Bit scared I'm relapsing - diet question

Never mind...

It's late at night and I think I'm just clutching at straws... :-/

My cousin has been in a major flar since Jan with massive inflammation in the illium.  Also since Jan, she has been following the SCD diet 100% to the absolute letter without any cheating what so ever , and it has done absolutely nothing for her to relieve her symptoms of pain, or reduce the inflammation.  The only thing that has helped a little is predisone which she is on at 10mg.   

Now she has only had extreme pain and never had any D with this flare, so maybe without the diet she might have been worse off, but as for inflammation, the diet has done absolutley nothing to reduce the pain or the inflammation.  Matter of fact, it is getting worst.  Just last week she was in the hospital for 4 days because of a massive pelvic abscess she developed during the last few months, and she is now scheduled for surgery next Wed to remove about 10 inches of her illium and the valve.

From my research into this diet, I believe it is really good and can be of great benefit if you are newlly diagnosed with CD, or you have a mild form of CD, but if you have a severe case of CD with a lot of inflammation, I would not count on this diet to reduce the inflammation. It might make the symptoms less, but at least in my cousins case, it has done nothing to relieve the inflammation.

After the surgery, my cousin plans to continue following the SCD diet with the hopes it will help her maintain remission, but also she still will need other drugs like pentasa or imuran just to play safe.

 

Hope you feel better. I would never have the willpower to do the SCD. When I'm flaring I stay away from diary mostly and of course raw fruits and veggies. That helps me alot. I very rarily eat fried foods even when not flaring (and if I do I know it later that day or the next morning) and spicy foods are out too. Anything more than this would just be too much for me.

Speedy recovery, NCOT. Sorry, I haven't tried SCD, too. But it seems that we can never get rid of pred. I'm having a proctitis flare up and I'm being treated w budesonide enemas. Can't you just up the dose for a very short time until you become better and then taper it?
Hope you feel better soon:)

A few comments
1) I have been doing SCD for about 2 1/2 years. I took me from a moderate case (my doc said I had a 6 on a scale of 10 level of severity), to remission
2) It did not work for the first 6 to 8 months because I had to figure out all the tweaks to the diet for me including, no raw veg, low carb, very limited honey, no nut products, and many more. The diet tells you the maximum stuff you can eat, not that you can eat everything on the diet. Very very few folks can just start eating SCD and they get better. Also it takes years to get sick, it takes time to heal. SCD for most is not a few week wonder drug that makes things all better. Additionally it is often two steps forward and one back. I am 52. I have been sick a long time. Although I did not like it I understand why it takes a long time to get better.
3) I was sick daily every day so was very, very motivated to make this work. When I started I was in the middle of a 18 month flare. 40 mgs of pred, 8 x 500 mgs of pentassa, not to mention the money I spent including about $8K in testing and doc visits and the pentassa, then entocort costing about $3 k per month. Crohn's is for wealthy. As well as feeling so crappy all the time I could not afford to have Crohn's (3 kids in college in addition to all this DD fun)
4) While understand folks who suggest figuring this out yourself, that was not my approach. My thought was someone has to know more than me. So I read every diet book out there, including makers, Breaking the Vicious Cycle, Low Res, Fod Map, Healing Traditions and many more. Then I picked a diet and did it 100%. I still needed a food journal to figure stuff out, but I never went off the diet even for a day or a meal. SCD is different, if you are not doing it 100% then it is highly unlikely you will get healing results, For SCD to work you have to be fanatically compliant
5) After a while the "restrictive diet" becomes your norm. I am going our this morning to buy some fabulous baby spinach, huge bunches of basil, crazy good nectarines, and a bunch of other meat and veg from the farmers market (almost all organic). I will prepare my food for the week today. I eat fantastically healthy and flavor foods that when I serve to others they love it. However, I almost never eat in a restaurant, and there are times when I have to go hungry because there is no food to buy I can eat.

For me it is so worth it. I know there is no single answer but I also know how much you have struggled and I really hope you find a path that works for you (diet or something else). I hope a slightly different perspective is of some small help
Dave

Woah, thanks for the replies, folks :p

Read them all, but rather than reply individually, think it's just easier (for me <_<) if I reply generally. Firstly, the worst of the cold does seem to have passed, thank god. Not sure about the spiking temperatures yet; think I'll have to wait a bit longer to decide if they were down to the cold or the Crohn's. My stricture is playing up sometimes, but it's more uncomfortable and annoying than painful at the moment.

Secondly, I have been thinking a lot about diet but am woefully undecided what to do about it - surprise surprise. From what I have garnered here and there on the internet, the theory behind the SCD is by no means infallible. That's not the same thing as saying I don't think the SCD works, because it clearly does for some people. I just don't think it necessarily works for the reasons Elaine gave, at least not all of the time. Crohn's is such that I am convinced one day different etiologies (causes) for it will be found. And with it, specific triggers. The thing about the SCD is it removes so many foods - including all processed ones - that it's also bound to be removing a large number of potential triggers at the same time. An obvious one is gluten, which BabeInTheWoods mentioned; and indeed going gluten-free does help a lot of folks with their symptoms. (It didn't me, unfortunately, when I tried a GF diet a few years ago.) But gluten is just the tip of the iceberg: there are hundreds of ingredients used within food manufacturing.

By going on the SCD, you are also avoiding potentially contaminated food as well. That might make a difference too, with some people.

With this in mind, I'm contemplating going on a no-processed-foods diet, but not an SCD one. Personally it's too difficult for me. I need something that's quite easy to follow and allows for a few carbs - I'm sorry, I just need some carbs and veggies don't count >_<. Would also have to decide what sugars I can allow. I'm not convinced honey is a great idea and, indeed, it's banned on the low FODMAP diet. In the meantime, I have yet to find any real evidence that sugar is harmful for Crohnies. Doesn't mean I wouldn't try to cut it out anyway, certainly at least for the first few weeks.

Somebody (minnie) asked me about upping the does of Pred: so, so reluctant to do that except as a last-resort option in case I build up a dependency. I did think about doing that, though, 'cos at the beginning of August I'm meant to be going away for a 2-day break. Got a room booked for 1 night, can't decide whether to book for 1 more night. I just don't know how I'll be by then and don't want to waste the money if I'll be too ill to really enjoy it. So chuffing annoying... :-/

Anyhow... thanks again, folks :p

NCOT....I've been doing research on IBDs for a long time. Gut Bacteria is the only thing that makes sense to me. SCD does addres this but there are other things that address this as well. I do think cutting out sugar/dairy/gluten for 4-6 weeks intially is very important. But I think after that if you take things that keep the bad flora in check a few carbs here or there won't hurt. I come from a big Italian family so it's virtually impossible for me to avoid carbs! When I start to feel a little gassy I'm back to protien and veggies for a week or two and it brings me back to normal.

The one thing I never understood about the SCD diet is why it doesn't incorporate some natural anti-micobial supplements??

NiceCupOfTea said...
@C6H12O6 (just noticed for the first time this is the chemical formula for glucose :p) - Thanks for your post. I'm glad SCD worked so well for you. I'm still trying, without much success I have to say, to wrap my head around the can of worms that is Crohn's and diet.

@livingwell - I've been doing some research on IBD too, and it's not so simple to me. We still seem to be decades away from discovering the causes, to be honest.

Anyhow... *long-suffering, martyred sigh* I suppose I should really experiment with a sugar-free, dairy-free etc diet for a few weeks minimum at least :-/

IBDs don't magically "appear" from the sky. And if you are waiting for a drug comapny who does practically all of our medical research to come up with a cause\cure for a disease that can be healed by diet you'll be wating for a long time. Your diet might be a good idea. Good luck.