rolling the dice......

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CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 10/31/2007 8:07 PM (GMT -6)   
today is a monumental day for me. it is my first day without meds. it felt odd in the morning not to take any pills. i hope i get used to it. i've been taking something for crohn's for the last 14 years.

i've been feeling great, the best ever really, by just changing my diet around - eating organic and basically eliminating sugars, processed foods and almost all grains. my last remicade infusion was in december and i feel i dont need it anymore.

yes, my GI does know about this. if things go bad on me the back up plan is humira for a quick fix and then we'll deal with long term solutions.

i am also curious to see if getting off the 6-mp (which i've been on since apirl 1995) is the reason why i am having this mysterious anemia that blood transfusions doesnt seem to be able to solve. this is what really prompted to me get off all my meds. i was also on colazal for years and i've always questioned its effectiveness (never thought pentasa, asacol, or azulfadine (sp?) did anything for me either).

anyhoo, the next few months will be very very interesting. maybe i am a blind optimist, but i truly believe i'll be fine, and perhaps feel even better than i do right now as my body purges itself of the residuals these meds have left in me
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
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


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 563
   Posted 11/1/2007 4:15 AM (GMT -6)   
good luck! after so many years you deserve a break, i do hope it goes well for you :)
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 20mg prednisone, 4000mg pentasa daily & vicodin for pain


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 11/1/2007 7:11 AM (GMT -6)   
I hope it goes well for you. I once thought my Asacol wasn't doing anything for me and went off of it. Within a few days I started feeling really bad. Went back on it and started feeling better again.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/1/2007 12:37 PM (GMT -6)   
I hope the break will last for ever :-) ... I have red SO many anecdotal stories about this diet and the SCD diet. Both in the US and in different European Contries. There is a lot of people using those diets and the diets have brought them into remissions for ten years or more. But of course there is a cost. They have to relearn the whole eating and cooking process. If my medication would stop to work I would chose the Makers diet and do some supplements from the SCD, because I think the SCD is too hard to follow for me.

I would definitely take the special yoghurt from the SCD. But I would take the bread and the ecological fruits and vegetables from the Makers. And I would like to keep the potatoes...are they legal in the Makers diet?
We harvest our own potatoes and vegetables. I always bake my own bread. And we fish our fish during the summer and autumn to put in the fridge for the winter. I do make all the food from the basic, I love cooking.
We have a lot of berries in the mountain and in our garden too. So we are almost "Makers" already :-)
But I can't stay without my bread...do I have to while using the Makers?

Good luck, Crazy Harry, don't stop to use the Forum, we have so much to learn from you :-)


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo. A mixed group, members with MS, Crohns, Colitis Ulcerosa, psoriasis, other autoimmune diseases.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.

Post Edited (Skjura) : 11/4/2007 9:25:43 AM (GMT-7)


Ikas
New Member


Date Joined Sep 2005
Total Posts : 8
   Posted 11/1/2007 12:39 PM (GMT -6)   
Good luck! hope it works out for you.
 


climbs
New Member


Date Joined Sep 2007
Total Posts : 18
   Posted 11/1/2007 1:13 PM (GMT -6)   

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/1/2007 8:13 PM (GMT -6)   
thanks everyone!

i'll be doing a combo of the makers and scd. perhaps i should come out with my own diet???? i have found that a greatly reduced grain and sugar in take works very well for me. but i do have grains on occasion and when i do i try my best to make sure they are sprouted. if not i'll eat them sparingly and make sure to take an extra digestive enzyme or two. food tastes good and life is worth living so there is some cheating now and again. however i think the key is knowing how often you do it so to limit yourself and also know the quantity of what you are eating when you cheat and the quality of it too. self control is key otherwise your body will pay the price.

i have found that most of the foods allowed or disallowed by both diets are fairly similar but not always for the same reason. it was hard relearning how to eat (and shop) but now having done it i am glad i did cos of the benefits i am seeing from it. i strongly encourage everyone to try it. it may not be a panacea but some dietary changes could work wonders, if not for crohns then perhaps for other ailments you may not know you have and also for overall good health.

i'll definitely stay on with the forum. there is still a lot for me to learn. and of course i'll be keeping you all posted. not like i am "cured" or anything...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17686
   Posted 11/1/2007 8:48 PM (GMT -6)   
Well, they do say you are what you eat and if you've modified your diet to a healthy one I could see that being a huge benefit for you and anyone of course...I'm glad you're feeling so good, I know what it's like, I've had a constant flare for my entire 16.5 yrs of having crohns, since changing my diet and going the natural route I too have found much relief, it's still not perfect but it's better than it ever was.

Please keep in touch here and update us on how things are going...I'm so excited for you, best of health to you!

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


dhardi44
New Member


Date Joined Jun 2007
Total Posts : 10
   Posted 11/1/2007 9:15 PM (GMT -6)   

Good for you Harry,  I was told I had uc 8 years ago and had my colon removed and I now have a j-pouch.  I had a bad flare-up in March and I had a blood test done and now they tell me I have crohn's.. I am on my second treatment of Remicade and feeling better. All I take is lomotil as needed and the remicade.. I hope every works out for you.. I will be looking into those two diets.

 


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 11/1/2007 9:28 PM (GMT -6)   
Glad to hear that's working out Harry :)
Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 35mg, Pentasa 1000mg 3xday, Atenolol 25mg for fast heartbeat and Restoril 30mg for the sleepless nights (thanks Pred!)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 11/1/2007 9:44 PM (GMT -6)   
best wishes and remember to keep us updated!

roni

Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/4/2007 10:26 AM (GMT -6)   
Please, anyone,


what is sprout and grains?

ingrid :/


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo. A mixed group, members with MS, Crohns, Colitis Ulcerosa, psoriasis, other autoimmune diseases.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/5/2007 11:38 PM (GMT -6)   
i believe you mean sprouted grains. here is an excerpt from the notes of a class i am taking:

Two types of carbohydrates that we consume and if eaten in their natural state, can prove to be very beneficial to our health: monosaccharides and disaccharides. Monosaccharides and disaccharides are comprised of one to two easily digestible sugars that, when ingested, pass into your bloodstream almost immediately. Glucose – the primary sugar in our blood and fructose (fruit sugar) are monosaccharides; lactose (milk sugar) and maltose (malt sugar) are disaccharides.
Foods containing disaccharides can be difficult to digest unless they are consumed in their “pre-digested” form (i.e. after they have been soaked, sprouted or fermented). All carbohydrates are sugar. When you eat naturally-occurring monosaccharides or disaccharides you get fiber, vitamins, minerals and water. Fruit and raw honey are good examples. For quick energy and a healthy snack, these are the way to go.

Our ancestors ate fruits and grains in their whole, unrefined state. Whole grains properly treated through soaking, sprouting or fermenting not only break down the indigestible sugars, but also phytates. Phytates are powerful enzyme inhibitors that grab minerals in the intestinal tract and block their absorption. The sprouting process effectively removes these phytates from the outer covering of the natural grain. Germination initiates a chemical transformation in the seed grains that neutralizes the phytates causing them to come alive, making all of the nutrition within the seed available for digestion and for optimal nutritional intake.
These germinated seeds of wheat and barley and the bread made from them were of great importance in history by supplying carbohydrates to both humanity and to the livestock. Historically, people didn’t consume carbohydrates as we do today. The sugars they consumed were fruits of high nutritional value and the grains were healthy sprouted or germinated grains without the phytates.
Preparation techniques of soaking, sprouting, or fermenting helped to maintain the many important minerals that are essential to life, such as vitamins E and B. However, they are discarded in the refining process. Fiber-indigestible cellulose, that plays an important role in digestion and elimination, is also removed. You will read that white flour is fortified, but this is of little value. Fortification adds synthetic vitamins and minerals to white flour and polished rice after a host of essential nutrients have been removed or destroyed. Studies have shown that these extruded whole grain preparations can have even more adverse effects on the blood sugar than refined sugar and white flour! Most grains and legumes in the supermarket have been treated many times with pesticides and other sprays that inhibit mold.
For the most health-giving carbohydrates, purchase organically grown nuts, seeds, beans and legumes (soaked first for optimal benefits) and sprouted grains.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
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


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/5/2007 11:41 PM (GMT -6)   
been one week now since i quit all my meds. so far so good.....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
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


Katakato
New Member


Date Joined May 2007
Total Posts : 18
   Posted 11/6/2007 12:05 AM (GMT -6)   
I applaud your decision. I've been on meds ever since I was diagnosed. With the exception of my heartburn pill (Aciphex), I have taken absolutely no meds in the past 6 weeks. I'm convinced that these meds are causing as many problems as the Crohn's. I'm not currently on any sort of specialized diet; only using intuition to guide me as far as what to put into my body. Good luck...hope it works out.
Diagnosed w/ Ankylosing Spondylitis in 2000; and diagosed w/ Crohn's in 2001. Currently taking Humira (thank God for those pens) injections every 2 weeks (unless active infection - not uncommon with me taking this immunosuppressant) and daily Aciphex for reflux. This is the smallest contingent of drugs I've been on since 2001. Throughout all of this, I have developed a case of anxiety that I am trying to overcome...one day at a time.

Post Edited (Katakato) : 11/5/2007 11:09:01 PM (GMT-7)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/6/2007 12:40 PM (GMT -6)   
Thanks Crazy Harry for the information on sprouted grains! Very interesting. Do you know if any of this has any effect on gluten? I'm just curious.

Can you get fresh sprouted bread where you are? All I can get is frozen Ezekiel bread. Would love to find fresh someday. I guess I could try baking some...ugh...

Sounds like an interesting class you're taking...

Congrats on the one week anniversary! We're all pulling for you!
EMom

Grateful for everyone's help here!

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

Started The Maker's Diet in early September.


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 11/6/2007 1:41 PM (GMT -6)   
Thank you for a great explanation, DirtyHarry
I actually got Elaine Gotschalls book, Breaking The Vicious Cycle, today from a library. The book is written in Danish, which is easy for me to understand so well that I am able to deal with those "sprout and grains"..;-).
I have been reading about the monosaccarides, the disaccarides and the polysaccarides. The book is easy to follow even if she writes in scientificial terms. And I need to understand things thoroughly to start a new way of consuming food.
I am so glad to read that you have made such good changes for your self, the outcome have to be good. I think the food you eat may do something to your immunesystem as well. Take care, and keep us informed.
From Ingrid :-)


 
Diagnosed CD June 2007. Have been on a minor prednisone medication. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com. A member in the group "lowdosenaltrexone" at yahoo. A mixed group, members with MS, Crohns, Colitis Ulcerosa, psoriasis, other autoimmune diseases.
 
Use home made scd yoghurt containing a lot of probiotics - a benefit for the intestines. I don't use white sugar. No yeast in glutenfree, homemade breads.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/6/2007 7:29 PM (GMT -6)   
Emom - i can find breads that are gluten free but the only sprouted ones i can find are ezekiel and alvarado street. i think the latter is better cos it uses the wheat berry, not wheat flour as ezekiel does. but alas, i cannot find any fresh sprouted grain bread. it is still too niche. the class i am taking is actually a health coaching class through jordan rubin's (maker's diet guy) biblical health website. i've learned way more from doing this than i have from reading his books and his books are packed with a lot of info.

skjura - i'm slowly pouring over the scd for i too just got the book. i plan to post in the near future for everyone comparing/contrasting the scd and the maker's diet. they have some similarities at their core although they arrived at them a bit differently. i am currently blending the two diets.


as for an update with my anemia, my bloodwork on 10/31 showed i was at my best since march 2007, which is when my anemia started. i saw the hematologist this afternoon. they drew some blood and i am doing even better! my whites, hemoglobin, and hematochrit all went up at least a point in a weeks time. that is amazing to me since over the last few months it would take at least a month for them to move that much. i cant attribute much of this to diet since i was going that route for 2 months up until 3 weeks ago. that was when i began taking otc iron supplements at the strong request of my hematologist since my iron was pretty dang low. in 3 weeks i've made a big turn around. i dont know how much of it is from getting off the meds, especially the 6-mp (purinethol) in the last week. i talked to my GI and supposedly it gets out of your system in a matter of days. at things are looking up.

thanks every one for their kinds words and thoughts. much appreciated.
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

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