The so called "best years of my life"...and I have to live with Crohn's
Fri, January 16, 2009 12:31 AM
This is my first time posting on here, and who knows if I'll even finish and actually post it. I have been dealing with my symptoms for just over a year now. The doctors have narrowed my case down to either Crohn's or colitis, but are still unsure. More testing will hopefully give me some answers.
I haven't realized how much of an emotional toll this has taken on me until just recently. I am in my third year of college at Virginia Tech. I have built such a good life for myself there- great friends, community, spirit...I should be the happiest person alive.
But ever since my second semester sophomore year (when I first started having symptoms) I have not been myself. I have no motivation, energy, or ability to focus on anything. My grades have dropped, beyond what I ever expected they would. I am president of my fraternity and I feel like I'm letting everyone down because I can't give my position my full potential. I haven't had a job in so long, because I don't think I could make it through a full shift. I've always known I wanted to study abroad in college. I've been out of the country a few times before, and I really found a love for traveling. Never had I imagined that my health would be the thing holding me back.
I open up to my friends as much as I can, but I hate that people feel sorry for me when I do tell them what's going on. Sometimes I'll start talking about my disease, but then I'll suddenly stop. As much as I want to completely open up to everyone, at the same time I get the feeling that they don't want to or need to hear about it, I can deal with it on my own. Plus it's difficult to make people understand how much I'm really struggling with it, and how much of impact it's had on my life.
I guess that's why I chose to come to this website. Writing in here is probably the best way to open up, and at least everyone here understands! Wow, I can't believe how long this got. Thanks for reading if you made it all the way through :]
-kt
Joined Jan 15, 2009
Fri, February 06, 2009 8:21 PM
Reply posted for kaathrynann.
kt,
I'm also a college student, but I was diagnosed about midway through high school. It's tough when you have soo many things to worry about, like getting to class and assignment deadlines and going here and there, and IBD, for sure, doesnt help. I think common anxieties are the main factors that prevent a lot of people from living healthy lives. I think its especially important that you do open up to others, but I know how annoying it might sound. Also, if you're not doing too well in your classes, check up with your schools disability services, and they could help you out with excuse letters to your professors, and could give you special services like access to computer labs and testing rooms, and even tutors. It's always important to stay in touch with a GI doctor in the area just in case something happens. And most importantly, like you say, these 4ish years are the best years of your life (or come close), so prove it to yourself! Go out, socialize, break rules. It's important to not let IBD run your life. I hope I was helpful in any way. Good luck!
Joined Feb 6, 2009
Tue, February 03, 2009 10:47 PM
Reply posted for kaathrynann.
Hi KT,
I was also diagnosed while in college (symptomatic finals week fall semester sophomore year, oof!). Anyway, I just started grad school this past fall (I am 22) and have finally (mostly) gotten everything under control. It is all a matter of finding a doctor you can work with while finding the the best balance of treatment, which is no easy feat, especially while in college. While stress/attitude management are key, bad days are inevitable. A lot of what matters when you are getting through this is what you do with those bad days. Of course these are easy things to say, and really difficult things to do! Right now I am taking Humira and Imuran, which is working well. The Humira is great since I can administer it myself without having it interrupt much of my life. I would recommend it if your doctors think it would work well for you.
It is funny you should mention VT, thats my hometown! I was actually diagnosed originally by the doctors in the area. So I am very familiar with bburg and VT; if you ever need some advice about how to cope with Crohns and college (and the bburg area doctors), feel free to shoot me an email and I would be more than happy to chat.
vortmax10@gmail.com
Hang in there!
-jacob
Joined Nov 10, 2008
Tue, January 20, 2009 1:00 AM
Reply posted for kaathrynann.
It's tough to be diagnosed at any age!
I was diagnosed when I was 17 (my senior year of high school). I was very active (basketball, track, varsity club, musicals, choir) I would just come home and pass out. It wasnt too too bad back then. In college I was pretty okay, up until the end of my senior year (when I was 21) it was a lil rough...I had some gum surgery done and after that I had a flare up that lasted like a year (odd catalyst I know). I think though the stress of senior year (even though I'm not a stressful person) finally caught up to me.
It took awhile to get over that flare-up, I still have some issues occasionally.
It's tough for friends to understand (I think especially people that are newly diagnosed). People that are the closest to you will eventually get it cause they will see you on your good days and bad days, and they won't be the ones that look at you with pity. My boyfriend understands my illness inside and out. We've been together 2 1/2 years (so he was with me through my flare and sees how bad it can get). But I am so happy I have someone that understands my illness and can help me on my bad days.
I now work as a nurse and I'm gearing up to go to grad school. My emotional state is holding out so far, lets just hope my intestines do!!!!
I've found some of the best ways to cope with the stress is to post here. There are people here that can help you through your illness. Let me know if you need anything!!
Good Luck!!!
Joined Mar 7, 2008
Sun, January 18, 2009 4:16 PM
Reply posted for kaathrynann.
KT,
I can relate and I know it is very difficult to be diagnosed at your age. I was diagnosed a couple years earlier than you, the Fall of my senior year of high school. Your Senior Year is supposed to be a lot of fun and some of the best memories of high school. But for me, I started having symptoms in August before school started. It was at least 3-4 months before doctors knew what was wrong with me. I had 3 surgeries and missed a lot of school.
It was very difficult to explain to people what I was going through. Crohn's was new to most people I told about it. I really became introverted and missed out on a lot of things because of Crohn's. It was a pretty depressing Senior year.
For college, I still had a lot of symptoms and it was not always easy when I had to cancel things at the last minute because of my Crohn's. I again, felt like I missed out on a lot of social events.
My advice would just be to not be ashamed of your disease. It is not your fault and being honest about it with my closest friends was always helpful for me. I know it seems like no one understands, but it is important to be honest with your friends and family. If you are not feeling well, don't feel bad because you cannot make a social event or gathering.
You can still do a lot of things in college with Crohn's. I know you said you want to go to Europe. I was also able to go to Europe for a month program for school. In addition, I went to Europe for another month right after I graduated as a celebration of finishing school. You will learn to live with the disease and know what your limits are.
I am know out of college and I travel regularly for business--up to 2-3 weeks a month for work. I have been able to make it work, even though sometimes it is not easy.
It is important to have a good sense of humor and be positive about your illness. You can really still do most anything you want. If you need more advice or guidance, I would certainly hope you let us know.
paulbosoxJoined Jan 18, 2009
Sat, January 17, 2009 10:26 PM
Reply posted for kaathrynann.
i was diagnosed with crohn's my sophomore year of college, but i'd been sick since my freshman year. it sucked to be stuck at school sick, and sometimes my mom would have to come up and bring me to the local e.r. or whatever.
the main things you should do is tell your teachers about it, in as little or much detail as needed. usually i told mine that i had a digestive disorder and i'd sit by the door in case i had to go to the bathroom. i made arrangements to get my work online if i missed a class (or was in the hospital), and 99% of my teachers were cool with it. depending on the severity of your disease, you might want to let the college know through their disabilites department if you need any accomadations.
i also made sure i knew where every bathroom on campus, or wherever i happened to be, was. that was helpful just in case, and it also makes you feel better mentally.
i told my close friends who helped me out a lot. i kept it simple at first, and then gave more info as needed, if needed. of course, they didn't understand really right away, but it's nice to have people there if you need them. plus it's better to have it out in the open because then it's not added stress.
i'm 23 and i graduated college with my associate's degree (i plan to go back for training in medical transcription so i can work from home), and i got married 2 years ago. my husband is awesome, and he gives me my humira shot every sunday in my stomach because i was too weirded out to do it myself. i make sure i carry a card in my wallet by my drvier's license that says what meds i'm on, just in case.
really, it sounds like you are driven, and you can do whatever you want to if you set your mind to it. somedays it's gonna feel overwhelming, but it will pass and you can do it :)
Joined Sep 25, 2008
Sat, January 17, 2009 1:00 AM
Reply posted for kaathrynann.
I am sorry you are battling this too. I think for me that has been one of the hardest things is when I start to think of all the things I might not be able to do. I try not to think about it (yeah right) and try to focus and enjoy what I can do. Suddenly small things are such victories. Telling friends is hard. And finally I had to learn to stop being embarrasssed- I mean I don't give them the finite details and it depends on the friend too. I am surprised how many people are understanding and willing to help me get out - scout for restrooms and think of places to go that I would be comfortable. You might check out the travel forum here- wow alot of people just go out there and do it. They are so brave- I hope I can be like that too. Hang in there- I mean you are doing an impressive job doing everything you ARE doing!
Joined Dec 22, 2008
Fri, January 16, 2009 6:25 PM
Reply posted for kaathrynann.
I just wanted to say, don't give up. I know it's hard, especially when first diagnosed, but your diagnosis should define you. It is just part of who you are even if it may be influential in your life.
Again, telling friends is hard... because they may not fully understand, they may not want to know and they may feel sorry for you. The best advise I have for that is, tell them the diluted truth... 'I have and immune disease that causes digestive problems so I don't always feel good, may use the restroom more often, blah, blah, blah...' however you want to word it, unless they want to know more, for a lot of people it's kind of a taboo subject. It may seem hard, with you being newly diagnosed, but showing that you are okay with it, helps to reduce the look of pity. Some people, will feel sorry for you automatically and won't even notice they are treating you even slightly differently... most of the time if you tell them what they are doing, they stop.
It's hard, but I suppose it makes us all stronger. One day, you may look back and think... I don't know who I'd be if I never had that challenge. I am 23, and being in grad school, there have been multiple times where I am so grateful that I learned to manage my stress years ago... I may sound super optimistic, but I've been dealing with it for a while, I've had my time (and more) to come to terms with it. I hope that you get there too, and that you find some support along the way.
jessptJoined Jan 14, 2009