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Living w Crohns for 13 years, Doc wants me on a biologic now


Thu, August 05, 2021 9:37 PM

Hello all...

I was diagnosed 13 years ago (in terminal ileum) my symptoms were manageable enough that I didn't use any meds, not even prednisone. It was very mild with 1-2 flares a year.

10 years after diagnosis I started taking prednisone for flares which now would occur 3-4 times a year.

2 years after this I was having monthly flares and my doc put me on Entocort.

Entocort got me back down to 1-2 flares a year then out of nowhere I was hospitalized with a blockage last month.

CT scan revealed the blockage was due to activity in jununem (not terminal ileum where I was diagnosed)

A CT from 2 years prior showed a tiny area of activity near jujunem but small enough that doc wasn't concerned.

Essentially, despite only having 1-2 flares a year - this area in my jejunum has gotten worse. I'm having a dbl balloon enteroscopy tomorrow to see exactly what's going on.

My doctor is strongly encouraging I go on a biologic. The entocort has been controlling the symptoms but as the CT reveals, the disease has spread anyway.

I feel fine 95% of the time with no symptoms at all so the idea of going on a biologic w all the side effects that come along is hard to stomach.

If I were experiencing regular flares and life was unmanageable then I would accept the biologic side effects as worth the price for controlling the disease - I feel like I'm going on a biologic because of imaging evidence not symptoms - essentially taking a drug that has great potential to make me feel worse.

does anyone have a similar story?

FPO Breaktheory
Joined Aug 5, 2021

Wed, August 11, 2021 7:43 PM

Reply posted for Breaktheory.

I've never missed a day of work

FPO rfi123158
Joined Aug 9, 2021

Wed, August 11, 2021 4:54 PM

Reply posted for rfi123158.

With the treatment at it's worst do you feel unable to work?
Curious which biologic you are on

FPO Breaktheory
Joined Aug 5, 2021

Mon, August 09, 2021 6:48 PM

Reply posted for Breaktheory.

I started taking a biologic 3 months ago. Sometimes I feel great, sometimes I don't. Not sure what to say other than I'll try anything if it can help keep me from having a surgery. My Crohn's has always been mild and while I felt okay most of the time, my ileum was taking a beating and that you can't see..... Good luck

FPO rfi123158
Joined Aug 9, 2021

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