PB4, question for you... and everyone!

Hi everyone, I am new here and a mom of a 15 year old boy just diagnosed with Crohn's in mid-June. We have no history of this disorder on either side of the family, so this came as a real shock. It seems many of you are in the same boat, though. Anyway, I am so happy to have found this forum! It really helps to read some of your stories and to know I have a place to come to ask questions.

The docs immediately started my son on Asacol and then followed with about 8 weeks of Prednisone. He just finished the Prednisone last Monday and seems to be doing well. He had a tiny bit of bleeding for about two days, but it seems to have subsided. Maybe this is typical coming off Prednisone? When I called his doc to report the tiny bit of bleeding they said we should "wait and see." Hopefully that is the right advice....

I understand this first year or so will be a total learning experience for us and only time will tell how this disorder (I like that word better than disease) will manifest itself in his body.

One general question. Does anyone know why, when I asked the Crohn's specialist at Children's point blank if this is an autoimmune disease, the doc answered "no?" I believe he stated something like "it doesn't have the traditional markers of a true autoimmune disease." Then either my husband or my son asked another question and we moved on to something else. It left me perplexed, though...

Ironically, I have always been a natural remedy junkie--friends affectionately call me "the witch doctor." This leads me to a question...okay...maybe more than one... PB4, I've been lurking here for a while and understand you are the resident "natural" expert. I read in a previous post that you have had success taking a fiber supplement. Is this a one of the major brands? I ask because my mom has had issues with IBS and we discovered a lesser known fiber supplement (available at health food stores only, I believe) that worked wonders for her. The information I had found regarding IBS and fiber supplements was that the ratio of soluble vs. insoluble fiber was critical, (Can't remember what that ratio is, but I can check) and that ratio is not commonly found in the major brands. Anyway, just curious what brand is working for you. Can we post brand names here?????

Besides Asacol, E is currently taking a probiotic, omega 3s, a multi vitamin, iron (he has been anemic), vitamin C, and digestive enzymes. Does anyone have anything else in the "natural" category to recommend that has been good for them?

I have many more questions but I see I've gotten a bit long winded! Thank you everyone for any advice! I pray every day for a cure for Crohn's.

EMom

The advice on the minimal bleeding is sound. Some periodic bleeding is common in Crihn's; it's the steady, heavy bleeding that needs prompt evaluation.

On the autoimmune front, there's been debate about that for years. Most folks (including doctors who treat it) believe that Crohn's is a runaway immune response to one or more stimuli (bacteria in the gut?) that is probably made more likely by a genetic susceptibility. So in that sense it is autoimmune, though not by the strictest definition. The bottom line is that debating cause is futile once you have it; the task then is to treat it most effectively so as to minimize symptoms and damage over time.

On the natural remedy front, there are some probiotics and other supplements that seem to help some people, but I for one believe it is a mistake to try to treat Crohn's largely or exclusively with dietary supplements and other "natural" remedies. medical therapy for Crohn's is so individual for every patient, there's no "one size fits all" prescription.

Plus one has to wonder about anything not approved by the FDA. I took aloe vera for a year and saw no improvement in fact I got worse. granted I was on presciption meds at this time as well. I bled everyday for the better part of 6 years now (dx little over 2 years now). I am suprised that your teenager isn't resistant to taking all of that stuff. I would see if they could do a blood check to see if he is absorbing the iron, and also to check b-12 and vit d levels in his blood.

In all honesty I think most of us manifast this disease in different ways and no two people are the exactly the same so like mike states there is no way that one drug works for all of us.

I also want to add a word of caution about the SCD.  It has caused severe and life threating bleeding as well.  Plus there is no such thing as "healing" or "curing" crohns.  The appropriate statement (and this is also one check for legitimacy) is that it has caused remission.

Thank you, everyone! I really appreciate your help! I'll be checking out everything you recommended. We have his blood iron levels checked fairly regularly, but I will ask for vit. B & D levels in the future.

Yes, my son is taking a probiotic. Anyone heard of Theralac (contains 5 probiotic and 2 prebiotics, also must be refrigerated)? It seems to be a good one, but there may be better ones out there. I'm open to change!

Thanks again, everyone!