Newly diagnosed...seeking experiences

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newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 11/19/2009 5:57 PM (GMT -7)   
I have just been diagnosed with CD.  I am 35 and have always been super healthy.  Now that I look back, I might have had minor episodes the last couple of years, but never any debilitating pain.  My GI doc says the colonoscopy shows signs of chronic inflmmation.  As you can imagine, this is a huge shock to me....never getting sick and suddenly my body is failing me.  I am having a real hard time agreeing to take drugs to treat this.  I know....call my crazy.  But, I at least want the chance to change my diet and see what good I can do with that.  My GI doctor has given me 3-6 months to try it.  I know the eventual result may end in drugs because there is no CURE for CD, but at least I can try for right now. 
 
I have a few things I am tossing around, and want to know what experiences others might have.
 
1)  Has anyone else been able to do this without drugs?  Anyone done it from the beginning, and never had to take drugs?
 
2)  I am currently eating as much according to Rubin's book "Restoring Your Digestive Health" as I can.  I am doing very well on that, and am using it not thinking it will cure me but simply as a way to train myself to eat better.  What are your experiences?
 
3)  In RE to Rubin's diet, WTH is cultured goats milk, and are there any substitutes?  I've heard from friends that Stonyfield is a good yogurt for this diet.  Agree or disagree?
 
4)  I am currently taking Rubin's "FYI" (For Your Inflammation), Enzyme, and Probiotic formula.  These were recommended to me by a friend with Crohn's.  Eventually I might find a different/cheaper brand, but for now I am doing this.  Suggestions on supplements?
 
5)  I will be seeking the advice of a naturopath who will work with my GI.  I have NO IDEA how to even go about finding a good one!!!  Advice?
 
Thanks everyone.  This has been a rollarcoaster ride this week coming to grips with this life-long disease.  I think modern medicine can be great, but I also believe there is validity in natural things.  I hope there is a balance.  I am seeking advice because I want to start the rest of my life journey with Crohn's with as much information and on as good of a footing as I can. 
 
**newfoundsun
 
CD diagnosed 11-12-09.  No meds.

UC21
Regular Member


Date Joined Oct 2009
Total Posts : 68
   Posted 11/19/2009 7:56 PM (GMT -7)   
Hey... my advice to you would be a low-residue diet...

The goal in controlling CD is limiting the number of bowel movements you take per day..... the less movements, the more time the Colon has to heal.


By this I mean Grilled Chicken, White Toast/Kaiser Roll is Ok, Salmon, White Rice, Bananas (good source of Soluble Fiber that won't hurt you)....

Whatever you do AVOID chips....

If you're liked me you will buy a bag of Baked BBQ lays thinking its ok (says only 2 g of Fiber on bag), and you will end up eating 3/4 of the bag.... Before you know it you consumed 14-18 g of Fiber..... This will hit you the next day BIG TIME...

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/19/2009 8:26 PM (GMT -7)   
Hi newfoundsun,

Sorry you have to be here....I've had crohn's for 18yrs now, no complete remission as I have some complications with my perianal crohn's skin tags...but I've been more severe with my CD than not until about 6ish yrs ago when I started the natural anti-inflammatory route (see my sig below) and altering my diet a couple of yrs ago, as well as regular daily exercise...I've only ever been able to use prednisone for oral meds cuz I'm either allergic or non-responsive to traditional oral meds and then when pred stopped working for me I had no choice but to put my skeptisism aside and try the natural route, thankfully with surprise I found it to be helpful...like I said, no full remission but better than going 30+ times/day that's for sure...my CD is mainly affecting my colon (crohn's colitis) and on many occassions on and off in the rectom (proctitis) and continuous on the anus with the perianal crohn's skin tags. Sometimes depending on the severity will depend on your options too, but of course not always.

What works for some doesn't work for all but you won't know what works for you until you try, that includes exercise, diet, naturals and RX...I'm glad you're taking a probiotic, refridgerated ones are usually best and you want to make sure you're taking one that contains at least 10 billion active cultures. Primadophilus Reuteri made by natures way is a really good one (though it only contains 5 billion, you could still benefit by taking one or 2/day) it has guaranteed intestinal release, aids with lactose intolerance issues (which I also had so I can vouch that it definitely aids with that) and high cholesterol, also for women, vaginal health (I can vouch for that as well, haven't had a single yeast infection since starting it) I am taking a different probiotic which is just as good as the primadophilus but it contains 10 billion live cultures (also needs refridgeration) and continues to aid with the above mentioned that the primadophilus has aided with so I'm very happy about that...I buy if from my local health food store called Sangsters (in Canada) so it's their brand, it's cheaper than the primadophilus and just as effective, plus I get more in a bottle.

Fibre supplements are listed in my sig and were mentioned to me by my GI, best advice I ever got from a GI and I've had a few over my 18yrs of dealing with this.

:)

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/19/2009 9:59 PM (GMT -7)   
Hi newfoundsun! Welcome to the forum!

I will take a stab at a few of your questions! wink

1) My son took drugs (pred. then Asacol) for the first year only and has been medication-free for about 18 months now. We attribute this success to the SCD.

2) I like the idea of using Rubin's book to train yourself to eat better! His follow-up book to "Restoring Your Digestive Health" is called "The Maker's Diet", also a great read! We have discussions about it and the SCD here on occasion.

3) I don't have much experience with cultured goat's milk, so I'll pass on that one. However, any food that you can make that is fermented properly will give you added beneficial bacteria. Sally Fallon's awesome book "Nourishing Traditions" has a segment on how to make fermented foods such as sauerkraut, yogurt (of course) and fruit chutneys. The book is amazing! Highly recommended! Stonyfield yogurt is probably one of the best store-bought yogurts here in the US. That said, making the SCD home made yogurt will give you 4 times (!!!) the beneficial bacteria and virtually no lactose (store bought yogurt will have some lactose and can therefore cause digestive issues).

4) It seems to me like Rubin's supplements are good, albeit pricey. If you are satisfied with your results, I would stick with what you're taking! There are many great brands of probiotics out now, and most people agree that you may need to experiment to see which one works best for you. We have used several brands, but my fav is Theralac or VSL#3...

5) When I was looking for a naturopath I simply googled the words "naturopath" with the name of the largest city near my home. Lots of hits came up. Then I picked up the phone and called their offices and asked the receptionists lots of questions about the doctors' practices. It really helped me narrow it down.

Hope that helps a bit! For further discussions on the MD or the SCD, check out my signature below where there are a few discussion threads to read! I wish you great success!
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.
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 11/19/2009 10:43 PM (GMT -7)   
Thanks EMom!  I am glad to have someone else who is not doing the drugs.  I will eventually get Fallon's book and look into the Specific Carbohydrate Diet.  Right now I need to focus, and that means Rubin.  Although, I am glad to hear about Stonyfield because that confirms what I've been hearing!  Much easier right now to go to Fred Meyer and pick that up.  :)
 
This is such a tough journey when it just is beginning.  I am so thankful to have found this community of people who know what I'm going through.
newfoundsun
www.newfoundsun.worldpress.com (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds, Garden of Life supplements


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/19/2009 11:26 PM (GMT -7)   
Oh!!!! Here's the thread I replied on, I thought I was losing my mind, but instead you just confused me newfoundsun by making a new post almost the identical to one another (well, at least in my messed up mind LOL).

:)

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 11/20/2009 6:40 AM (GMT -7)   
Newfoundsun, I was going to check out your blog but can't get the link to work. Any ideas what might be wrong? If all else fails, could you email it to me by clicking on the little yellow envelope under my name on the left? Thanks!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/20/2009 7:38 AM (GMT -7)   
Well I have had this disease for over 34 years. I had two serious flares my first four years with Crohns. I only used meds while in these flares. I just did not want to take meds. I ended up having a almost 20 year remission (not common) where I took no meds. That ended abrubtly for me with an emergency resection due to a complete blockage. While I was busy getting on with my life like I didn't have Crohns, Crohns never forgot me. It was in there the whole time doing its damage on a microscopic level. Will I ever be med free again, HECK NO!!

I only use the med Asacol. It is one of the mildest Crohns meds out there, with little to no side effects. None for me! I also live on a low residue diet all the time and that works best for me. I want you to understand that since that emergency resection it has been hell trying to get my disease back under control because of my stubborness in not wanting to take meds. Its taken me almost 10 years to get back to good health. I am finally back into a healthy remission, but the road here was hard. I would really like to see you avoid that. You need to remember that Crohns is a chronic and incurable bowel disease that needs to be treated at all times. You should consider meds and diet as complimentary of eachother.

I wish you good luck with your Crohns, but my personal opinion, is that you are going to have problems in the future without meds. JMHO

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

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 11/20/2009 8:14 AM (GMT -7)   
That's what my GI doc said on Tuesday, that though you might not be having symptoms, that doesn't mean the disease is getting any better.  Thanks for the info, and sorry about any confusion about my two posts!  turn
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
No meds yet, Garden of Life supplements

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