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Skeptical about Crohn's diagnosis

Hi everyone, thank you for all of this great information. I was recently diagnosed with Crohn's after waking up in the middle of the night about 3 months ago with my hands and wrists on fire. This came completely out of the blue with no warning signs what so ever. I went to my primary physician and he told me I should find a rheumatologist. She sent me for x-rays which showed severe osteoarthritis in both wrists and hands so I figured that was it. She said that was just normal wear and tear from lifting heavy weights for 40 years and not what could be causing this pain and now swelling and recommended seeing a gastro doc and an ophthamologist because the whites of my eyes were very red. Oh yes, I left out that I have had chronic diarrhea for 11 weeks now.
Colonoscopy showed moderate colitis in most parts of my colon and apparently I had episcleritis in my eyes. So, I have been on prednisone for about 10 weeks for the pain in my hands and wrists now and also steroid drops for my eyes. Here is where my skepticism comes from. Last week after changing my diet to match a lot of things we were reading about and cut out red meat, cheese, dairy, etc. It did not see any improvement in my bathroom visits and actually seemed to get a little worse, on top of losing 10 lbs after taking out all the foods I like and eating chicken and fish. So, on Easter I said that I am eating anything I want and let the chips fall where they may on Monday. I ate prosciutto, sharp provolone, spicy eggplant, pasta with meatballs and sausage, ice cream and apple pie. I also drank about 3 glasses of red wine during the 7 hour day. I was prepared to call in sick if I needed to on Monday but I was fine. Nothing different than the usual up at 5:00 with the first of three bathroom visits before 7:30. Any thoughts or insight would be greatly appreciated
Thank you,
Wayne
 
"chronic diarrhea for 11 weeks now"

recommend looking into reversing gut dysbiosis and intestinal permeability (leaky gut)
 

my little penguin

Moderator
Staff member
Crohns is not leaky gut
Ibs has been associated with leaky gut
But not ibd
Crohns is a disease
Prednisone takes many weeks to treat the inflammation in the gut .
Food does not cause flares but certain types of food can make a person worse during a flare
The type of food varies by person unfortunately
What maintenance meds are you on?
Crohns is chronic and requires a maintenance med .
Methotrexate is an immunosuppressant (mid level ) commonly used .
Imuran is used less in folks due to lymphoma risk .
Biologics such as remicade or humira are used as well .
Prednisone is good to get the inflammation down but can’t be used long term .
Epi scleritis is common with flares (my kiddo used to get it a lot )
Some use een instead of or with steriods to reduce inflammation
Een is exclusive enteral nutrition (basically formula only boost ensure etc…) no solid food for 8-9 weeks then the meds kick in .


Enteropathic arthritis occurs with crohns
Some folks are lucky and the arthritis only flares when the crohns flares
Others like my son the arthritis flares independently of crohns flares
 
Crohns is not leaky gut
Ibs has been associated with leaky gut
But not ibd
Crohns is a disease
Prednisone takes many weeks to treat the inflammation in the gut .
Food does not cause flares but certain types of food can make a person worse during a flare
The type of food varies by person unfortunately
What maintenance meds are you on?
Crohns is chronic and requires a maintenance med .
Methotrexate is an immunosuppressant (mid level ) commonly used .
Imuran is used less in folks due to lymphoma risk .
Biologics such as remicade or humira are used as well .
Prednisone is good to get the inflammation down but can’t be used long term .
Epi scleritis is common with flares (my kiddo used to get it a lot )
Some use een instead of or with steriods to reduce inflammation
Een is exclusive enteral nutrition (basically formula only boost ensure etc…) no solid food for 8-9 weeks then the meds kick in .


Enteropathic arthritis occurs with crohns
Some folks are lucky and the arthritis only flares when the crohns flares
Others like my son the arthritis flares independently of crohns flares
The prednisone is to treat my arthritis and make it manageable until we get this under control. I am currently waiting on insurance approval to get started on Skyrizi.
Thank you for your feedback :)
 

my little penguin

Moderator
Staff member
So the dosing for skyrizi for crohns is much higher than the dosing for arthritis.
My adult child takes Stelara for crohns/arthritis plus methotrexate
Dosing for Stelara is 90 mg every 4-8 weeks
For crohns
Arthritis it’s 45 mg every 12 weeks which is why most rheumatologists won’t use Stelara for arthritis the lower dose doesn’t help too much .
You will need skyrizi for both arthritis and crohns
But skyrizi takes months to take affect 6-12 months so bridge therapy (steriods) will be needed or a flare will come back

fwiw most insurance plans in the US will not approve skyrizi as a first level drug tried for arthritis or for crohns due to cost
Remicade /humira are typically approved but only after cheaper immunosuppressants have failed like (methotrexate)
 
So the dosing for skyrizi for crohns is much higher than the dosing for arthritis.
My adult child takes Stelara for crohns/arthritis plus methotrexate
Dosing for Stelara is 90 mg every 4-8 weeks
For crohns
Arthritis it’s 45 mg every 12 weeks which is why most rheumatologists won’t use Stelara for arthritis the lower dose doesn’t help too much .
You will need skyrizi for both arthritis and crohns
But skyrizi takes months to take affect 6-12 months so bridge therapy (steriods) will be needed or a flare will come back

fwiw most insurance plans in the US will not approve skyrizi as a first level drug tried for arthritis or for crohns due to cost
Remicade /humira are typically approved but only after cheaper immunosuppressants have failed like (methotrexate)
Yes, I've read that here on the sight, regarding having to have fail before getting approved for Skyrizi. I am drinking bone broth in the interim to see if that provides any relief in the 2-4 weeks it may take to get started on some type of treatment path. Really not convinced I have Crohn's. Maybe just not wanting to give in I assume.
 

my little penguin

Moderator
Staff member
If you don’t believe you have crohns
Get a second opinion
Fresh set of eyes at a different hospital
We did this more than once for my kiddo when he was little
He was dx at age 7 but did not have a typical presentation
3 separate places confirmed crohns over the years
His arthritis is much worse than his crohns so that helps treatment wise
 
If you don’t believe you have crohns
Get a second opinion
Fresh set of eyes at a different hospital
We did this more than once for my kiddo when he was little
He was dx at age 7 but did not have a typical presentation
3 separate places confirmed crohns over the years
His arthritis is much worse than his crohns so that helps treatment wise
I'm 63 and it just showed up completely out of the blue. Crazy crazy stuff!!! Thank you
 

my little penguin

Moderator
Staff member
Definitely get a second opinion
It could have been simmering for years
Unfortunately some folks have no outside symptoms even when stuff is going on inside for years
 
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