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Spouse

Hi Everyone,

So my husband was recently diagnosed with Crohn's disease a couple of months ago. Since then he's been having really bad episodes. I've been trying to be a support system to him but it's hard when I don't know what he can or cannot eat. I try to keep him away from diary and other foods I suspect my upset him. He was on mercaptophorine which made his symptoms worse so they are thinking about giving him Humira. How can I keep him level-headed without going insane myself? He always tells me I don't understand what he's going through so I joined this forum for a better understanding.
 
I SO know what you are going through! My husband says that often. It makes me very frustrated because I think I have some idea after 5 years of being with him. Our experience with Humira was awesome, however my husband can’t take it anymore. When he started we didn’t know the importance of him staying on it. He went on and off for a few years, now he has antibodies to it and it doesn’t work for him anymore. If and when your husband starts it DON’T go off it unless there’s is a problem. My husband finally got approved for Stellara and it didn’t work. Now we don’t know what to do
 

my little penguin

Moderator
Staff member
Peewee
Stelara takes 6-8 months before it’s effective and some need more frequent dosing
Ds started Stelara a year ago
But wasn’t increased to 90 mg every 4 weeks until March of this year
Made a big difference
There are other drug options
Such as Simponi and cimizia for Crohns

Een (exclusive enteral nutrition-formula only ) is used as a bridge until the meds can work
Others use steriods
Or combination of the two
Methotrexate can be added to reduce the likelihood of antibodies
Woth biologics
As far as food it’s very individual
Some tolerate dairy fine others don’t
Most are recommended to avoid nuts and popcorn

It’s tough but getting the right meds is key

Ds was dx at age 7 and now is almost 15
Getting a new normal is achievable

Good luck
 
I've personally narrowed down ' trigger foods' to processed foods,
e.g : Salami ( including on pizza.) Sausages, Curry + strong spices.

I'm also wary now of prawns & oysters.
We are all different, but what i've read, processed foods are up there.
Stay strong.
 
Peewee
Stelara takes 6-8 months before it’s effective and some need more frequent dosing
Ds started Stelara a year ago
But wasn’t increased to 90 mg every 4 weeks until March of this year
Made a big difference
There are other drug options
Such as Simponi and cimizia for Crohns

Een (exclusive enteral nutrition-formula only ) is used as a bridge until the meds can work
Others use steriods
Or combination of the two
Methotrexate can be added to reduce the likelihood of antibodies
Woth biologics
As far as food it’s very individual
Some tolerate dairy fine others don’t
Most are recommended to avoid nuts and popcorn

It’s tough but getting the right meds is key

Ds was dx at age 7 and now is almost 15
Getting a new normal is achievable

Good luck
Thank you! We didn’t know that about Stelara. He’s seeing a new gastro next week and I will bring that up. Unfortunately he has bad side effects to steroids so refuses to take them anymore. You also mentioned some meds I didn’t know about. I really appreciate the information!
 
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