• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newly diagnosed, here's my first post!

Hello,

I was diagnosed with Crohn's Disease this past week. Sometime in June I started having incredible pain and nausea immediately after eating and was sometimes running for the bathroom not even halfway through my meal. I originally thought I needed to have my gallbladder removed as that was a weird thing that ran in my family. After an ultrasound everything showed to be perfect. My doctor decided to put me through a barrage of tests and mentioned that Crohn's was something he wanted to rule out. I knew minimal information about the disease and got to researching. Page after page, and symptom after symptom I realized this is exactly what I had. Even odd things like eye and joint pain that I didn't think had anything to do with my gut issues. So after blood work, upper endoscopy, colonoscopy, CAT scan, more blood work, etc... (Thank GOD for insurance) I'm officially diagnosed. I'm currently on Budesonide to hold me over. Waiting for a chest X-ray and TB test before I can start Remicade or Humira. I believe the insurance company will ultimately make the decision for me.

Anyway, during all of my research I came across this site and saw so many people with questions that I had, and many more with advice and best practices for them. I knew this group would be an excellent tool in fighting to get back to good health and wanted to introduce myself and say hi. So, HI!

~Niminity
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Niminity!

I'm sorry to hear about your diagnosis, but I'm glad you were able to determine the cause of your symptoms so quickly. Have you noticed any change in symptoms since you started the Budesonide?

I hope things go well for you!
 
Yes, almost immediately. The doc said it was a pretty strong steroid but he didn't want me on it too long so this is really just a bandaid. I still get some mild pain and cramping after eating but nothing compared to what it was off the medication. I'm also slowly learning what foods are causing the worst pain and avoiding them so I'm sure that's helping too!
 

SarahBear

Moderator
Location
Charleston,
Long-term steroid use can cause a lot of complications, so it's great that your doctor plans to get you off the Budesonide as soon as possible. Also great that it's helping you already. Have you considered trying a food journal to more easily pinpoint problem foods?
 
It's something I really should do. I wasn't eating much lately because the pain was just too much. Now that I'm on the meds it's really amped up my appetite and I should keep one. It's just so hard to pinpoint what part of a meal is causing the pain.
 

Honey

Moderator
Staff member
Hi there, and welcome,
I was eventually on Budesonide for about 8 months as I was reluctant to go on Remicade infusions. Other meds caused me rather unwanted side effects and did not work!!! Methotrexate injections did nothing to reduce the inflammation. So, I am now on 8 weekly infusions of Remicade and am doing very well. My inflammatory levels are back to normal. Infusions are a last resort when all else fails.
I know it is very expensive so I am glad you are covered. I hope you do well on this treatment and feel a lot better soon. Let me know how you are?
:rosette1::welcome::rosette1:
 
I'm waiting to find out how much of the remicade my insurance will cover. A bit nervous about that really. But I'll post about updates, thanks!
 

Honey

Moderator
Staff member
Hi there,
Crohn's is fickle and symptoms can vary a lot. I am glad you are having less pain. Avoiding foods that aggravate it ,is a good idea. For me, that is rich, creamy or cheesy sauces, and nuts. I hope all goes well and you get relief soon. It takes time to find the right meds that work for you. Keep me posted.
:panda::getwell:
 
Top