help! how to implement maker's diet while still on medication ...

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cowgirl4ever
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/7/2009 6:59 PM (GMT -7)   
hi,

i'm looking for advice about the best way to implement the maker's diet while still on medication. my husband has crohn's, has tried remicade, and is now on humira (which is tailing off). we really want to try the maker's diet, but are unsure of how to proceed considering that he's been on remicade/humira for the past 6 years now. we are definitely concerned that going to the gastro will just mean another increased prescription of humira or something similar.

so . . . should we just pull the plug on all medication and dive into the maker's diet? or do we do meds and makers diet at the same time? or do we start maker's diet, let last dose of humira tail off and go from there? how have you all approached this?

thanks so much everybody!!!

:)

ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 7/7/2009 7:04 PM (GMT -7)   
I just started the Brasco broth recipe, the one from his previous book "Restoring your digestive health." It's been an adjustment for me, but basically eating the soup breakfast lunch and dinner for a week has helped tremendously. If you have any experience like me, your husband will be extremely fatigued for the first three or four days. The recipe is all about repair, it's in the maker's diet book I'm pretty sure, and eating the soup for a week or two straight is more for crohn's and bowel disorders, while the Maker's Diet is geared towards everyone. I've been having success with it but I have also maintained my medications. Don't be afraid to do both. If you go the whole 'off medications' route, you have to institute an entire lifestyle change. No additives, stict diet, all sorts of stuff. Don't be afraid to evolve into a system that works for you.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
100mg mecaptopurine, 20mg Prednisone, 500mg Metronidazole 3x daily, Darvocet for dessert.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/7/2009 9:42 PM (GMT -7)   
I can't tell you what to do, but I would not like to try managing by diet alone unless the disease was well under control. Even then, I would go the route of diet plus meds until the first month or so had passed. Do not cut off your lines of support with your doctor in case you need to resume treatment. You don't want to alienate your doctor because you are "resisting treatment".

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/7/2009 10:07 PM (GMT -7)   
My diet is SCD, and for the time being, I have continued with my Humira. I won't drop it until I've been on the diet for at least a year, maybe longer.

Good luck! I hope your husband finds success!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/8/2009 6:33 AM (GMT -7)   
You should do the diet and TAKE your medications. Think of each as a compliment to the other. The diets will help with the symptoms, but will not stop the inflammation and damage the disease does, but the medications do. I once lived med free, it ended abruptly with an emergency resection because as I was living my life like I didn't have a chronic illness, the disease reminded me very quickly that it was always there and continued doing its damage.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/8/2009 9:21 AM (GMT -7)   
I respectfully disagree Nanners. I know people on SCD from the yahoo groups who are not on meds, and whose colonoscopies come back clean. Diet can stop both the inflammation and progression of the disease as long as you're strict and don't stray. Elaine Gottschall's daughter is a good example. She was deathly ill as a child with UC (which is what led Elaine to the diet). Now she's a healthy adult. Lucy Rossett, who has an SCD store, has been healthy now for some 16 years.

But, I do agree about sticking with the meds until you're sure the diet is doing its thing. And if you do stop meds, make sure to get your regular colonoscopy to make sure that everything is staying under control.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/8/2009 10:21 AM (GMT -7)   
Spooky,

Nanners went 20 years med free before her emergency resection. I went 10 years med free before I was brought back to my harsh reality. CD is chronic and at this point UN CURABLE. Diet alone will not stop it. On this point, there is a great divide amongst the members. And we must agree to disagree.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/8/2009 10:36 AM (GMT -7)   
I agree that it's not curable, but you can go into remission.

Zanne & Nanners, did you follow a diet or do any other natural treatment while you were med free? Did you get any colonoscopies to keep tabs on things?

I'm thinking about changing from Humira to LDN sometime, if I can get my GI to prescribe it.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/8/2009 11:32 AM (GMT -7)   
Yes Spooky but if you want to maintain the remission you should stay on meds too. Just like I said they are both "compliments" of each other. I follow a low residue diet as does Zanne. These work well for her and I. How do you know if its the diet helping you to feel better or the Humira or both??

This part is just my opinion, but I think it is wrong to make people think the diet is going to continually keep their Crohns in check. I will not name names, but I happen to know of three people on this forum who live on the SCD or Makers diet plan faithfully, who all had scopes this past year and all showed active inflammation. So I firmly believe that if the diet works for you, that's awesome, but don't stop your meds. You have a chronic INCURABLE disease and why take the chance without meds. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/8/2009 1:38 PM (GMT -7)   
I started Humira last June. It took away my pain, and it also stopped my major bleeding by late August. For the first time in forever, I wasn't anemic. Humira has been good to me, but it didn't fix all of my crohn's problems. I went on SCD on December 1st. SCD healed my 3 fistulas & fissure (I'm guessing that it could be because of decreasing the bad gut bugs and increasing the good ones), took care of my constipation problems (my 4 day transit is now a 2 day transit), cured my acid reflux (I was able to quit taking Protonix), helped me gain weight (I started at 94 pounds, and am up to 100), fixed my itchy skin problems, and vastly improved my seasonal allergies (I no longer get severe itchy throat, nose, eyes, and plugged up ears). I also no longer get weird fluid filled bumps in my mouth after eating. My blood work is better too. My RDW and platelet levels are in normal range for the first time since getting crohn's.

Currently, my main issue is fatigue. It's a little better since starting SCD, but I have a ways to go. I also sometimes have a little blood on my stool, but not like before SCD. My scope in May showed a normal looking colon (with the exception of a big stricture at the ilecocal valve), but biopsies showed microscopic inflammation. I've only been on the diet 7 months though, and 2 years is the average time for a crohn's person to repair intestinal damage.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/8/2009 5:55 PM (GMT -7)   
Hi cowgirl4ever! Welcome to the forum! I hope you are still out there... smilewinkgrin

We did the Maker's Diet exclusively for 6 months shortly after my son's diagnosis (now we use a combo of both the MD and the SCD--they are very similar). CrazyHarry here on the forum gave me lots of tips. I hope he sees this post because he can most likely answer your questions better than I. But here's my shot...

The best way to implement the diet in my opinion would be to read and understand the three phases of the diet. While you are reading, begin removing all sugar (and all sources of it) from your diet. Also remove disaccharide-rich carbohydrates like grains, pastas, potatoes, corn, etc. Take your time. Rome wasn't built in a day! Begin locating some of the foods at your local health food store. Raw milk, grass-fed beef, sprouted grain breads, etc., can be a challenge to find in some areas! Check into local sources of organic foods and find a local honey source. Once you've laid the groundwork, start with phase 1.

Phase 1 is only 14 days. You might want to stay on it longer depending on how severe your issues are ... CrazyHarry will be good here...

As for these questions: "so, should we just pull the plug on all medication and dive into the maker's diet? or do we do meds and makers diet at the same time? or do we start maker's diet, let last dose of humira tail off and go from there? how have you all approached this?" I can only tell you what we did. My son stayed on his medication for nearly a year after starting the Maker's Diet. At that time he was symptom-free and his doctor told him to stop his only medication--Asacol. It seems to me that working closely with your doctor and explaining your intentions is a good idea.

Hope that helps a bit!
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/8/2009 6:04 PM (GMT -7)   
this is my nickels worth (i like to give more to make up for all the cheapskates...you can keep the change, just pay it forward...)

DO NOT stop your meds!!! i assume your husband is already med dependent, especially if he's doing humira. start the diet as the book suggests, going through all 40 days sticking to it as well as you can. the better you stick to it and tough it out the better chance you are giving it to work. it is very very difficult. dont jump right into it. plan it out first and get an idea of the expectations. read the book thoroughly and take notes. plan out meals to get an idea of how much cooking you'll need to be doing, find different recipes, find out what kind of foods you'll be buying and from what stores, and how to budget all this time in as you'll be making a major adjustment there too.

before you start, you need to make a decision to do this - to do it 100% and stick it out. it is a very mental diet until you make it a habit, then it is super duper easy. i dont know if you are a religious person, but prayer can help in this.

the more occupied you are, the more you will not think about food. you may need to lay off exercising when starting this diet cos you will be super hungry on phase 1 and wondering what there is to eat. the best part though is that you should lose fat without exercising. how cool is that?!

for me, i had to start eating the exact opposite of how i was before. i had to eat my danger foods (ie salads, raw veggies, dairy etc) and get rid of my comfort foods (bread, grains, processed foods). it was scary. but for some odd reason i was able to tolerate them ok. now i cheated and started on phase 3 cos phases 1 and 2 were too intimidating. i did notice improvements though within the first few days. that is not meant to say that your husband will experience a noticeable response to the diet as soon as i did. it may take weeks for him.

i met jordan rubin who gave me a special tailored version of the diet for me based on my symptoms and history to combat my crohn's. trust me, it was A LOT harder than the book version. i did modified versions of phase 1 for 3 months and phase 2 for 1 month, all with a carb ceiling. it sucked, but it was what got me over the top and got me to where i am today and made me a believer out of nutrition for management and prevention of illness.

i suggest using a probiotic when doing the diet. phases 1 and 2 detox and prime the system. this is the best time to begin using one if you do not already. i suggest starting with 1pill day and ratcheting it up 1 pill per day until you get to like 12 per day (4-3xd). stay here for a few weeks and then ratchet back to a comfortable maintenance dose. probiotics are best taken on an empty stomach.

digestive enzymes are another good thing to take. so is a good omega 3 source.

if you find phases 1 and 2 just too hard, then begin phase 3. after you adapt to that for a few weeks or months, then give phases 1 and 2 a try again. you'll have a better idea of how disciplined you need to be and how difficult the diet is. you'll be making your own food and doing a lot of food shopping no eating out and reading labels of everything when at the store.

after a while your taste buds will change and so will your system. there may be some foods that you can no longer tolerate and some only in small quantities. processed foods and foods high in sugar (ie high glycemic) are prime examples, especially if you truly stuck to the diet. you will no longer crave sweets like you did and will develop a taste for sour and bitter things (at least i did).

only once you begin to start feeling better with this diet then would i suggest you begin talking to your GI about reducing or eliminating some meds. diet is not a panacea, but imho it can control symptoms and reduce the severity and length of a flare as good or better than meds. again, my opinion from my experience and research.

remember with all diet, results vary and are not typical. not all diets work for everyone just as all meds dont work for everyone. the trick is to find out how your body responds to certain foods and ways of eating. these diets, specifically the makers diet and the scd, should be used as a template for how to model your eating habits. if you are feeling good, then you can cheat a bit (but be wary and dont stray too far or you will pay for it). if you are in a flare, then you need to ratchet it back, like to phase 1 or 2 until symptoms subside if you are doing makers. there are foods you'll just have to give up. it may suck at first, but when you get educated on nutrition, you'll realize that you should not have been eating it to begin with and it is kinda like poison.

do the diet with your husband. it will be easier for him to do it with some one and it is easier to shop and cook for 2+ than making special trips to special stores and making special meals for one person. if you do the diet with your husband, trust me, you'll find levels of health you didnt know existed. it is not a diet for crohns people or sick people. it is a way of life for everyone.

regardless if the diet works or not, think about this - people are willing to take meds without questioning the doctor or reading the pamphlet info or researching the drug to find out just how bad it really is and the gnarly side effects they have (like lupus, death, cancer, etc). they have no problem taking pills for life, seeing it as a sign of getting old and not as an abnormality. you then take more pills to counter the side effects of the first pill(s). and that is somehow deemed acceptable. they call it risk management. but what if just changing your eating habits could have the same or better result and without the side effects of medicine? wouldnt that be cool? isnt that something worth trying? all it takes is 40 days. just over 1 month (I'd give it a good 3 months at least though) to see if diet can make any kind of a difference in your health. the average life span is like 76 years. can't you take 3 months of that to experiment with your diet and see if this makes a difference? we take our health for granted. this is an opportunity to take control back and live your life.

as morpheous offered neo, will you take the red pill or the blue pill?
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/8/2009 9:40 PM (GMT -7)   
It was almost funny when I read one doctor's rationale for not using diet control to help with Crohn's. He said that it was to avoid the discomfort and inconvenience of such diets! So it is better to take pred with all its side effects or flagyl (possible peripheral neuropathy - can't feel your hands/feet) or the whole rainbow of life threatening drugs than to try diet control!! Of course it is much easier to just prescribe a drug and you don't have to wonder about patient compliance as much. But remember, the third leading cause of death in the USA - after heart disease and cancer - is medical treatment (recent JAMA report).

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/8/2009 10:19 PM (GMT -7)   
the makers diet comes with a great resource guide in the appendix. take the book shopping with you and find these brands. do this BEFORE you start the diet. this is a good jumping off point to find your new favorite brands of basic food staples. you'll have to go to health food stores. get the layout of the store(s) first and find out what you need to buy and what is available to you where. food will cost more and i know times are tough with the economy, but you have to just suck it up and pay the extra price for the better quality food. but consider this - you'll be making your own food and not eating out as much, so in the end it becomes a wash or you come out ahead. truly. imho it really is worth it to go organic, but if you cannot afford it do the best you can. so take the book to the store and go shopping and find those brands and find out by reading the info ingredient panel why these are recommended products. you have to learn how to read labels and learn how to shop all over again before you start this diet. when i started i spent 3 hours in whole foods and bought hardly anything. no joke! it was that much of a shock and took that much work. but it gets a lot easier. now i'm in and out cos i know what i'm looking for and know what to avoid. this is why i recommend you do the recon before you start the diet. this way you know what to buy before you start and you wont be as confused, thus removing a stumbling block. for me, food shopping is fun now. i like spending 3 hours in whole foods now. i feel like girl in a shoe store - i want to buy them all!

the biggest thing is to stay honest with the diet and try as best you can to keep away from grains and sugars. dont cheat with these foods. you will be sabotaging yourself. try to stick to only drinking water. no alcohol.

get the book "nourishing traditions" by sally fallon. this will help on your nutrition education. it is great cook book but i feel obligated to warn you that the recipes require a lot of prep time and elbow grease as they really are making things from scratch.

once you get used to eating the maker's diet way, you'll find it is easy to adapt your favorite recipes to the rules of the makers diet and even making them phase 1, 2, or 3 legal.


since i'm feeling kind right now, i'll offer this to any one here on the site: fly out to san diego and i'll take you shopping and show you how to do this diet and how to cook. i'll give you all sorts of easy tasty recipes and show you what belongs and doesnt belong in your pantry and fridge. you'll get to see first hand what i have in my house and how i shop, cook, what cookware i use, and how i eat and where i go and get my food. i'll show what supplements i use, which ones i like and how to sort out the good from the bad. as an added bonus i'll even show you how to properly use the weights at your gym if you like and even meditative breathing and some chi gung, but not tai chi as that takes years to learn the basics. i know summer in san diego sucks, but there are worse places you could be living...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/8/2009 11:12 PM (GMT -7)   
Keeper said...
It was almost funny when I read one doctor's rationale for not using diet control to help with Crohn's. He said that it was to avoid the discomfort and inconvenience of such diets! So it is better to take pred with all its side effects or flagyl (possible peripheral neuropathy - can't feel your hands/feet) or the whole rainbow of life threatening drugs than to try diet control!! Of course it is much easier to just prescribe a drug and you don't have to wonder about patient compliance as much. But remember, the third leading cause of death in the USA - after heart disease and cancer - is medical treatment (recent JAMA report).


Do doctors think that living in the bathroom is comfortable and convenient? I hate how our society has become one that want a magic pill to solve all their problems. Those heartburn commercials really irritate me, "Be a glutton and eat all the junk food in sight, because our little pill will keep you from suffering the consequences of your crappy lifestyle choices!" In my opinion, there is no food worth suffering for. I wish I hadn't believed my GI when he said to eat whatever I want, because "diet had no effect on crohn's." *blows raspberries at old GI*
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Post Edited (spookyhurst) : 7/9/2009 12:16:12 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/9/2009 7:45 AM (GMT -7)   
Ladies and Gentlemen,
I think diet and meds should be used in a complimentary manner in order to control this disease.  There is no cure.  I do believe using a multiprong approach in treating this disease (if it would make me feel better I would go to a voodoo witch doctor, kidding kinda), that means diet, meds, control the stress, exercise, vitimans, and etc.  Get remission and keep yourself in remission by using every tool that we have availible to us.  Meds are not necessarily a bad thing, and I think we do need watch our diets.  But, I do not think diet is the end all be all, and I think Jordan Ruben might be questionable source.
http://www.quackwatch.com/11Ind/rubin.html 
I do want to caveat that my experience with SCD and Makers ended very badly with severe life threating bleeds.  So please be careful! 
Navy
 
Keeper do mind if I ask you which JAMA that was in, because that is different from the CDC
I wonder what makes the stats different?
 


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/9/2009 8:54:54 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/9/2009 9:01 AM (GMT -7)   
I would also like to add the following reminder to ALL members:

Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.
 
Thanks,
Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/9/2009 4:16 PM (GMT -7)   
mmmnavy,

you really hate this jordan rubin guy dont you? whenever his name or the makers diet comes up i can only conclude that you feel compelled to post that link. i guess i really rustled your feathers when i offered to help people with this diet ;o) the way the FDA works is that once you become a viable company and have a good profit margin, then they go after you with lawsuits to shut you down so that you cannot get people using supplements instead of medicine. the FDA does not like this. the examples are numerous. his products may have made unfounded claims, but what is more amazing are the false claims sanctioned by the FDA! yes, the schools jordan rubin went closed down but then we all cant go to harvard can we? his reputation is actually in rather good standing from what i understand with the top nutrition gurus. i sincerely believe that your experiences with the makers diet and scd are both truly unfortunate, but i would also think not very common.



i totally agree with nanners comment - this forum is a place solely for the exchange of ideas and opinions and experiences, not professional medical advice and what pills to take at what dosage. nor is it a soap box.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/9/2009 4:41 PM (GMT -7)   
Harry,

I would like to add that if these diets work for some, that's great. But respect that SCD or Maker's aren't for everyone. I get concerned when people start talking about stopping their meds. I think that could be very harmful especially for those who are newly diagnosed. I truly believe diet, supplements and medications to be complimentary of each other.

Thanks for your support:)

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/9/2009 7:19 PM (GMT -7)   
Crazy Harry, have you ever read about the FDA's witch hunt to keep stevia from coming to market? They even went so far as to to demand that books on stevia be destroyed! Of course, once the media got wind of it, and public outrage ensued, the FDA didn't go through with their "book burning".

And back to meds, have doctors only been doing a lot of prescribing for crohn's in the past 20 years or so? My dad had a severe case of crohn's starting roughly around 1969, but wasn't offered any meds (not even prednisone) until 1993. His new doc prescribed Osalazine at that point. Of course, every time he gets a new GI (the VA has a big turnover), they change his meds around. I think right now he's only on Pentasa. I've also met two people who live nearby who don't take any meds for their crohn's. One has quite a few problems and has had numerous surgeries over the years, and the other has had 2 resections and has been in remission for 20 years or so. Neither of them do any sort of special diet (one of them actually drinks Coca-Cola like it's water) or supplements. So do the majority of crohnnies take meds, or do just as many go without?
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/9/2009 8:12 PM (GMT -7)   
No ruffled feathers or hate. I just believe in full disclosure, so that people can do their own research and draw their own conclusions.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/10/2009 6:10:04 AM (GMT-6)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/9/2009 9:44 PM (GMT -7)   
about the JAMA article - I got that second hand since JAMA is not available online without a subscription, but it is summarized at: Naturodoc.com

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 7/10/2009 5:50 AM (GMT -7)   
Spooky, I remember the witch hunt against stevia by the FDA. It's one of the many reasons I don't trust the FDA. I also put zero credence in groups like Quackwatch. They are likely funded and/or directed by the FDA or the AMA--both corrupt, in my opinion. If not funded by them, they are certainly run by their members who are followers of their doctrines and driven by an agenda that is not in our best interest... again, jmo.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/10/2009 6:15 AM (GMT -7)   
Spookyhurst & EMom, please remember forum rules. I believe your posts are getting a little too political. Let's please stick to the subject matter the poster originally asked about.

Rule #11. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes. The forums are intended for offering mutual personal support. Debating controversial subjects should be taken elsewhere. Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others.


Thank you,
Gail *Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
*~* http://www.healingwell.com/donate *~*

Post Edited (Nanners) : 7/10/2009 7:27:39 AM (GMT-6)


cowgirl4ever
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/10/2009 10:02 AM (GMT -7)   
hey everybody :)

thanks so much for all of your responses to my questions (keep them coming - we like all the info we can get!). we're taking this slowly & carefully, so we won't be dropping the hubster's medications anytime soon. i just asked because honestly i feel like it's so hard to get straight answers out of doctors as to how diet (or anything else) affects crohn's. they seem to have a prescription for everything and anything not prescribed to treat the disease in pill, medicine form seems to rankle them. not having the disease myself, a lot of this is new to me. if it's the case that the disease can be treated with medicine and diet, we'll do that; if it's the case that a diet really does work, we'll be happy with that too. we just want to know what we can do.

right now we are sticking with humira and doing maker's diet. we're also using a good probiotic, flaxseed oil, and cod liver oil. what other supplements, vitamins, etc would you all suggest? we will be consulting with our doctor as well (when he gets back from his vacation, grr), but again, while he's a nice guy, i can't see him prescribing/suggesting much in the way of "homeopathic" or "natural" therapy (maybe i'll be wrong - that would be nice). we'll be open with him about what we're doing and see what he says. promise we won't do anything rash; i'm just glad to know you all are out there. we don't know a ton of people with the disease, and sometimes we feel kinda isolated.

anyway, hope everyone has a great friday!

cowgirl4ever
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