Crohn's Disease Forum » Support Forum » Just Diagnosed...What to Expect


03-12-2012, 07:17 PM   #1
Billk78
 
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Location: Edison, New Jersey

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Just Diagnosed...What to Expect

Hi everyone,

After 20+ years of suffering from major stomach problems I finally have what seems to be a correct diagnosis: Crohn's. I had been to dozens and dozens of doctors throughout my life; some who wrote it off as "not wanting to go to school" or "being stressed out." Most of them just said it was IBS. I was even treated with Anti-depressants which I didn't need and they ended up messing me up even more.

My wife and I just had our first child so I decided I wanted to give things another try for him. So I did tons of research and found an excellent GI Doc about an hour away. Not expecting much, I made an appointment, and Im glad I did!

She ran bloodwork for several different things. She told me from the first minute I saw her that she believed something was wrong with my gut and that this wasn't in my head.

Anyway, today I just found out that my bloodwork came back positive for Crohn's Disease and she says she is positive that's what I have. I think the next steps are going to be swallowing a camera pill (anyone done this?) and maybe another colonoscopy (had one in the past and doctors must have missed the Crohns).

While Im happy to finally have what seems like it might be a correct diagnosis, Im a bit anxious about what lies ahead. Can any of you share what you think I will be facing? Do most medications help a lot with this? I have been in pain a good part of my life so Im really hoping that maybe something can work now that I have a diagnosis.

Also, is it possible for a doc to miss Crohns? Im curious as to why my original GI doctor did an endoscopy and colonoscopy, as well as a CT scan and told me everything was fine.

Thanks!
03-12-2012, 08:04 PM   #2
crohnicaly stinky
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Many people do really well with medicine. This disease is very unique one person to the next, so don't be surprised if you try somehting someone swaers by and it has no effect. You need to learn a lot and figure out what works for you. The diagnosis can be tricky too. Did they do a biopsy during your colonoscopy? That can shed light some times. The pill cam can be tricky if it doesn't pass through, many GI's stay away from them for that reason. But others will try them. My best advice is to become your own advocate, read as much as you can, be proactive and try to know as much as you can so you can have good conversations with the doctor. Good luck to you and don't worry too much.
03-12-2012, 08:12 PM   #3
Billk78
 
Join Date: Mar 2012
Location: Edison, New Jersey

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Thank you. I do not believe the first doc did a biopsy during the colonoscopy. This new one has said she probably will. So I think the first step is to find out what type and what degree of Crohn's I have and then start on a treatment.

It's just easy to be pessimistic after many years of nothing working. But this doctor has given me new hope.
03-12-2012, 09:41 PM   #4
Momof2EW
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Bill, welcome to the community. You will find a lot of nice and helpful people on here. Crohn's like the above poster said..is a tricky disease. I was diagnosed in September of 2010 at only 24 years old. I suffer from severe case of CD, I also swear by Humeria injections for saving my life. Its definitely been the medicine to work for me. I hope you find all the answers you need and congrats on your new bundle of joy!
__________________
Elise
Getting through this, one day at a time!
Diagnosed With Crohn's in September 2010
Medications:
Remicade
Lexapro 30mg daily
Klonopin 1mg 2xday
Trazodone 150mg nightly
Lomotil(only as needed)

Tried & Retired:
Humira,Buspar,Effexor XR,Ambien,Prednisone(devil)

"Sometimes I think my life would make a great TV movie. It even has the part where they say,
"Stand by. We are experiencing temporary difficulties."
03-12-2012, 09:44 PM   #5
Billk78
 
Join Date: Mar 2012
Location: Edison, New Jersey

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Thanks Mom of 2. I plan to come back and post some more after seeing the doctor again. Id especially like advice on whatever medicine or other treatments she decides on. Im finding this forum very helpful. Good luck and I hope you're feeling okay.
03-12-2012, 09:49 PM   #6
Momof2EW
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Thanks Bill! And yes, keep us posted and good luck to you! I'm feeling well, most days are better than others..I stay lucky for the most part.
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