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Crohn's Disease Forum » Your Story » New & A Little Overwhelmed


07-17-2017, 10:35 AM   #1
jmborris82
 
Join Date: Jul 2017
Location: Addison, Illinois
New & A Little Overwhelmed

I was just recently diagnosed back in April. I've had years of problems starting with kidney stones back in 2009, gall bladder removal in 2010, pancreatitis,gerd and acid reflux in 2011. All was fine for a while until 2015 when I started bleeding. Colonoscopy came back as internal hemorrhoids. Wasn't told much at that point except to take in more fiber. about a year later the bleeding started again. When I went to my appointment was told the same thing but he wanted to do a flex sig to be sure. Fun times. 2 months later (yes it took that long to get an appointment-while still bleeding ALOT) I got the phone call a week after my flex sig. UC and the beginning stages of Crohn's. Prescribed a month of enemas & Lialda twice a day. That one phone call really set me on an emotional roller coaster. Luckily I'm not that unfamiliar with this disease. My maternal grandma had it for as long as I can remember before she passed. One of my best friends was diagnosed 7 years ago at the age 17. She has been a tremendous help & shoulder for me. But as we all know, no matter how much you think you know...there's so much more. And everyone around you all of a sudden becomes a doctor and thinks that they know what's best for you. I've actually lost a friend from high school because I didn't take her advice about seeing a nutritionist before starting my meds. It gets exhausting hearing "my friend has something like that, try this..it works for them". They don't get everyone is different. I get so frustrated that I gave up venting to people. Especially since I'm still trying to learn myself.
I'm still waiting for my follow up appointment-my GI wanted to wait 3 months before seeing me again. In the meantime my bleeding has started again with a vengeance. Going to the bathroom takes all my energy. The pain & bloating makes me not want to wear anything around my waist. My GI put me back on enemas & doubled my Lialda to four times a day. But I somehow feel worse. I honestly don't know what to do anymore.
07-17-2017, 10:39 AM   #2
ronroush7
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It sounds like you could need something stronger. Call your gi and tell them what is happening.
07-17-2017, 11:09 AM   #3
jmborris82
 
Join Date: Jul 2017
Location: Addison, Illinois
He said that if upping it doesn't work he wants to go to infusions-which worries me. But he wants to wait until my appointment at the end of August.
07-17-2017, 11:49 AM   #4
ronroush7
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I wish you all the best.
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