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Chances of it happening again? Is this normal?

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Ulcerative Colitis
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Posted 9/10/2013 4:00 PM (GMT 0)
Hey sorry I can't post much information right now as I'm in a rush but I just thought about posting on here.
Anyways long story short, I was diagnosed with colitis back in October 2012 and I was forced to drop out of school (post secondary).

Anyways, I suffered for about a month and then I went into a short remission (about a few weeks).
The remission was over I think, when I ate some chinese food which we believed had MSG in it.

So...I got sick again for another few weeks but it wasn't as worse as before (but still really bad).
I got better eventually and...the last time I experienced a symptom was November 2012!!

Which means I've been in remission for almost an entire year.

The thing is though, I don't know if I should be happy or not because...I'm starting school again and I've payed a TON TON of money into my term (and I've all ready done like half of this stuff so I have to do it all over again since I dropped out), and I'm worried I'm going to get sick again.

When I had symptoms, my specialist put me on steroids (I forgot what they were called it's been so long....something-zone...? crednizone or something..). And now I take 4 mezavant pills every day at dinner time.

What do I do if this happens again? What are the chances of it happening again?
And is it normal that I've been in remission for this long? Am I just one of the lucky ones?
I've heard really horrible stories where people have been diagnosed with colitis and have not once gone into a remission, I'm afraid as I get older I may eventually go back into symptoms and not come out of it for a very very long time..

Something is just off here.
Posted 9/10/2013 4:10 PM (GMT 0)
You need to chiiiiiiiiill.

First of all, colitis commonly hits people initially between the ages of 15 and 25. Obviously, there are folks on here who got diagnosed later (and often parents of children diagnosed earlier). I got sick at 20, at the beginning of my junior year of college, and nearly had to go on medical leave.

If you are in college, your school should have policies for dealing with medical leave. If you get sick again, talk to your dean, to health services, whatever--they should have ways of handling the situation so that you don't have to drop out.

You're on maintenance medication: many of us had recurring flares BECAUSE we didn't stay on maintenance meds. I went off meds after flares TWICE because I'm that much of an idiot. The steroid you were on was prednisone, and it's not a maintenance med--it's a way to tamp down bad inflammation quickly to get other meds a chance to work.

So you really just need to relax. Keep taking your medication. See your GI regularly. Enjoy being back in school.
Posted 9/10/2013 4:12 PM (GMT 0)
Hi...no, nothing is off. It's life with UC.

What meds were you on during your remission?

It's not the Chinese food. It's not luck.

Lesson one...always know the meds you're on and what you've been on.

Lesson two...you need to also be on rectal meds.

Your life will be very busy with school and your commitment. It's not that you cannot do it...you just have to get on a med regimen that'll help get your flare under control. After it's under control, then you'll hopefully remain on a maintenance med regimen. It does take commitment, because once you're doing well...it's easy to believe all will be fine.

Hang tough...you'll get it figured out, for experience is a very good teacher as long as you learn from it.

q
Posted 9/10/2013 4:21 PM (GMT 0)
The only stats I've seen is this: If you are in remission now than you have a 50% chance of flaring up again within 2 years. Everyone is different, some last in remission for much longer, some much shorter. It mostly depends on how well your uc is controlled and how aggressive your disease is. It seems the only certainty with this disease is everyone is different and responds differently. So I'd recommend sticking to your meds and waiting it out and seeing if there is any pattern to how long you are in remission.
Posted 9/10/2013 4:23 PM (GMT 0)
Chances are, you'll be fine if you keep up a medication regimen that works. The key is open communication with your doctor, keeping an eye on your symptoms, and knowing when you need to slow down.

For some encouragement: I started getting symptoms as an undergraduate (I was 19, diagnosed at 21) and had to drop most of my classes at one point. And I've had far more flares than the two you're listing (at least three before diagnosis, then several in the year after being diagnosed). However, once my doctor was able to find the right set of medications to keep me in remission, I've mostly stayed there and when I have been sick my symptoms have been very mild. That was nearly 5 years ago. I'm currently starting my fourth year of a PhD program in microbiology and immunology.
Posted 9/11/2013 7:07 AM (GMT 0)
Thanks for the replies everyone.

What exactly would happen though if I get sick again?
Would I have to go back on the prednisone again?
I really wish I wouldn't though because I absolutely hate taking things such as steroids
that may actually lower my life expectancy.
Posted 9/11/2013 8:56 AM (GMT 0)
UC flare ups are pure misery. Although they do vary in severity. Sometimes people have micro-flare ups that can be treated yourself they are usually little blips, a series of bad days or whatever. I've had flareups where I poop 12 to 20 times a day. Some (not me yet) have been admitted to the hospital during flares due to dehydration, pain, or other issues. Flares can be mild and can be pretty aggressive. No two flares are the same.

Yeah some steroid is usually the first thing tried and administered: orally (prednisone or uceris), as a rectal med (endocort, proctofoam), or intravenously given at the hospital (high dose steroid if you are not responding to oral/rectal meds). Sometimes Remicade (given through an IV) is given to fight a uc flareup as it generally acts quickly.
Posted 9/11/2013 3:43 PM (GMT 0)
There's not much we can guess about what would happen if you got sick again. If you don't want to take steroids, you don't have to, or you could even take topical steroids (enemas) to reduce the systemic effects. I refused to take oral steroids for my UC, and my doctor respected that.

Again, you need to relax. You're better now, you know what to look out for in the future, and you aren't going to know what treatment you'd be on unless you did get sick again. Focus on the school year and enjoying your health!
Posted 9/11/2013 4:28 PM (GMT 0)
Don't ever quit taking the 4 mezavant pills every day, ever. Stress can cause symptoms to return so try your best to destress yourself. If you have another flare hopefully the prednisone will put you back into remission. It's not such a bad drug if you only take it short term. It's when you take it long term or have to continually take it short term several times per year that it can really mess with your health.
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