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Just another kid with Crohn's

Hello everyone, just thought I'd introduce myself.

A little background--I'm a 20 yr old male, college student (UW in Seattle, WA) who was just diagnosed with Crohn's last month. I was first admitted to ER in Dec of last year for the standard--severe abdominal pain, horrible nausea/vomiting, diarrhea etc. etc.

I was released same day with a simple diagnosis of gastroenteritis (sp) and sent on my way, as the ER doc told me he had been seeing a lot of that lately and it was a simple 24 bug resembling food poisoning. So I was sent on my way with a few pain killers and nausea pills and seemed to get a little better for a while.

Fast forward a month and the same thing happened to a far worse degree and I was again admitted to the hospital. My ER doc concluded it wasn't appendicitis (as was initially suspected; the pain and swelling *think golf ball* was highly localized to my lower right abdomen) and further was suspect of the fact that just a month earlier I had been admitted for the exact same symptoms so a CT scan was ordered. Basically my small intestine was swollen to the size of a watermelon at the terminal ilem and the inner diameter was about the size of a pinhole, which was causing severe blockage and obviously the acute pain. I was latter shown the scan by my GI doc and he explained I was so inflamed that even the contrast I had consumed for the test did not make it past my ileum. Pretty brutal.

So I was referred to a specialist from that point. I was given a few weeks to take Cipro in hopes that it was a simple infection and to allow the inflammation to go down so I could be scoped. I was also subject to the multitude of blood and stool tests to attempt to find another reason for my inflammation. All came back negative.

I was finally scoped on Feb. 17 and that was when my doc was sure I had Crohn's. Sections of my colon look like the lunar surface with pus volcanoes and my ic valve is all out of wack.

The diagnosis was made more firm by the fact that I display odd symptoms I would have thought completely unrelated but are consistent with Crohn's like joint pain, eye swelling/problems, and most bothersome, horrible and long-lasting mouth sores.

So that's the story of being diagnosed. I met with my doc again (who I should say I like very much, which is such a relief) this Tuesday to plan how I will control the disease. I have been taking 40 mg of Prednisone a day since the 17th of Feb, and will be getting off that soon to start my TNF Antagonist as well a Azathioprine (sp). He is a proponent of dual treatment, so that is the plan for now. We spoke for a long time about all the options, risks, why he likes using both drugs, what I can expect etc. etc.

So that is where I am at now. Still taking the Prednisone, which I HATE. Haven't slept more than 10 hours in the last 72. Feel wired and exhausted at the same time, though I suppose it is better than the horrible pain, fatigue I was experiencing before. I will be off it soon and am looking forward to sleep and getting rid of my abnormal irritability.

That is my story. I hope to make some good contacts here, get advice from some sage souls, and life a happy and healthy life. If anyone actually read this whole thing I truly appreciate it. I'm sorry it was so long, I just thought it better to be thorough. Also, don't quote me on everything here (esp. treatment and whatnot; I think I got the gist of it but I'm pretty out of it right now and my memory has been failing me lately from pure exhaustion).

Thanks a lot for any help in the future guys. I truly appreciate it.

And in unrelated musing, just to add a personal touch, I have an unnatural love for cars (BMWs in particular, one of my favorite things to do is wrench on my 1995 M3), value my drum set (which I have been playing for 11+ years) more than any possession I own, and started to and continue to skateboard (though more and more infrequently) since I was 4 years old. I also am obsessed with skydiving (well, as much as one can be from only doing it once) and am currently planning on getting my riggers license this summer when I am hopefully in a steady state of remission. Oh, and I quit smoking! This is day number 11 without so much as a puff!

Cheers!


-JD
 

ameslouise

Moderator
Hi JD - Welcome to the forum! I'm not very sage and don't have much to offer other than to say good luck. It sounds like you have a good plan in place with your doctor. You'll get things under control soon and you'll be able to continue doing all those things you love!

There are some very experienced and knowledgeable people on here and everyone is so nice. I'm sure you'll find it as inviting and comforting a place to be as I have.

Take care of yourself! - Amy
 
Hey JD, and welcome. I have to say I'm along the same lines as ameslouise - I'm not very sage, but I do have some experience with Crohns. 16 years dealing with it, and still kicking. =)

Good health and best of luck.
 
Hey JD. I know exactly how you feel, I was diagnosed as a freshman in college. Keep us up to date on how you doctor plans to proceed. And nice car BTW, I love the M class BMWs.

Best,

Alex
 
Well...I feel your pain. I am 44. I was diagnosed when I was 7. Started major problems when I was 12 or 13. Had problems all through college and ended up having surgery during my summer after my junior year. Giving up smoking is huge...great job. I gave up drinking about 15 years ago also. I have had two resections. Been on multiple medications. On 20 mg of predisone and humira injections (40 mg injections every other week). The memory thing seems normal...when you feel like garbage and going through everything that you are- making notes on a single pad that you keep either with you or in the same place everyday. Because of the amount of medication over the length of time I have incurred liver damage. The disease just sucks. Finding peace and relaxation "I find" to be very helpful. A good book I ofter refer back to is "Controlling Crohn's Disease- The Natural Way" DOES NOT MEAN QUITTING YOUR MEDS...just a good reference on a better diet...some of the stuff I follow..but I still have bad habbits, but no drugs or alcohol... just sugar is my worst enemy.

The guitar was a big part of my life...did the band thing for over 10 years with my brother (Haze Empire or Haze Brothers). Love my car...a 69' Cadillac DeVille Convertible and my other hobby is riding my 2009 Iron 883 Harley Davidson. So you have a lot of friends here and a lot of input.

The main thing is...your not alone my friend and welcome.

John C.
 

Crohn's 35

Inactive Account
:bigwave: Hi JD, welcome to the forum. There is alot of information here, laughs, and helping one another out. Glad you found us. Crohn's is very hard to detect, and you are pretty lucky for fairly quick diagnosis. I am on Prednisone too and I found if I took an antinausant pill made me drowsy and slept. The last time I was on it I was up for 48 hours and your body being ill can't handle that, so I learned this time around. Most of us don't like Prednisone but it helps to stablize you until the course of a longer term medication kicks in.

Hard being a student and having this disease, and I applaud you for quitting smoking, I did too almost coming up 9 years ago. Not easy, but great that you did it kudo's! Keep going. Mouth sores, cankers are very common with Crohns. Hope you enjoy being here, a great bunch here to give you their experiences too!
 

Astra

Moderator
Hi JD
and welcome

I'm not sure what sage is, is it a herb? lol
glad that you found us and we're here to support and provide some laughs too.
I'm on Preds too, just tapering off from 40mg, it is evil, but it does the trick, and the insomnia is a killer. Try to take it very early in morning, about 6am, and effects should wear off by midnight, hopefully you'll get some sleep then.
You will be wired, jittery and bombing around full of energy, but Pred does mask your symptoms, so be aware of that, and don't over do it. and stay off the caffeine too!
well done for quitting the fags too, admirable
good luck
Joan xx
 
Location
USA
Hi JD! Nice to meet you!

Rose City said:
Sections of my colon look like the lunar surface with pus volcanoes
:ylol2: :ylol2:

Wow, you've had a rough few months of it, haven't you? I'm glad you got a diagnosis so quickly so your GI can get on to figuring out the best long-term treatment for you so you can get off the pred!!!

I don't know anything about the "innards" of cars (I leave that to my husband!) but for some reason washing and waxing my car makes me really happy. It's just a '97 Pontiac Sunfire, but it's red and when it's clean and shiny I'm happy :)
 
Nice to meet you guys. Thanks for the kind words.

InkyStinky said:
I don't know anything about the "innards" of cars (I leave that to my husband!) but for some reason washing and waxing my car makes me really happy. It's just a '97 Pontiac Sunfire, but it's red and when it's clean and shiny I'm happy :)
I know what you mean. Washing my car is oddly cathartic.

-JD
 
Rose City said:
The diagnosis was made more firm by the fact that I display odd symptoms I would have thought completely unrelated but are consistent with Crohn's like joint pain, eye swelling/problems, and most bothersome, horrible and long-lasting mouth sores.
What kind of things does my doc need to know about? Every problem? I'm worried that the doc with think I'm crazy with all these problems, but if it helps her make a diagnosis.....

help?

What information on "unrelated" problems does my doc need to know?
 
Hi JD,

Just joined the forum here but have been living with Crohn's since my late teens. Once they diagnosed me and the treatment started I was back to normal in many ways (you're always aware of it) and life went ahead. Don't let it get you down but do make sure you remember to make allowances for yourself.
 
Thanks for all your support guys.

MacJr said:
What information on "unrelated" problems does my doc need to know?
I don't think you can be too complete in describing symptoms. A doctor isn't going to label you a hypochondriac if he sees your bowels are swollen :)

-JD
 
Hi JD,
Prednisone has always been my savior drug, when nothing else worked. I guess I have had some insomnia from it, but not usually.
Will it be Hurima for you? Or Remicade? I also had taken Azathioprine a few years ago. I remember it requires very close monitoring, with frequent blood tests for the 1st few months. I think my doc at the time had kept increasing my dose, according to the score of a particular blood test (I can't remember the name). I think, at one point, I was on too high a dose and I felt terrible. I switched doctors and started a new course of therapy (prednisone at first to get stable!).

I am on Humira now, and it's not doing much for me yet after about 4 months.

Good luck to you!
-Joe
 
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