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Newly diagnosed: Am I just having "bad days" or are these "flares"?

dianasgarden

Diagnosed July, 2021. Ridiculously new at this!
Location
US (east coast)
Hi there, and hope you are all doing well today! I am 60 years old and was just diagnosed with "mild Crohn's disease" about one month ago. I am on Sulfasalazine, and just added budesonide yesterday. I'm still brand new to this, and trying to figure this all out. I am so grateful for all the wisdom and experience in this forum! Here is my question:
Most of my days are what I consider to be "good days": No pain, 1-2 formed, but soft BMs per day, reasonable appetite and energy. However, I have occasional "bad days": diarrhea, right sided pain, decreased appetite and energy. During the bad days, I just want to lie in bed and do nothing until it passes. The "bad days" never last longer than 1-2 days, at most. And I can ALWAYS identify something I ate in the prior 24 hours that didn't agree with me (raw cabbage, some junk food brownies, high fat ice cream, as examples).

It seems that if I stick to my "safe foods" (plain chicken, turkey burgers, egg whites or fish, white pasta, rice, small quantities of reduced-fat potato chips or dark chocolate) I am fine.

Before my Crohn's diagnosis, I thought I had IBS-D and followed a low FODMAP diet with some success. I am also very lactose intolerant, so I always take Lactaid or LactoJoy pills before anything such as pizza, etc.

Anyway, the "bad days" always happen after I try to get a bit more adventurous with my diet. So, would you classify my "bad days" as Crohn's flares, or just bad days that resulted from dietary indiscretion? I guess I am still trying to understand what "flare" really is. Can it last just one day? Thanks so much!
 

my little penguin

Moderator
Staff member
So few things
Since it’s only been a month your crohns probably isn’t under full control yet
Sulfanazine or 5asa are very effective in ulcerative colitis
However per the Cochran report they are not recommended as a monotherapy for crohns

they only treat the top layer of the intestine and leave the layers underneath without treatment
Since crohns attacks all the layers of the intestine

ulcerative colitis only affects the top layer.

some docs like to start at the bottom of the drug pyramid and work their way up
This means they use the least effective drugs first as a trial . These categories of drugs have the least potential side effects as well
Sulfanazine is part of that catergory

next on the pyramids is immunosuppressants
Such as methotrexate and imuran/6-mp/aza
These are more effective than the lower level

finally at the top of the pyramid is biologics such as remicade /humira /Stelara/entyvio
these are the most effective but the most expensive/more possible side effects

keep in mind that most insurances require that you prove the lower level (Aka cheaper drugs ) do not work before they will approve higher level drugs

Fwiw my kiddo has “mild crohns”
He currently takes Stelara and methotrexate combination , but he also has moderate juvenile arthritis. He has tried them all (Pentasa ,6-mp, methotrexate, remicade and humira )

if you have the right meds and they have had time to work you should be able to eat most things (not all ) without issue

sulfanazine takes about a month to bring things under control if they are going to be under control with the med .
You should know soon
 

dianasgarden

Diagnosed July, 2021. Ridiculously new at this!
Location
US (east coast)
Thank you, my little penguin! I really appreciate all the information. ESpecially the part about ... "if you have the right meds and they have had time to work you should be able to eat most things (not all ) without issue"
Wow, I'm looking forward to that!
 

dianasgarden

Diagnosed July, 2021. Ridiculously new at this!
Location
US (east coast)
I also want to add, the meds you are on I took when I was first diagnosed with crohns and they gave me 10 years of great remission.
Thank you! You've given me hope! And sorry you've had to deal with Crohn's at a young age.
 
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