21 year old, just diagnosed.

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Pontius

Joined
Oct 30, 2010
Messages
19
Thought I would drop in and share my brief story. I'm a 21 year old who was just diagnosed with Crohn's in August. At first my doc and I thought it was IBS, but there was some swelling in my right lower quadrant (and my appendix was removed three years ago) so we did a CT to see what it could be. Results came back showing Crohn's, did a colonoscopy to confirm (holy crap that amnesia drug is a trip) and there were definitely ulcers, so I started a combo of Pentasa and prednisone.

Right now I'm having trouble getting off of the prednisone; I'll drop down my dose but have a flare up. I'm typing this from a very comfortable hospital bed because this last one was pretty bad-- so bad, in fact, that my doctor decided to try Remicade infusions (much appreciation to those mice). Hopefully the Remicade will let me get off of prednisone and keep me in remission.

Symptom-wise, I'm pretty mild. I only have some constant abdominal pain and cramps when I eat ice cream/spicy foods/greasy foods or get stressed out; I have no diarrhea, vomiting, nausea, or weight loss. I have no family history, but was on Accutane when I was younger, so we think it was because of that.

Anyhoo, that's my very brief story. I came across this forum trying to find information on Remicade and thought I would stick around!
 
Well I see you've already found the Remi. club so I'll just say welcome and good luck!!
 
Hi Pontius and :welcome:

Good to have you here and it's fab to hear your gonna stick around!

Sounds like you have a good relationship with your doc and you are both on top of things which is so nice to hear.

I hope the Remicade works well for you and you achieve many, many long years of remission. Good luck and welcome aboard!

All the best, :)
Dusty
 
Thanks Squadinho and Dustykat!

@Squadinho It's totally the worst. The ER doc and I thought it was prednisone withdrawal at first but then the exact same symptoms popped up when I dropped from 40mg to 30mg and was stressed out, so my GI doc told me to switch.

@Dustykat Yeah he's a really cool guy and I'm glad he's switching me to something more aggressive. I won't even mind the two to three hour infusions every other month if it gets rid of my symptoms!
 
Hi Pontius
and welcome

Really hope the Remi does the trick! Can't stay on Pred forever!
Glad you're gonna stick around too, lots of friends here for you
lotsa luv
Joan xxx
 
You might want to call your lawyer since you were on Accutane. I see a couple commercials on TV every week for lawsuits about Accutane causing Crohn's.

That's good that things are relatively under control. Hope the Remicade does well for you.
 
Just a quick hello and welcome to the Crohn's Forum!

Indeed I would check out the Accutane...I too have seen the announcements
on television regarding the link to Crohn's.

All the best~Nancy
 
Hi Astra101, effdee, and Nancy Lee!

@effdee and Nancy Lee Yeah I'm passively looking into it-- still kind of getting over the initial diagnosis. Since there's no family history of Crohn's and I was diagnosed four years or so after I stopped the treatment, there might be a chance it's due to that.
 
I was diagnosed at 21 too, of course it took almost dying for the doctors to figure it out.

But good for you for catching it before major problems could have occurred.
 
Pontius,
I was dx at 19. I am glad you all figured it out before too long. I think I am the only person in the world that liked being on Prednisone! But you are right, long term effects are a #&%@*.

Enjoy the down time with the infusions, just look at it as time to veg! Hope it works well for you.

Michele
 
Welcome!

MADiMarc said:
Pontius,
I was dx at 19. I am glad you all figured it out before too long. I think I am the only person in the world that liked being on Prednisone! But you are right, long term effects are a #&%@*.

Enjoy the down time with the infusions, just look at it as time to veg! Hope it works well for you.

Michele
Click to expand...

I like being on the prenisone..only because it calms my flares:thumleft:, but--welcome--sorry to welcome you...but really glad you found us...
S
 
Oh my! Im the same way and yesterday I came down 5 more mg on my pred and I am having horrible side effects. The shakes and twitching are returning and the trips to the restroom are def back! I wonder if I should just not worry and try to hang in there or call my doc... hmm..

Either way welcome to the site! You will learn alot here and make good friends:)
 
Hey Pontius,
I am also 21, and was just diagnosed this year. I have been through every medication, and finally (after being in the hospital for almost 2 weeks) got put on Remicade. It is a great drug but it takes a lot of altering doses to keep you without symptoms.
I pretty much have the same symptoms as you; no weight loss, vomiting or nausea, but it still sucks none-the-less!
I would definately look into the Accutane lawsuit that has been going on, since it has been proven to cause Crohns, IBS and Colitis. At least just to get information on it.
Hope you start to feel better soon <3
 
Hi hunniebunn88,

Your signature says you're currently only on Remicade and you were once on Pentasa-- how is that working for you? Do you have any flare ups, is it really touch-and-go?

Right now I'm on Pentasa, prednisone, and Remicade at the same time, but I'm wondering if I'll be able to just do Remicade once the loading doses are done and it starts having an effect. These Pentasa pills are huge!
 
I took pentasa when there was a first thought of Crohns in 2007, but I really never noticed any difference (I still had pain, urgency).
Remicade is so-so for me right now, but my GI thinks it is because my doses need to be altered so now I am going every 6 weeks with an increased dose.
I don't even want to talk about prednisone, all it did was make me have a moonface!
 
Ah, I see. I'm not sure if Pentasa is doing anything for me either, but I assume prednisone is because I don't have any issues until I step down the dose. But yeah, the acne with prednisone is horrible! I can't wait until I taper off of it completely... plus that bitter taste.

Kind of funny the reason I have Crohn's is because of an acne medication and the treatment for Crohn's gives me acne!
 
I started acne medication when I was around 12, and I believe I was on accutane, but my pharmacy records don't go that far back...so i'll never know!
I had to go off my birth control, which was used for my acne, since I got a blood clot, so now I have to try to figure out a whole new solution for acne!
Yeah its a bit ironic, just consider us the lucky ones :p
 
Pontius said:
Ah, I see. I'm not sure if Pentasa is doing anything for me either, but I assume prednisone is because I don't have any issues until I step down the dose. But yeah, the acne with prednisone is horrible! I can't wait until I taper off of it completely... plus that bitter taste.

Kind of funny the reason I have Crohn's is because of an acne medication and the treatment for Crohn's gives me acne!
Click to expand...

Wow am I the only one that DIDN'T get acne from prednisone? Infact, being on prednisone has actually helped clear my face up. It's alot clearer now. The only thing it gives me is the "moon face".

Pontius said:
Hi hunniebunn88,

Your signature says you're currently only on Remicade and you were once on Pentasa-- how is that working for you? Do you have any flare ups, is it really touch-and-go?

Right now I'm on Pentasa, prednisone, and Remicade at the same time, but I'm wondering if I'll be able to just do Remicade once the loading doses are done and it starts having an effect. These Pentasa pills are huge!
Click to expand...

Before I started Remicade I asked if I would be able to get off my other medications as well. The answer I got was that because your body can produce antibodies to the Remicade, the (insert drug here - immuno suppressant) helps prevent that from happening. So it's recommended to be on both while on the Remicade. Fortunately, I will be able to taper off the Prednisone once I go for my second infusion on the 17th :panda:
 
Last edited:
Thanks, Jer's Girl!

@kslade I assume you'll be taking azathioprine in tandem with Remicade? Have you heard of any side-effects with azathioprine like with prednisone, or is it pretty safe? I figure my GI doc might put me on another immunosuppressant as well.
 
Pontius said:
Thanks, Jer's Girl!

@kslade I assume you'll be taking azathioprine in tandem with Remicade? Have you heard of any side-effects with azathioprine like with prednisone, or is it pretty safe? I figure my GI doc might put me on another immunosuppressant as well.
Click to expand...
.

Yes, right now I'm on Remicade, Prednisone and Azathioprine. I personally haven't had any side affects from Azathioprine, but I know others in here have. It really depends on your body. I tend to think that Prednisone has the worst side affects of anything myself. They tend to stick around where as the side affects that I had from the Remicade went away after a few days. What meds are you currently on?
 
Hi and welcome...I'm in the Remicade club too - been there for abotu 5 years.....used to be on 6MP but stopped that (officially) last year.....just the Remicade seems to be doing the trick.....

I've been on pred multiple times before the Remicade - did get the moon face, but never acne!.....no really bad side effects either that I remember - but I was also very active so being 'hyper' wouldn't have shown up lol.....
 
Hi, pasobuff! How has Remicade been working for you? Do you feel like crap right before a transfusion? What's your transfusion schedule?

kslade said:
.
Yes, right now I'm on Remicade, Prednisone and Azathioprine. I personally haven't had any side affects from Azathioprine, but I know others in here have. It really depends on your body. I tend to think that Prednisone has the worst side affects of anything myself. They tend to stick around where as the side affects that I had from the Remicade went away after a few days. What meds are you currently on?
Click to expand...

Ah that's good you haven't had any side effects. I'm on prednisone, Pentasa, and just starting Remicade. I definitely notice prednisone side effects, and I really don't mind them, but I don't feel like developing diabetes later down the line. :p
 
Pontius said:
Hi, pasobuff! How has Remicade been working for you? Do you feel like crap right before a transfusion? What's your transfusion schedule?



Ah that's good you haven't had any side effects. I'm on prednisone, Pentasa, and just starting Remicade. I definitely notice prednisone side effects, and I really don't mind them, but I don't feel like developing diabetes later down the line. :p
Click to expand...

Developing diabetes down the road? I haven't heard of this, please explain.
 
Welcome to our forum.
You should not be worried about Remicade... its a balance between controlling ones symptoms and possible side effects. I was on Remicade and had a good experience.
I was smiling when I read your post regarding "when I eat ice cream/spicy foods/greasy foods or get stressed out"... lol I think most of us here and even people with no IBD might get upset digestive system when eating lots of iceream...
I hope you find our forum helpful
 

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