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Crohn's Disease Forum » Your Story » Brand new to the forum :)


05-20-2014, 04:54 PM   #1
MrsDay
 
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Join Date: May 2014
Location: Carmel, Indiana

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Brand new to the forum :)

Hey everyone
My name is Jillian, I just turned 24 and I was diagnosed with Crohn's disease about a month ago. I can't say I have felt "normal" as far as energy or even just feeling well in general since I was 17 or so. Doctors I saw told me my stomach pain was stress. About a year and a half ago (right after getting married) I asked my doctor if I have Crohn's disease (I have 1 cousin and 3 second cousins with the disease) and she said I didn't have it. Instead of the usual losing weight, I began gaining weight about 2 years ago. I used to average 105-115, and am now hovering around 150. After asking my doctor AGAIN a month ago, she did bloodwork to appease me and found high levels of inflammation, and within a week I was scheduled for a colonoscopy. The colonoscopy found Crohn's (duh, doctor) and possible fistulas. The next week I moved from Iowa to Indiana and started with a new doctor. That doctor had me get a CT scan last Friday, and started me on prednisone (even more weight gain. Yay me)
Um, can I just say getting the CT scan was the worst day of my life? I had to have an NG tube and get pumped full of water, and I threw up 10 times in 4 hours. One time on the CT machine itself (revenge!!!)
Did anyone else have that issue?
Well, the terrible test did find NO fistulas (yay!) or other abnormalities. Found that out yesterday, so that brings y'all up to speed
So currently...dealing with changes of new state, new job, Crohn's disease....it's been a lot to take in with no support group that fully understands. My husband is a nurse, and AMAZING support, but as you all know that only goes so far. I'm tired, in pain, confused, frustrated with a lot going on right now, just looking for a community.
Thanks for taking the time to read this. I look forward to sharing this journey we're all on.
Jillian
05-20-2014, 06:46 PM   #2
aburns
 
Join Date: May 2014
Location: new windsor, maryland
Hi Jillian,
I was diagnosed at 40 and it hit me like a ton of bricks!!! Relax, do lots of research...I learned how to meditate to ease the pain and stress. Good luck to you and find something to smile about each day...little things mean allot
05-20-2014, 07:10 PM   #3
nicolemarie
 
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Join Date: Feb 2014

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Hi Jillian!

I'm new here too, but I love that there is such a supportive community that knows what I'm going through! I've never had to have a CT scan but it does not sound like much fun to me. Fortunately (I guess?) my fistula is external, and you can see it clear as day :/
We all know what you are going through, and it certainly isn't easy. I am still trying to find my triggers, and what causes my flare ups, which is the most stressful. Keep your chin up, always here if you want to talk!
05-20-2014, 08:35 PM   #4
DJW
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Join Date: Jul 2013
Location: Ontario

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Hi Jillian. Welcome to the forum. I've had ct scans in the past but yours sounded AWFULL!!!
I glad you have a diagnosis. Treatment can start. Sending you my support and hope for remission quickly.
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Dave
05-21-2014, 10:49 AM   #5
MrsDay
 
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Location: Carmel, Indiana

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Thanks for the welcome Went to the doctor this morning- he is starting me on Humira. Im a little nervous, but at the same time just ready to get this madness under control!
05-21-2014, 03:58 PM   #6
Megankat9
 
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Join Date: May 2014
Location: Gainesville, Florida
Greeting from Florida! I'm Megan, 42 years old, dx'd in 2006, but have probably had it since I was a teenager. Had allergic reaction or severe reactions to all medications except prednisone and Humira. But now am having awful memory and thinking problems. Getting in trouble at work because of mistakes. I'm still having awful pain and diarrhea. Getting another scope done in June. I don't know if I can keep working anymore, but I am the only one that gets hourly pay and benefits - my husband has a commission-based salary. I'm getting down, and don't know how to turn this around.

Thanks for letting me vent!
Megan
05-21-2014, 04:32 PM   #7
lisadc1
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Join Date: May 2014
Location: Kentucky

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Megan, I am 45 and I am having many problems as well, brain fog, to the point my family gets frustrated. I am beginning remicade in a few days...just waiting for the call. Meds don't seem to be working well, hyper colon - "jumps" or spasms often and D multiple times a day. Teaching takes most my strength, and I feel like I have little left of me for my family. Feeling of hopelessness and not knowing how to "fix" this is a problem for me, too. Praying your scope results in some healing for you! Jillian, I initially lost a lot of weight, but my steroids and other meds have caused weight gain as well, and too fatigued to work out. Well wishes for you also!
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