. I have basically been working my entire life to show them that my illness doesn't cause me to be different from anyone else. That's why I have never taken accommodations before. I am getting in touch with a lawyer today because I have a meeting with someone even higher than the office of disabilities. I want to at least be able to say that I have consulted a lawyer. Maybe it'll scare them a bit. The one thing that no one seems to understand is that I have NEVER missed class for just being in pain. As long as i'm not stuck on the toilet, I am in class. Sometimes I even go to class if I know that I can make it that far w/o a bathroom anywhere near me. The only problem with doing that is that I have to exit the class 4-6 times. This means that I am out of the class more than I am in class even when I'm there.

I see what you mean, and I all focus on my health more. It's just that since I have never let anything about my illness get me down till now, it is a complete and total shock to me. Thank you for your kind words :)

-Miss Dana

Thank you very much for your kind words. I'm working on it lol. I have a meeting at 10. Wish me luck!

-Miss Dana

*there * has

Sorry I really didn't look over that one haha

You're most welcome Miss Dana, glad to be able to help out anyway I can.
You asked to hear some stories about us and seeing how you are, reminds me of, well me, lol. Very stubborn (meant in best possible terms), very determined and won't let the disease get the better of you. I have always been that way too, I often wonder if I would be the person I am today without Crohn's and I highly doubt it. You said you were born with it, I showed symptoms at the age of 7 and I went through a stage of not being believed too. Sent to see a Psychiatrist and he determined me to be "normal," whatever that means.
I got beat downs for crapping my pants, had a step father all over me like white on rice. I grew up under a drill instructor, a disciplinarian who never let up on me about anything, under no circumstance.
Out of anger and the pain I had been enduring, I started martial arts at 7 to be a stronger person, physically, mentally and emotionally. Even at 7 I knew I needed an outlet.
By the age of 13, still very sick, all the Crohn's symptoms, hospital stays of weeks at a time and still no diagnose. One day of being verly ill, dehydrated, vomiting, fever, I was brought to an ER and it was believed that my appendix was about to burst. Off to surgery I went and having that surgery is how I finally received a diagnoses, so yes, I had my appendix taken out but hey, at least I got a diagnosis.
Still needed more of an outlet, starting working out at 15 and it was my addiction. My best friend and I trained for 3 years consecutive to go into the military under the buddy system. 3 years, 6 days a week at 2 hours to 2 hours a day. I knew I was going special forces, so we trained so hard (this is funny yet it's not, lol) that my friend got an anal fissure (a tear in his..yeah, there). While in high school, I also attended a vocational school, took a bus early in the AM and returned back to the high school around 11:45. He would make bets with people in weight lifting, me versus people from the football team, how we'd make some money.

I was also very much about school and milking it for what it was worth, attended college part time, at night after work. In my mid 20s by now and also worked since the age of 15.
You said you worked your whole life, didn't ask for any specific accommodations. Same with me, I'm not sure if I've always wanted to prove to myself what I was still capable of doing or the doctors. My mom eventually understood, carried around extra clothes for me in her car but never my step father.

After 22 years of having the disease, scar tissue built up and I had no choice but to get surgery. I had a lower bowel resection at the age of 29, 17 inches of my small intestine had been removed. Best thing to have ever happened to me, sure I toughened out so many years of pain, the Crohn's symptoms but I felt like a new person after the surgery. I was never still perfectly normal, I don't know what that is but had many years of being pain free. Crohn's eventually returned right where the intestines were reconnected.

Another thing, when you mentioned pain, yeah, a doctor asks a Crohn's patient about pain compared to someone else who's perfectly healthy, we're like pssh, that's not pain. I know my, I won't say our, not everyone is the same but my pain threshold is way up there. It takes a helluva lot to put me down and out for the count.

I also have a similar campaign going on against a work related issue and a law that I am drawing attention to. You're doing it to help others in the college and I'm attempting to help others that may be ill in the work environment.
I'm going to look up some information that you have posted and will post what I can reveal about the situation at SUNY Oswego. I've been at their campus in Long Island, martial arts tournament.

"4. After consulting with the Department Chair, an instructor may recommend to the appropriate Dean that the student be dropped from class because of poor achievement due to excessive absence. Excessive absence in any course will be construed to be absence, regardless of cause, which appreciably lowers the accomplishment of a student in that course. If the Dean agrees that such action is justified, the student will be notified by the Dean that he or she has been dropped. If such action has been avoidable on the student's part a mark of E will be recorded on his or her record. If, however, the absence was a result of extenuating circumstances beyond the student's control, the student will be dropped without penalty. The action of the Dean will be taken only after the end of the "drop" period.

5. The attendance policy is focused on the twin goals of effective instruction and scholarly achievement; hence, no account has been taken in the preceding statements concerning the cause for the absence. It is apparent, however, that certain instances of absence from class are unavoidable. In the case of such unavoidable absence, the student should inform the instructor of the situation which occasioned the absence. Faculty members have the responsibility, insofar as feasible, to provide students with the opportunity to make up any examination, study, or work requirement missed for duly verified medical reasons, college- sponsored activities, religious observations, or other unavoidable absence. Please note Section 224-a of the New York State Education Law, and SUNY policy, require that a student who is unable to attend class on a particular day or days because of his or her religious beliefs be excused from such class upon request. In addition, faculty have the responsibility to make available to each student absent for this reason an equivalent opportunity to make up any examination, study, or work requirements that he or she may have missed as a result of this absence.

7. Because mass absences before and after vacation periods reduce the number of effective class meetings in a course and thus penalize the students who are present as well as those who are absent, attendance at these times is particularly important. Since these policies assume that it is the responsibility of the student to attend classes throughout the semester, no mention of this problem is included in the statement of policy supplied to the students. It is the responsibility of faculty members to maintain such a high level of instruction that voluntary and avoidable absence at these times will carry its own penalty. The scheduling of instructional activities that will strongly encourage attendance just before and just after vacation periods will be very helpful. In case of students' avoidable absences, the instructor is under no obligation to provide opportunities for making up the work missed.

8. It is the student's responsibility to regularly attend classes and complete assignments as scheduled. When a student is unable to attend a class due to circumstances beyond his or her control, he or she is expected to communicate directly with instructors concerning class absence and missed assignments. In those rare instances when medical documentation is required (hospitalization, mononucleosis, etc.), the student should request a written statement from his or her off-campus attending physician or authorize the college health service to verify the nature and extent of illness. The health service should not be expected to be involved in issuing statements or excuses on a routine basis."

From the same link.

I'll let the experts continue helping you, I don't have much to add that hasn't already been mentioned. I just wanted to say I am truly sorry you have had this illness for so long and so awfully. I will say a prayer for you.

Datawraith: Your story is very touching. I'm so sorry about your step father. What a piece of crap! My parents were never abusive, they just really didn't get it. wow, I have never had surgery for my illness, i'm so glad It worked for you. I have asked my doctor about it, but all he keeps saying is, "You're too young." I think that is total bull because then I wouldn't be in pain and could actually enjoy being my age. Wow! I'm impressed, I could never exercise due to random fainting. Do you think that it helps keep your symptoms at bay or help you feel any better? let me know! I'm so impressed that you even thought about going into the military with this illness. You truly are an inspiration :) I hope that works out with your job! What do you do? How do you cope with Crohn's in the work force? I would love to know! Once again thank you for all your help!

Everyone: This question is for everyone: Are any of you of Eastern European Decent? How many people in your family have Crohn's or any other digestive issues? Please let me know I am extremely curious!

I am Jewish of Eastern European descent, but I'm the only one of my extended family that has Crohn's. I do however, have several relatives with various other auto-immune disorders. Keep fighting....I'm proud of you!!

I ask about being Eastern European because I have found a correlation between people of Eastern European decent and Crohn's. Almost every person that I have met with Crohn's was at least a little bit eastern European. A lot of my jewish friends have UP, UC, or Crohn's. I am 1/4 Croatian and a 1/4 Serbian. The rest of me is Irish and Scottish. Just an observation. Have any of you heard of this?

Gumby44: Thank you :) Having you guys is what keeps me fighting.

Datawraith: I can't even thank you enough for doing research for me. I have had a lot going on being a 1st semester freshman. Today I had to do 7 hours of community service on top of classes lol. BTW I got a gym membership at my college today (the gym is attached to my dorm). I just got done with an hour long work out and I already feel a little better. This is the 1st time in weeks that I have felt some life in me lol. I used to be a runner but then stopped due to fainting. I went with that guy I met. He said he's gonna join me everyday. Hopefully it will continue helping. That's so funny that your girlfriend didn't like you going to the gym. My step mom was like that with my dad. Oh yeah, I forgot to mention I have a step mom. It's constantly my father and her against my mother. My mom decided to try to step up and talk to my doctor, and my dad and her ended up having a screaming match. That sure didn't help. Now they are both hands off about my health because i decided to call the doctors and put all contact info under myself. I use my dads healthcare, but the only one talking to the doctors is me. I just emancipated myself in march because they fought too much about me and my well being. Technically i'm not supposed to use his health care anymore, but I have to wait till i'm well to get a job. Before I left home I was a chef at a Cafe/catering service. I had done that for 3 years so I have a ton saved away. I will talk to my doctor about testing my iron and vitamin D levels. I have never had anyone do that before, besides the time when I tried to donate blood and that's when I found out that I was anemic lol. Thanks again, you are truly my savior right now :)

-Miss Dana

hey Datawraith,
sorry I didn't respond yesterday. I had crazy amounts of hw. I have class in 5 and get off at 4:00. I will ready it then! Thank you so much!
-Miss Dana

Miss Dana said...
Datawraith: Your story is very touching. I'm so sorry about your step father. What a piece of crap! My parents were never abusive, they just really didn't get it. wow, I have never had surgery for my illness, i'm so glad It worked for you. I have asked my doctor about it, but all he keeps saying is, "You're too young." I think that is total bull because then I wouldn't be in pain and could actually enjoy being my age. Wow! I'm impressed, I could never exercise due to random fainting. Do you think that it helps keep your symptoms at bay or help you feel any better? let me know! I'm so impressed that you even thought about going into the military with this illness. You truly are an inspiration :) I hope that works out with your job! What do you do? How do you cope with Crohn's in the work force? I would love to know! Once again thank you for all your help!

Yeah my step father although rough and I agree with your sentiments, lol, it kept me out of trouble too. That was the beneficial aspect. The reason GI's don't want to perform surgery is due to the risk of short bowel syndrome. Let's say you have surgery and the portion of the intestine that has inflammation, scar tissue and Crohn's is removed, Crohn's comes back a year later. Then you do the rinse and repeat process, you will eventually suffer from short bowel syndrome. That's why surgery is prolonged. I had surgery due to necessity, scar tissue built up, it was from having Crohn's and flare ups for so long, surgery was the only option left.
Exercise helps me out a lot, gives me energy, a sense of well being and is a great stress reliever. It definitely is beneficial and does make me feel better in my over all health. I take supplements too, fish oil, flaxseed oil, multivitamin and protein drinks.

I'm in a similar situation that you're in, for you it's college and for me it's in the work environment. The way someone who is disabled is treated in the working world is horrible. It's a long story but I explained a lot of what happened in this thread. It's a lot easier to give you the thread than retype it all.

www.healingwell.com/community/default.aspx?f=17&m=2486652

Miss Dana said...

Datawraith: I can't even thank you enough for doing research for me. I have had a lot going on being a 1st semester freshman. Today I had to do 7 hours of community service on top of classes lol. BTW I got a gym membership at my college today (the gym is attached to my dorm). I just got done with an hour long work out and I already feel a little better. This is the 1st time in weeks that I have felt some life in me lol. I used to be a runner but then stopped due to fainting. I went with that guy I met. He said he's gonna join me everyday. Hopefully it will continue helping. That's so funny that your girlfriend didn't like you going to the gym. My step mom was like that with my dad. Oh yeah, I forgot to mention I have a step mom. It's constantly my father and her against my mother. My mom decided to try to step up and talk to my doctor, and my dad and her ended up having a screaming match. That sure didn't help. Now they are both hands off about my health because i decided to call the doctors and put all contact info under myself. I use my dads healthcare, but the only one talking to the doctors is me. I just emancipated myself in march because they fought too much about me and my well being. Technically i'm not supposed to use his health care anymore, but I have to wait till i'm well to get a job. Before I left home I was a chef at a Cafe/catering service. I had done that for 3 years so I have a ton saved away. I will talk to my doctor about testing my iron and vitamin D levels. I have never had anyone do that before, besides the time when I tried to donate blood and that's when I found out that I was anemic lol. Thanks again, you are truly my savior right now :)
-Miss Dana

Glad to help out, why I am here. Being active seems to be a very good thing for you and that's great to hear. Also glad to see that you've already began to work out and feel the benefits from it, haha. Sorry to hear about the situation with your dad and step mom, it's unfortunate but as of now with you're being away at college, it's best that you're taking matters into your own hands. Plus, you have all of us here to help you out.
If you're having any current deficiencies, they're going to be addressed by the GI and that will be a great thing along with your cooking abilities, lol. A Chef no less, I am impressed and if you decide a specific diet, who better to cook for you than yourself?

Miss Dana said...
hey Datawraith,
sorry I didn't respond yesterday. I had crazy amounts of hw. I have class in 5 and get off at 4:00. I will ready it then! Thank you so much!
-Miss Dana

No worries at Miss Dana, it's a lot of information to digest but should prove to be very helpful. We'll keep fighting the good fight!

I can attest that the ADA definitely has you covered. I have a lot of experience with it and I know that there are a lot of places (schools and otherwise) that decide they are above it. I've found that even if you take the applicable section to them, they still think they have more power than the ADA.

In most cases they won't take you seriously unless you get a lawyer involved. There are a lot of ADA lawyers (especially in NY) many of whom will give you free consultation and advice. A lot of schools will put barriers up, until they see a letter from a law office threatening to sue if they don't start making the appropriate accommodations. A Federal lawsuit generally makes people much more understanding. I'm sorry I don't have any contacts in NY as far as good lawyers go, but a lot of them (even though they are lawyers) are trying to help. I'll try to get some names/firms for you.

I know what it's like to have these problems in college (going into my senior year). I am yet to receive a diagnosis of my own (thanks to a GI Dr. who told me I was perfectly healthy) but after 2 years of these problems I can tell you that you're definitely not alone. Keep up the good fight and I'll see what I can do to get you some names of good lawyers.