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DaveF
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Date Joined Jan 2010
Total Posts : 1109
   Posted 3/29/2010 1:40 PM (GMT -7)   
I have low grade symptoms compared to many but still feel pain, gas and general weakness 4 to 6 days per week. It is a burden to me and my family. I want to get better and read about the SCD here. I just bought the book and have started phase one. I just talked to my GI and she says that as I do not have strictures a change to my diet will not help. Do others think that is accurate or is she a pill pusher and stuck in the traditional med ways. I am taking Pentasa and Kapidex plus supplements. Your feedback is greatly appreciated
Thank you
David
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


Valerie3
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Date Joined Feb 2009
Total Posts : 529
   Posted 3/29/2010 1:47 PM (GMT -7)   
I have severe Crohn's and have not gone on a diet. I just had surgery 2 weeks ago, but prior to that, I had several partial obstructions and quite significant narrowing among other things, and the only change that I found was necessary to my diet was avoiding lettuce, something that I hope to be able to reincorporate into my diet once I fully recover from surgery. Neither of my 2 GIs have been big advocates of diets, and I don't think that it would be something that I personally would try unless it was as a last resort. You were only diagnosed a few weeks ago, and Pentasa is an extremely weak medication that doesn't work for many. I would honestly suggest going on Entocort (a steroid, but it is not systemic, so you don't get the side effects like with Prednisone - I have been on the high dose for over a year with 0 side effects). It would be the next step up, and if your symptoms are mild, most likely something that you could take for the short term (6 weeks, then taper down), and use Pentasa as a maintenance med after. If you still experience symptoms after that, I think it would be a better time to reevaluate your diet. The thing with the SCD diet is that it is extremely restrictive and you have to really commit to making it work. It definitely isn't a change that I would take lightly.

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/29/2010 1:49 PM (GMT -7)   
The SCD diet remains a hypothesis, and has never been tested to see whether it has a significant effect on the course of Crohn's disease. Since Crohn's is a relapsing and remitting disease, it's possible that the improvement some people report has occurred by chance; without controlled trials we can't know. Therefore, doctors are unlikely to recommend the diet as they are trained to look first for evidence of efficacy. I would definitely not call this pull-pushing; it is their responsibility to recommend treatments that have data to support them. If you want to try a diet that has been proven effective in published clinical studies, you could try a course of enteral nutrition for a few weeks. If it's going to work, you'll generally see improvement within the first 10 days, so you don't have to stick with it very long if it isn't effective for you.

DaveF
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Date Joined Jan 2010
Total Posts : 1109
   Posted 3/29/2010 1:54 PM (GMT -7)   
cheers, and thanks. Although my symptoms are mild I am sick of being sick.
The restrictive diet would be easy if I knew it would work. I have given up smoking and drinking over the last year and am eating about 95% healthy anyways. This is just a little more healthy and some different stuff. But I do not know if I can trust the doc. I do not want this level of restriction if I will get no benefit.
If I really believe SCD will not help I think I will go Makers in any case cause it is much less restrictive and it makes common sense to me. (I just started making probiotic yogurt and really like it, yum, yum)
David
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


DaveF
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Date Joined Jan 2010
Total Posts : 1109
   Posted 3/29/2010 1:57 PM (GMT -7)   
With all the folks doing SCD, and many posting results, without any hidden agenda, why do you think there has been no clinical trails?
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 3/29/2010 1:57 PM (GMT -7)   
Unfortunately, even if you go on a diet, nothing you do is going to be a quick fix. I understand that you're sick of being sick, but no matter how you do it, it's going to take time. If you go on something like Entocort, you could see improvement within a week, maybe 2 weeks max. At least then you would know that you're treating the underlying inflammation, because unfortunately, although diets work for some, they don't work for all. It's really your choice what you do in the end, but even if you do go on a diet, you will always need some sort of maintenance med at the very minimum.

DaveF
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Date Joined Jan 2010
Total Posts : 1109
   Posted 3/29/2010 2:04 PM (GMT -7)   
Thank you for the valuable feedback and insight !!!
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 3/29/2010 2:37 PM (GMT -7)   
Actually if you were to try the diet, you could see results almost immediately. Not necessarily less diarrhea at first, but possibly less bloating & pain in general.

When I tried the Maker's Diet, I had more diarrhea at first because my body went into detox, but I had less painful bloating.

Entocort and prednisone don't help me enough. I find if what works the best is a combination of things: regular meds + a natural healthy diet + herbal remedies and teas like chamomile or green tea + probiotics and digestive enzymes.

Best wishes!

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 3/29/2010 2:43 PM (GMT -7)   
You know Roni, I think that is where I am going to end up. I am running to do all you are doing, except the digestive enzymes. I am still reading about that.
Somehow, I can not accept that diet has nothing to do with it. I guess the very worst that can happen is that I eat healthier.
Thanks
d
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/29/2010 2:59 PM (GMT -7)   
Dave,
This disease is so individual it is about finding what works for you. I think doing what it takes to get better is a good idea (med and diet might work better then either one alone), and in all honesty you are on a good maintaince med, but if you are still having problems then you might want to think about a different drug.
TC,
Navy


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_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) : 3/29/2010 4:03:31 PM (GMT-6)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 3/29/2010 3:05 PM (GMT -7)   
lol yes I love when doctors prescribe new drugs that have only been tested for a few years with min success and who knows what long term effects but they won't recommend a healthy diet that has been around for 90 years. Having said that, since you are so mild I am sure using a mild drug and diet together can't hurt anything.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 3/29/2010 4:08 PM (GMT -7)   
dfdavedf said...
You know Roni, I think that is where I am going to end up. I am running to do all you are doing, except the digestive enzymes. I am still reading about that.
Somehow, I can not accept that diet has nothing to do with it. I guess the very worst that can happen is that I eat healthier.
Thanks
d


I felt the same way, eating a healthy diet had to do SOMETHING good for my body, even if it didn't put me into remission. Luckily, it's done quite a lot for my body. I'm healthier then I've been in many many years, and have actually gained weight (without presdnisone turn).

Roni's right, most people see some improvement quickly, even if it's something smallish, like less gas. There was a guy on the BTVC board who felt that the improvements were too small to stick to the diet, went back to eating his old way, and quickly realized that those small improvements were actually bigger then he originally thought.

It takes time for people to learn all there is to know about SCD, and to eliminate all the illegals they can (illegals can hide in many foods we never thought they would, like certain brands of chicken). Try not to stress, and just do the best you can. Good luck!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/29/2010 6:15 PM (GMT -7)   
I have never tried the SCD diet but I did start a meat & dairy free diet and that has helped me personally.  I read The China Study and realized that there really is a big connection between the food we put in our bodies and the diseases we deal with.  I recently started learning more about Macrobiotics and think that is something that can benefit me as well. 
 
You don't realize how little some people know about nutrition and what they think passes for a healthy diet - and the GI drs aren't much better sometimes, they will send me home on a low residue diet of Wonder bread, white rice and Ensure.  No nutritional value at all, but hey, it's low residue.  I decided that for my insides to heal I was going to need nutrients and vitamins and a lot of things that you don't get from the standard diet we often eat.  I eat a lot of vegetables and whole grains and cut out meat, dairy and white sugar.  I also take a lot of supplements and probiotics and run and do yoga for stress and exercise - as much Vitamin D as I can get - and overall try to have a healthy lifestyle.   
 
I firmly believe that diet is connected to my Crohn's and changing my diet long-term will help me.  I have also had a few medicines stop working and I think that having a back-up plan is important if they all stop working.  I also do not want to have surgery and am doing everything I can now to prevent that from happening in the future.  For me it's not about not eating things that upset my stomach, it's about a diet and lifestyle change that will improve my overall health.
 
Good luck with whatever you decide to do for you!! :)
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, Humira, 55 30 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 4/6/2010 7:01 AM (GMT -7)   
Quick update
Started on phase one SCD, but added garden of life primal defense probiotics. For sure I am feeling better. I have been traveling cross country but still trying my best to comply and I can not believe it but still feel good. I am not sleeping which is a drag, but hey if that is the worst I have to whine about it is a great day. And I love the taste and texture of the homemade yogurt.
I really think I will end up on SCD with some of the philosophies and supplements of Makers.
Cheers to all and of course I can not say thanks enough for the info and support
David
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/6/2010 7:10 AM (GMT -7)   
Congrats! I'm glad you've noticed some results already. I was just going to butt-in and say that I've not had any strictures and SCD totally worked for me. I noticed IMMEDIATE results (as in the first 4 days) and symptoms improved over time. I stayed on it faithfully for 6 months, but then quit because I was pregnant and went into remission. Anyway, any time I'm feeling cruddy I revert to the diet, or at least the major principles, and I get some relief. So, I say you have nothing to lose by trying it. I wish you much continued success!

dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 4/6/2010 7:22 AM (GMT -7)   
I believe that diet is very important to the this disease. I followed the SCD diet for awhile with great results. It has been very difficult for me to be faithful d/t traveling so much lately. Staying in hotels makes it difficult but for the most part I still attempted to do my best. Back home now and will be making yogurt and chicken soup today. I LOVE food! So it is hard. And I admit I have a lot of guilt r/t failing on this....but today is another day!

Having said that.....I feel frustrated when my GI doc won't look at anything natural. The best doc I ever had was more holistic (his wife was a DO) but I live in another state now. I bought a cookbook for SCD with geat recipes! The foreword was by an MD with Crohns. When someone is diagnosed with Diabetes, education is geared towards diet. Yes the correct diet will not cure Diabetes but everyone knows it is a huge factor. I believe it is the same with Crohns. And as this doctor stated in this cookbook, it is her hope as well as mine that someday the first treatment regimen in Crohns will be diet...even if that includes meds! What if when you were first diagnosed the nurse or MD spent time with you on lifestyle changes including diet that could help you manage this disease? I am sure some of you did receive this but I sure didn't. I am a nurse and that is what I hope to do someday....and that is what I do currently....support and educate people, but someday, I hope it is more in the area of Crohn's and management regarding diet and lifestyle.

I say go for it! If nothing else, it makes me feel like I am taking some responsibility back and control over my health. Which with me personally, is very important.
Diagnosed with CD 2006.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 4/6/2010 10:15 AM (GMT -7)   
dinkydee, I absolutely echo what you're saying!
During last year I've found that quite a few persons have discovered that a super choise is using some of the traditional medicines and the Specific Carbohydrate Diet AND Low Dose Naltrexone (google LDN) leads to a great combination doing wonders.

Even kids are doing great on this!/Bee

chatter
Regular Member


Date Joined Oct 2009
Total Posts : 51
   Posted 4/6/2010 10:27 AM (GMT -7)   
what is the SCD diet you are all talking about?

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 4/6/2010 11:43 AM (GMT -7)   
The trouble with the SCD for me is that it's all theoretical and if I'm going to give up most of what I enjoy, I'd like there to be more than theory behind it. If I had type 1 diabetes I'd take my insulin shots and control my carbohdrate intake; if I had Coeliac Disease I'd cut out gluten. But for Crohn's there is no diet which stops the underlying disease process. And that gets to me. Because I would probably follow it if there was one, but I just can't bring myself to do something not validated by science and which amounts to essentially a hopeful shot in the dark.

I also have a sneaking suspicion it wouldn't make the blindest bit of difference for me. Well, a gluten-free diet didn't.

PS: chatter, it's a diet which was devised by a woman called Elaine Gottschall for IBD sufferers. She wrote a book about it called Breaking The Vicious Cycle. SCD stands for Specific Carbohydrate Diet.

Post Edited (NiceCupOfTea) : 4/6/2010 12:48:11 PM (GMT-6)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/6/2010 12:26 PM (GMT -7)   
chatter said...
what is the SCD diet you are all talking about?


SCD = specific carbohydrate diet
do a google and you'll find the site.

I don't actually do the SCD because I'm allergic to nuts. But I do follow many principles of the maker's diet, which I find excellent.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/6/2010 1:17 PM (GMT -7)   
NiceCupOfTea, one way of looking at it is that you have nothing to lose by trying SCD (you can always go back to your old diet), and everything to gain. The number one way I know SCD is working for me is that all 3 of my fistulas healed (not even Humira helped my fistulas). That tells me SCD has significantly cut down on on disease activity. I don't have joint pain anymore (including from the TMJ in my jaw), which indicates inflammation in my body is way down as well. I don't have solid proof right now that the disease is inactive, but so many of my symptoms are improved, it's worth it all the same.

There have been several recent testimonials at the BTVC board, which encourage me as well. Several people have reported getting "perfect" colonoscopy reports. Their doctors say that if it wasn't in their records, they would never guess these people have bowel diseases. Between my improvement, and hearing of other people's improvement, I'll happily eat SCD for life.

And congratulations on your progress David! It's great to hear that you're feeling so much better yeah
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/6/2010 7:59 PM (GMT -7)   
I don't know of any meds that stop the disease either. At least, not for me.
Eating the right kinds of foods does help fight inflammation and help with healing. So does taking meds. So does taking probiotics and other natural remedies. That's why I do all.
Besides, why would the medical field want to conduct studies on food and crohns? There's not much money in treating crohn's with food.

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 4/8/2010 9:30 PM (GMT -7)   
Hi David!  My computer crashed, otherwise I would have responded earlier.  smilewinkgrin
 
I was just diagnosed in Nov. with my only problems being excess gas and fatigue.  I decided, on advice from a friend who has Crohn's, do go on The Maker's Diet to start.  This was the easiest thing since it was so restirctive.  After I completed the first two phases, I bought BTVC and started to follow that.  I found the recipes easier to find and use in BTVC than in TMD.  I have been on the diet going on 5 months now, and have been very faithful....never knowingly cheating.  My gas is almost non-existant, and my constipation cleared up within the first month on the diet.  I believe Crohn's is an individual disease, and am glad that this diet seems to have done some good for me.  I am getting some blood tests done to check CRP levels, and we'll see if that has come down with this diet.  All I know for now is that it works for me! 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Being treated by a Naturopath who himself has Crohn's.


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 4/14/2010 3:58 PM (GMT -7)   
Quick update. I am trying my best to be 100% SCD compliant, but traveling makes it not possible. I have a ton more energy. People who know me, are saying I look fit and healthy. I have almost zero pain. Eating home made yogourmet probiotic yogurt with raw unpaturized honey and loving it. Just had the spaggetti with spagetti squash and it was great. I am not finding the diet so restrictive, cause it is making me feel not sick. I keep telling myself, it is not restrictive just different.
Thanks for the encouragment and info.
I think this whole deal is like going to war, you only can truly relate if you have been there and it is so calming to hear from good folks who have been there
Thank you, thank you
David
Diagnosed March 3rd 2010, Kapidex 60mg, Pentasa 3000 mg, D 50,000 (weekly)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/14/2010 10:14 PM (GMT -7)   
Great news David!

It's good to look at SCD as a lifestyle change, something like how diabetics etc. have to change their lifestyle to stay healthy. Everyone who has a disease has to make adjustments to accommodate it.

I had SCD lasagna for the first time a couple weeks a go, with zucchini in lieu of noodles. I couldn't believe how it tasted exactly the same! I didn't miss the noodles at all :-).
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR, Zyrtec
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, Magnesium, Coconut Oil, Garlic Oil, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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