PB4, question for you... and everyone!

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Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 8/22/2007 5:58 AM (GMT -7)   
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.


Regular Member

Date Joined Jul 2007
Total Posts : 53
   Posted 8/22/2007 6:45 AM (GMT -7)   
I have heard that "George's Aloe Vera" is supposed to be good for the gut but I have yet to try it.
Dx'd 5/07, pred, asacol, azasan
missing chocolate...

Veteran Member

Date Joined Mar 2006
Total Posts : 1169
   Posted 8/22/2007 6:55 AM (GMT -7)   

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.

Veteran Member

Date Joined Aug 2007
Total Posts : 2198
   Posted 8/22/2007 7:06 AM (GMT -7)   
L-glutamine is good for gut healing and controlling diarrhea. You may also want to look into dietary changes. The Specific Carbohydrate Diet has a very good track record for healing Crohn's. www.scdiet.org
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 8/22/2007 7:13 AM (GMT -7)   
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.


Forum Moderator 
I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...

Post Edited (MMMNAVY) : 8/22/2007 8:22:23 AM (GMT-6)

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 8/22/2007 10:09 AM (GMT -7)   
Hi EMom :)

Thanks for the compliment!!!! Yup, I'm a pooh expert mainly because it's been 16 going on 17 yrs of it, LOL!

I use Prodiem stool bulker (not to get confused with prodiem laxative, which is a small round dark brown pill), the Prodiem stool bulker is similar to metamucil, my GI recommended I use it daily for the rest of my life, it's been just over 4 yrs now and has given me alot of relief with many symptoms;

no more gas (very little anyways compared to before), stopped all my bloating, mucus and cut way back on my frequency so instead of going many times a day usually with small deposits, I go less times with larger deposits.

It's important to start with a small amount since initially for many (even healthy people) it can actually cause gas and bloat, but this is normal until your system adjusts to it then it goes away, that's why it's so important to stick with it because the end result is very much worth it (took my system 3 months), plenty of water must be taken with any fibre supplement and only increase if necessary and very slowly.

Yes, you can mention brand names here, thank goodness for that.

Do you have your son taking probiotics? I'm an avid believer in probiotics, they've done me wonders in combination with the fibre therapy...I use one called Primadophilus Reuteri made by natures way, it's affordable, has guaranteed intestinal release and ony one/day is needed compared to many that require 4/day or more...it must be kept cold, that's the only downfall to this one but it's worth it.
Just to let you know, I became sick with crohns in my early 20's, my mom got sick with UC in her mid 60's AFTER I became sick, so there's just no telling where it'll creep up, but it is genetic.


My bum is broken....there's a big crack down the middle of it!  LOL  :)

Veteran Member

Date Joined Aug 2007
Total Posts : 990
   Posted 8/23/2007 8:28 AM (GMT -7)   
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!

Mother to 15 year old boy just diagnosed in June, 2007. Taking Asacol, just finished Prednisone, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.

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