I’ve been out cruising the net for the past few days, picking up what info I can on Crohne’s disease.
If any of you have experience with this, recommendations on diet, life, ect… that you would be willing to share, please post here, or email me.
eerily timely - my husband is going thru the diagnosis process right now. He’s really scared because of his family history, and I’m trying not to overreact until we know for sure what we’re dealing with. I’ll e-mail you when I have something of value to share. Right now, I’m also doing the on-line research and hoping for the best.
anea,
I can’t offer any information, but I will suggest that you head over to GQ in order to get Straight Dope from the segment of the Teeming Millions that hangs out there more than here in MPSIMS.
A friend of mine years ago had this disease. She could eat only these foods: poultry, fish, milk, eggs, white sugar and white bread products. Absolutely nothing else - no seasonings other than salt, no fruit, no vegetables, no alcohol, no nuts, etc. In addition, she was allergic to milk, so that had to be crossed off the list, too.
Every now and then, she would be ill, get a high fever, be in pain, and have to go to the hospital. However, this usually happened if she cheated a bit and ate a tiny morsel of tomato or something.
Except for dietary restrictions, she led a normal life.
I keyed in on this thread because my brother has Crohne’s disease. He needs to take drugs (steroids of some sort, I believe), but I don’t think he has any dietary restrictions.
You might want to ask Duck Duck Goose, who mentioned having Chrone’s disease in this thread. I haven’t seen her around lately, so I don’t know if she still posts, or is just on vacation, or what.
I’ve heard of a newish treatment for Crohne’s. It seems as if the body is made to function with a certain level of intestinal parasites. If the gut is too sterile of an environment, problems would probably ensue.
So they have given patients some kind of parasitic worm eggs, flatworm or roundworm or tapeworm. Just as the first step in introducing a new therapy, to prove that the substance is not harmful. And a significantly high number of patients reported cessation or ablation of their symtoms.
wish I had a cite for you, but you can probably search for the info.
I sure wish that I could talk to our friend Duck Duck, but last I heard, she was having ISP problems, and I don’t know if they have resolved yet.
Zut, they have started me on the steroids too, and I’ll be learning more about this hopefully soon. I’m just trying to adjust to the idea still, and get some feedback from anyone that I can.
Sorry to hear about that, aenea. 
Several years ago a friend/acquaintance of mine from high school was diagnosed with it. It was rough for him at the start (I didn’t keep in touch with him after high school, everything I heard was word of mouth, so I don’t really know any details), but after the diagnosis and since the treatment began, he’s been fine as far as I know. I don’t know specifically how much his lifestyle was altered by it.
Anyway, as I said, I don’t really know much about it, and I don’t know that I could add any help to what’s already here, but if you want I can ask some of my mutual friends with the guy from high school, they could probably fill me in on a lot of the details from his case.
One of my ex boyfriends had Chrones. If I remember correctly he couldn’t eat pizza or popcorn (when we went to the movies he got two packs of gummy bears). He was out of school a lot. And when he came he was either late or exhausted. I don’t know if that was the disease, or just him. I don’t really know to much about it, sorry I’m no help.
A friend of mine has this. He said he’ll write up a little advice that he has, and I’ll post it as soon as I get it.
My best friend’s son had this. I say had because he did have surgery that removed his large intestines and he now has an illeostomy (sp?). He went through 6 years of hell. Diet restrictions, meds, hospitals, etc.
They could only find one doctor in the Raleigh area that was really any help to him, he had one doctor that almost killed him. Finally they found an excellent doctor in Wilmington and he is the one that helped my friend’s son recover completely. He has been diease free now for 3 years. I would like to hook you up with this friend if you’d like. Send me an email if you are interested and I’ll start the process. It’s not something to play with.
Hey aenea
I talked to my brother last night (coincidentally, he called me, and I took the chance to ask him a few things). He goes to a GI specialist, but, according to my brother, medical knowledge on Chrone’s disease is relatively slight. Luckily, my brother also knows eight or ten other people with the disease, and has picked up some trial-and-error insight from them.
[Sidebar: I thought Chrone’s disease was relatively rare; I wonder what the chances are of my brother knowing that many other people with the disease? In fact, there are four other people that graduated from our high school within a few years of my brother that have the disease; these are just the four he knows about. What’re the chances of at least five people out of ~1300 having Chrone’s disease? Hmm.]
Anyway, he said that:
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He’s permanently on medication (the steroids, I think) to control it. His doctor worked with him to set the dose at the minimum level required to control the disease (through trial and error dosing). He also told me he wonders if these pills are really all that effective, but he’s unwilling to drop them to find out. Make of that what you will.
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He has no dietary resrictions; however, he stays wary of certain foods, particularly whole grains and dairy products.
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He still has occasional flare-ups; during these times, diary and whole grain foods definately make things worse, and heavily cooked vegatables are good. He also says that during these times, the medication is tricky, because one of the side effects is loose stools (which makes symptoms worse), so he plays around with dosages (don’t think ne’s supposed to, though).
Unlike some other anecdotes above, my brother really didn’t need any major changes to his lifestyle. He just needed to remember to take his pills and to be sensitive to what his body tells him. Hope this helps.