Diagnosed and so confused!

[cielos]

I had been having crohn's symptoms for awhile, but I was diagnosed with crohn's & colitis ( I was unaware you could have both at the same time), this week. Needless to say I am overwhelmed. I am only 32, and got married last year, so its been quite the year.

I know most of you have far more knowledge and experience with this than I do, but I am curious do most of you read a book on the subject or where are you getting the info on the disease, I am trying to become as educated about this as possible and not quite sure where to begin.

Also it seems that there are so many differences of opinion when it comes to treatments and diets, Do I figure out the things I avoid through trial and error, or is there some sort of scientific basis to what I need to avoid? Right now it seems that everything I eat makes me very sick.

Thank you for advice trying to take this journey one step at a time.

 

[Hobbes650]

Hi Cielos,

The internet is a great reource, and you've already found this forum so you're off to a good start! As far as diet goes, it's very subjective since it depends on your level of sickness. In short, foods that are well tolerated are low residue (meaning it breaks down well and not much is left in our stool). Foods that are not low residue include nuts, popcorn, raw vegetables, etc. Other foods that can be irritating are dairly, spicy foods, fried foods, etc. The safest foods are soft and bland. Somwehere in between you will find what you can tolerate. If you're unsure, then just eat a little bit and see- trial and error is fine. Changes in diet will help make any pain easier. When things were rough for me, I would drink Ensure, or other protein shakes- easy way to get calories. Treatment is more standard than you think. Typically, one starts out taking a sulfa drug like Pentasa and a corticosteroid like Prednisone. Prednisone is fast acting and helps reduce inflammation, but has lots of side effects. So, other types of immunosuppressive drugs are added (like Azathioprine, Imuran) or biologics (Humra, Remicade, etc). These other drugs don't work as quickly as Prednisone, but once they kick in many are able to get completely off Prednisone.

Try not to get confused about all the different names you'll hear for IBD- the names simply change depending on the where the disease is active. You mentioned you have Crohn's and Colitis- odds are you don't have two separate diseases.

We can all relate to your feelling that everything you eat makes you sick. Perhaps try real soft and low residue food in small portions. I liked rice, eggs, soups, etc. But when things are bad,even that stuff hurts a bit. Once the meds start kicking in you will feel better!

 

[Bottomless mummy]

I started out on azathioprine, never prednisone.

 

[mnsun]

Generally, and this is not scientific, I would say some foods feed bad bacteria (sugars, fake sugars, refined white flours), some promote good ones and then there is the "leaky gut" hypothesis which has to do with intollerances/allergies. I like this hypothesis because it accounts for individual food triggers.

So crohn's causes inflammation and general breakdown of the gut lining. This allows some particles of food to, perhaps, breach the lining into the blood at which point your body sends antibodies to deal with said particles. Thereby creating antigens specific to certain foods or food groups and causing "allergic" reactions of sorts as your body is repeatedly exposed to these "allergens" which it becomes accustomed to fight off.

So, who knows. Sounds good to me. Some people may only be mildly reactive but nonetheless intolerant of certain foods: milk, eggs, wheat--for starters. My best guess.