03-26-2011, 10:42 AM   #1
farm
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Location: Winston Salem, North Carolina
Just pissed

Well after YEARS and YEARS and freaking YEARS of no remission I had yet another colonoscopy last week and to no one's surprise:
Active Crohns: Moderate to Severe
Narrowing of the ileo-colon
No cause found for the bleeding, may be from higher up in the small bowel.


Yay! Back on Entocort (because I refused Pred.), Pentasa, and Remicade.
And the note next to Entocort says, "Take Entocort EC 3mg by mouth once a day indefinitely."

Of course I'm to taper down to 3mg a day first.

It's been years since I felt normal. And since my surgery 1/1/09 it's really just been worse.

That is all...good day.
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03-26-2011, 10:55 AM   #2
Dexky
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We've never met Farm, but I remember seeing your name quite often when reading over some old threads. Sorry you've found the need to return!! I hope you find remission or at least a comfortable close-enough soon!!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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03-26-2011, 11:28 AM   #3
Astra
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Hiya Farm

I was on Entocort too, for it to work 9mg is recommended for 2 months then taper to 6mg for a month, then 3mg for 2 weeks, and/or 3mg every day to maintain for up to 3 months only, this is what my gastro said anyway.
And it worked, hope it does for you too
good luck
xxxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




http://www.facebook.com/#!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

03-26-2011, 11:44 AM   #4
Jennjenn
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Location: New York


I am sorry Farm. I can relate to the frustration of still years later after surgery and not feeling well. I hope that the meds work and help you get some relief.
03-26-2011, 03:22 PM   #5
ameslouise
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Hey Farm - I can totally understand why you are pissed. That just sucks! And that word...."indefinitely" ... that's really a drag.

What else have you tried other than the Remi?

Fingers crossed that you can start to find some relief. Keep us posted. We like to see ya around here, but not to see you so bummed out.

- Amy
03-27-2011, 12:22 PM   #6
farm
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Location: Winston Salem, North Carolina
I've tried Imuran which landed me in the hospital twice. Much more Pred. than one should ever take. My last "trip" started at 120mg and tapered down to 0. I thought I'd lose my mind on that one.
With the years of Pred, I now need at least 2 back surgeries where my spine was the victim and is deteriorating.

I'm on 9mg of Entocort now for 2 months, then down to 6mg for 2 months then down to 3mg for the rest of my life. Also I'm on 2,000mg of Pentasa daily for the rest of my life; and now I'll start back on Remicade at 10mg/kg IV every 6 weeks.

It could be worse. I'm trying to stay positive.
03-27-2011, 09:01 PM   #7
DMS
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Sorry Farm that your colonoscopy didn't give you better news.
Did the Remi do anything good for you?
03-27-2011, 09:05 PM   #8
aliciars
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So sorry for you. I hate this disease too. I haven't been able to find remission either. SO FRUSTRATING!!!! Prayers for you.
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Dx June 2010 - UC
Dx Crohns - Aug 2010
Currently: Azathioprine 150mg
Proctofoam (trying again?)

Supplements:
calcium+D, vit B, multi, aloe vera caplets & Fish oil

Tried:
Lialda 4.8 mg (Dr suspects allergic reation)
Colocort Enemas (increased bleeding)
Proctofoam (did nothing)
Prednisone (6 months did nothing but have me gain 30+ pounds...booo)
Humira weekly injections
Remicade (allergic reaction - hives)
Canasa suppository
03-28-2011, 06:54 AM   #9
farm
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Location: Winston Salem, North Carolina
Sorry Farm that your colonoscopy didn't give you better news.
Did the Remi do anything good for you?
Well I was on it over a year and according to this scope, it didn't help.
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