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

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)

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!

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? 

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-

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

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.

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.