SCD help, or any other ideas to help my Crohns??

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Red Oleander
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/18/2010 5:06 PM (GMT -7)   
So, a bit of background. I'm currently 20 years old, been diagnosed with Crohn's disease since I was 18, and have experienced NO relief since being diagnosed. When I was first diagnosed, it was termed mild-moderate. I was put on Asacol for awhile, then Entocort EC, then Prednisone, then Azathioprine (Imuran), then Humira which was the first thing that worked, however it only worked for about a week, and then I stopped responding. Got another colonoscopy, and my diagnosis was changed to severe Crohn's disease, after finding extensive damage, and many ulcers. My Crohn's is throughout my entire colon, and the ileum, and not much in the small intestine. I then tried Methotrexate and Remicade, which didn't work. I then tried an experimental treatment to treat MAP using antibiotics used for tuberculosis, as some believe Crohn's disease is caused by a MAP infection. Didn't work. I've started getting severe lower back pain in addition to all of my Crohn's symptoms, which include cramping and stomach pain, bloating, gas, diarrhea for every bowel movement which tends to be 6-8 times a day, blood present about 1/4 of the time, fatigue, and nausea (especially in the morning).

So, after all of that not working, I'm now seeing a naturopath who's recommended the Specific Carbohydrate Diet, and am not on any medication, other than supplements. I've been on it about 4-5 weeks, and have not gotten better, at all. I've followed it pretty religiously, however I moved on passed the intro diet probably sooner than I should have, since I added in some cooked vegetables while I was still having diarrhea, and occasionally eat some raw fruit. I'm experiencing the same symptoms as listed above, which I've been having for two years now. So far, the only benefit I've found is that I've lost some weight (which is good for me, because I'm one of the weird people that have gained weight since being diagnosed).

So, my question is. What should I do? Should I re-start the intro diet, and make sure not to move on until the symptoms have gone? How long could that be? Am I just one of the few people the diet doesn't work for, just like I'm one of the few people that all the medications don't work for? And if that's the case, what's left for me to do? I'm a little scared, and weary of the drug trials my GI doctor has wanted me to try, is there anything else people have done to get better?

Starting to lose hope for ever feeling better again. :( Any advice, or help will be greatly appreciated. I really want to start feeling like a young adult again!

Post Edited (Red Oleander) : 4/18/2010 6:23:45 PM (GMT-6)


NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8545
   Posted 4/18/2010 6:52 PM (GMT -7)   
I wish I could help, but I don't have any bright ideas. Has surgery ever been mentioned?

Diet-wise, have you ever tried a low residue or a bland diet? I don't follow a strictly low residue diet but I have been tending towards that way - that, combined with eating the minimum required for sustenance, does seem to have helped. It's a bit dreary, especially if you like your grub. Not really an acceptable long-term solution, IMO.

Ah. Finally had a vaguely original idea. Have you tried an elemental diet?

PS: Can't comment about the SCD as I haven't tried that, but hopefully others who are on it will comment.

spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 4/18/2010 6:54 PM (GMT -7)   
You may be eating something that's aggravating your symptoms. It's recommended to do the intro for at least 2 days, and then start adding 1 new food every 2 - 4 days. That should give you time to gauge whether the new food makes things worse, better, or the same.

Definitely ditch the raw food. You won't want to try raw until your symptoms have cleared up.

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


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/18/2010 8:49 PM (GMT -7)   
You might want to consider trying LDN (low dose naltrexone) along with the SCD. It's possible people with Crohn's rather than UC might take longer to benefit from SCD. (Don't do what my daughter is doing - modified SCD - because we know that, by itself, it doesn't work...it might help but does not induce remission.)
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 4/18/2010 8:53 PM (GMT -7)   
So sorry to hear about your troubles!  It sounds like you've been on one serious ride since diagnosed.  :(
 
I've been on the SCD since diagnosed in Nov. 2009.  BUT, what I started with was the first two phases of Jordin Rubins's "Guts to Glory" book (he's the creator of The Maker's Diet).  I did this because I hadn't found SCD at that point.  What I liked about starting that way though was that I was forced to take pretty much everything out of my diet except for Brasco Broth (a glorified chicken soup) and yogurt for almost 3 weeks.  This got me past any cravings, and gave me, in essence, a clean slate to start from.  I then found SCD, and used that as a guidline for what to eat, slowly introducing new foods (maybe one new food every couple of days) to see if there was a reaction.  I still make the Brasco Broth, and try to eat it at least once a day.  If I am not doing so well, I will eat it more often than that.  It gives my gut a chance to rest.  I agree with spooky to take out the raw stuff. 
 
Have you tried Enteral Nutrition?  Basically a liquid diet? 


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.

Post Edited (newfoundsun) : 4/18/2010 10:29:10 PM (GMT-6)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/18/2010 10:27 PM (GMT -7)   
Red Oleander, could you give us a list of what you're eating and what supplements you're taking? We might be able to pick out what's holding you back. For instance, eggs can cause problems for people who have diarrhea.
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


coyotegirl
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 4/19/2010 7:45 PM (GMT -7)   
Hi,

The diet part of crohns can sure be frustrating. This is what I currently do which does not mean it is for everyone who has crohns. No dairy, no packaged, no processed foods, no crap. Think what Michael Pollan would eat! I try to eat a vegan based diet (no raw foods when I have a flare up). Sample day: I use a juicer (extractor) and have a romaine, kale, celery, apple, lemon juice every morning. I try to eat bananas later in the morning. Lunch might be rice with roasted tofu-orange-asparagus. Dinner might be mashed sweet potato and salmon. My two vices I can't quit - coffee and wine!

That sounds boring but I love cooking and eating and have numerous vegan, Indian and Asian cookbooks. I have some books about crohns that promote this type of diet (little different than the SCD). I do, however, struggle to stick with this. I ate a massive salad today, chocochip cookies and a vanilla latte. Yes, I am not feeling so hot about now! And I would be lying if I said that things like this don't happen often because they do!

I just had a flare up about 2 months ago. I am a PhD student and finally let stress take over. After it passed, I ate instant mashed potatoes, packaged gravy, jello, cottage cheese and canned peaches for every meal for 1 month. I hated it because although I could eat it, it was like void of nutritional value. I really believe there is something to be said about a healthy diet when your body can tolerate it.

I have had crohns since I was 16. I was really sick. I had surgery in 1993 and have not had medication or any treatment since (I'm 38 now). I get bathroom bouts and have the occasional flare up but I believe diet and exercise have helped me. Try things slowly, read about all the possibilities for healing, try a juicer that separates the fibers - try yoga, walking or hiking. Stay positive which can be hard at times. You are still young so just don't let crohns control you. You control it.

Take care-





smilewinkgrin

Red Oleander
New Member


Date Joined Apr 2010
Total Posts : 3
   Posted 4/19/2010 10:42 PM (GMT -7)   
Thanks for the responses!

I'm definitely going to try low dose naltrexone, my naturopath suggested it, and it looks really promising.

After reading the replies, I'm probably going to start on the intro diet again, maybe even going liquid, if it complies with SCD. Although I worry about not getting enough calories on a liquid diet.

I have indeed been eating eggs, ever since the intro diet. So I should cut those out? I generally eat chicken or ground turkey, occasionally ground beef or steak, and I always make sure they don't have any bad ingredients. I have almond butter occasionally, and fully cooked vegetables like zucchini, carrots, cabbage. I have bananas, and avocados, and again raw fruit, which I will definitely be taking out. I occasionally have prunes, which also would need to be taken out. I also have used spices since the beginning, like minced garlic, salt, pepper, oregano, etc., but always made sure they didn't have illegal ingredients. Should I cut out the spices?

Also, when I did the intro diet before, I did it for about 3 days, but started adding stuff in after that, definitely too rapidly after hearing what you all are saying. Should I keep doing the intro diet until my symptoms go away? Last time I did the intro diet, my symptoms didn't go away, and actually the diarrhea got worse. Or should I just do the intro diet for 2-3 days regardless of my symptoms?

Thanks again for all the help!

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 4/19/2010 11:14 PM (GMT -7)   
You don't want to do the intro diet for longer then 5 days, regardless of whether you continue to have symptoms. I'd do at least two though. I'd also cut the eggs out of the intro, just to see if that helps your D. I think salt and pepper are the only spices you should use on intro as well. If the D doesn't improve, you can add eggs in again and see what happens. After intro, add one new food (or spice) back to your diet at a time. Give each new food at least 2 days (some people go as long as a week, but that's probably excessive) to see if it changes your symptoms. If you at least don't get worse, then the food probably works for you. Keep a food journal to look for patterns with foods and symptoms.

Most of your foods look pretty easy to digest, except for the raw fruit and prunes. I'd probably hold off on cabbage for a little while too, since it can be gas producing. Have you ever see the stages? They were initially made for autistic kids (hence the lack of dairy), but they can be a guide to what foods are typically easy to digest. You don't have to follow them at all if you don't want, but if you're interested, go to http://pecanbread.com/p/how/stages.html

It doesn't look like you're eating the SCD yogurt. If you can't tolerate it, then you really need to get some acidophillus pills. Otherwise, as you kill off the bad bacteria, yeast are likely to take up their spots. You want to fill up your gut with the good guys :-)

And lastly, for more help from some other SCD veterans, consider joining the BTVC group at http://health.groups.yahoo.com/group/BTVC-SCD/ . I've learned a lot there!

Good luck! I hope this time around you find some relief :-)
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


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 4/20/2010 6:02 AM (GMT -7)   
Another thought would be to try newfoundsun's approach; the Brasco broth and yogurt. You could even do that WITH the enteral nutrition. Just a thought!

And still another thought would be to try the liquid diet exclusively until symptoms go away....it could take weeks. My son did this on two different occasions. He was fortunate; his symptoms went away in about 10 days. Of course, everyone is different! His doctor had to impress upon him the need to drink far more than he was, in order to take in enough calories, but it CAN be done!

Like spookyhurst, I would recommend eating home-made yogurt if you can. Any possible way of getting more beneficial bacteria into your diet should be examined! A great book with a small section on making your own fermented foods (for their beneficial bacteria) is "Nourishing Traditions" by Sally Fallon. Also, as spooky said, the yahoo group for the SCD is GREAT!

Best wishes to you!!!
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.

Threads discussing diet:
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


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 4/20/2010 3:21 PM (GMT -7)   
Hi , Just curious how long you tried each individual medication for. You seem to have tried several in only 2 years. Maybe you didn't give each med long enough to kick in. From my research most need several months before they begin to work. I do think that LDN is worth a try.

BilliamH
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/9/2010 10:55 AM (GMT -7)   

Many people including me are alergic to gluten, a naturally occuring thing in wheat, rye, barley and more recently oats.

I highly recommend a diet strictly free of these grains.  This works for many people with digestive problems.  It means reading all ingredients, for example some brands of soy sauce have wheat in them.  And no beer, or grain based booze.  Its not bad once you get used to it, corn, rice, potatoes, yams, beans, wine, rum, tequila and lots more fill the gap just fine.  Most grocery stores now stock foods labeled gluten free, from gluten free bread and oats to pre-made pizza crust and Chex cereal.

Its worth trying because for me its the difference between constant prednisone and a normal life. 

I love beer but it messes me up, good thing hard cider and Mexican food are available.  Good luck, and try it!


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 5/9/2010 5:37 PM (GMT -7)   
The SCD took 4 months for me to see results. You might want to think about using polymeric shakes to get into remission then start the SCD again.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission

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