I'm a newbie

[Agodbold]

Hi. So I've been diagnosed for 3 years and still don't really know what Crohn's is. I mean, I read that it's inflammation in the Gi tract and can be hereditary, but really.. WHAT IS IT
I thought I was going to die during the 3 months it took them to diagnose me during a flare. But as far as I know I've never had another "flare" since I've been on Humira. I hear people talk about flare ups and remission. What does a flare up refer to. Is it just diarrhea or would I have to be about to die like when I was diagnosed.
I am tired ALL the time. I get basic infections like UTIs and respiratory tract infections easily. I have bouts of diarrhea at times. But no real issues with bowels since diagnosed(and that period of time was VERY bad) is a flare up just about the bowels or can you have a flare up that's more systemic like muscle weakness, fever, things that are disabling you but not related to bowels? Help me understand the basics..what to expect..not just that Crohn's is inflammation of bowels

 

[Tuff]

Welcome to the club. I'm sorry you had to find us. Some basic info: Crohn's is an incurable illness, so they don't know what causes it, yet. A flare is when you have symptoms present, that can be from mild to severe. It sounds like you had severe symptoms. Three months to a diagnosis is pretty good though.

remission is when you have no symptoms. They use the Crohn's Disease Activity Index http://en.wikipedia.org/wiki/Crohn's_Disease_Activity_Index

Crohn's disease symptoms can involve a lot more than the bowels. This is from the Mayo Clinic.
http://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/symptoms/con-20032061

There's a lot of information on these forums on a wide variety of subjects, or you can always ask questions.

 

[David]

Welcome to the community. I'm sorry to hear of all your struggles.

One thing I want to focus on is your tiredness. A VERY common cause of fatigue in people with Crohn's disease is vitamin B12 deficiency. Have you had yours tested?

Also, I think you need to discuss increasing the frequency of you Humira injections with your doctor as it doesn't sound like you're in remission

 

[Agodbold]

Thank you both. Apparantly I'm not in remission. I never knew about the Crohn's Disease Activity Index. Explains a lot. I thought at first if you weren't having loose BMs or and pain then you were in remission. The fact that the Index explained you can have a lot of other symptoms and still have a flare explains a lot. Going to my Dr tomorrow.

 

[araceli]

Welcome to the forum. I just want to add something. My daughter is mostly asymptomatic. No pain, no blood and at the most 3 trips to the bathroom when things are not going good. What I am trying to say is that even if there are no symptoms the disease may be doing damage inside. Always keep your appointments and get your tests done. I wish you the best.

 

[Honey]

Hi there, and welcome,
I hope all goes well for you at the doctors. It takes time to get the right meds that suit you, and of course the diagnosis first. Let us know how you are. Best wishes.
:welcome: