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On SCD Diet- how to get off Prednisone?

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Ulcerative Colitis
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Posted 9/15/2011 2:43 PM (GMT 0)
My husband has Ulcertive Colitis and began Prednisone + 6MP in Feb 2011 and then started the diet in late June 2011. He was feeling pretty good on the diet until he tried to taper off the pred. In late August 2011 he was down to 2.5mg and had a flare up, so he's now on a high dose of pred again. He's willing to stay on the diet (even though he doesn't feel sure it's working) while he tries to get off the pred this time but we're looking for tips to help him feel ok, stay on the diet, and stop the pred.

Have any of you done this? If so, how? Any tips for successfully getting him off the pred while maintaining the diet would be very, VERY much appreciated.
Posted 9/15/2011 2:47 PM (GMT 0)
CBran, being on a special diet has never helped me. It seems to help some and not others. I would recommend that he consults with his GI and ask for the next options. Is he using any rectal meds? oral mesalamine?
Posted 9/15/2011 2:49 PM (GMT 0)
Is he on a probiotic supplement? What about rectal meds? If he's not allergic to mesalamine-based drugs, I highly recommend he try
mesalamine enemas, or potentially steroid enemas. Supplements such a turmeric and aloe vera juice have helped other. There is also fecal transplantation, LDN, and other non-main stream treatments. There's also remicade, which is a main-stream med, but has risks that the other meds don't.
Posted 9/15/2011 2:56 PM (GMT 0)
Thanks for the speedy reply, fruitgirl. We're trying really hard not to put him on remicade. And unfortunately, he is allergic to mesalamine. He's also tried cortisone enemas but they make him feel bad.

Someone else has recommended a probiotic supplement but how do you know how to start them?

I haven't heard of tumeric or aloe vera juice yet. How much should be be taking? And does he take them together or is it a one-or-the-other type of thing?
Posted 9/15/2011 3:08 PM (GMT 0)
CBran, if you are going to add something, i'd recommend just adding one thing at a time so you know if it makes symptoms better or worse. i don't know what foods are included/excluded on SCD but he has to listen to his body and maybe some of the foods can trigger his symptoms. there isn't a perfect diet plan that everyone with U.C. can use so maybe he should experiment with different foods.
Posted 9/15/2011 3:22 PM (GMT 0)
A good-quality probiotic, in my opinion, will have a high count of live active cultures (mine has something 7 billion per capsule) and a mix of different types of bacteria. The "gold standard" probiotic for UC is VSL#3, which is available via prescription. I think it has to be prescribed as VSL#3 DS for it to be covered by insurance, and not all do even then. Hopefully some others with more knowledge will chime in.

I have never used aloe vera or turmeric. I was just listing some things that I have heard people have had success with.

I would definitely take banana girl's advice and just add one thing at a time, because it'll be too hard to tell what's working otherwise.

I have also never been on a specific diet for my UC. When I was flaring, I avoided high-fiber, spicy foods, but ate whatever sounded good other than that. After getting into remission, I resumed eating as I did in the past and am doing very well.
Posted 9/15/2011 5:25 PM (GMT 0)
I'm sorry- I forgot to specify the diet that he's on: It's the Specific Carbohydrate Diet (SCD) written about in "Breaking the Viscous Cycle."

The diet advocates adding foods one at a time and prohibits grain, sugar and starch. The idea is that since those foods are digested in the lower gut, they're providing fuel to the bacteria that is causing the IBD and eliminating those foods would starve out those bacteria and allow the colon to regain it's natural balance. (For the record, there are lots of success stories on the internet and in the book, but the diet has not been medically proven. We're just hoping for the healing results we've read about to happen for my husband.)

Thanks for all your help so far. We'll continue adding things one at a time and look into VSL#3 DS... please keep the ideas coming!
Posted 9/16/2011 3:01 AM (GMT 0)
i would give LDN a shot. If you search this forum, you'll see a lot of success stories. LDN is easily the lowest risk/highest benefit and success ratio treatment out there right now. The other two seemingly very successful treatments are combo antibiotics and fecal bacteriotherapy, but those carry more risks, are more expensive, or are simply harder to do.

The SCD never worked for me either. It appears to work better for Crohnies, but that's just speculation based on forums I've read.

VSL can actually be bought over the counter, but the DS (double strength) is prescription only, and is the only VSL version that has a shot of being covered by insurance. It's really expensive stuff, so the DS is the way to go if your insurance will handle it.

Something you can start now is psyllium seed powder. It will help bulk things up quickly, and can be quite a relief in the midst of a nasty flare.

You'll find all the answers you need for each of the treatments in this post on HW's UC forum. Just search for them :-) They have each been discussed at length.
Posted 9/16/2011 7:41 PM (GMT 0)
i am on a modified SCD & NSD (no starch diet) that helps me keep both my UC and arthritis under control. For me this diet is a success story.

i recomend your husband to keep a food journal - not all SCD legal foods are handled well by UC people. Modifications are necessary.

Good luck.
Posted 9/16/2011 7:51 PM (GMT 0)
He has been keeping a food journal since starting SCD.

This is the first I've read about LDN, so thank you. We will definitely be reading up about it.

Thanks to everyone for the responses so far, it's nice to know that surgery and Remicade aren't the last remaining options.
Posted 9/16/2011 8:52 PM (GMT 0)
SCDiet (modified) has been the reason for my improvement after meds failed to help me, but it doesn't help everyone. I also was on 6mp (but not pred) and my opinion is that if he is failing to wean off pred. at the same time he's on 6mp that 6mp is not working. But it sounds like you'd come to that conclusion and are looking for alternatives.

That is a bummer that he can't use the mesalamine enemas. IMO, if SCD is not decreasing his symptoms you have these choices: LDN in combo with SCD, combo antibiotic therapy (there are threads about people's success with this) and fecal transplant (unless you live in Australia it's a do-it-yourself project). There is also nicotine therapy, some people use patches and others use e-cigs.

The first time I tried SCD it didn't work for me. Years later I tried again and kept note of foods that although SCD-legal seemed to be a problem. For me milk products are a big problem and when I removed them I started seeing improvement.

Best of luck. Try things one at a time so you don't get confused about what might be working. In many cases it is not an overnight improvement so unless he's desperate give each thing 3-4 weeks trial.
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