What other options are there?

I have been in complete remission without a single flare since 2007, and the only drug I am using is pentassa combined with SCD diet.  This diet is not for everyone because it takes fanatical dedication to see results , but it sure beats the alternatives like humira y remicade.

read the book "breaking the vicious cycle" which describes the scd diet and the theory behind it.  You have nothing to loose , and all to gain if it works for you.

Hi Minnietoty, I just googled avascular necrosis and came to know that it could be caused due to the long term use of excessive alcohol or high dose steroids. In your case, I guess it is the latter. I don't think 9mg Entocort gives such a huge side effect. I have seen a lot of people that have been on steroids for a long time without huge side effects. I was on entocort 9mg as well. My family doctor had told me that it is one of the best medicines available with very few side effects. I would suggest you to make a food plan. I'm not talking about any diet here. Use your regular grocery but eliminate artificial sugar, coloring, processed food, preservatives, allergic foods etc. Stick on to it for sometime as your gut recovers and try to wean off medicines gradually. I have made many SCD foods plans and I use some of them as benchmarks. If I get any trouble with the addition of new foods, I jump back.

A lot of medications are used on patients longer than what the prescribing information calls for; sometimes it's the only alternative. For my daughter who has a different illness, long-term use of a medication at the maxed-out dose has proven detrimental and she's still suffering after 5 years of stopping, and the damage is permanent.

I took Entocort longer than 9 months and my GI felt it was safer than the prednisone I'd been on for 1.5yr. I eventually got off it, but I had to do it slowly. I have a love/hate relationship with steroids. They do work initially but it doesn't last long and the side effects can be serious. I started having diabetic symptoms and osteoporosis. While on pred. I had gallstone surgery and developed holes where the sutures tore open because my skin was so thin so I had to get off pred. before I had my colon surgery the following year.

I know I'm rambling. Sorry. I was declared steroid dependent while on pred. but I did eventually get off. It was hard, but doing it very slowly was key. My Crohn's has been bad at times, but I consider my disease moderate so that played a part in my being able to get off. Had I been flaring badly I probably wouldn't have been able to do it.