Crohn's Disease Forum » Your Story » Please Help -- UC -- systemic inflammation, mouth sores


05-04-2019, 01:27 PM   #1
jodig14
 
Join Date: Mar 2019
Location: brooklyn, New York
Please Help -- UC -- systemic inflammation, mouth sores

Hello All,

This is my first post -- I'm in a desperate situation.

Diagnosed with UC in February. Started meds -- mesalamine and canasa - had severe allergic reaction-

the unbearable mouth sores began soon after I began the meds -- that was early march -- today, May 4th-- i still have them and they're huge and extremely painful (i cannot speak-- and I'm a professor...)

other symptoms: shingles, painful blistery lumps on my scalp, painful rash/bumps on arms/tush and, as of today, on my lady parts. unbearable ear ache (not in the last week) swollen lymph nodes around my neck-- oh, and excessive bleeding from the rectum. (it got so bad I needed a blood transfusion last month).

I have not had a normal bowel movement since January. And I am tethered
to the toilet-- have to be extremely careful with the timing of eating and drinking --because i've not made it to the bathroom in time on several occasions.

as well, the fatigue has been awful.

My calprotein level was teh highest my doctor at Cornell has ever seen. He has already had the suregry talk with me.

He seems to think that along with the UC-- I am having some kind of (powerful) systemic infection. what that is, he does not know.

He was about to start me on biologics-- but I did have a few promising days last week - and our last appointment fell on one of those days-- and my request was to wait two weeks before more meds. The hopeful days short-lived and gone.

Because this is all very new to me -- is there anyone out there that might have some
advice for me? (I should note my life is VERY stressful. Mom is dying -- and I am having serious financial issues.)

Thank you, in advance, for rading this long post - and any advce given is so very much appreciated. (UC = HELL)

jodi
05-08-2019, 11:02 AM   #2
my little penguin
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Join Date: Apr 2012

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So if I read this right
Lots of symptoms
And no meds currently.....
Meds can be scary especially biologics
But when you see them work they are
“Priceless”
Ds was dx at 7
And had to fail many meds per insurance prior to biologics
That took a year
He started remicade at age 8
Allergic reactionx2
Switched to humira at 9
Found the right dose after 6 months
Now at 15 very few crohns issues

My point is biologics take a long time to work
And finding the right dose or version for you can also take time
Definitely recommend starting a med sooner rather than later
But keep in mind it will be months prior to getting things under control even woth a biologic

Good luck
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05-08-2019, 02:31 PM   #3
GirlwiththeCurl
Senior Member
 
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Join Date: Jun 2015
Location: Wyoming
Your symptoms sound a lot like Behcets disease, which can mimic inflammatory bowel disease. Mouth sores, genital sores, and rashes are all symptoms of Behcets. Of course it might not be that at all, but maybe it's worth looking into.
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