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Not Feeling Like Myself


Mon, October 31, 2016 10:41 PM

This is going to take a little time so please bear with me.

I've been a Crohn's patient for 27 years. I've dealt with all sorts of issues related to it. Massive pain, hospitalizations, surgeries, you name it. About three years ago I had a host of medical problems starting with a Crohn's attack that sent me to the hospital for three weeks, then the day after I got out I went right back in with severe pancreatitis that's really kept me in and out of the hospital/er for the last almost four years now. About two years ago I was placed on Humeria.

It's been what I would guess would be called a God's-send as I have had little to no attacks since. Plenty of blood & diarrhea however along with some mild pain & discomfort.

Therein lies my problem. I don't feel like myself. It feels like something that was a part of me for so long is now gone for good. I liken it to someone losing a limb - you know it should be there but it's gone.

I've discussed going off the humeria with my dr and he told me that I would be back inside of a hospital within six months if I were to go off it. I know I should remain on it but I really don't want to be anymore.

Advice?

FPO kylevarnell
Joined Oct 31, 2016

Tue, January 17, 2017 1:44 AM

 Reply posted for saramerkel.

Wow. I really can't tell you how to live your life but I can say that you have helped me a lot in figuring out how to live mine. My gastro doc has been trying to get me back on meds and I have been sooooo resistant. Hate the side effects. Yet I am having pancreas attacks of no known origin. I just have been wanting them to Prove to me that it's my Crohns, like I can't believe Crohns would do this to me. Like it has to be my gallbladder when there is no sign that it is my gallbladder and yet I could be back in the hospital on an IV fast tomorrow afternoon if I just EAT. A human survival technique! Lol ...so... Yeah I'm going to take the medicine... Thank you... You helped so much. I've been in so much pain and I could cry next time I go to the hospital if not from pain then from being at the freakin hospital again and feeling helpless and stuck and like... It will inevitably happen again... Now maybe it won't... :)

FPO creatingrenewal
Joined Jan 17, 2017

Tue, January 10, 2017 4:49 AM

 Reply posted for kylevarnell.

Hello there. I hope you are doing well.

FPO saramerkel
Joined Jan 8, 2017

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