Crohn's Disease Forum » Your Story » Success Stories » MY supps for MY dis-ease

11-15-2011, 11:28 PM   #1
Senior Member
Join Date: Nov 2011
MY supps for MY dis-ease

Sup, folks? (SEE Probio/fish oil reccomendations, if nothing else) I was diagn in 04 the day I was told I need surgery--the week before I experienced slight persistent ache in lower right qdrnt and slept for nearly a day straight. I had a resection and appendectomy at the ileum. For little over a year, I did what I was told (pentasa, imuran) then began cutting out sugars (NO corn syrup) and tapering the prescripts (over a couple months). The drugs seemed to run me down with no noticable effects on my Crohn's. Mind you, I never had persistent diarhea or pain.

Books, which I don't recommend blindly believing, sparked my endeavors: Jordan Rubin's digestion book(forget name) and Maker's Diet (don't buy ALL this guy's supplements, very expensive) were good, Fallon's Nourishing Traditions, Sugars that Heal, and the Selective Carb Diet Viscious Cycle book helped.

I experimented with tons of probios and fish oils and I use these as my foundation along with raw/fermented/sprouted foods (Ezekial bread with nutbutter/butter/cinnamon/garlic powder daily)--like the paleo diet. No added sugars (other than org. sugar cane juice/turbinado occasionally and I use stevia extract or honey for smoothies regularly), nearly no white refined flour/bread, and no preservative laden foods. I don't drink milk. I rarely eat red meat. I don't willingly eat pork--sometimes eating out I make exceptions for pizza. Chicken mostly. Sardines/salmon often (crown prince). Organic/no rbgh kefir is fine. Occasionally I eat cheeses when out with no prob. At home, I only use raw/unpasteurized organic cheeses if any.

Eat real whole food people, next to nothing boxed. Preservative free, 100% juices are key: carrot(daily), veggie/tomato(daily), most fruits fine (maybe not grape or citrus fruits within hours of eating--personally). Just don't overdo fruits because fructose is sugar and that, imho, feeds bad bacteria. Real food: fresh best, frozen fine, canned (BPA free good) ok. Eat good fats: avocado (even in smoothies), ev coconut oil (straight from spoon or for cooking), ev olive oil (spooned or lower temp cooking), fish oil (at least 3-4 grams a day or around 2500-3000mg of actual Omega 3s a day), whole nutbutters, organic butter. Make hummus, dip veges/grains. Hardboiled eggs are a staple at least two a day in addition to scrambled eggs often. Nutbutter sandwiches on Ezekial are also a daily meal. Learn to grow/use herbs folks. I can handle salads usually, so I make simple dressings (oil, garlic, oregano, ground mustard). I went a couple years grinding and drinking coffee, now I'm limited to yerba mate. Don't combo fruits with starches/refined grain.

I drink around 100oz of reverse osmosis water a day, at least. I work doing mild lifting/walking in a rather stressless/payless mailroom job which gives me at least an hour of brisk/moderate exercise daily.

I MUST EMPHASIZE Mix up the Probios: Jarrow EPS [once daily w/out food (BEST BANG FOR BUCK, in large box at iherb)], Jarrow IBS (once daily w/food), and Jarrow Saccharomyces Boulardii plus MOS (once a week, without food--the potent good sugar causes harder stools, so I might find a standalone Saccharo to take more often). I find 90% of store bought probios do nothing and kefir/yogurt doesn't compare to good probios--I only occasionally eat kefir these days.

Best Fish Oil: ENTERIC-COATED fish oil with highest Omega 3 content like Source Naturals Ultra Potency Fish Oil which has 850mg Omega 3 per pill, I take 4 a day. Whatever brand, get at least 2500-3500mg of actual Omega 3s not just 2500mg of "fish oil". More EPA than DHA.

Other than that, I would explore greens juices(if blending your own, strain out vege fibers but leave fruit fibers), a scoop or two of whey a day(water, whey, banana, cinnamon, chia, stevia: voila) antioxidants (broccoli extract, grapeseed extract etc.), vitamins (multi, 5000 D, Ks, B complex--B12 in sublingual methyl form), minerals (magnesium malate, calcium), cleansing fibers (psyllium, acacia root, bentonite clay--these sparingly), organic whole leaf aloe juice or its good sugar extracts, l-glutamine (build up to 9 grams daily--so im told), occasionally I take herbs from reputable suppliers (ginger, curcumin, boswellia, cats claw, devils claw-this one for joint pain, supposedly), and a quality mushroom complex for seasonal transitions and general immune balance.

Eat prebiotic foods like steamed broccoli and cooked plantains. After all, probios might only work by stimulating your own production of good bacteria; so feed em prebios. Avoid GMOs fight for labeling--GMO corn contains BT bacteria which displaces gut bacteria and GMO soy has been found to kill good bacteria--among other things...justlabelitDOTorg I would also avoid any and all injections--Crohn's is certainly resultant of SOMETHING messing with the immune system. What makes Doctors think Crohnnies have an immune system that can mount a proper response to such intentional autoimmune modulations?

Consider LDN ( ). Keep an eye peeled for CBD products coming to America like Sativex sans the THC. I know what your thinking, but CBD doesn't get people high when isolated, and it's not concentrated in dominant "commercial" strains--so don't bs yourself. JUST RESEARCH CBD and Crohn's--I don't condone THC as a Crohn's therapy or recreation. Or, on the deeper end, some have tried pig whip worms or helminths.
Enteral Nutrition along with an elemental diet seems to put most people into remission after a few weeks( )
And perhaps the most disgusting but possibly effective--fecal transplants ( )

On that note, I had a colonoscopy recently which revealed a handful of colitis like patches but no stricturing. I might pay for a wireless endoscopy this week ($2500before insurance, yikes). And I've been perscribed LDN, but have yet to try it. I feel LDN may help with overall energy and possibly joint pain. After over 5 yrs without "treatment", I experienced a severe arthritic like pain in the sacroilleac/sacral ALA area which lasted 5 days and needed hydro a month ago. Before this, I had taken Extra Strength Tylenol for a couple arthritic episodes in the past (same joint). But that's it, in the last 5 years. Now, that's not to say I wouldn't get an excruciating cramping sensation (subsided by a watery BM) if I went on bad dietary spells (a few times out of nowhere), but that would happen once every three months or so. I believe my symptoms got worse because I drank a bit too much this summer (4-8 bottled pale ales a weekend) and the fall season seems to bring a "flare" of sorts usually (emotional, arthiritic, or digestive).

My heart and prayers go out to those with more systemic Crohn's symptoms. You are not a number (or a percentage for that matter). You are a human being worthy and capable of defying the deified dinosaurs in lab coats. I better quit now.


(P.S.: I'll be updating below with further posts/insights periodically READ THE LINKS)

Last edited by mnsun; 03-02-2012 at 10:46 PM.
11-16-2011, 12:15 AM   #2
Senior Member
Join Date: Oct 2011
Location: Colorado
Wow that was one of the most amazing posts I've read! I pretty much eat like you, nothing GMO or boxed. I need to add some of those things you mentioned. I'd respond more but cannot articulate myself after a brutal day at work.
11-16-2011, 12:12 PM   #3
Jessi's Avatar
Join Date: Jul 2011
Location: Ogden, Utah

My Support Groups:
Wow! Welcome to the forum! You have quite a system! I'm so glad you took the time to share with the rest of us.

I hope the $2500 endo doesn't break your piggy bank. And I really hope you find good news from the scope. Where are you from? I hope you stick around. You'll find loads of support here, and sounds like you're certainly capable of dishing some out, too.

Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
11-16-2011, 04:06 PM   #4
Your Story Forum Monitor
xJillx's Avatar
Join Date: Jan 2011
Location: Pennsylvania

My Support Groups:
Hi and welcome. Thank you for sharing with us. I think you offer some real good advice.

I am very interested in LDN as a treatment option. I hope it works well for you. Keep us posted!

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
12-01-2011, 12:42 AM   #5
Senior Member
Join Date: Nov 2011
No real news to update, I've been putting off the endoscope until I reckon the financial pile (maybe next week, not impressed with my doc--and I'm not taking the damn pentasa peddled--and not sure the results will really mean anything anyway) from my last colonoscopy--they found 4 freakin polyps (all of which were not precancerous or anything) which had to be sent off to lab. Now, I dont know how common that is for a late 20s male, but that still hits close to home.

I've started the LDN, working my way up to 1.5 milligrams over the past week and a half. I'll start the 4.5 regimen on Sunday. I'm pretty pumped, as of now no noticable effects (positive or negative). Maybe a little restlessness before falling asleep. I figure I'll always depend on my probios and fish oil, in the very least. I'm considering finding an andrographis supplement and seeds. I haven't settled on a cost/dose efficient brand, considering at least 1800mg (if i remember correctly) a day is the rda.

See ya.
12-01-2011, 08:38 PM   #6
Join Date: Jul 2011
Location: 30 min train ride to London 2012
You are a human being worthy and capable of defying the deified dinosaurs in lab coats.

The Best sentence i've ever read by a Crohn's patient

Wish you well
12-01-2011, 09:44 PM   #7
Forum Monitor
Mountaingem's Avatar
Join Date: Jan 2010
Location: California

My Support Groups:
Hi mnsun, I really enjoyed the all of the info provided in your post-definitely worth trying, for sure. The polyps the scope found is very common in Crohn's patients, mostly due to inflammation that is unchecked. I myself had them for at least 10 years, with my doctor always removing them. When I was 35 he found two Stage 1 cancerous polyps; he removed them and I took a few rounds of chemo at the hospital, as well as pills at home for 6 months. I'm very fortunate they were found early, and now I go every two years for my scope and have been on Remicade ever since.

Hope my experience doesn't scare you, I just wanted to share it with you so you will not make the same mistake I made of putting off the scope too long.

Best wishes on your LDN treatment, keep us posted!


Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
12-02-2011, 11:01 PM   #8
Senior Member
Join Date: Nov 2011
Hi all. Jesse, thanks for posting the andrographis article. That stuff hasn't received much press, I continually monitor the mainstream Nature/Science/Science News/Discover/American Dietician etc. mags.

I have to correct my previous LDN dosage schedule. I did one week at 1.5mg and am currently doing one week at 3mg. Half way through this week, I noticed waking up around 3 am for 10 minutes or so, a couple of days in a row. I take it around 11pm usually.
12-23-2011, 11:03 PM   #9
Senior Member
Join Date: Nov 2011
It will be 3 weeks, this Sunday, since I started the full 4.5 mg dosage. Still no noticeable changes. I've read after a month, if you don't think it's working, to try and take a double dose daily or toggle the dosage up to 6mg.

Some suggest once in the morning and once at night--furthermore, some say 1.5mg in the morning 4.5mg at night while others say two 4.5mg doses daily.

Then there are comments which lead me to believe the dose should be adjusted to your metabolism. For instance, some up the dosage anywhere from 6mg all the way up to 10mg.

I'm thinking I'll wait a little over a month and go from there. In the meantime, more research. Comments/suggestions welcome...
01-04-2012, 11:37 AM   #10
Senior Member
Join Date: Nov 2011
I would add: diet is probably more important than supplements, as a messed up diet will delete some of the benefits of many supplements.

I've found a SCD Lifestyle podcast that covers the spectrum of IBDs and their respective supplemental/dietary approaches. This is a very good introduction to dietary considerations, not ALL of which I agree with, but still positively enlightening.

Go to, scroll halfway down the page on the right side, and type into the search box: Podcast 29 Leo Galland
01-15-2012, 11:16 PM   #11
Senior Member
Join Date: Nov 2011
Diet is MORE important than medications--FOR ME.

I think doctors are oriented toward surgery and pharma because no one will pay to fund studies which would essentially result in an unpatentable approach to diet--even though this is, in my estimate, the best way to prevent further intestinal damage from Crohn's. I also agree that QUALITY probiotics and, I would add, QUALITY omega 3s are essential and exhibit positive effects in a matter of days/weeks--these products have limited patentability, in terms of unique delivery processes, and certainly don't reap the astronomical profits of modern biologics/prednisone/pentasa.

Doctors go through an intense indoctrination process that doesn't value dietary considerations. It's a herd management approach to human health that will not consider individual sensitivities which cannot be quickly/efficiently measured by modern equipment. Dietary alterations positively/negatively effect health outcomes over the long term, and there are too many uncontrolled variables that won't fit neatly into their sterile paradigm. If only they honored their Hippocratic oath (first do no harm) and listened to his advice: "Let food be thy medicine, and medicine be thy food."

Biologics, Prednisone, and Pentasa, I believe, are far too profitable approaches which result in a short term, but measurable, benefit. For ME, Pentasa was not only uneffective, but it had a nocebo effect--the prospect of remembering to gulp down 5 huge caps 3 times a day for life was psychologically detrimental.

I think the effectiveness of an exclusively dietary Crohn's treatment depends on the severity and locality of the disease. Irregardless, the protocol should be equal parts: diet, supplements, lifestyle changes, exercise, and complementary medications (I'm testing out LDN--six weeks into the 4.5mg dose, I now believe it is working).
I copied this from my reply elsewhere on the site because I feel it is appropriate to the topic of this thread, and I'm too lazy to write this again.
01-22-2012, 01:42 AM   #12
Senior Member
Join Date: Nov 2011
This is another post I made elsewhere which speaks to benefits of enzymes which aren't recognized by most doctors:

Digestive enzyme complexes which contain protease, amylase, pancreatin... may work best with people who have had multiple/extensive resections. For me, they don't SEEM to do much. Generally there are animal based enzymes and vegetable based enzymes--I don't know which are more beneficial, but it seems logical the vegetable based ones originate from more clean sources...

Some fruit based enzymes, like Papain and Bromelain, help scar tissue heal and lower inflammation, especially after surgery, when taken without food. When taken with food, I know Bromelain is supposed to help digest meats--since meats are cooked to high temps and enzymes are dead.

Raw/sprouted foods in general have high enzyme content, which makes digestion easier, among other unrecognized health benefits. This is the best reason to juice your own freshly picked fruits/veges AND DRINK IMMEDIATELY. As opposed to irradiated/microwaved/pasteurized/cooked/dried foods, which make foods harder to digest, generally.

A local 90 yr old nutritionist boasts the healing qualities of taking Pancreatin with hydrolyzed/pre-digested protein. I've been meaning to try this out, though it's expensive and I haven't researched the therapeutic dosage of this protein. Generally, this will boost/balance the immune system. She will talk your ear off how she has helped heal pancreatic cancer patients, while on chemo, in addition to simple immune boosting vitamins.
01-23-2012, 09:40 PM   #13
Senior Member
Join Date: Nov 2011
I've been taking LDN for 7 weeks, at full dosage (4.5mg). I would say 6 weeks in I noticed less of a dependance on taking Probios. So far, I notice my stools are formed and I've only been taking probios once a day, as opposed to relying on 2-3 caps a day.

I feel more confident regardless of the foods I eat; this doesn't mean I'm eating particularly unhealthy, but I can tolerate iceberg lettuce much better, for example. I've actually started introducing coffee on the weekends, over the past 3 weeks. Just the other day I had two cups of coffee in a sitting, with no ill effects. These were freshly ground beans, of course. I usually stick with yerba mate, and still do for the rest of the week--I'm not pushing my luck.

So, if I factor in the introductory phases of 1.5mg (one week) and 3mg dosing (another week), I felt a difference 8 weeks in.

If LDN really manages to keep my Crohn's from progressing, I'll be frickin astounded! Speaking of which, I'll be seeing my wireless cam results soon. I have a feeling I've already managed to keep my Crohn's from progressing since my surgery/diagnosis/tests 7 years ago...
01-25-2012, 08:15 PM   #14
Senior Member
Join Date: Nov 2011

Saw the doc and the cam results. His response was, "This is not typical of Crohn's". There was a minor, I'm talking maybe 1/3 the size of a BB, inflamed area on the wall of the upper portion of the small intestine; if I remember correctly, this was the only inflammation found in the small bowel. Near the resectioned site, at the terminal ileum, there was "normal" scarring but some residue was blocking the cameras view, of f-ing course. In the large intestines, I had a handful of minor white-patched, colitis like areas which I already knew of. Nothing was found in the colon. All in all, it doesn't appear as though my crohn's has progressed since 7 years ago.

The overall impression from the doctor was that he didn't even want to call it crohns, but, of course, to keep me from "relapsing", he was adamant that I start taking pentasa. He started pontificating on whether I had just taken too much NSAIDs growing up which caused the surgery/diagnosis and left patches of inflammation... Obviously, I have crohn's; I really don't get what his deal is, I mean, people with Crohn's go into "remission"--perhaps, not in his care!?

This time when I mentioned I had been prescribed LDN--behind his back at a doc out of town--his comment was, "Well it can't hurt." Well, if it can't hurt, why the hell didn't you just prescribe it?! He essentially, without making any inquiry after my previous lobbying efforts, just dismissed the studies I mentioned. Last time, I showed him on my ipod screen shots of the articles from the Journal of Gastro/Digestive Diseases and Sciences. I told him, this time, that LDN is currently in Phase 3 of the approval process thanks in large part to Crohn's groups funding Penn State's efforts and that there is no money to be made off of a generic; you can drag a deaf, dumb, blind horse to water... So I didn't bother printing the studies, f-him.

In the end, he wants to do a calprotectin test to get an inflammatory score to compare before and after pentasa administration. I'm all for tests, data and documentation (that's the only reason I'm seeing this dunce); I'm not at all for pentasa, at this point. So it looks like I need to get copies of all my records for myself to mull over. The doc briefly said all my other blood tests etc. turned out extremely well, and left it at that (he is way too important to bother explaining). I also need to get my documentation from the thousands of dollars spent on tests after surgery, 7 years ago, to compare. As of now, the doctor himself still hasn't received my original documentation, and he didn't even bother to mention that to me. I am so over dealing with "record release" forms. I've filled them out 3 times at my present clinic, to no avail! Now I have to hound down my original data once more....hopefully just once more.

Anyone have thoughts on calprotectin tests? Prices/accuracy/general thoughts...
03-02-2012, 11:11 PM   #15
Senior Member
Join Date: Nov 2011
I've been on the LDN for 12 weeks now and I'm still pretty much symptom free, intestine-wise. However, I never had much digestive problems before I started it. Anyhow, I do seem to tolerate coffee somewhat better, but I still get reoccuring sacroileac joint pain once a month.

I'm jogging/lifting 4 days out of the week in hopes of staving off said pain--this has also helped boost my energy levels tremendously. It's only been two weeks that I've kept up with this routine. I highly recommend it. I do it immediately after work, and though I feel tired walking in, I feel charged up the rest of the night and following day.

Also, I'm getting a big bottle of L-glutamine and giving the 9 grams-a-day dose a go in hopes of healing the possible "leaky gut" origins of the joint pain.
11-02-2012, 11:25 AM   #16
Senior Member
Join Date: Nov 2011
Been a long time. Really been procrastinating on this follow-up, but there isn't much to say.

I kept jogging/lifting for 9 weeks 3-4 times a week. I was beginning to notice I should cut back to twice a week because I was having more often joint pains as a result of exhaustion, but I quit completely when I got sick. In the end, I had a bout of food poisoning from a local restuarant's special sauce--actually whatever was mixed in the mashed garlic potatoes, I don't eat sauces from restuarants, by and large. I later spoke with a co-worker who immediately responded, "Never eat there." Thats what I get by eating outside my "safe" restuarants. Her sons highschool friends work there and she's heard stories that she wouldn't repeat. A sibling of mine, non-crohnie, was sick for a day or so, also. I, on the other hand, couldn't eat solid foods for about 5 days. Luckily, I had some Garden of Life meal replacement stuff and other supplements, Epicor/colloidal silver/oregano oil, that got me through. My only reprisal was a jab in the local paper's food column. Huge bummer, but I came through just fine--no doctors or bills or antibiotics. From then on, I've played frisbee golf nearly ever day since instead of the gym. I walk pretty briskly for hour each time, so that adds up without wearing me down.

The positive health effects of walking in nature really can't compare to a treadmill or smoggy sidewalk. Varying temperatures, inclines, declines, the soil organisms, the natural light, the verdent immersion--it all just comes together as an indispensible supplement for greater health. However, check yourself for ticks and know when they're out in your area the most. I had a nymph deer tick on me this late spring, but I saw it within a couple hours, carefully pulled the bastard out by the head, doused the area with alcohol, oregano oil, hydrogen peroxide, and eschewed the doxycycline in fear of the devastation on my gut. Tough--maybe stupid--call, but I'm fine.

On the LDN situation, I came to notice it wasn't really doing anything after the first month and a half. I had the initial dreams and noticeable energy rebounds for a while but it seemed to stop. After all, I don't have active symptoms unless I stray from diet/supplements for a few days and the effects of LDN are very subtle. I began to think I wasn't clearing the LDN, and receiving the rebounds. So I began experimenting with 36 hr dosing to metabolize the LDN out of my system over longer periods as suggested by someone on the site. By taking it every other morning and night, I started to notice an effect on the mornings after the nightly doses. The afternoons after the morning doses didn't seem to work for me whatsoever. For a brief time, I then lowered the dose to about 3mg nightly. I wasn't too sure about its effects.

I stayed doing that for a couple weeks until I ordered a liquid probiotic, predominantly L. Paracasei and L. Curvatus, called Living Streams probiotics. I credit this stuff alone with allowing me to drink coffee again!!! I began to notice more of an effect from the LDN immediately and switched back to the 4.5mg in conjunction with my nightly probiotic drops. Since then, I have to say I noticed the LDN working again. I've stayed with this combo ever since: 4.5mg LDN along with two drops of probiotics.

The only noticeable effect for me to know LDN is in fact working is, and I have to say it, morning wood. I also get a bit of a spurt of energy throughout the earlier part of the day. Which only occurs to me now that I haven't experienced it on a regular basis for who knows how long? I'm in my upper twenties, and I often stay up too late and sleep too late before rushing to work, so I never really noticed its absense or thought anything of it. So long as I'm not overly exhausted from days of too little sleep (for me anything less 7.5 hrs), I can rely on this indicator which exhibits LDN is working. So I guess I might have some sort of ?candida? problem which the probiotic fends off and allows me to absorb the LDN better? Maybe I should go with the dissolved or liquid LDN preparation suggested by some doctors to ensure absorption...

In this time, I've also noticed that two things definitely contribute to my joint pain: too little sleep and too little vitamin D. My joint pain almost always hits me on a Thursday-Saturday which coincides with days on end of too little sleep, being later in the work-week. Also, my worst episode was last year in late Sept into Oct. My surgery 7 yrs ago occurred in late Oct. And since I've been more consistent in taking 5,000iu of D3 daily, my joint pains happen less than every month and this fall I haven't had a serious bout. This is definitely positive news for me. I've also been taking more mushroom complex extract this fall, but I can't say for certain what effect this has.

Additionally, I've decided to add papaya enzymes as a mainstay in my supplement arsenal. I highly reccommend people try taking 1-2 with bigger meals. I use a NOW brand product, but there are others. Being GMO conscious I know the bulk of papayas are genetically modified, and I now need to find a natural enzyme source which I've been procrastinating on.

In hindsight there was a lot to say, but I summed it up pretty well. Anyone else notice definite effects that their LDN is working? Do you have experience using both compounded and liquid LDN--if so, do you like the liquid better? Anyone else notice correlations between joint pains and vitamin D/exhaustion? Anyone know of a GMO free papaya enzyme brand to go with? Any questions/observations?

And, NO, I'm not taking Pentasa. I've went off the reservation, again. I haven't done the calprotectin test and really don't care to.
11-02-2012, 12:48 PM   #17
ctrl z
Forum Monitor
ctrl z's Avatar
Join Date: Nov 2011
Location: Pennsylvania

My Support Groups:
I've only done the capsules of 4.5mg. Prior to LDN I've always had vivid dreams so pretty much the only thing that lets me know it's doing anything is the fact that I have energy. Pre-LDN I had to have a lot of rest in order to do anything. Then after whatever big event I was resting for was over, I would have to recover for a few days after. There is none of that going on with me anymore. It's just all energy.

I don't have any super fancy probiotics but once a week I take 5 capsules of the Jarrow-dophilus stuff. Your liquid probiotics sound interesting. I'll look them up.
11-02-2012, 06:00 PM   #18
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Great update! Thanks for taking the time to write that. I'm really glad you're doing well, good for you!

As for papaya, I've got three trees full of the stuff (non GMO of course). How do I make enzymes?
It's good to be back
11-04-2012, 02:53 AM   #19
Join Date: Aug 2012
Location: Lake Elsinore, California
Thanks for such a detailed, thoughtful, educated, and informative post!! after researching years and years and discovering all this, its great that you have taken your disease into your own hands, and seeing great results without resorting to the poisons were on. Im so proud and happy that you are following all these routines and have made it your lifestyle,

i wish i could do that its just so hard for me to implement and do, i mean ive tried for this whole past year, and right now ive lost so much weight finally gaining weight, but now on more meds (entocort and lialda) and possible going on humira which ive put off since diagnosis. i had an mri done which showed no narrowing or strictures or scar tissue just alot of inflammation.

anyways keep it up and hope you get better, and hope ldn works for you!

thanks once again!
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

RX: LDN 4.5
lialda and entocort (started 11/1)
inner-eco coconut kefir
might have to go on humira

krill oil, L-Glutamine, Zyflamend, D3, Curcumin, digestive and systemic enzymes

My blog:
11-04-2012, 02:37 PM   #20
Senior Member
Join Date: Nov 2011
Ctrlz: I would maybe add, as an indication that LDN is still working, once a week I wake up for 5min--which is pretty hard to remember, like a dream--early in the morning from the rebound effect. Though I don't look at the clock, I would guess it happens around 5 AM.

Thanks again for posting about the dixiex CBD supplement. I would recommend people in compassionate states to get this stuff for flare-ups and what not. The site says they can ship it nationally but the DEA lists CBD as being illegal. My guess is that dixie elixirs uses wild varietals, containing 2-3% CBD, so as to claim it is a "hemp" product--like hempseed oil, or hemp protein, or hemp cloth, it should be legal-ish. I don't think industrial hemp can even be grown in our country; it has to all be imported from Canada. Another problem is that most serious conditions need 60-90mg of CBD a day for a therapeutic dose. This is just my preliminary research, and maybe it could be less for crohnnies since CBD is absorbed directly in the small intestines. So it might not be necessary to use enteric piills for the most effective delivery? Those 100mg bottles cost friggin $40. There are mouse studies where colitis-like problems were induced using croton plant compounds--interesting--and subsequently given CBD which demonstrated a protective effect.

As for the fancy probiotic, their site is anything but. To be specific, I use the original Living Streams probiotic formula. However, I assure anyone who has experienced any noticeable effect from quality probiotics previously that these will work doubly so. For some reason, maybe due to the variable locality of active Crohns, good probiotics don't seem to help noticeably for some people; but I wouldn't discount the preventative action of taking good probiotics periodically.

David: I am super jelous that you have papaya growing in your yard. I haven't even tasted a fresh papaya. I guess it's about time I try it. In the fresh food aisles, whole fruits/veges have PLU stickers with numbers on them. Any fresh fruits/veges with a PLU beginning with a number 8 are GMO. In my region pawpaw trees are indigenous, and, though I haven't tasted those either, I need to research those for similar compounds. Supposedly the papain is concentrated in the milky, latexy juice between the inner fruit and the outer skin of an unripe green papaya.

Amien: I've surfed your blog and am glad you're learning and are trying new things, on your own accord. I've dabbled in yoga, breathing techniques, and meditation to great effect--it's just hard to discipline yourself to keep doing it. I haven't tried acupuncture, but I wish I could afford it. There are like two acupuncturists in town and they are not cheap nor that qualified. I think you could possibly reach that same mind/body state with my forementioned endeavors. I think female crohnies really have added complications due to their hormonal fluctuations, and they especially have to seek novel ways to stabilize themselves at such times (dietary/emotionally/physically/herbally etc.). Thanks for the SCD meatloaf recipe, I've been letting a frozen log of ground chicken sit around for too long.
11-28-2012, 10:21 PM   #21
ctrl z
Forum Monitor
ctrl z's Avatar
Join Date: Nov 2011
Location: Pennsylvania

My Support Groups:
As for the fancy probiotic, their site is anything but. To be specific, I use the original Living Streams probiotic formula. However, I assure anyone who has experienced any noticeable effect from quality probiotics previously that these will work doubly so. For some reason, maybe due to the variable locality of active Crohns, good probiotics don't seem to help noticeably for some people; but I wouldn't discount the preventative action of taking good probiotics periodically.
I wanna give this Living Streams probiotic a try. I have a feeling my Jarro-dophilus isn't doing the trick.
11-30-2012, 11:49 AM   #22
Senior Member
Join Date: Nov 2011
I like that formula for a few unique reasons: the liquid seems to work on an empty or full stomach; the combination of dominant strains seems unique; if the small bottle proves to work for you, the larger bottles become steeply discounted; I'm not sure but it MIGHT be possible to culture this stuff yourself after more research...

For full disclosure, I have a couple observations after trying this stuff off and on over the past few years: you may have to up your dose slightly a couple months into using it (maybe, like, up to 5-7 drops-but no more; I say this because I used it for over a year before and I maxed out at 7 drops twice a day before moving on.); I can't prove it, but this stuff might work so well that you should ween yourself off of it if you stop, because the last time I stopped using it, shortly thereafter I got the first wart in my entire life--maybe coincidence, maybe not. No other minor disclaimers or negatives, and I only mention these to fully inform people to think for themselves.

Anyhow, I've tried well over 15 different brands, and this stuff takes the crown.
12-05-2012, 04:16 PM   #23
Senior Member
Join Date: Nov 2011
I asked dixiex for further info, thought I'd share:
My Question:I was interested until I realized most serious conditions require about 90mg of CBD a day. Though, I would like to maybe try it once.

Can you really ship this stuff across state lines without the receiver getting hassled? I've seen DEA guidelines stating CBD is schedule 1?

Answer:Thank you for your Dixie X inquiry. Our Wellness Products are being sold as food supplements, not medicine. Many of our customers find that using the standard serving size of 15 drops twice a day to be a useful addition to their diet. Although many people are working with their doctors to use these product to achieve specific health and wellness goals use much more, it seems that these people use the products for at least 3 months to achieve those goals.

Dixie X products are made from Hemp, not marijuana and are completely legal. We ship via the US Postal service. The USPS rep has been in our offices to set up the interface between the online shopping cart and the shipping system.

Just to let you know, we are currently making a shift with our language and marketing from "Dixie X" to "Dixie Botanicals" to better reflect the products natural ingredients and processes. The lables and all marketing will go from black with the glowing "X" to green with leaves.
02-28-2013, 05:30 PM   #24
Senior Member
Join Date: Nov 2011
Here's a New England Journal of Medicine study reiterating my ENTERIC COATED, about 3 gram daily dose,rantings on fish oil:

Versus placebo, this accounts for a two fold + increase in sustained remission rates: 26% vs. 59%. However, they do mention that a significant minority do experience side effects diarrhea, halitosis, heartburn, flatulence, and stop taking it. Not sure, but better brands may limit such problems.
10-22-2014, 11:26 PM   #25
Senior Member
Join Date: Nov 2011
Pain in the...
After a couple years of taking many supplements, specifically to remedy my worsening SI joint, I've finally narrowed it down to a few factors: 5,000 iu D3 daily, 1-2 grams Black Cumin Seed, and 8 hours of sleep daily. The Black Cumin seed oil was the missing link for me which I discovered a few months ago.

I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and when taken within 3 hours of LDN). If you do research on Black Cumin Seed oil and IBD, or BCS oil's scientific botanical name which isn't actually related to cumin spice at all, you will find that this stuff works locally on the gut's opiate/endorphin system--kinda sorta related to LDN's rebound effect. However, this means you do not want to mix LDN and BCS oil or you will feel nausea. However, while taking BCS oil, I now can have coffee like its water and I no longer am dependent on quality probiotics for solid BMs--this is a significant indicator for me since I've depended on them for 7+ years.

It is a 500 mg black cumin seed extract, called Thymocid, which I take in a supplement by Life Extension called Black Cumin Seed Oil. I previously tried their product with curcumin mixed in, but the single supplement works just as well. I haven't tried any other brands, but this can be found reasonably priced, around $15 per month if taking 2 a day, online at some mega-warehouse websites.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa (or maybe Asascol) daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil daily, I don't get my si joint pain. I've been upping my dose occasionally (to 1.5 or 2 grams) if I go days without reaching my 8 hour per night sleep goal and start feeling joint issues arise--I am a hopeless procrastinator when it comes to getting to sleep at a decent time.

Do a search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article...

Please let me/others know if you try this. It might take a couple weeks for the oil to work, maybe not. I didn't take it daily until I gradually noticed the days I didn't take it, due to aforementioned effects. This is actually very worth trying in my personal experience.

Nigella sativa (Black Cumin) Seed Extract Alleviates Symptoms of Allergic Diarrhea in Mice, Involving Opioid Receptors Swantje C. Duncker, David Philippe, Christine Martin-Paschoud, Mireille Moser, Annick Mercenier, Sophie NuttenResearch Article | published 29 Jun 2012 | PLOS ONE 10.1371/journal.pone.0039841

As always, do research whether this may or may not interact with other drugs/supplements you are taking, LDN particularly.
"Immunomodulatory and therapeutic properties of the Nigella sativa L. seed"
International Immunopharmacology
Volume 5, Issues 13–14, December 2005, Pages 1749–1770

Thymoquinone seems to be the most studied component of Nigella Sativa for its effects on ulcers, liver damage, antimicrobial effects, immunomodulating, cardiovascular, pain blocking, and antioxidant effects... If you type into thymoquinone and any of the above medicinal effects, you will get many results.

Crohn's Disease Forum » Your Story » Success Stories » MY supps for MY dis-ease
Thread Tools

All times are GMT -5. The time now is 02:03 AM.
Copyright 2006-2017