Trying to understand Crohns

Hello,

My dad has ulcerative colitis and my daughter was diagnosed with Crohn's disease about a year ago (20 yrs old) She is on Lialda and Remicade infusions. I have recently been diagnosed with Crohn's myself. (42 yrs old) but my colon and stomach looked good through endoscopy and colonoscopy. Due to a couple of ulcers discovered at the end of the small intestine my GI doc advised me to do the camera capsule test. I did. It was discovered that throughout my entire small intestine from beginning to end the intestine was filled with ulcers and erosions? I don't take any NSAIDS.

I have had to use the bathroom up to 10 times per day the past couple of months and it seems like certain foods gives me severe stomach pain and every time that happens I get very bloated and my lymph nodes under my arm pits gets really swollen and I walk like a penguin.... My doctor put me on 9mg of budesonide daily but it seems to give me night mares.

I have not lost a ton of weight nor am I skinny. I am now living on protein drinks and I am wondering if anyone have any good ideas as of what a Crohns diet would be when the issues are within the small intestine. Red meat gives me tremendous pain and so does fresh vegetables and anything spicy. I am not lactose or gluten intolerant.

I also wonder if anyone knows what the next step would be if the small intestine gets worse.

Grateful for any response or help or advise.

Crohn's mom

Is budesonide the only thing you are on? Usually it is used to get flare under control like prednisone is given at the beginning while a maintenance medication is prescribed there are quite a number of different options - remicade, humira, imuran, 6mp check out the treatment section here http://www.crohnsforum.com/forumdisplay.php?f=16.
Diet is tricky as a lot of people have different "trigger" foods. I would suggest keeping a food diary. Most start with a low residue/low fiber diet - cooked vegetables, bland food, chicken, rice stuff like that - at least both my husband and son did.
Hope you are feeling better soon you have certainly come to the right space for knowledge and support

I was going to say the same thing as Jmrogers4, try keeping a food diary to try and detect trigger foods, it sounds like you have already figured out a few of them. Here is a thread that was started a while back, it was a survey to see what foods affected people the most, it might help you get an idea of what triggers your symptoms
http://www.crohnsforum.com/showthread.php?t=17707

I have been on a low residue/low fiber diet since being diagnosed with Crohn's last November. After about 6 weeks on crohn's medication (Asacol) and the low fiber diet - all of my symptoms disappeared. My doctor had recommended the low residue diet so I'm sticking with what's keeping the symptoms at bay! I will say I just started having some symptoms of a flare the past couple of days so when that happens, like on the days my crohn's was really bad (before I was diagnosed) - I go to mostly a liquid diet for a couple of days to give the intestines a rest and that really helps.

No high fiber food, no raw veggies or fruit (except ripe bananas or canned peaches/pears) is probably key to this diet. And you also need to figure out what foods bother you and stay away from them. Hope you feel better soon!

Here's a link to what you can and cannot eat on a low residue/low fiber diet.

http://uvahealth.com/services/digestive-health/images-and-docs/Low_fiber_Low_residue_diet_3.pdf

Thanks all for all the support. I am really grateful for the diet links since that is a hassle. My daughters Crohn's area is mainly the colon so she cannot eat the things I can eat and the other way around. It is truly amazing that the Crohns forums members are so supportive. To JMROGERS 4, yes I got diagnosed about 10 days ago and my GI doc wanted the inflammation to go down before prescribing a maintenance drug since she wanted to see how I responded to the Budesonide. Apparently that would determine what type of drug I will be taking in the future. I have my next appointment with her next week and it will be dedided then, I will keep you posted. The budesonide is not working very well so I am looking forward to something that does.
Thanks again everybody!!!!!