Symptoms worse sinse diagnosis and treatment. Help?

[Dalton]

I have had symptoms for years and was finally diagnosed 7 weeks ago and put on Entocort for 9 weeks. I have also changed my diet.

At first, I was feeling AMAZING! I think I was in discomfort for so long that I forgot what "normal" felt like. As I figured out what I could eat, the bloating, gas and regular/painful trips to the bathroom subsided. It was such a relief.

In the last few weeks, however, I have been losing my appetite. I am now using a calorie tracker to make sure I am getting enough as I am starting to lose weight. Don't get me wrong, I can afford to lose a few pounds, but the rate is a little alarming and the exhaustion is starting to frustrate me. Also, if I eat something that doesn't agree with me, the symptoms are much worse than they were before.

It is very discouraging and I almost wonder if it would have been better to not know I had Crohn's. Has anyone else ever experienced this? Advice? Especially around getting enough to eat?

 

[Dalton]

Also, I am getting canker sores almost constantly...

 

[shamrock15]

Follow up with your GI. If entocort is budesonide, I was in on the early trials for it and it didn't work for me. I had skip lesions and strictures, something that it wasn't able to work with. I was on pred almost constantly until it started to lose effectiveness even half way through the course. As a result, I ended up hospitalized and on my way for my first surgery about 4 months later.

Depending on your particulars, it may be that entocort isn't the med of choice for you. You can examine the biologics (remicade paired with azathioprine has done wonders for me) with your doctor and hope that it can take care of whatever is causing your issues. The goal is to try to prevent scarring for you because there isn't a pharmaceutical approach to scars in your bowel.

 

[Dalton]

My G.I. told me that my symptoms are likely from an illness I had when I started Entocort, but I'm not buying it. Now I am getting D again, furiously. I just want to go back to being ignorant and mildly uncomfortable.