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08-28-2016, 02:17 AM   #1
mere282
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Join Date: Nov 2011
Location: st petersburg, Florida

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Been a long time...

So it's been a really long time since I've been on here
And a lot has changed. I was officially diagnosed with crohn's
After finally going to an IBD specialist at Shands. I'd been
Through so many doctors and was just fed up with being
Dismissed.
I'd finally found a doctor who I thought finally
Got it. She diagnosed me with crohn's started meds I
Started to improve. Then I ended up in the ER with a
Sticture was started on steroids given s ng tube and
Admitted. Then my films were reviewed the other radiologist
Didn't agree. No I went through more tests mri showed
Stricture... The gi at the hospital said I can reach the area
That is affected lets do a scope. I allowed him he said
There's no stricture you don't have crohn's 😳
This jerk happened to be the head of the gi practice
I was currently at. So of course my gi caved and stopped
All treatment.. I decided I needed a break from everything
So I didn't go back. I started getting sick again
6 months later. I have two autistic kids so my
Attention was elsewhere.
After being sick for about a week we had a surfing event
For the know kids I went of course. My mother in law
Met us there took one look at me and said I'm coming
To get you tonight your going to the hospital.
So I did they did a scan and I waited for results just hooked
Up to fluids. Talking to the aid about the surfing event.
And couldn't wait to get home. Suddenly nurse comes
In started hanging meds gave me pain meds and the
Doctor walked in looking totally shocked.
I had another stricture and over 40cm of inflamed intestines
She wanted to admit me but I refused she sent me home
With an arsenal of meds. I got home that morning
And still feeling the effects of the pain meds I emailed
A doctor at the university of Florida.
Told her my story, begged her to help me because
My kids needed me. Turns out she is also a mom of kids
With special needs she emailed me back. Had her nurse
Get my records and I saw her a month later.
She was furious after reading my records and hearing my
Story. Just because I didn't fit the mold of what
A typical gi thought a crohn's patient looked liked I
Was dismissed.
She ran all the tests MRE,specialized Ct,pill cam
Small bowel crohn's was the result. I was on humira
For awhile it took care of strictures but stopped working
So now I'm on Entyvio.
Best advice I can give you go to an IBD clinic
Sorry for the long post😉
08-28-2016, 05:43 AM   #2
ronroush7
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Location: vienna, Virginia

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I am glad you finally got a diagnosis. I hope the Entyvio is working.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
02-10-2017, 03:57 AM   #3
mere282
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Join Date: Nov 2011
Location: st petersburg, Florida

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I am glad you finally got a diagnosis. I hope the Entyvio is working.


I think the Entyvio is a bust!
I head back to the IBD center later this month.... last scopes weren't great


02-10-2017, 06:24 AM   #4
ronroush7
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I think the Entyvio is a bust!
I head back to the IBD center later this month.... last scopes weren't great
I hope they can find something to get it under control.

02-11-2017, 03:03 AM   #5
mere282
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Join Date: Nov 2011
Location: st petersburg, Florida

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I hope they can find something to get it under control.


I'm think sterlia (probably spelled wrong)
But I've been hearing really good things about it.


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