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My GI just upped the dose of folic acid to 2 mg a day to see if that helps with some of the issues. Just started, but seems to be helping.

Grumpy I take 10ml once a week along with Remicade every 5 weeks. Main side effects are fatigue and tendon pain, which lasts a day or two. I'm increasing the folic acid to see if that helps. Good luck. Hope it helps.

I had same experience. It did eventually get better, but still had some issues until doctor added methotrexate to the mix.

Sorry you weren't happy there Lodgelady. I see Doctor Patil. She actually listens. Maybe it's just that she's a SHE. The other two GIs I saw always seemed to be somewhere else. She's also open to trying new things when the old approach isn't working.

Not sure where you live Laughngirl. I live in Maryland and am treated at University of Maryland Digestive Health Center. It's a 2 hour drive, but well worth it. My doctor is going to be speaking on IBD at a local conference being held by CCFA. She is a gem. CCFA might be able to help you find a...

Find another doctor. I went through the exact same thing. It took me over a year and the loss of 55 lbs before I finally went to another doctor. By that time things were totally out of control. I ended up in the hospital for a week.

I think it's different for all of us. Same with how often we have to get them. I've been taking max dose every 5 weeks for 18 months. The doctor just added methotrexate shots weekly. I'm down to 5 to 7 a day. Still not great but better than it was.

Good luck. I am still fighting Prudential for my long term disability. You would think they'd give it up since social security has a much higher bar and now they can reduce how much they pay by what I get from social security. But they are still fighting it.

SSDI.

I used Heard&Smith. I never saw a judge or had a hearing. I was approved the first time. Don't know if it was because of my age (60) or because they specialize in Crohn's. They are on the web. Try them.

I used Heard&Smith. Got their info after reading about firms specializing in CD. I contacted them in January. I had been on a medical leave of absence from my job since the end of August and was appealing denial of LTD. I was awarded SSD in June with back payment to Feb (when I met the length of...

Jaron I think each of us differs and you just have to experiment to find out what you can tolerate. According to my GI doctor, it's not the diet per se, but what causes irritation and inflammation for you. I was eating a very restricted diet and still ended up in the hospital. I have only...

I was diagnosed in 2012 and struggled through most of 2013 including a stay in the hospital and numerous fistulas. I went on short term disability the end of August and was denied LTD. My appeal was submitted in May and the insurance company has extended their response time once already. In...

Sarahh -- I was approved for SSDI first time without even a hearing, but that appears to the exception. I used Heard & Smith from the start. You have to be out of work for a period, but I filed as soon as I was sure it was going to be a long term thing. It took 6 months. By the time it was...

We are all rooting for you afidz.

Was approved for SSDI. Got a check last Friday and the letter today. Didn't even have to have a hearing. Now if only my insurance company would bite the bulletin and approve my LTD, I could breathe easy. Don't know how they can deny it since only requires I not be able to do my current job and...

Thanks noguts. I forgot eggs. I have to be really careful with chicken and turkey. And definitely stay away from whole wheat products. Also watch spices. Parsley, which restaurants put on everything, is a big no for me. I take a multi-vitamin, prescribed vitamin D, and have done B-12 shots, but...

I agree with Dave-abes. It's very challenging. You also need to keep away from from meat with connective tissue (beef, pork). I stick with flaky fish (flounder, haddock, etc). You can have well cooked carrots and beets, mashed potatoes (no skin), and baked apples (no skin). I've been on this...

I'm always trying to figure out how my symptoms (fatigue, foggy brain, arthralgia) are related to the disease vs the treatment. I've done B12 shots and that helped some, so I'm thinking it may be related to nutrient depletion.