# SCD and Those who it's worked and not worked



## wqcoleman (Dec 30, 2009)

*THREAD CLOSED -- SCD and Those who it's worked and not worked*

I'm hardcore into the SCD diet for the last 6 days.  

I'm getting a second opinion from a doctor in San Francisco:

Jonathan Terdiman MD
Center for Colitis and Crohn's Disease
2330 Post St, 6Th Fl
San Francisco, CA 94143

I'm currently under the care of Kaiser Permenante in Oakland - I wonder if anyone else has seen this doctor and if they had a good experience. I'm also interested if this doctor is open and not closed to the diet/food connection.

Reason I ask, after a series of discussions with my doctor about the diet connection he is rather dismissive.  I don't think he's closed to the issue, but he indicated to me that he's seen many change their diet (not sure through what diet program) and that it doesn't work.  He notes that there are no large scale clinical trials to develop data.  Yea, what pharmaceutical company is going to sponsor a study on how to eat better and get well - give me a break!

I've read so much on SCD and it appears that many get well, I've not seen those who have NOT gotten well.   I wonder if people have followed this  diet religiously and have not gotten well.  I can imagine that some have not, but it seems that the great majority of people do.  

If you haven't gotten well from the SCD diet, what was it that made you stop? (not that I'm looking for reasons to stop, I'm asking where the road-bumps might be - so I might avoid or learn from others).

My usual weight is 225, and now I'm 175, and still losing weight fast.  I'm as sick as I've ever been, and when I want to cheat on the SCD diet, I look at the food and say "If I eat you I will die".

Thanks and I look forward to hearing from others.


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## saidinstouch (Dec 31, 2009)

I don't know that doctor and haven't tried the diet, but I am being seen by another doctor at the UCSF gastro clinic.  These are some of the worlds leading physicians, so I would trust what he says about the diet not always working.  Basically it can't hurt to try if you can keep weight appropriately on the diet and give it a legit try.  But if you are losing weight too fast to safely do the diet, stabilize your weight, then try it again.  The benefits will likely take a couple weeks to see, so you gotta give it time.

I have found the clinic doctors to be very open to trying alternative treatments so you just have to keep open communication with him and I think you will find that your wanting to do the diet will be received reasonably well, as long as you are healthy enough to do so.

edit: for clarity, was your opinion about the diet not working from the kaiser physician or from the ucsf physician?


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## Creepy Lurker (Dec 31, 2009)

Seriously?  Terdiman?  He's called Terdiman, and he decided to specialise in bowel diseases?

Nominative determinism at it's best.


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## My Butt Hurts (Dec 31, 2009)

Creepy Lurker said:
			
		

> Seriously?  Terdiman?  He's called Terdiman, and he decided to specialise in bowel diseases?


LOL Creepy!

I haven't tried the SCD diet, but I would think that it would be like everything else that we try as Crohnies.  Some meds work for some and not for others.  Some foods bother some and not others.  Some diets help for some and not for others.  We all have different symptoms, we all have different side efects from the meds.  I would say that the only way to know if it will work for you is to try it.  A member on here named Crohns08 seemed to have some success on SCD. Maybe you can search their posts for some more info.
That's a good tip for when you feel like cheating though.
Good luck!


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## wqcoleman (Dec 31, 2009)

*scd*

yea, his name is terdiman... made me laugh out loud... that's irony.

SCD seems to be very appropriate for me - since nothing has worked so far, and I mean nothing.  I feel like I'm in a washing machine, and to have more drugs injected into me seems to be a complete and utter waste of time.

They want to cut my colon out - well they are gonna wait a while...  My grandmother had her colon out from cancer (we think she might be a crohnie), and she lived in misery the last 7 years of her life.

thanks for all your notes.


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## imisspopcorn (Jan 4, 2010)

Good luck.....Keep us posted. Many people say they are trying the diet, and then never really tell us how it went. I wonder if anyone out in cyber space has a SCD blog.

Edit: here is one I found.

http://en.wordpress.com/tag/specific-carbohydrate-diet/


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## CrohnsHobo (Jan 4, 2010)

I have been on the fence about starting the SCD diet/breaking the vicious cycle. There is a huge community of people that the diet worked for, but if you look there is a lot of people that it did not work for. 

I did a similar gluten free diet four three months last summer and my symptoms actually got worse. 

Like all things it seems to work for some and not for others.


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## wqcoleman (Jan 4, 2010)

*Day 10*

I guess I made this decision to try this diet when they said that the next course of action was to cut out my colon.  

I am on day 10 on this diet, I've had a few "illegal" foods - I tried a small flour tortilla with some steak and onions, it seemed to be "tolerated" in that I didn't have more D the next day.  

I am noticing a difference though.. I'm farting again, which was never an option, since it was just liquid and when I farted, well, we all know what happens.  The last three days I can fart, amazing.  That's after about 4 straight days of Chicken soup, as indicated in the diet starting point.

I did have some sliced grilled/caramelized potato (I made them with legal scd ingredients) with my eggs the other day, and my stomach didn't seem to like it that much - so I think I'll hold off on potatoes for now.  

I thought I would try some "illegal" foods to test how I felt - but no more than a "tiny" amount.  I do also put a TINY TINY TINY amount of half/half in my coffee in the morning after watering it down.  They recommend "weak" black coffee. I tried it, but I hate black coffee... and coffee for me is such a staple that I just looked online for others who have used a tiny amount of half and half in their coffee..so far so good.

I frankly don't know if I'm feeling better due to this new Humira shots, which I started 3 weeks ago, or this diet.  But either way, I'm not looking back.  I will continue with this diet for at least 3 months - and longer if it pays real dividends.  

I plan on trying some "illegal" stuff now and then, but no more than once a week.  

I do notice some "legal" foods don't really like me, like apples or any veggie that has it skin on it.  I skin everything before cooking it.  I plan on trying green beans later this week.  Also, cucumbers are great, and I seem to be digesting the seeds, which is even more encouraging.  I have a nice snack of cucumbers and vinegar (with some onions).

I think the hardest part is "preparing" the food... I'm not a cook, and now I need to become one.  My mom has offered to come out to help cook from New York (I live in San Francisco).  But it's just a matter of doing it and sticking to it, no matter what.

I know it's not for everyone.. but I have to say, her book makes a lot of sense and it really made an impression on me.  I only wish I had the power to do this 8 years ago when I started this adventure called crohns.


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## imisspopcorn (Jan 4, 2010)

I wish you success....I hope it gives you some relief.


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## shazamataz (Jan 5, 2010)

Sounds like you are doing well  I expect once things settle down more for you, you may be able to better tolerate the veges. I noted that the diet has a lot of things in it that I was told I couldn't eat due to narrowing, ie I am not supposed to have fibre! Perhaps once things heal we can go back to it again! I am amazed you can eat onions as apparantly they are a big problem for many.

Congrats on the farting. It's fun isn't it? I haven't had the fart and poop myself problem stopping me from farting , but I have noticed I seem to do it a lot less these days perhaps because all the air is trapped inside, or perhaps because I'm not getting much fruit/veg?

Keep at it though - sounds like it is doing you good


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## Mazen (Jan 5, 2010)

I tried SCD once for 2 months and it helped me somewhat with the symptoms. But I couldn't keep on it, as it caused me to lose weight and become irritable and depressed 

A good site for this is below, and it has a table showing stages on when to introduce each food as you heal. I could never go further than stage 1

http://pecanbread.com/p/how/stages.html


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## CrohnsHobo (Jan 5, 2010)

wqcoleman said:
			
		

> I frankly don't know if I'm feeling better due to this new Humira shots, which I started 3 weeks ago, or this diet.  But either way, I'm not looking back.  I will continue with this diet for at least 3 months - and longer if it pays real dividends.



This has been my hesitation with the starting the diet. I have been back on 40mg a day of Pred. for two weeks now and feel better than I have felt in five years. I am supposed to taper off soon and on to Humira. 

The last year I was only on Remicade and felt awful. So not sure if the diet would matter now that I am on the Pred.


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## crazycanuck (Jan 8, 2010)

I really hope everything goes well for you but to put it quite blunt I really don't believe in generalized diets especially for a disease like ours. We are all affected so differently by so many different foods that I don't know how somebody or a doctor could possibly come up with a diet that would work for anymore than a handful of us on this site. I'm sure that diet will work for some and I really really hope it will for you but unforunately I just don't believe these kind of things are for me.


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## My Butt Hurts (Jan 8, 2010)

wqcoleman said:
			
		

> I am noticing a difference though.. I'm farting again, which was never an option, since it was just liquid and when I farted, well, we all know what happens.  The last three days I can fart, amazing.


That is HUGE!  When I could fart without worrying about crapping my pants, I knew I was starting to heal.  I hope it gets better and better for you!


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## wqcoleman (Jan 10, 2010)

Day 17, things are ok today, some pain back, but nothing to write home about.  I have only cheated three times in 17 days - D is still there, but I'm hoping it will get better as I continue this crusade...  

I'll give myself the my next Humira shot (40mg) on the 13th, which is 3 days away.   I think I'm feeling better as a result of the diet and Humira possibly working, but I have really no idea, since Remicade was a complete failure and I wasn't hopeful about Humira.

The cheats have been 1) doughnut (i was in Chicago and the client brought in doughnuts from Dunkin Doughnuts, could no resist and then I kicked myself).  2) One flour tortilla and 3) 2 chicken scallopini's (the only thing on the menu that was 1/2 scd compliant, I took off most the breaded portion).

To calm my sugar craving, I have some orange juice or grapes, both work great and don't hurt me.  

I've started taking the seeds out of my cucumbers on my salad (very little salad greens, but salad is scd legal, just worried about the non-soluble fiber).

I do feel better, but unfortunately today was more of a bummer than the last 5, just felt "crohnie" today, more D than the last few days.  But I expect this to happen. I'm not getting out of the woods in 16 days with something that I've suffered with for 10 years.

So there's the update.


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## Peaches (Jan 10, 2010)

Thank you for the periodic updates - this will be invaluable to someone else looking into this diet!


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## lancelot (Jan 14, 2010)

I have been looking at this diet this evening...I'm VERY interested, please keep us up to date Coleman!



> I am noticing a difference though.. I'm farting again, which was never an option, since it was just liquid and when I farted, well, we all know what happens. The last three days I can fart, amazing. That's after about 4 straight days of Chicken soup, as indicated in the diet starting point.


Agreed, HUGE!  I'm envious...definately more of a shart for me...I found large doses of probiotics would get me to the fart stage, but it's hard to maintain the probiotic saturation required (due to expense and my inability to take pills on a scheduled basis).

Funny, the SCD mentions bacterial overgrowth from a poor diet can affect some more than others...I was wondering why I felt so wonderful after going on the new roots herbal purge parasitis kit for 30 days (think I did 2 kits; I skipped the fibre portion as I was having plenty of bowel movements)!

Think I'll get a food allergy test anyways just out of curiousity


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## wqcoleman (Jan 14, 2010)

lance,

they wanted to do surgery on me, and I told them to stick it you know where.. as i noted in other posts - I will try just about everything before they ever cut anything out.


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## lancelot (Jan 14, 2010)

Coleman, I was feeling the same way until a good discussion with the G.I. group led to the conversation that my guts are fistulizing all over hells half acre, and there's no telling where that ileum is going to fistulize next (hopefully not another organ, or my skin!).  That, and the dark mass that appeared on the ultrasound could have infectious tissue in it which would not allow me to go onto remicade/humira (could kill me).

At the end of the day, Even Elaine Gottschall (wrote the book on SCD) says (I can't seem to find where) that the SCD will not repair an already damaged intestinal tract, it can stop further damage from happening, but sometimes if the tract is damaged enough, it is worth removing that portion.

I found a few others who have had small bowel resections (imisspopcorn and Peaches, amongst others) and they have said that they led a better lifestyle after the damaged portion was removed.

These are the only reasons I am even considering the procedure (that, and I have the best G.I. team west of Ontario!).


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## CrohnsHobo (Jan 14, 2010)

The Crohn's Specialist that I saw at UCLA's IBD clinic yesterday told me to not bother with the SCD diet and that he felt they didn't really do much.


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## wqcoleman (Jan 18, 2010)

almost a month..
- no rice (can't eat it) tried it and doesn't work
- but overall sticking the diet..

some pain returned last Sunday, but nothing to scream about.  I feel ok this week, not as good as last week, but not everything turns up roses after trying something for the first time.  I fully expect to have problems.

But, I'm sticking to it -- along with Humira and 20mg of prednizone. I've decided not to taper for a while, I feel better on a higher dose, even though it's dangerous.

So.. there you go.


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## kenny (Jan 18, 2010)

I admire your resolve. Sounds like you have had a long battle with this to get there though. Removing the whole colon is pretty radical and aggressive surgery. I don't do the SCD thing myself but I have modified my diet heavily and worked it back up from liquid one or two foods at a time. 

I believe strongly that the meds are not there so we can eat whatever we want. We should not be medicating while stuffing junk down our guts.


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## iminflamed (Jan 22, 2010)

wqcoleman said:
			
		

> I'm hardcore into the SCD diet for the last 6 days.
> 
> I'm getting a second opinion from a doctor in San Francisco:
> 
> ...


I've done it, and it did work for me. However, as you already know, the diet is very time consuming and incredibly restrictive, I also lost a lot of weight. 

Im double majoring right now with about a year left of school and I just don't have the time right now to cook every meal for myself, this is the main reason I had to stop. Once I have more time on my hands I plan on going back on the diet. 

In the meantime, since becoming more educated on what foods are better for me, I really do try to eat as much protein as I possibly can. Me and my roommate have steak and chicken night once a week, I eat vegetables every opportunity I get, and I do try to limit my bread intake, although it is very hard for me. I have made huge strides in reducing my carb count, although it is still pretty high compared to the no bread on the SCD diet. One thing SCD has definitely help me do is change my food habits, which is undoubtedly the hardest habit to change in your lifetime. I used to drink tons of coke, eat tons of pasta, pizza, garlic bread (italian food), reese's peanut butter cups, milkshakes, fast food. I don't do that anymore and I have noticed a huge difference, most notably in my weight and energy level.

Thinking in retrospect, I never really wanted to stop the diet, but my course load kind of forced me to. I noticed myself slowing trying to dip into other foods when I was not healthy enough yet, as I did this, I started getting greater urges to just binge out on all of the most terrible foods (cakes, cookies, ice cream), foods that I didn't even crave when I was eating normally. This happens when you abstain from foods for a long period of time I guess. Of course, all the terrible food I ate eventually lead me to being sick again. But anyways, my suggestion to you would be too just stay steadfast and strong in the diet, DON'T STRAY unless you are sure you are healthy (Elaine suggests 2 years I believe if you have Crohns). Try to get help from a girlfriend, bf, mother or father, try to get them to support you and help you out, because it helps out a lot if you have other people pushing you. GOOD LUCK


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## iminflamed (Jan 22, 2010)

My Butt Hurts said:
			
		

> LOL Creepy!
> 
> I haven't tried the SCD diet, but I would think that it would be like everything else that we try as Crohnies.  Some meds work for some and not for others.  Some foods bother some and not others.  Some diets help for some and not for others.  We all have different symptoms, we all have different side efects from the meds.  I would say that the only way to know if it will work for you is to try it.  A member on here named Crohns08 seemed to have some success on SCD. Maybe you can search their posts for some more info.
> That's a good tip for when you feel like cheating though.
> Good luck!


I respectfully disagree,

I think it important to differentiate the effect that drugs have on us, with the effect that food has on us. If you are talking about pharmacological drugs, then I agree. We all have different biochemistries, we all react different to different drugs. 

But when you talk about food, we have evolved as a species on a certain diet. That diet is mainly of meats, fruits, and vegetables. Agriculture, was only invented 10,000 years ago. Milk, 5000 years ago. These two foods are a drop in the bucket compared to the millions of years that we have evolved. They are plainly and fundamentally FOREIGN in our diets. Yes, THEY ARE foreign in our diets, period, end of story. 

This is why you see such high success when you put people on these diets, not just with Crohns, but with an indeterminate number of other diseases or problems that aren't even related to Crohns as well. Namely psychological problems, physiological problems, and seemingly every major medical problem the Western World faces, when they strictly prohibit grains and dairy from their diet.

This is frequently swept under the rug in the scientific community due to their being "not enough published studies" to support these claims, "not enough research being done" etc etc... The truth of the matter is, no company is going to pay money for any studies to be done on a diet. There are not going to be any governmental grants towards this when most of the major food companies are in bed with the government in the first place. It's a shame that people are not more aware of these things, and doctors frequently kick diet under the rug, because it could really make a difference in people's lives.


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## kenny (Jan 22, 2010)

iminflamed said:
			
		

> This is frequently swept under the rug in the scientific community due to their being "not enough published studies" to support these claims, "not enough research being done" etc etc... The truth of the matter is, no company is going to pay money for any studies to be done on a diet. There are not going to be any governmental grants towards this when most of the major food companies are in bed with the government in the first place. It's a shame that people are not more aware of these things, and doctors frequently kick diet under the rug, because it could really make a difference in people's lives.


In all fairness there is the whole "_Agriculture being the single most significant change to human society that lead to its success_" thing. I believe strongly in diet modification but I have no delusions about modern human society existing without the benefits provided by agriculture.


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## CrohnsHobo (Jan 22, 2010)

I also know that a lot of the stuff on the SCD makes me feel like crap when I eat it. Think I will just stick to eating what does not make me feel bad and stay away from the stuff that does. 

Glad it has worked for you, but it is not for everyone.


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## iminflamed (Jan 23, 2010)

kenny said:
			
		

> In all fairness there is the whole "_Agriculture being the single most significant change to human society that lead to its success_" thing. I believe strongly in diet modification but I have no delusions about modern human society existing without the benefits provided by agriculture.


Yes, that is true. Without agriculture, millions of people would starve because we would run out of food. Agriculture has given humans an easy way to cultivate food, a major reason why the population of the planet is going through the roof. 

But that has nothing to do with what kind of food we evolved on, or what kind of food we are biologically programmed to eat.


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## Nytefyre (Jan 23, 2010)

Thanks for the updates!  Every time I look at the SCD I think it is absolutely crazy and very extreme.  I'm glad it helps others, but like the original poster, I would have to be at the end of options before I tried this one.


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## wqcoleman (Jan 25, 2010)

Thanks again for your posts..  

The odd thing is that I'm gaining weight on this diet, and yes, I do not always like the foods or "get the energy" boost from non-carb related food, like I got from the processed crap I used to eat - but short term headaches, while I expand this diet to more foods.

I've added some "non-scd" compliant stuff once or twice a week, but invariably, I pay for it.

Trying this week, whole-shell peanuts, seems to be the only legal peanut I can eat, we'll see how it does, I've enjoyed peanuts over the years.

I tried some breaded chicken this week, seemed to work ok.  I also stopped the rice experiment.   

I find that the hardest part is sugar, it's like morphine.. man, I didn't realize how addicted I was to sugar and sugar related product.  I drink orange juice to handle the cravings, since it manifests itself in getting a doughnut in the morning - with a coffee, but I'm substituted it with eggs and bacon, and it really doesn't get me that sugar fix.  

And I think if we get honest with ourselves, what we eat is pretty much crap.  I spend a ton at Whole Foods, but to me it's worth it vs. the costs of getting my colon out.

I still have D, but I don't expect that to go away for a while - since I've had it pretty much every day for 7 years.  But, food does have a connection, no doubt about it.


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## Peaches (Jan 25, 2010)

Hey Will....I can't remember - did you ever have surgery to have anything removed?  Do you still have your ileum?  Do you know exactly where most of your disease is?    I applaud you for continuing your effort - and thank you for sharing it with us :O)


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## imisspopcorn (Jan 25, 2010)

Thanks for keeping us posted Will. Three cheers for Will...Hip-hip-hooray. Good luck!


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## wqcoleman (Jan 25, 2010)

no surgery, thank god.  I still have all my parts.  They have suggested surgery, in fact, the jackass doctors have said.. "I think eventually you'll need surgery..." screw them, they are insane and clearly in denial about the food connection.

I am seeing a new doctor at UCSF tomorrow, I'm hoping he is more open to the diet connection, since it's really the place I start from now.  If he's not, I'm going to find one who is.

I'm not 100% SCD compliant - which I've been honest about in my posts.. but I look at everything now, and I "introduce" certain foods to see how I'll do.. some of you have read my rice disaster, but for example, having a doughnut every 5 or 6 days, seems to be tolerated well, and frankly it's my only refined sugar I have... it's my only treat, that's an old food.. and I would imagine I'll probably stop doing that as I get more into fixing this diet.

So, as long as I'm aware of sugar, dairy, wheat and starches, I seem to be doing ok.  I have a tiny amt of dairy with my coffee, and I've had some wheat based things like breaded chicken from Whole Foods - this is lately, it hasn't really beat me up, but then again I never really know (except for rice) -- but I am feeling better.. more energy and I feel less pain, even though every once and a while I'll get a pain spasm, but I can deal with it when I'm feeling better..

I encourage anyone who is struggling with this disease to really look at the food connection.  To say it's "hard" is a cop out, since would you rather have a hard diet and feel better or get your colon cut out and live with that decision?  I think I'll choose the former rather than the later.

I'm not saying it's a miracle cure, but feeling better is a good barometer.


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## kenny (Jan 26, 2010)

wqcoleman said:
			
		

> I encourage anyone who is struggling with this disease to really look at the food connection.  To say it's "hard" is a cop out, since would you rather have a hard diet and feel better or get your colon cut out and live with that decision?  I think I'll choose the former rather than the later.
> 
> I'm not saying it's a miracle cure, but feeling better is a good barometer.


I think the people on meds who have had surgery need to keep it in mind too. The meds can not keep the progression of disease at bay indefinitely especially if people eat foods that encourage inflammation in the gut. 

I am finding the diet that is right for me as you say, feeling better is a good barometer. The SCD plan gave me a good reference point to work from. My reaction to things is not so severe that I need to start from scratch. And I am in better shape having the excessively scared and damaged parts of my gut removed, still having 100% of my colon. But I might not have been fully fisutlized and scarred beyond repair around my cecum if had I got an earlier diagnosis and began something like the SCD diet 10 years ago.


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## CrohnsHobo (Jan 26, 2010)

SCD is a nice reference point, but it is not for everyone. Plenty on this list: http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm that makes me feel like crap and stuff on there illegal list that sits well with me. 

Glad it is working for you, and good luck in the Dr. search.


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## wqcoleman (Jan 26, 2010)

Well.. saw a new doctor today, and well.. it was quite deflating.. 

more of the same shit.  Drugs, Surgery.. and oh yea, some alternatives... one drug was a Multiple Sclerosis Drug (approved for CD - Ustekinumab) that causes a fatal brain infection in 1 and 5000 patients - sounds like a great alternative.. the other was to enter a study where 2 out of 4 patients get a placebo.. so I guess that might help me, since it will reinforce my theory that it's both a mind/body problem along with horrid food intake.. that is, I'd probably feel as good on the placebo as I would on the actual drug.. just more insanity.

Surgery... blah blah blah.. and he wasn't a very good listener..

I'm stopping the medical doctor angle.. I'm going to pursue a alternative medical doctor angle, that is, someone who understands the pharmacological sides of things, but realizes that the food connection takes time and energy... For example, "while you're on Humira, your body is robbed of these nutrients, and you should supplement your SCD diet with these things.."  no.. nothing like that.  God, I wish I could have a doctor like this...

I'm beginning to believe that there are two bins of people with this disease (this might piss off people, but it's my opinion and observation)

* I've been in both bins*.. 

Bin one - goes the medical angle, taking more and more deadly and serious drugs, and then electing for surgery (when they become refractory, or feel it's the only hope (desperation is a horrible place) - because these a-hole doctors don't give us ALL the options (this is true, whither we like it or not)..Then these people, from what I've read on these forums and other places, live a semi-miserable life with some improvement, but with all the *baggage* of surgery and heavy duty drugs...

Bin two - are others who come to this realization that their diet and food intake are a big part of the problem (we eat and consume foods that are just antithetical to our disease - processed foods, sugars, DAIRY, grains and other garbage that we want to continue eating, because it makes us feel good mentally and *WE WANT TO BE NORMAL*...  and what happens is that these people who have this epiphany, change and CHANGE hard and expect that change will take time, not measured in weeks, but in months and years... that we rally against this disease with all of our energy and not give in.. regardless of where the disease manifests itself.. small bowel, colon, etc..  and from what I read .. WE IMPROVE! if we stay the course... don't take my word .. read the testimony on these forums (I can give you 50+ blogs, links, sites, etc of people who were as bad as we were and have improved to a normal life, albeit a totally new diet and outlook on food - a NEW normal).

As I say though.. if we are going to die, and there is no option, then yes, we need that surgery option, but until that point.. we should do everything in our power to look at other connections that clearly are connected to what we eat.

I am committed to this belief, since what I heard today from yet another "expert" / "guru" of CD, is frankly more of the same.. when engaging at a level of q&a about things "I've tried" and "what I'm doing", it just falls on "well, we've seen it work, but there is no compelling studies.."  I call bullshit...  I need a partner in this horrible illness, not a lecture on more insane and worthless avenues.

Again, as I've said in numerous posts.. if I'm dying and 100lbs in the hospital on life-support and they tell me that I need my colon out or I will die, then I will make that decision with my family and god.. but until then... they (these insane doctors) can pound sand.  I truly believe we get this way because of what we eat and continue to want to hold on the hope that we can eat like normal people.. we can't..

I did learn one thing.. I will not die if for the rest of my life I have diarrhea, but if I feel better and I have less cd symptoms (which I've had these last four weeks).. it might be normal for the rest of my life..since my colon might take a long time to heal and that the scaring from the inflammation might never really heal itself.. so be it.. better than having it out.

He also suggested doing Humira once a week, instead of 2x a month...  we'll see.

But, I will be searching for a alternative doctor/practitioner who can engage me on a different level then what I've been getting..  what I've gotten is well.. "EPIC FAIL"  I'll keep you updated.


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## iminflamed (Jan 26, 2010)

Amen brother. Agree 110%.


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## CrohnsHobo (Jan 27, 2010)

Good luck.


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## lancelot (Jan 27, 2010)

the SCdiet is so easy to follow, it's only "extreme" if you're a regular fast food goer.  it's quite healthy, and easy to follow (everything is homemade).  I've been on it for almost 2 weeks now, and when I slipped and did the regular coke and a&w burgers, the intestinal pain was quite impressive...I had almost forgotten in the 2 weeks what that was like (as I'm sleeping throughout the night now, and have had zero abdominal pain); to keep in mind, I'm diagnosed as severe fistulizing crohn's (my abdominal area looks like a warzone according to the research specialists I see here in Calgary).  I think I might even be able to start doing sit-ups again!

With this diet, I believe that I may be able to not have to have much surgically removed!  (we'll see when I have the last diagnostic image before the surgery).

I'm astonished on how many people don't know about this diet and how easy it is to follow (once I read Elaines book, and followed a few people like "scdgirl"), it's so easy to make things from scratch (slow cooking, jams, condiments, baked goods like breads/cakes/muffins).  Slow cooking a meal like the "chicken broth" took less time that it would to microwave a "hungryman" dinner that would probably have me at the ER wondering wtf just happened!

It is true it's not a cureall, but boy, I'm super glad I tried it on a whim (spent thousands on herbal treatments before I even thought of changing my diet!?; tried colostrum, vsl#3, mastic gum extract from greece (gotta love ebay), various probiotics (including Garden of Life primal defense), various herbal cleanses, etc.: none of those worked).

A fellow local chronie told me that slippery elm also helped to "calm down" his small intestine (which he believed was causing a lot of his discomfort).  I think I'll give that a try with the diet and see what happens.

For those of you who don't try something new, sorry to hear about that.  For those of you who do, good on you, the doctors do not know you're body, only you do.


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## acg101 (Jan 28, 2010)

Hello Everyone,
Diet works but we all have our own response.
I started a gluten free diet and it reduced my pain level to a point where I can function.
It took 5 weeks to kick in but I could feel the pain go down after a week. My gi is cinsidered as one of the best in the world dismisses any connection to the diet and gives the credit to Cimzia. I know it works!

My doctor suggested that I remove my colon. I dont think so. the colon might take a long time to heal and scaring from the inflammation might never really heal itself.. so be it.. better than having it out.


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## wqcoleman (Jan 31, 2010)

6 weeks into SCD.. feel better then I've felt in a year..  no pain, no malaise, no fear (which is the most important) - still have D, but I expect that to be around for a while.

sticking to the diet hard core, with Humira once a week, instead of 2x a month.. we'll try that for a while.  I intend to try at some point to get off the Humira in the next few months.

also, i'm worried I might be prednisone dependent, since I still need it for my auto-immune hepatitis (which I'm beginning to believe is diet related as well - more I read about how it starts in the first place).

I won't add any more opinions.. I think I'm pissing people off with my passion and my disgust with the medical community and their insanity. I will say this, I'm no longer a lemming to them, and that is freeing. 

I will only report my progress from now on.


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## Peaches (Jan 31, 2010)

Hey Will - I wasn't meaning to upset you buddy!   Opinion - while constructive - is always welcome.  And what you are giving us here with your diet progress is great.  I'm just saying - if it is always very negative, it just might not be helpful to new people who are already skittish with what they have going on or people who are super on the fence about *trying* a medication that might be very helpful to them.  You have apparently had really bad luck with the meds you have taken in the past as they have not helped you - I get that, really I do.  And I'm sure that is super frustrating.  I'm just saying that this is not always the case for people.  If I would have never tried Remicade - man - my life over the last 6 years would have been pretty miserable I'm sure.  It has worked for me and I'm grateful for that.  I'm sorry if I upset you - I didn't mean to.  I was just trying to see if you could steer towards at least productive criticism with your drug experiences.  People still need to here what didn't work and maybe what your experience was with it as well - I'm sure this would be helpful to them.


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## wqcoleman (Jan 31, 2010)

I be as direct and not-negative as possible.. 

they (all of these so called expert doctors) never gave me all the options.  I am very bitter about that, and they never talked to me about the food diet connection or the fact that what I was eating was killing me.  The first line of defense should be "what do you eat?" not.. "here is some very dangerous drugs you should take" -- I see the same despair many posts here on this forum.. people are NOT informed by their doctors and makes me mad - I was not informed either.. after seeing many doctors.

The fact that these experts would choose to cut out my colon before looking at every single alternative out there seems to me just ludicrous.. I found about SCD on my own, only after total and utter despair.. and to think that I would have considered surgery, I'm so glad I didn't drink their cool-aid.

as for drugs, yes, I'm on Humira, and yes, I think it might be working.. but only as a result of the diet, otherwise, I'm convinced it would have never worked since the conditions would have been the same when I took Remicade, Immuran, Cimzia, etc,etc... those drugs never worked.. and i'm convinced they didn't work because of what I ate.

So, I'm sorry I'm negative.. but we should be aggressive with these doctors.. and we should question everything they give us and look for things that might not be as toxic to us - and look for doctors that make sense, such as those that I've read who say.. "you need to be on SCD or similar diet or I'm not treating you" - wow, you mean I have to change? this makes complete sense to me, because that is where we should start.

It makes me cry to see people who have had surgery after surgery and with no improvement.. and to be in utter pain and misery... ir those who take chances with drugs that potentially are worse than the disease itself.  It's very sad.

If some of you read this and don't think I'm as bad or as worse than you.. you haven't read all my posts.. I was near death in early December 2009, DEATH - with NO HOPE. I was in the hospital 11 times in 2009, with several "meetings" with doctors saying the only remedy is to cut out your colon, and me every time saying no, there must be a better way.  From Pancreatitis to Fistulas to D so bad that I couldn't move off the toilet for hours.. from blood spitting vomit.. etc.. I could go on.. 

So... if I feel better.. I WANT TO SHOUT FROM THE RAFTERS about this life change that I made - that to be very honest I was completely against diet/food connection because I was in COMPLETE DENIAL!.. COMPLETELY .. and now I feel GREAT ... that's why I write how I write... since I want others to be free of this disease.. it's a horrible horrible horrible disease..


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## Peaches (Jan 31, 2010)

Geez - hit the post button and realized this is a loooong post.  Sorry Will...just wanted to share.

Ok - great info.   And I agree that doctors need to recommend diet change more than they do.  But you are right - WE have to take some responsibility for our own health.  

Would you be willing to share what type of diet you ate before you ever heard of the SC Diet?  I'm just wondering if some of us can relate to it - might be eating similar stuff.

I don't know if I missed it earlier, but was surprised to see that you have AI Hep as well.  Geez - crappy set of cards to get dealt.  I hope with where you are now (between the meds and the diet) that it will be able to get things quieted down for you Will.  

Also - just wanted to share a very recent anecdotal story that kinda spurred me to make the comments I made to you today Will - so you will understand where I was coming from.  My father-in-law found out last year after having pain for about 9 months, that he had severely blocked arteries in his heart.  He *hates* doctors.  I mean hates them- my hubby is a doc - and he was talking very negatively about doctors to his own son - that is how bad he hates them.  He refused to have bypass surgery.   Said he was going to try alternative treatments to fix the problem.   At the same time - he changed his diet and started exercising more - all the while suffering with angina (kinda scary!).  Well - the man lost *80* pounds over the last year.  He looks great!  He came for a "short" visit with his new girlfriend a few weeks ago (Jan. 12).  Well - guess what - he had a mild heart attack while we were at a movie and we immediately took him to the hospital and he had *quadruple* bypass within days.   He had a great experience with the docs and the surgeons and now he has a new lease on life (to spend with that new girlfriend).  His recovery is also going super well because he took good care of himself in the past year - better than he has in decades.

Point is - HE changed his diet and lifestyle - and while it didn't cure his need for surgery - it certainly changed his outcome after surgery.  Sometimes docs can be single minded - but you can help yourself and still let them help you.   And - surgery isn't the end of the world.  I've had it - and it has given me a great 13 years of feeling *so much* better than I did before.


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## saidinstouch (Jan 31, 2010)

You realize you are putting your feet into something you cant possibly comprehend.  To further the negative reaction you get, you are insulting some of the worlds leading GI doctors in the world.  UCSF is a world renowned medical school and medical research campus.  Show me where your Ph.D in molecular biology or your MD is before you even try to preach a new diet as the solution.  Considering we know close to nothing about our microbiome, the notion that we can "starve" bad bacteria selectively and not hurt our good bacteria is a load of crap.

I am 100% certain SCD helped you as much as you say and that dietary changes are good options.  I bet if you had asked to see a nutritionist at UCSF or elsewhere to modify your diet in conjunction with your humira and prednisone, your doctor would have said yes.  Instead, it seems you wanted to rely completely on SCD to keep you healthy, which has been a theme of your wanting to get off Humira and prednisone. How do I know your doctor would give diet an option if presented in a logical manner?  My GI doctor is also a UCSF specialist.  Also, I am getting a Ph.D in molecular biology studying the glucocorticoid receptor at UCSF.  Somehow I think my understanding of the body far surpasses yours.

If you don't believe me about the microbiome, I also doubt you have ever talked to one of the worlds experts in how bacteria in our body communicate between themselves and with our bodies cells.  The system is so immensely complicated, that its pretty much completely unknown.

The only reason I'm being so harsh here is because you need to know what works for you doesn't work for others.  Also, seeing as you started to double your humira dose(to the normal dose schedule of every other week mind you) and you are on prednisone, you don't actually know the diet is what is working for you.  Just cause you eat something that sets you off, doesn't mean it is "breaking" the diet that is the problem, it could just be a food that doesn't sit well with you.  When you get off the pred and off the humira then you can see if the diet is your savior.  But for now, stop preaching to us.  Not only are you getting your information about various drugs mixed up, you are also not taking an objective view of the drugs (1 in 1000 to 5000 chance of PML or 1 in 1000 chance of lymphoma?).  Those are the the numbers typically considered for tysabri vs anti-TNFa agents.  Drugs and doctors are not all bad or ignorant.  They know everything you know and then some.  They go with what works for a majority of the population because it is what works for MOST people.  Some people have to find another way and I am GLAD you found yours to be healthy and feel well.


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## wqcoleman (Jan 31, 2010)

ok, I guess it all depends on the person.. I feel good, that's all that counts, and I've tried everything.. so, there you go

best advice I ever got in life was from my grandmother.... don't make other people look stupid... 

I have no qualms with you... no need to set anyone straight.. I'm not a child..


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## saidinstouch (Feb 1, 2010)

Hey Will, my post was made a bit hastily and I didn't mean to sound so mean in it.  My problem is you essentially disregarded the opinion of someone practicing medicine at one of the best health institutions in the world (and I am not exaggerating that fact).  I am glad you feel better and hope it works for you since that is all any of us want.  However, you have to remember the doctors and scientists who prescribe and develop the treatments you are taking do in fact know what they are doing (to the extent any of us can).  

What works for you isn't going to necessarily work for someone else.  Through your posts you have conveyed a lot of incorrect and/or incomplete information and that is harmful to other people on the boards.  I am sure some of that information comes from the SCD book, but the fact is the author simply cannot know some of the information they talk about.  There are 10 times more bacterial cells in the human body than there are human cells, so you really think a diet can starve every single bad bacteria in us without either 1)harming necessary good bacteria or 2)harming specific kinds of bad bacteria, but not ones that look like "good" bacteria?  There could be other reasons for the diet to work, but the concept of only allowing good bacteria to grow is highly unlikely.

As I said at the start, I did not mean to be as harsh/mean as I was and you didn't deserve that.  I try to keep my posts educational and I didn't do that this time.


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## iminflamed (Feb 1, 2010)

saidinstouch said:
			
		

> You realize you are putting your feet into something you cant possibly comprehend.  To further the negative reaction you get, you are insulting some of the worlds leading GI doctors in the world.  UCSF is a world renowned medical school and medical research campus.  Show me where your Ph.D in molecular biology or your MD is before you even try to preach a new diet as the solution.  Considering we know close to nothing about our microbiome, the notion that we can "starve" bad bacteria selectively and not hurt our good bacteria is a load of crap.
> 
> I am 100% certain SCD helped you as much as you say and that dietary changes are good options.  I bet if you had asked to see a nutritionist at UCSF or elsewhere to modify your diet in conjunction with your humira and prednisone, your doctor would have said yes.  Instead, it seems you wanted to rely completely on SCD to keep you healthy, which has been a theme of your wanting to get off Humira and prednisone. How do I know your doctor would give diet an option if presented in a logical manner?  My GI doctor is also a UCSF specialist.  Also, I am getting a Ph.D in molecular biology studying the glucocorticoid receptor at UCSF.  Somehow I think my understanding of the body far surpasses yours.
> 
> ...


Look whose getting preachy now. You getting a phd in molecular biology has absolutely what to do with what we, as human beings, are supposed to eat? You're not getting your education in anthropology, nutrition, food science, etc, so don't come off as so damn pompous because somebody isn't as highly educated as you are. You may know how our body works, but you don't know a damn about our dietary history just as much as the next person on this site. How many nutrition classes do you think this countries leading GI's take throughout medical school? Let alone undergrad? I'd wager at the most 2 or 3. Doctors don't recommend diet as a solution because they are essentially ignorant on the subject. A big reason you are seeing dietitians enter the workforce at a rapid pace.


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## Peaches (Feb 1, 2010)

Hey guys - can we try and keep this thread informational (which is what Will was trying to do originally - which was great) and not attack each other?  That doesn't do anyone any good.    The conversation of diet alone much less the SC Diet on this forum can get very charged as people have varying degrees of opinions about whether it works or not.   Let's let everyone have their opinion and keep it productive ok?


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## wqcoleman (Feb 1, 2010)

Thread closed.


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## CrohnsHobo (Feb 1, 2010)

I looked again at Vicious Cycle at the bookstore this weekend and I keep looking at the list of illegal and legal foods on the internet (a lot of the legal foods really bother me, and some of the illegal foods sit really well with me). So on the fence about giving it a shot.

I did a gluten free diet for about six months last year and I had a real hard time sticking close to it. The SCD diet is even more restrictive, not sure I could stick with it. 

I do all of the cooking in our household and I work 9-5. I am not sure I have the time or patience to make homemade yogurt (that looks like a big hassle) and to make the meals necessary to be true to the diet. 

Then I think I could follow it as close as possible, but then I would just be back to following what I have done for 15 years. Eat what does not bother me, skip the rest. 

Think I will have to see how I feel once I stop the Pred and I am just on the Humira/Metho. So hard to gauge how I am doing internally when the Pred makes me feel so good.


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## Peaches (Feb 1, 2010)

wqcoleman said:
			
		

> Thread closed.


Will - please don't stop posting to this thread.  I hate that it escalated.  We really need someone who is willing to follow the diet through to see if it works as we have not had anyone do that yet (that I am aware of) and you doing it diary style is very helpful.  If it went too far for you to be able to get past it, I understand, but hopefully you can overlook the escalation and come back and post.  I think it will be helpful for everyone.


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## wqcoleman (Feb 1, 2010)

> There are 10 times more bacterial cells in the human body than there are human cells, so you really think a diet can starve every single bad bacteria in us without either 1)harming necessary good bacteria or 2)harming specific kinds of bad bacteria, but not ones that look like "good" bacteria?


A: yes.


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## caa (Feb 2, 2010)

*Scd*

My husband is on the SCD and believes its the best diet for his Crohn's.  He is gluten intolerant and lactose intolerant.  It's extra work to stay on the diet, but it's the healthiest and most helpful diet we've found.  The only downside is in thinking you can start going off the diet.  Then you get in trouble.



			
				wqcoleman said:
			
		

> I'm hardcore into the SCD diet for the last 6 days.
> 
> I'm getting a second opinion from a doctor in San Francisco:
> 
> ...


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