Crohn's Disease/Ulcerative Colitis

Nutrition
46

[quote]bushidobadboy wrote:
Great thread![/quote]

I agree! BTW this it hueyOT. NIce to see you here, bro. I’m really pleased with the turn-out this thread received. I will update this thread later with a bit of my personal learning as I ‘get to know’ Crohn’s/U.C. and how it affects me.

I was doing really well for awhile but just yesterday I felt like I was having another flare-up. I think stress does it to me. As I stated earlier, my initial outbreak and diagnosis occured at an extremely stressful time in my life. I had a falling out with my best friend, I was having money issues trying to pay for the following school semester and my student loan, and I was working around 70-80 hours a week. Also, I was obviously NOT working out and I was eating horrible food, it was fast food for me all the time. A very stressful time in my life, indeed.

Anyways as I was saying, I’ve recently been having some difficulty sleeping, I feel like I have anxiety at night in anticipation of my responsibilities for the next day which winds me up when I should be UNWINDING. I feel like this stress is aggravating my condition and I feel like I will have a flare-up, again. I’ve missed work and school and training due to this condition and it stresses me out even more, kinda like a vicious circle.

To make matters worse, just as I thought my best friend with whom I had a falling out during the summer (an apparently popular T-member who shall remain nameless) was ready and mature enough to reconcile and salvage some shred of the friendship, my friend stabs me in the back again and makes it clear to me that any form of the friendship is beyond repair. Ah well, I realized long ago that this was probably the inevitable conclusion of our relations, but it’s upsetting to me to really accept the finality of it. At the end of the day, it takes TWO people to have a friendship, you can’t have a one-way friendship. It’s like that phrase, ‘respect is a two-way street’. And since the respect in our friendship only goes one-way, I have no choice but to accept its termination. If someone or something only brings negativity to your life, you gotta remove that bullshit from your mind. My health and mental well-being is too important to me to waste on people who aren’t worth my time.

I want to thank people for contributing to this thread and I will update it after I learn more about the disease and after I meet some new specialists. I am seeing another gastroenterologist in Februrary, hopefully he can give me some insight.

Thanks again.

47

[quote]Sergius wrote:
It’s sad but some people go through eight years of med school and are just as ignorant about steroids as them.

[/quote]

Your post made sense until this…you do know that d-bol and corti-steroids like prednisone are totally different right???

48

Didn’t really introduce myself, I’m 6’2" and a scant 145lbs. (135lbs at my lowest, and 165 was my previous “norm”). I’m 29 years old and was diagnosed 1.5 years ago (with a serious flare up about 5 months before that that costed me about 30lbs. in one month!).

The local G.I.'s are mostly surgery hungry, however I live in a health care system that pays the doctors big money for those surgeries! (around $6k for a basic resection!). The G.I. in Calgary, AB (Remo Panancione [sic]) is very good (he works in a research center…that helps a bit) specialist with an open mind (however, he’s not really into alternative treatments).

I will be seeing an infectious deisease specialist as soon as I can make the referral happen.

I have also done the CDSA 2.0 from what used to be GSL and is now Genova Diagnostics…It didn’t show anything really out of the ordinary :frowning:
however, they do not look for all microscopic bacteria! (i.e. MAP)

Good to see this thread is still open…just to let everyone know, it seems as though Crohn’s disease is over 90% chance that it’s caused by M.A.P.! There is a doctor in Australia who is developing a vaccine that will be in North America in 2008! This vaccine has already been approved for testing by the FDA in the USA! Way to go doc!

In the meantime, as far as a probiotic goes, primadopholous optima is quite good, it is enteric coated, and room temp. safe! It is far superior to Jordan Rubins stuff. Yes, he seems to have knocked his Crohn’s into remission after taking a mysterious dirt like substance from an old man…but that has nothing to do with his products…at least not for me!

If you want to stomp out diarrhea, try carrot juice.

If you want to do in the bacteria, I have already tried a really strong cleanse kit by New Roots Herbal, however, it has not gotten rid of the Crohn’s, it has however given me more energy, and restored some color back into my complexion (and made me pass some nasty looking nasties into the crapper).

I have also tried Mangosteen juice with no effects noticed at double the recommended dosage (until the entire bottle was finished off big bottle to be taking with no effects!).

I am now going to try a few different approaches with my Crohn’s infestation issue…

Carrot juice for the diarrhea, I will be also trying: grapefruit seed (at the recommended theraputic dosage of 600mg/day); berbine (several grams a day); and citrus seed extract (600-1600mg/day…may cause diarrhea) or grapefruit seed extract (dosage unsure at this time).

Those approaches will be used separately as I do not want to convolute the results (who wants to be taking all those things at once? besides my Crohn’s isn’t bad enough to yield immediate surgery…although the local G.I. guys/surgery happy bad guys love to tell me that it is…I’ve seen the CT scans and the colonoscopies…they’re so dumb sometimes…think I’m that nieve).

50

Help is on the way in the form of TYSABRI.

The FDA will host an Advisory Committee meetings shortly, and then will provide an approval or non-approval shortly. See the article below. Also, the reference to a rare disease, PML, is over exaggerated; there are currently over 12,000 patients on TYSABRI for MS who have not had any sign of PML:

FDA to Weigh Tysabri for Crohn’s Disease
Tuesday May 29, 2:39 pm ET
By Shawn Pogatchnik, Associated Press Writer
U.S. Regulators to Consider Use of Tysabri Drug for Victims of Crohn’s Disease

DUBLIN, Ireland (AP) – Elan Corp. PLC and Biogen Idec Inc., the makers of Tysabri, announced Tuesday that U.S. regulators would soon review the drug for its possible use by sufferers of the gastrointestinal ailment Crohn’s disease.

Both companies said two review committees of the U.S. Food and Drug Administration would jointly consider on July 31 whether to permit sale of Tysabri to treat Crohn’s, which causes chronic but nonfatal inflammation of the intestines and afflicts 1 million people worldwide.

Clinical trials of Tysabri – which last year was approved for use in the United States and European Union to combat the most advanced cases of multiple sclerosis – have indicated that the drug is effective in preventing inflammatory immune cells from penetrating the wall of the intestine, limiting the damage they can cause.

Both MS and Crohn’s are diseases that cause the immune system to attack the body’s soft tissues, including those that line the intestines and nerves.

Tysabri’s use for MS patients has been heavily restricted because of its link to a rare, usually fatal disease of the central nervous system called progressive multifocal leukoencephalopathy, or PML. Both companies temporarily withdrew the drug from sale in February 2005 after three patients in clinical trials contracted PML; two, including a Crohn’s sufferer, died.

Elan of Dublin, Ireland, and Biogen Idec of Cambridge, Mass., applied in December for FDA approval of Tysabri for Crohn’s sufferers.

The disease most commonly develops in people in their teens and 20s and has no cure. It can cause diarrhea, abdominal cramps, fever and bowel obstructions, leading to lost appetite and decreased weight.

The leading current treatment for Crohn’s is Remicade, manufactured by Johnson & Johnson. Analysts say, if given FDA approval, Tysabri probably would be prescribed only to those Crohn’s sufferers who were not responding to treatment from longer-established, lower-risk drugs.

51

man, I can hardly wait for stem cell therapy to become main stream and cost effective…it could get rid of all the worlds ills…in the meantime, I will continue to use supplements and the natural stuff I know to keep me away from the meds and surgery (probiotics, low carb diet, glutamine, etc.)

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HueyOT,

Sorry to read about your diagnosis – though it seems that it’s not definite, yet, as to whether you have UC or Chron’s.

I did a quick google on “ulcerative collitis vs. chron’s disease” and turned up the following:

There are plenty more that show up with that search.

I do have one avenue for you to check out, with the following caveats: 1)I’ve only read about it 2)the info I read comes from a biased (i.e. financially interested) source 3)I’ve got no experience with Crohn’s or UC 4)I’ve never taken any of the following products:

The guy who started the Garden of Life supplement company suffered from Chron’s Disease. According to a book he wrote (called something like Physician, Heal Thyself), he was in serious trouble, having wasted away to about 100 pounds. Pics in the book (which was given to me – no, I don’t weigh 100 pounds) make him look like he’s 3/4 of the way through a Nazi concentration camp. After seeing specialists all over the world and trying all sorts of therapies with little or no success, he came upon some soil-based bacteria – abundant, apparently, in the diets of our forefathers but absent in or supermarket-washed diets. Gained back all the weight, got really healthy, started a supplement company, made millions of dollars and moved to Florida.

Here’s a link to a short version of his story on his company’s website:

http://www.gardenoflifeusa.com/OurTeam/JordanRubin/tabid/708/Default.aspx

Again, I’ve never taken these supps or anything similar. (In fact, my Mom tried some for an unrelated digestive condition w/o noticing positive effects.) And the guy with the heartwarming story is also the guy making millions off of selling these supps. Proper skepticism is in order. What I can say is that, looking at the pics of him in this book, he was in bad, bad shape, whatever the cause. A year or two later, he’s twice as big and obviously healthier. If he in fact suffered from Chron’s disease and it was the cause of his skinny ill-health, something happened to make him a lot better. It may or may not have been these soil-organisms/bacteria he talks about, but the reasoning his lays out in the book seems at least plausible, his story, at least in broad outline, believable.

I don’t want to get anyone’s hopes up only to have them taken in by a snake-oil salesman (not saying this guy is), but, IMO, it is worth looking into. If Surge Workout Fuel can “double your results,” maybe this shit can fix your gut.

In any case, good luck.
-F

53

Duh. I have time to write a long-ass post but not to read through the thread 'til after. Hadn’t noticed this was already mentioned:

[quote]FunkMasterFlex wrote:
I would check out Garden Of Life’s Primal Defense and Perfect foods sups. I had a friend who suffered with Crohn’s and from what i can tell eats pretty normal now while taking his sups. Also i just met a lady at work ( vitamin Shoppe) who uses homemade Kiefer (very similar to Primal defense) to battle with a similar digestive order. Read up on Heal Thyself by Jordan Ruben as another point of reference. Hope that helps.[/quote]

Again, good luck to everyone suffering with these ailments.