# New to forum - treating my crohn's holistically



## heatherw

*new to forum - treating my crohn's holistically*

hello, all - my name is heather and I am a 31 yr old female with crohn’s. frustrated with conventional IBD medicines and treatments that for me were ineffectual, i recently made the decision to take a holistic, natural approach to treating my disease.  i hope to find others through this forum that are interested in such an approach and who are willing to share their experience with and knowledge about holistic treatments for colitis/crohn’s.  below is my story:

my struggle with IBD began at an early age, but i suffered through adolescence and early adulthood undiagnosed. early on, i was told by many doctors that i simply had an irritable bowel, and just needed more fiber and roughage in my diet (which I later discovered is the worst advice for someone with IBD).  i increased the amount of fiber and whole grains in my diet, but this seemed to only make matters worse.  in my teens and twenties i wrestled with the psychological ramifications of being in constant pain, and my doctors focused on my depression and social anxiety - completely ignoring the possibility that my psychological issues were related to what was going on in my gut.  i managed through college and into my late twenties on antidepressants, lots of pain relievers and a strong dose of denial, but became extremely ill shortly after starting graduate school.  my diarrhea, fatigue and abdominal cramping had become increasingly worse, and I was losing weight at an astounding rate.  i chalked it up to an inability to deal with the extreme stresses of going back to school and the possibility that i contracted some sort of parasite or bacterial infection while studying abroad.  however, my doctors could find no parasite or bacterial infection, and as usual could offer no explanation for why I felt so terrible physically, and psychologically out of control.  i reverted back to ignoring what was going on with my body until i collapsed on a public train in the summer of 2007.  

completely dehydrated and emaciated, i was rushed to the hospital. the bright point of this event was that while at the hospital, i was finally treated by a doctor who was familiar with IBD.  she referred me to a reputable GI doctor, who immediately did a colonoscopy and discovered ulceration in nearly every part of my colon. he promptly began aggressively treating me for ulcerative colitis (and possible crohn’s) with a heavy cocktail of high-dose prednisone, asacol and flagyl. for a few months, i felt significant improvement - i regained the 15 lbs i had lost in the prior months, i felt much more energetic, and i had a lot less pain in my abdomen.  but then, the weight gain got out of control and i started to experience a multitude of very unpleasant side-effects, eventually having a severe allergic reaction to the prednisone. 

over the next few years, i tried several other conventional IBD medicines, and GI doctors, in hopes of finding the right pill or combination that i could tolerate.  in 2010, after seeing little improvement with mesalamine, corticosteroid, and antibiotic therapies, my GI doctor urged me to consider mercaptopurine (6MP) or humira.  in researching these drugs, i learned that they were quite toxic and could have extreme side effects, including bone marrow toxicity and lymphoma. for me, the risk did not seem worth it - why treat a debilitating disease with a drug that could potentially leave me with another more life-threatening one?  i simply could not accept that there was not an alternate, safer way to treat this disease.  part in reaction to my negative experience with conventional medicine, but more so influenced by my growing suspicion that the increasing prevalence of auto-immune diseases is linked to the toxicity of our environment and the poor quality of food that we put into our bodies, I resolved to take a holistic approach to my treatment.

within a few minutes of combing the internet for alternative colitis/crohn’s treatments, I came across matt herod’s specific carbohydrate diet website.  the diet, promulgated by elaine gottschall, author of “breakig the vicious cycle”, is based on the understanding that people with IBD cannot process the complex carbohydrates and sugars that make up much of our contemporary diet, and eliminates them completely.  essentially, in people with IBD, an imbalance of microbial flora in the gut (the cause of which has many theories) leads to an overgrowth of harmful microbes whose toxic by-products of fermenting the carbohydrates and complex sugars that their body cannot digest, damages enzymes on the surface of the intestine, disrupting digestion and absorption of carbohydrates.  this damage to the intestinal lining provokes an excessive production of protective mucous, which further inhibits digestion and absorption – and this is the vicious cycle.  with this newfound understanding of what was occurring in my gut, the rationale behind the specific carbohydrate diet made a lot of sense to me, and I immediately went out and purchased elaine’s book to learn more.  in a few short hours, i had devoured breaking the vicious cycle, and now had what seemed to me a very sound, scientifically based explanation for my crohn’s symptoms and a reasonable way to approach treatment of my disease through dietary modification, without toxic medications.  

i have been following the specific carbohydrate diet for 11 months now and have seen significant improvement in my condition. my abdominal pain in nearly non-existent, my diarrhea is much less frequent, and my energy level seems to be returning.  however, following the diet is a quite a process, and it isn’t always easy to deal with so many food restrictions.  i am far from feeling normal, but i daresay that this approach has given me hope for one day leading a pain-free, productive life again without the need for surgery (which almost all GI doctors will tell you is inevitable).  and, combining the SCD diet with daily yoga practice has really helped me to feel like I have gain some control over both the physical and psychological aspects of this disease.  although I am much improved, some days are still a bit of a struggle, and I hope to connect with others in the forum who are treating their colitis/crohn’s holistically so that we may help each other learn more about non-conventional strategies for dealing with this disease.


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## chrisnsteph1022

Lots of people have success with the SCD. I recently started seeing a holistic/integrated doctor, in hopes of getting into remission and getting off some of these meds (which aren't working anyway). He put me on an elimination diet (no dairy, gluten, soy, corn, sugar) for 3 weeks, then I'll add each item back and see if I react. Of course, we were assuming I would see improvement in symptoms in that 3 weeks. I'm starting week 3 with no improvement yet, so I'm not sure what the plan will be when I go back next week. He also put me on some supplements.


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## stratford

Just wanted to wish you success with your approach to treating Crohn's.

When i decided to try a natural approach 12 months ago i came across loads of positive & negative information online & on forums.
Over the years i'd used Prednisoline,Methotrexate,6mp,Imuran(Azathioprine),Asacol etc.
Steroids always calmed down the Crohn's but gave me side affects which made me stop taking them.None of the other drugs gave me long term remission.

I made a list of various natural treatments and decided to give them a try.
IMO - you will be the only person who understands if a non FDA natural product works well for you.
I attended a local meeting of Crohns's/Colitis patients a few weeks ago.I found people very sceptical(which i understand) but i've had my best year ever since diagnosis.
Thankfully i am now in remission & i don't take prescription drugs anymore.

Good Luck


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## xJillx

Hi Heather and welcome!  I am glad to hear you are feeling an improvement by following the SCD.  I have done some light research on it, and boy, it must be so challenging to follow!  Are you comfortable eating out?  What's your go to meal if you're eating outside your home?  I wish I could have the diligence to follow the diet; I give you credit.

Are you taking any traditional medication at the time?  Do you have a GI monitoring your  progress?

I hope you continue to improve - Good luck!


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## heatherw

*stratford* - thanks for the encouragement.  would you be open to sharing some of the natural treatments you've tried, and what has worked for you to attain remission? also, i too have come up against lots of skepticism (and even strong opposition) when bringing up holisitc/natural treatment approaches at local support groups - even in one of the most liberal-minded cities in the US! but i'm sticking with a holistic approach - not only because i've had the most success with it in terms of seeing improvement in my condition, but also because it makes me feel like i am in control of my disease, not the drug companies.

*chrisnstep1022* - i think it's great that you're seeing a holistic doc. i am a strong believer  in treating the whole person, not just the symptom, and also in the fact that the physical aspects of this disease cannot be separated from the psychological/emotional ones.  if you haven't already done so, i urge you to look into the SCD diet or GAPS diet, and consider the science behind them.  after reading "breaking the vicious cycle" and "gut and psychology syndrome" i was convinced that just eating gluten-free was not enough - i had to eliminate all carbs and sugars in order to start healing my gut.

*xJillx* - thanks for the warm welcome! the SCD diet was indeed quite challenging at first, but i am now rather comfortable with it - it gets easier as you go along, as you learn to plan out meals, make staple items in advance, and are able to eat a greater range of foods. for the first few months i did not eat out at all, but now that i am more familiar with what my restrictions are and can eat raw foods (at first it was only cooked veggies & fruits), i can usually find something on any menu.  it does help that i live in new york city, where many of the restaurants focus on gluten-free, organic, whole foods.  eating out gets a bit trickier in other cities (especially with chain restaurants where almost all the food is pre-made), but you can get a salad (hold the dressing) or simply grilled chicken breast almost anywhere - it may not be a gourmet meal, but at least you still get to go out and socialize with friends and family!  i also always carry around a few snacks in my bag for the rare situation when i cannot find anything on a menu that works for me.

since i started the SCD diet i have been completely free of all conventional medications, although i do take a strong probiotic, VSL#3, and a good regiment of vitamin and mineral supplements.  i do have a good GI doctor - she is somewhat skeptical of the diet, but respects my decision. she carefully monitors my blood work, performs annual colonoscopies, and has actually been very helpful in assisting me with finding the right probiotic.

also, i'm very curious about your crohn's diagnosis being retracted this past october - would you mind sharing the circumstances of that retraction? i ask, because my sister was diagnosed with crohn's, then her doctor similarly retracted the diagnosis and told her she had RA. after little success with RA medications, she went to another GI who reconfirmed that it was indeed crohn's.  in short - this in an extremely difficult disease to diagnose, so i do hope that if you have not done so already, you will seek out a second opinion on your diagnosis. i suffered through years of not knowing what was wrong with my body, and although it was difficult to hear that i would have to struggle with a life-long disease, in a weird way it was a great relief to at least know what i was dealing with!


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## xJillx

I often stick to grilled chicken breast when eating out, as well.  It's always a safe choice!  I really wish I could summon the strength to do the SCD diet.  From what I read, it does seem to work well for many.

How long have you been taking VSL#3?  My GI suggested the same probiotic, but she forgot to write the script, and I never pursued it further.  

Ah, my story has been a rollercoaster.  You can read about my diagnosis retraction  here.  But don't worry, I know it can be tough to get a diagnosis; this forum has taught me that.  I am not taking a back seat to my health by any means.  I have a GI appointment in January, and based on how that goes, I may seek another opinion.  Thank you for your encouragement.


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## stephanied

*Papaya Enzyme*

Gosh heather we have the SAME story i started presenting crohns at 13 and was misdiagnosed several times so i swept my problems under the rug not only because the doctors were not helping me but also because its not something you want to face at a young age. Im 21 now and was diagnosed just two months ago. I am on remicade and prednisone (40mg) and i just finished a round of flagyl. I was forced to try a GI when i got a bowel obstruction so considering how bad i was just two month ago i am much better but it is a FAR cry from normal. i want off Prednisone desperately. I was given Zofran and Phenergan for my nausea but i work two jobs and have a three year old i simply cant function on those medications im tired and dizzy so i tried holistics for that and i found Papaya Enzyme THEY ARE AMAZING i chew 4 when i wake up and again at lunch and then if i have a problem i chew more they help with heart burn, and the nausea. Thats all i know so far but good luck!


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## heatherw

*xJillx* - i've been taking the VSL#3 for a little under 6 months now.  i had trouble eating enough of the SCD yogurt every day (i've tried numerous recipe modifications, but it's still not the same consistency as regular yogurt, and requires a lot of honey or fruit to combat the sour taste), so the probiotic made a lot of sense for me. at first, i took the dosage recommended by my doctor - 4 capsules (450 billion live bacteria) - but this caused me a lot of bloating and gas.  since the SCD diet does not give much guidance on using probiotics (it advises only using SCD yogurt, but i think this has a lot to do with the fact that probiotics were not nearly advanced or specialized at the time the book was written, as they are now), i consulted the GAPS diet, which is very similar. it mentions that probiotics should be introduced slowly to avoid "die-off" symptoms. i backed off to one capsule, and now am up to 2 with no ill-effects. my husband's sister, who has been managing her crohn's for over a decade now, recently introduced me to another probiotic, Bio-K+. she swears by it, especially during severe flares.  so, that's one to consider as well. they have a great website: biokplus.com.

i'm so glad to hear that you are actively pursuing a diagnosis and a GI doctor that you're comfortable with (that's so important!) - i hope that you are able to find some answers soon!


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## heatherw

*stephanied* - sadly, many of us seem to have gone years without being diagnosed, and unfortunately as adults now have to deal with not only with managing the physical aspects of this disease, but all of the psychological damage caused by unsympathetic and disbelieving doctors, and sometimes even friends and family. i was a confident, happy, peaceful young child, and i'm sure that no one - least of all myself - would have anticipated that i would be dealing with anger management, depression, and self-esteem issues at this point in my life!

i'm glad to hear that the papaya enzyme is working for you - it also helped me a great deal when i was still on the meds prior to starting the SCD diet.  and, i think that if you want off the meds, you should really look into the SCD or GAPS diets. in researching those diets i learned about how the microbial imbalance in my gut was linked to how out of control i felt emotionally - the toxins in the gut can enter the bloodstream and wreak havoc on the brain and psyche. since i've been on the SCD diet, i feel significantly more clear-headed and in control of my emotions. and, although i do not yet have children of my own (hopefully some day soon!), i can imagine that being in control mentally would make it a whole lot easier to address a child's needs.

good luck!


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## stratford

heatherw

My list;

SCD Diet (tried 4 years ago)
Primal Defense Probiotics
VSL 3 Probiotics
Slippery elm
Cats Claw
L Glutamine
Aloe Juice
AMP

During the time i spent reading about these different natural products, with all of them i found,positive & negative posts on the net.

IMO finding a natural product to help is the same as trying all the different drugs the Dr's give us.What may work for one may not work for somebody else.

I hope you find something which can help you.


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## Jim Gonsler

*Treating My Crohn's Holistically*

Heather,

I was fascinated by your experience with doctors and their erroneous recommendations for treating your IBD...which resulted in you deciding to take responsiblity for your own health and well being and trying holistic or natural alternatives, instead of toxic perscription drugs.  Outside of the fact that I am much older than you (61) and suffer from Crohn's disease not IBD, our stories are almost identical.   I too experienced the same frustrations and despressions growing up, resulting from the doctors, who had no idea what this disease was, that was effectively killing me,  nor how to effectively treat it.  Ultimately, after years of being in and out of hospitals, being poked and probed like a lab rat, and my weight dropping from 140 lbs to 80 lbs, I too was sent by my doctor to head shrinkers who told me my stomach problems were the result of the emotional issues in my head stremming from being a teenager, and I had to just deal with it.   Finally after years of suffering as result of my doctors failure to correctly diagnose my Crohn's problem, I nearly died from a 100% blockage of my intestines near the ileum, causing a complete perforation...spilling undigested food throughout my body.  Luckily, I didn't die from the resulting infection it caused (miraculously), and the emergency surgery I received was a complete success, (thanks to the surgeon's skills). I also think the Good Lord had a lot to do with my surviving as well...probably most of it.   Unfortunately, as a side effect, I lost most of my intestines from the severity of the surgery  Anyway, I was on some drugs for a while, including Azulfidine and Asacol, which I have subsequently weened myself off from for the same reasons you have...the toxic side effects and the risk of damage to other organs.  I have found that Aloe works well and a powerful antioxidant I discovered and also been using (for a year), that is 50 times the strength of vitamin D and 20 times more powerful than Vitamin C.  I also have had to take B-12 injections the past 40+ years.  IBD and Crohn's have nothing to do with infection but everything to do with inflammation which is the result of having an autoimmune disease (the bodies tendancy to destroy itself from within).  These natural remedies effectively control the inflammation and actually enhance you bodies own natural immune system as well.  I also incorporated a regular exercise schedule, , that seems to help a lot.  Anyway, thanks for the inspiration of your thread.  I hope I have helped you a little as well, and others who may be looking in.


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## David

Hi Heather and welcome 

1.  Have you read this thread?

2.  Which of your vitamin and mineral levels have you had tested?  And were you low in any?

3.  Any thoughts on us creating a "Holistic" treatment subforum?  If you're planning to interact here a lot, I could run the idea by staff here so it would be easier for you and other people following the holistic route to interact.

All my best to you


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## QueenGothel

After a discussion with my doctor he told me there are 1000+ parasites and modern medicine can only detect less than 50 of them.  It is very possible that parasites can invade and cause flares and the tests won't find them.  I am now trying to alkaline my daughter and remove all acidic so we can flush this out.  Also am giving a vibropathic called Protozoa, which is supposed to flush it out. It is supposed to take 3 months.  PH is vital to controlling the parasite and the UC according to the parasite scientist I spoke with.  Hoping we can control this and remove the symptoms.


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## mnsun

Myreinhard:A friend of mine mentioned a supposed anti-parasite herb that some people apparently use 2x a year, as a "cleanse" of sorts.  He got a NOW product and it requires two bottles to complete.  It's called wormwood and this brand mixes in cloves to mask the taste.  Some people's descriptions of their experience include crapping worms and feeling things crawling under their skin--however outdoorsy/uncleanly, exagerated or paranoid these people are, I don't know.  Though, there are many other reviews of people who SEEM to benefit from it.  After he takes the stuff and survives, I'm considering it.

Heather: How much boswellia do you take and what brand?  Do you feel it has a noticeable effect immediately?  I've tried taking 500mg NOW Boswellia for a month or two and I didn't have any intestinal symptoms in that time--though I didn't before taking this and didn't after quitting it either.  However, I did experience my arthritic symptoms while taking boswellia for 3 weeks or so.

Stratford: How much l-glutamine and cats claw do you take?  Have you taken these for longer than a few months?


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## rdsoxfan

i did the SCD and had good results for a couple of months. I started a little late with it though and still needed surgery which I just had. Once I am off my crappy surgery diet, I play to return to the SCD. I am also going to incorporate daily juicing in the morning. This will allow me to consume large amounts of healing green veggies without having to deal with all the fiber. I've read a lot about the healing powers of consuming lots of veggies so it makes sense.


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## David

mnsun said:


> Myreinhard:A friend of mine mentioned a supposed anti-parasite herb that some people apparently use 2x a year, as a "cleanse" of sorts.  He got a NOW product and it requires two bottles to complete.  It's called wormwood and this brand mixes in cloves to mask the taste.  Some people's descriptions of their experience include crapping worms and feeling things crawling under their skin--however outdoorsy/uncleanly, exagerated or paranoid these people are, I don't know.  Though, there are many other reviews of people who SEEM to benefit from it.  After he takes the stuff and survives, I'm considering it.


It's interesting that you bring this up.  The first time my gut started to get REALLY bad was when I was living in the jungles of Hawaii.  I'd go barefoot in the jungle and when I got the gut issues, figured I had parasites.  I got tested three different times at the doctors over the next six months and nothing ever came up so I didn't treat myself for parasites.

Around the time that my gut started to get bad, my then girlfriend who was doing all this with me also started to get a bad gut.  She was MUCH more holistically minded than me back then and took wormwood without ever going to the doctors.  I thought it was "Foo foo".  Well, she's fine and I'm diagnosed with IBD.  I also spent 6 weeks coughing up blood and the doctors never found a reason.  It turns out certain parasites that migrate to the lungs can do this.  Coincidence?  Maybe.  Let's find out.

Point being, I just ordered two bottles of the wormwood.  When I get it I'll create a thread I'll continually update and let you all know if I crap worms


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## rdsoxfan

"Point being, I just ordered two bottles of the wormwood. When I get it I'll create a thread I'll continually update and let you all know if I crap worms"

exciting


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## djsabreblade

Hey Heather,

Just wanted to kinda share some of my ideas..
I know about the SCD diet although the Paleo Diet is better imho..and whatever you do, don't eat any GLUTEN. That is the worst thing you can do with Crohn's. Gluten is very hard to digest, and for me a single crumb will pretty much send me into an allergic reaction, my hands will start tingling and my chest will get tight etc... One of my past doctors told me that there is no scientific evidence to suggest that Crohn's patients cannot digest gluten and dairy products. I switched doctors shortly after lol..xD
For me, I have been drug free since 2008..yes really..although I did have a small bowel resection (2 feet) in early 2011 because of the early days [all my life prior] when I was doing lots of damage to myself with dairy, gluten and the standard Crohn's drugs. Nowadays, I like to think through things in a logical manner. I like to ask myself, why do I want to lower the immune system? If you lower your immune system you are effectively turning off your censors to the larger problem. So...if the root of the problem is not really an ''auto-immune disorder'' then what is it? Hmmm..In my estimation it is a larger problem that something has disrupted our gut bacteria's. Mercury poisoning is a very good suspect for all of this. Untill mainstream science catches up with the fact that we are getting poisoned daily from dental amalgams and various shots/vaccines there will likely never be a cure for Crohn's disease. For me, I am feeling blessed right now. My mother is very knowledable on the effects of mercury and what it can do. Most mainstream dentists say that the dental amalgams do not leak mercury vapors, but all evidence proves to the contrary (see www.iaomt.org for more info on this). The mercury kills off your normal flora, and can be acquired in utero from your mother's dental amalgams! Immunizations also cantain large does of mercury, but the reality the main source of mercury is from silver fillings. In the same way antibiotics will kill off your normal flora making it easier for pathogenic bacteria to take over. Yeast overgrowth in the bowel is very common in people with Crohn's, it is again caused by disruption of normal flora. Refined foods and high sugar diet are really bad, and actually further degrade's your immune system...So...this issue is even more complex than I am explaining it to be, however, this is the basics of the real issues here.  

Edit; My advice is also get all your silver fillings removed [if you have any], replace them with porcelain ASAP, then and only then start a heavy metal chelation regiment. I use chlorela and cilantro and fulvic acid from a prehistoric source. It will take years, and it may be even impossible to remove all the mercury from our bodies. But so far I have seen very good results.


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## Miss Underestimated

Mine originated with food poisoning. One theory is that for some people, food poisoning, or some other type of intestinal infection, triggers the IBD that is lurking there, waiting. Two other people got sick when I did - they recovered, I kept getting sicker.

I treated my own IBD for 25 years, mainly because no doctor could/would  diagnose it. Antibiotics seemed to clear up my problems. My GI doc (now) acknowledges that Crohn's does respond to antibiotics - temporarily. 

I used home remedies, knew there were things I couldn't eat, took supplements, but never got into the more outlying self-treatments. I did what I did out of necessity, not because it was my choice. I had occasional flareups (I know now that's what it was), and finally ended up in emergency surgery for a perforated bowel. That's when I was first diagnosed with Crohn's.

Some questions came up last year when one of the doctors in my GI doc's practice did my colonoscopy, and insisted I had UC rather than Crohn's. I was and still am nearly symptom-free. 

The Prometheus tests were definitive for me. I knew I had relatives who had been diagnosed with Crohn's, and sure enough, the Prometheus test indicated a genetic defect that is tied to the serious forms of Crohn's. 

I have been prescribed Humira, and have weighed the statistics, and decided to take it. Now I'm just trying to find assistance with the co-payment so I can start treatment. There is a higher risk of dying in an automobile accident on an interstate than of contracting the lymphoma associated with Humira. It isn't risk-free, but put in perspective with all the other risks we take every day, it seems worth it to me.

IMO, the risk in treating ourselves is what happened to me - the inflammation is there, unnoticed, symptom free, and I thought I was doing fine, while all along I was getting worse and just didn't know it. It almost killed me.

I'm posting this to share my experience, not to criticize or judge anyone else's choice of treatment. I know we are all different. But just in case you think that symptom free = disease-free, it doesn't.

This is a strange and horrible disease. I hope and pray that in my lifetime, researchers will discover the cure.


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## QueenGothel

rdsoxfan said:


> "Point being, I just ordered two bottles of the wormwood. When I get it I'll create a thread I'll continually update and let you all know if I crap worms"
> 
> exciting


I just want to add that I took my DDs hair sample to have it analyzed using Electro-dermal screening by a guys that spent the majority of his life studying parasites.  He is all about the colon.  He didn't prescribe wormwood which would help if you have a worm parasite.  His test showed my daughter has Toxoplasmosis Gondii which is a single celled blood parasite.  We are using a Protozoa vibropathic along with the list in my signature to flush it out of her body.  He doesn't do this anymore for the public... He used to have a clinic in Ann Arbor, Mi but he sold it.. He said it wore him out bc people expected him to cure diseases and he can't but if a parasite is the cause and the disease is the syptom he can get the parasite out.  

This all might sound crazy and like hocus pocus but the doctors cannot explain why my DDs bleeding could not be controlled with the IV steroids and Flagyl.  Not to meant ion why her WBC could was 62000.  I am taking a shot in the dark and praying for a miracle.  It has been rough.  She just got done with a 10 day stay at children's hospital and a blood transfusion.

More info parasites multiply during a full moon.  Sounds crazy but this is when her flare began.  After reading a lot about this particular parasite we were living in a unsanitary condition... Inbetween houses and there was a uncovered sandbox and rats. (was not aware going in). Yikes I know. I am a total germaphobe so ekkkk.


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## djsabreblade

I'm just curious how it is that it could be that people are genetically pre-dispositioned to getting IBD but yet, ~100 years ago the disease was practically unknown/was unknown...hmmmm...


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## David

djsabreblade said:


> I'm just curious how it is that it could be that people are genetically pre-dispositioned to getting IBD but yet, ~100 years ago the disease was practically unknown/was unknown...hmmmm...


There is genetic component to just about everything.  I don't believe that there is a genotype that says, "This person WILL have Crohn's Disease" like there is for say Down's Syndrome.  But I believe that there are certain phenotypes for Crohn's, which is how those genes are expressed, environmental factors, and interactions between those two.  For thousands or millions of years, people could have genetic predisposition to Crohn's Disease but it wasn't until factors A, B, C and X, Y, Z came into play in modern society that we started to see escalating cases.

Something else I've always wondered about is just how high prevalence of Crohn's Disease was in the past but was not diagnosed due to a lack of diagnostic technology.  As hard as it is to sometimes get a proper diagnosis these days, I can't imagine how hard it was pre-colonoscopy and other technologies commonly used for diagnosis in modern times.


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## Miss Underestimated

David said:


> There is genetic component to just about everything.  I don't believe that there is a genotype that says, "This person WILL have Crohn's Disease" like there is for say Down's Syndrome.  But I believe that there are certain phenotypes for Crohn's, which is how those genes are expressed, environmental factors, and interactions between those two.  For thousands or millions of years, people could have genetic predisposition to Crohn's Disease but it wasn't until factors A, B, C and X, Y, Z came into play in modern society that we started to see escalating cases.
> 
> Something else I've always wondered about is just how high prevalence of Crohn's Disease was in the past but was not diagnosed due to a lack of diagnostic technology.  As hard as it is to sometimes get a proper diagnosis these days, I can't imagine how hard it was pre-colonoscopy and other technologies commonly used for diagnosis in modern times.



Yes, this.

And people died of influenza and other diseases we barely pay attention to today, long before things like Crohn's or cancers ever showed themselves. A woman night have 8 children, and only 5 of them live to adulthood. 

Also, FTR, the first recognizable description of Crohn's in western medicine was published in the late 1700's. I read about treatments for fistulas as far back as the middle ages - and the treatment was running a string through the fistula, keeping herbal medication on the string. Sounds familiar....


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## mnsun

The idea of toxoplasmosis factoring in as a contributor to crohns is interesting to me.  Jordan Rubin's book briefly entertained the idea of toxoplasmosis as a factor, or at least he advised supplementing your cat to prevent human exposure.  It seems toxoplasmosis can enter a human host through the small intestines, after injestion of contaminated food/meat.  I recall, as a cash strapped college student, buying meat from england, here in the midwest, the week I started presenting symptoms and had surgery.  I've always been mystified by the idea of a blood disease/parasite as a contributing factor from the "meat" I bought.  

I've also been baffled by the idea of helminthic therapy which employs whipworms to intentionally introduce "beneficial" parasites to positively stimulate T cells/cytokines in affected tissues of the gut.  I haven't researched this approach to any depth, but it seems eggs are not cheap and often need to be reintroduced after a few years--which suggests a haphazard and temporary solution.  Helminths may cause general fatigue and side effects vary individually. 

On a side note, I keep hearing people mention Prometheus Labs for IBD testing.  It appears Prometheus is in the midst of a Supreme Court legal battle with the Mayo Clinic which may be worth mentioning to doctors.  I saw an article in the New Scientist called "A Patent Too Far?".  The gist of it seems that the lab is fighting to patent tailored responses to IBD diagnostic tests.  It seems Prometheus want to get paid (raise your bills) every time a doctor reads metabolite levels presented by tests and prescribes specific treatments according to specific metabolite levels, if that makes sense.  Though I'm hoping for common sense to win out, our corporatist henchmen on the bench will likely rule in favor of the corporate "people" once again.


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## Miss Underestimated

Is the corporate/political discussion necessary? It is enough to make me avoid forums where it is rampant.


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## mnsun

Though it was only a sentence long, I guess not.  I am regretfully compelled to respond and waste yet more space in this post.  I deeply apologize to any devout corporatists and corporatist sympathizers interested in pretending all is well on the fascist front.  If, as you've observed, corporate/political discussion is rampant in healthcare forums, perhaps there is a reason and avoidance/repression will not make it cease.  

I might be wrong, but I believe it's important for crohnnies seeking answers to at least consider the socio/political factors which erect roadblocks and stifle innovations that may lead to effective IBD treatment.


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## JohnnyRottenAppleseed

Anyone who doesn't believe politics as corporatism control our healthcare hasn't seen the film Burzynski on Netflix about Dr Burzynski who is treating and curing Cancer without toxic chemo and radiation. The US govt tried to shut him down and failed. Then they tried to steal his patents. We must all take responsibility for our own bodies and healthcare. Good doctors are few and far between and their hands are tied by the AMA and FDA and Big Pharma.


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## David

If you guys want to start a thread dedicated to such discussion, that's fine.  But let's please keep it out of Heather's thread and focus on her.  Thanks


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## QueenGothel

Heather, I just wanted to post that I am sick of the IBD treatments also my DD is only 4 and is on 11 adult pills and a Canasa suppository.  I too am hoping her homeopathic therapy and diet do the trick.  I have only been doing this since mid October.  I am exhausted. Scared to death she is tramatized from the hospital stay... She seemed to get worse once we were there.  She cries she doesn't want to go bed bc of the Canasa.  I really hope this diet does the trick.  We are going to try the paleo diet also.  Thanks for the post.


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## Miss Underestimated

Myreinhard said:


> Heather, I just wanted to post that I am sick of the IBD treatments also my DD is only 4 and is on 11 adult pills and a Canasa suppository.  I too am hoping her homeopathic therapy and diet do the trick.  I have only been doing this since mid October.  I am exhausted. Scared to death she is tramatized from the hospital stay... She seemed to get worse once we were there.  She cries she doesn't want to go bed bc of the Canasa.  I really hope this diet does the trick.  We are going to try the paleo diet also.  Thanks for the post.


How heart-breaking.  I never even knew about pediatric Crohn's until I found this forum.


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## djsabreblade

Myreinhard said:


> Heather, I just wanted to post that I am sick of the IBD treatments also my DD is only 4 and is on 11 adult pills and a Canasa suppository.  I too am hoping her homeopathic therapy and diet do the trick.  I have only been doing this since mid October.  I am exhausted. Scared to death she is tramatized from the hospital stay... She seemed to get worse once we were there.  She cries she doesn't want to go bed bc of the Canasa.  I really hope this diet does the trick.  We are going to try the paleo diet also.  Thanks for the post.


Yes..try the paleo diet, even the candida yeast killing diet can be good. Most Crohn's patients [myself included] have yeast overgrowth in the intestines. This was even verified by my surgeon. Once the major source of the yeast is removed [in my case via surgery] you can start fresh and be careful not to put it back in from such things as sugar, white flour [surprisingly the thing they tell you to eat lots of!] and bread. Even if it is gluten free. The gluten free bread is actually really hard to digest as well. So I stick with organic brown rice noodles as a good substitute for bread. Just say goodbye to all sandwiches...


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## TeacherMama

I am in the middle of a flare up and frustrated at the 6MP dosage. I was on 50, up'd to 100, and the side effects are excruciating. I talk to the nurse and am down to 50 again. 

I am considering leaving all meds altogether as well. So tired of this. I am having a hard time with the SCD, though. I'm allergic to nuts and have a dairy sensitivity. The intro diet is hard for me for some reason. I'm not giving it 100% and maybe that's the issue. I'm frustrated because I can't completely tease out the symptoms from the treatment or disease, you know?

So do you have any recommendations for the SCD by chance? How did you start? Did you follow the stages of the diet?  I've read BTVC and it makes so much sense to me.

Thanks


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## QueenGothel

djsabreblade said:


> Yes..try the paleo diet, even the candida yeast killing diet can be good. Most Crohn's patients [myself included] have yeast overgrowth in the intestines. This was even verified by my surgeon. Once the major source of the yeast is removed [in my case via surgery] you can start fresh and be careful not to put it back in from such things as sugar, white flour [surprisingly the thing they tell you to eat lots of!] and bread. Even if it is gluten free. The gluten free bread is actually really hard to digest as well. So I stick with organic brown rice noodles as a good substitute for bread. Just say goodbye to all sandwiches...


She did have some girlie yeast like issues before all this happened.  It was twice she told me her privates hurt and they were all red.  I rinsed her away with cold water and applied a&d and it was gone the next morning.  I have been testing her pH daily.  Hoping to keep it in check but I will look into the candida diet also.  Thanks.  I don't know if we can go bread free though.  It is the only way I sleaze the cal-mag and super chlorophyll into her diet through pb sandwich.  Only 1 piece a day right now.  I truly hope she can keep having pb. I know a lot of people cannot.


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## ~Manders~

Thank you for posting Heather!! I am definitely going to be looking into the SCD! I'm doing ok with my meds, but my husband and I are going to be trying to conceive in 6 months or so, and I'm very nervous about being on meds while being pregnant & then breast feeding. This might be another option! Thanks again & all the best!


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## ~Manders~

I couldn't resist...I just bought the book, AND a recipe book for SCD! I'll let you know how it goes!!


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## devin.moyer

Hello everybody. I was recently diagnosed with crohns and am not a fan of taking medication. I am currently on Imuran and remicade. Since starting treatment, my inflammation has gone down, but not only has my fistula not closed, but they found another one since starting treatment. I have been curious to try to treat this holistically because I worry that medications are just treating symptoms, not curing the actual disease, and the medication comes with so many side effects that I don't even know if it's worth it. Does anybody have any advice/diet plans that they will share with me? Does eating organic foods help any? Has anybody tried raw milk or goats milk? And I have read some people use yoga and meditation to help treat this holistically. Has any of the above methods worked for anybody?


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## JohnnyRottenAppleseed

devin.moyer said:


> Hello everybody. I was recently diagnosed with crohns and am not a fan of taking medication. I am currently on Imuran and remicade. Since starting treatment, my inflammation has gone down, but not only has my fistula not closed, but they found another one since starting treatment. I have been curious to try to treat this holistically because I worry that medications are just treating symptoms, not curing the actual disease, and the medication comes with so many side effects that I don't even know if it's worth it. Does anybody have any advice/diet plans that they will share with me? Does eating organic foods help any? Has anybody tried raw milk or goats milk? And I have read some people use yoga and meditation to help treat this holistically. Has any of the above methods worked for anybody?


I have used all of those and other things. I was in the same boat as you are a few years ago. It's hard to say what got me and kept in remission. Proper sleep, water, and whole GMO free foods go a long way, as does any stress reliever. Probiotics from cultured foods are great too. Good luck!


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## crohns suffer"s mum

we had a trip to Hawaii and my son was diagnosed with blasocystis on returning home. triple positive.
interesting reading the posts. now wondering if this could have been the trigger for his crohns disease .


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