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My story - hoping for the best

Hi,

I'm pretty new to this forum, found it from a google search. I wasn't even looking for a forum because I never even would have imagined that something like this existed.

My experience with Crohn's began around Sept of 2008, just as my 4th (final) year of undergrad was starting. I thought that it was going to be a great year, I had a lot of extra-currics lined up and was even involved in the leadership in quite a few of them. I was also going to be working in a lab for research project. Everything seemed to be going in the right direction and I couldn't wait to graduate. For many months, I never really thought of the symptoms that I was experiencing as being symptoms. I'm pretty good at bearing with pain and so when I started experiencing the pain, I thought it was just from stress because that had happened before when I was in high school. There was also diarrhea often, but I never thought much of it. My friends noticed that I was losing weight, but I told myself it was nothing to worry about, just proably from stress and not sleeping enough. I was always really really exhausted and always really cold to the point that I would wear a jacket, hats and mitts in the house.

After exams, I finally went to see my gp because I finally weighed myself and realized that I had lost over 20lbs and so that definitely seemed like something was wrong. Thankfully, I was able to see a GI within a relatively short period of time and had all various testing done. I'm was actually in a course that was talking about pathophysiology of diseases and right when I was in the midst of all these tests, I was actually learning about some of them in class. I didn't know if I should be glad that I knew what was going on or if I should be sad that I had to experience it. Finally, after the scopes, I was told that I had Crohn's. It came as a HUGE shock and really sucked because I found out the week before my bday. I had only heard about it once prior to my diagnosis, when I was volunteering in emerg, and a teen came in because of a flare up. My family had never ever heard of it, and my mom was pretty much in confusion and just didn't know what to do. I know she did a lot of Internet research to try to find out about it and try to figure out how to help me.

For the first time I wasn't sure if I could complete my courses, I didn't know if I would graduate as planned. And then in a couple of my classes we even talked a bit about Crohn's and I didn't know whether to laugh or cry. I found that after learning about my diagnosis I was more emotional - small things would set me off and make me cry. I had a lot of difficulty staying awake in classes and at night to finish my assignments. The pain would make me want to just curl up and wait until it went away. I realized that I couldn't just run around all day like I used to. Just taking the bus would tire me out, especially if it was rush hour and there were no seats.

I did manage to complete my courses and graduate. I had to learn to delegate a lot of my roles and ask profs to extend deadlines. During the beginning of 4th year, I had applied for med school and even got an interview which happened when I was really feeling out of it, but I went. I didn't get accepted and I was really disappointed and then that summer I started re-evaluating things. A lot of people felt that I shouldn't pursue medicine because of my health condition, but I couldn't let go of the dream. After much thought, I decided to give it one more shot. Apply again, and if it wasn't meant to be, then I would continue on another path. So, after a long long long long process, I received the exciting letter. =) I made the decision to go for it, but I still have uncertainties. I'm in remission, but what if it gets worse? I'm trying not to let the uncertainties get to me and even writing this out on the Internet seems to make everything a lot more real...

I know it's a long post, sorry about that, if you got to the end, thanks for reading.
 

Entchen

Chief Dandelion Picker
Hi again, silverlining, and thanks for sharing your story. Many (most? all?) of us can relate to your uncertanties and I hope that we can be a good support to you as you start your program. Hope your first year is a positive one!
 

DustyKat

Super Moderator
Hi again silverlining :bigwave:

Thanks for posting your story here. Firstly, congratulations on achieving your dream! YAY!

There are many on here that know and understand what you have been through and the fears and uncertainties you are confronted with now. The questions you have now about your future are the exact same ones I have about my daughter, she is in her first year at university and is also in remission. She has reached a point where I think she takes each day as it comes and if the s*** hits the fan, so to speak, then she will deal with it then. Perhaps when you start back with your studies and you adjust to things you will relax a little and take things in your stride and as you did before have contingency plans in place if need be.

As I said before, you will find many kindred spirits here and you will be a welcome addition to the forum. Are you taking any medication?

Take care, :)
Dusty
 
Thanks Kelly and DustyKat,

I don't know how often I'll be able to visit the forum once school starts up, but it's really nice to know that there is a whole community of people who have experienced similar things as me. I don't know of anybody who has Crohn's and sometimes it's hard for my friends/family to really undrstand.

I've been on quite a few meds, most recently was imuran, budesonide and methotrexate, but just a few days ago, my GI told me that I can stop taking imuran.
 

Dallies

Dragonfly
Hi Silverlining, it's lovely to have you here love. Come visit the forum when you can. It's a great place to share experiences and have support. You've found a great place with so many wonderful people. I'm glad you've found us. xxxxxxxxxx
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi SL, welcome!!! I need hope for EJ's future so please don't let crohn's derail your dreams!! Obviously, I know nothing of the pain and exhaustion, but my greatest hope for you and all young crohnies is that you are able to live your life despite the crohns. There is so much hope now in cutting edge medical therapies. Please see MrZiggy's Stem Cell Journey on here!! Stick around and keep us posted on your progress:).

Here's the link to Zig's journey!! If you need hope...it's here!!

http://www.crohnsforum.com/showthread.php?p=212898#post212898
 
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Astra

Moderator
Hi silverlining
and welcome

Congratulations! such a huge acheivement!
having Crohn's won't stop you from following your dream, and in time, with experience, you will be able to control/manage it.
Just wondering, if you're off the imuran, what other maintenance med will you be taking? my maintenance med is Pentasa, I'm not on anything else, Pentasa is a prophylactic to ward off future flares and helps to maintain.
glad you found us, and if you have time, come and say hello, let us know how you're getting on!
lotsa luv
Joan xxx
 
Thanks for all your kind words of encouragement!
I know it's been a while since I last wrote. In that time it's been a bit crazy with finishing up my summer job, packing and finally moving. Just finishing up my first week of classes. It's a bit overwhelming, but at the same time, since I don't really have many other activities besides school right now, I seem to have time to relax and not stress out just yet. I hope that as the weeks continue, I'll be able to handle the heavy workload and not stress too much =S

I did have a question about medications. I flew to my new location and so I was carrying a pretty heavy duffle bag as my carry on. As I was rushing to my plane (of course it had to be a stressful morning of leaving the house late and then worrying if I would miss my flight) the strap on my bag kept rubbing up and down my arm. This ended up leaving a rather large bruise. Another thing that happened more recently was I was with some friends and we were doing a three-legged type race so we had rope around our legs. I was even wearing actual pants, but as we were doing the race, I could feel the rope rubbing up and down and it hurt a LOT. Afterwards, I develped a rather large splotch of bruising, which is taking its time to go away. Has anbody every had such issues???? I mean I'm not even bumping into things, it's just things rubbing on my skin and causing these huge bruises! I have a friend who is a pharmacist and she told me it's because of my meds. I'm on entocort (budesonide) and methotrexate.

Astra101, my GI wanted to switch me off of the imuran and onto the methotrexate, something about imuran being bad for the liver and the side-effects of methotrexate are less likely therefore the lesser evil?
 

DustyKat

Super Moderator
Hey silverlining,

It's so good to hear that everything is going well for you, YAY! and I hope it continues to stay that way for a very long time.

Your friend is right, very easy bruising is a side effect of these meds. My daughter is on Imuran and I'm sure she only has to look at a piece of furniture as she walks past and she develops a bruise! :lol:

Dusty. :)
 

Astra

Moderator
Hi Silverlining

Yes this is true, I look like I've gone 10 rounds with Tyson!! I wake up with bruises!
It must just be a Crohnie thing, I'm not on Imuran, but not long off Entocort.
I'm not familiar with Metho, but I came off Imuran 5 years ago cos I was allergic to it.
stay well
xxxx
 
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