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Crohn's Disease Forum » Your Story » New here - newly diagnosed and freaked out.


06-05-2011, 03:49 AM   #1
AZchi
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Join Date: Jun 2011
New here - newly diagnosed and freaked out.

Hello everyone. I have had GI issues for 20 years or so. For the first 10 to 15 years, docs always told me I had IBS or a nervous bowel. Five or so years ago, I was told I might have UC. I finally went to a GI doc two years ago, was scoped, told I had "mild" left side colitis, and given Lialda. My problems got worse from that point on. I had always suffered with day-to-day issues and occasionally from what I self-termed as flares (but which usually lasted no more than a week or so). Then about a year ago, I experienced a flare unlike anything I ever had in the past. It lasted about 3 months. Just when I thought it had ended, I got what I thought was an anal fissure that hurt like mad for weeks but then stopped hurting and left a tag. I visited my GI who took my ESR (is that the right term?) and CRP levels, said they looked "OK", and said the fissure was likely just from excessive BMs. I then felt good for a few months. About 4 months ago, I started a flare twice as bad as the previous one. I developed another fissure, but this time I ended up with an abscess. I gave up on my GI doc and went to a very well regarded hospital/clinic. They took one look at my sore bum and told me I had an abscess and very likely have perianal crohn's. Since that day I have had an MRI, CT and various other diagnostic tests. Just a week ago, I had a EUA at which time they drained an abscess and placed a seton in the one fistula they found. The other diagnostics showed issues in my terminal ilium as well.

My GI and CRS want to put me straight onto Remicade. I trust these new docs and I am pleased they took the time to locate issues my former doc just dismissed. I am just very freaked out and scared. I keep wondering to myself how I went in just a few short months from having what I thought was left-sided UC that, while not being a walk in the park, was at least manageable, to having perianal and TI crohn's, one surgery under by belt (with a lovely seton as a take home present), and my first infusion of a drug that scares the daylight out of me just weeks away.

Does perianal crohn's just continue to get worse? Are my docs insane for putting me on Remicade when the only others drugs I have used are Lialda, Flagyl and Prednisone? I am sorry for the ranting email and questions, but I feel like I went from 20 MPH to 100 MPH in almost no time and I am freaking out about everything - prognosis, how this will affect my job, my family, etc., etc. Any words of wisdom and advice would be greatly appreciated.
06-05-2011, 04:42 AM   #2
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hi AZchi and

Wow you have been through the wringer! I'm so sorry to hear about your original GI...

Thank goodness you have moved on are receiving appropriate care. Many GI's now subscribe to the school of thought that says you hit the disease hard, straight up rather than start slowly and work your way through the various drugs until you reach the biologics like Remicade. My children's GI is one of those that thinks like this. Also with perianal disease the biologics have proven to be very effective at healing fistula's.

The progress of the disease is different for everyone but if you are responding to treatment then it won't get worse. I have just been through that 20 - 100 mph with my son so I know that head whizzing feeling!

You have found the right place for support and info so any questions you have please don't hesitate to ask and remember, there's no such thing as a dumb question or TMI!

Good luck and welcome aboard!



Dusty. xxx
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06-05-2011, 12:22 PM   #3
AZchi
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Join Date: Jun 2011
Thank you so much, Dusty. I must have spent several hours last night just reading over posts on this forum. There seems to be so much valuable information here. I am glad I found this place.
06-05-2011, 01:50 PM   #4
Terriernut
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My Support Groups:
AZchi, youre new GI sounds like a gem! Although it must be terrifying for you, it sounds like your new team know what they are doing! If they hit it hard and fast, and put you in remission for a long period, hopefully you will avoid surgery. That my friend is a good goal!
Welcome to the forum!!! A toast to your future health...fingers and toes crossed!
Misty
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Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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06-05-2011, 02:20 PM   #5
Nancy Lee
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Location: Windsor, Ontario
Hello AZchi and welcome to the forum!
Sounds as though you've really had a time of it!!
Glad you got back on track with this new doctor.
Keep in mind as Dusty said before me that some doctors like
to start off with the big guns and get things under control first off,
so don't be afraid of him wanting to start you on the Remicade immediately.

Keep us informed as to how you are doing.
Welcoming Hugs~Nancy
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06-05-2011, 05:50 PM   #6
ameslouise
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Hi AZChi and welcome!

Not to much to ad that Dusty and the others haven't already covered, but just wanted to say welcome and good luck! Crohn's diagnosis can be really scary and overwhelming, but once you know what you are dealing with, you can figure out the best treatment plan with your docs.

Good luck! - Amy
06-06-2011, 06:21 PM   #7
AZchi
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Join Date: Jun 2011
Thank you all so much. I am so glad I found this forum. Everyone is so nice, and it's nice to communicate with people who actually have the disease (doctors are great, but if they have not experienced the disease, they can never fully understand in my opinion). Thanks again. - Steve
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