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12-11-2012, 09:20 AM   #1
KWalker
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Countdown to SCD!

After many very helpful discussions with various people through private messages, I've decided to come out and share with everybody that I will be starting the SCD diet within the first week of January 2013 (preferably the 1st). The reason I say that is because over the holidays we travel back to see family and I figured I enjoy one last "binge" over the holidays and then once we return home I'm going to hit this hard.

A little background for the newer members who may not know my story, I was diagnosed with crohns when I was just two years old and I am now 22. I've been tested on Prednisone, Humira, Remicade, and Methotrexate, Cipro and Flagyl. I'm actually currently on Cipro right now but only have a few days left out of my 2 week prescription.

I currently have two perianal abscesses, had two abscesses for the same one, and have another one that does not require surgery as it is draining on it's own. My latest colonoscopy (taken January 2012) shows active inflammation, but I currently feel great and go completely symptom free (minus the abscesses) when I take psyllium.

I've decided to start the SCD diet because my old doctor wants me to go on Imuran and while that takes 4 months to even become effective, I figured I might as well take advantage of my current health and try the diet while I'm in the state I'm in as I do have time to play around a little and experiment with what works for me. I've decided against the Imuran for now and am in the process of finding a new doctor by the way.

I'm going to document everything I do with this diet so I can see for myself what kind of progress I do (or don't) make, as well as for anybody else who is considering the diet. I am going to get blood work done at the beginning and as well after a little while so I can monitor that as well, and see what (if any) kinds of supplements I need as well.

I'm sure this is going to take some serious commitment as I currently eat whatever I see, but to me it is worth making significant diet changes to see if I can avoid medicine for the time being.

At this point I'd like to invite anybody considering the diet to jump in and start at the same time as me and we can do this together.

I hope those skeptics out there respect my decisions and please hold off on the negative comments. Of course it is easier to take a pill in the morning but if I'm not on any medicine right now anyways, I might as well take advantage of this time and try the diet for myself.
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
12-11-2012, 09:33 AM   #2
muppet
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Good luck to you! I'll be watching with interest. I had such a hard time sourcing ingredients and sticking to this thing that my daughter and I gave up after two weeks. I can't wait to see your progress on this.
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12-11-2012, 09:36 AM   #3
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Thank you! My fiancee has agreed to diet as well (just to overall eat healthier) so I think that will really make things easier. We've started sourcing out ingredients and things we will be able to eat. Of course she won't be as strict as I am but a lot of stuff that are "legal" are already things we eat anyways. For me, my biggest challenge will be cutting out the chocolate, ice cream, and pop, and finding different sides instead of the potatoes, rice, etc.
12-11-2012, 09:38 AM   #4
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I do low residue and no dairy which is far easier to follow, and in my opinion is the reason (or a large part of the reason) I'm able to attain remission on 5-ASA drugs and haven't needed biologicals to date. I think you're nuts to go off of all meds, but if you're going to pull this experiment, best when you're young and more likely to heal.
12-11-2012, 09:49 AM   #5
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I appreciate the concern, but I haven't been on any medicine since 2010 for crohns. The only medicine I've been on were the short courses of Cipro and Flagyl for the abscesses. (2 weeks max) I figured that if I've already went that long without medicine and not going over the deep end, Significantly changing my diet could only make things better. If I don't see progress than I will definitely be going back on medicine.

I think it is important to note that I do NOT think anybody should stop their medicine. There are many people that have serious cases of IBD and need their medicine. The only reason I'm doing this is because I'm not on any medicine to begin with.
12-11-2012, 09:53 AM   #6
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Sorry, I can't help but see the klaxons. I did very similarly to you at around the same age as you. I went 7 years without a single IBD issue despite being on no meds and only casually watching my diet. Sometimes remissions last a loooooong time and it's hard to pin it on any particular variable. I wish you the best but I think caution and being as objective as possible about your progress are paramount.
12-11-2012, 10:00 AM   #7
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I know you're skeptic about the whole thing, and I'm sure you're not the only one, and that's okay. I would be absolutely thrilled if I could go 7 years with no symptoms and be in remission just from changing my diet.

I know there is, and will always be an on-going debate over whether or not diet matters with crohns disease but if nobody tries to change that through experimenting that debate will always be there and people will be self-reliant on medication. There are no risks with diet. There are huge risks with some medications.

If this doesn't work, it doesn't work but I'm willing to try for myself, and for others to challenge the critics and see what diet can do for me.
12-11-2012, 10:04 AM   #8
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Oh I don't think there's any merit at all in the idea that diet has NO effect on Crohn's Disease, that's nuts.

I'm really not trying to hijack your thread. I do have to say though, that I don't agree at all that there are NO risks with diet. That's not true at all. There are risks with anything you put into your body. And if diet implies eschewing medication, there are risks with eschewing medication as well.

I'd like nothing more than for you to prove you can go symptom free perpetually with diet. Like I said, I've done it, but it didn't last. If it lasts for you, that'll be awesome. My only point is that you have to be careful not to ignore the red lights on the dashboard, should they come on while you're going for your record breaking endurance drive...
12-11-2012, 10:12 AM   #9
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I realized after I said how it can be misinterpreted. With diet, there are risks if it means not taking medication, and also if we eat foods we all know we're not supposed to eat. What I meant was there is essentially no harm in eating healthy (in my eyes).

I wasn't referring to you specifically when I said people don't believe diet matters. I was looking through some old threads when deciding which diet to attempt and you would be surprised to see how many people who posted that diet makes no difference at all and that medicine is the only answer.

I'm definitely going to be careful with this. Like I said I'm going to keep a monitor on blood tests, I'm going to schedule a colonoscopy once I find a new doctor, etc. And like I said, if it doesn't work and I don't notice a difference, I go on medication.

I appreciate your comments, and encourage questions/discussions. I just want to steer clear of people posting negative comments without any thought (which doesn't apply to you). I think people might be hesitant to post questions about diet because we don't have a whole lot of discussion at the moment so through discussions like this, it might encourage others to join in, ask questions, become educated, etc.

Once I start the official diet/diet thread I'm going to track all my symptoms, foods, test results, etc. I just need christmas to eat way too much turkey and treats before I start lol. It's pretty much here anyways, I might as well wait the few extra weeks.
12-11-2012, 11:44 AM   #10
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We are a few weeks into the SCD diet with my son (11 years old). We are choosing to try the diet instead of meds. I, like you, know there are risks with this, but when I read the 4 pages of precautions and side effects for the medication our pediatric GI wants my son on it is obvious ~ there are risks regardless! So far, we are very pleased. His diarrhea and abdominal cramps are gone. Yay! The downside is that he really needs to gain weight and gaining weight on the diet is rather difficult. We hope to see an increase in weight as he heals.

Some good websites with great recipes (some of them have a mix of grain free and gluten free recipes, but you need to check ingredients to make sure it is SCD friendly).

www.nomorecrohns.com
www.breakingtheviciouscycle.com
www.pecanbread.com
www.thepaleomom.com
www.elanaspantry.com
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12-11-2012, 11:52 AM   #11
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Even with all the issues my 14 year old has had with medications over the past 11 years, I'd never dare try to go 'bareback' with just SCD alone, it'd scare the hell out of me. We tried another similar diet a few years back in conjunction with a prednisone taper and the result was a blood transfusion. Will he still be getting regular checkups with the GI, scopes, etc?
12-11-2012, 11:57 AM   #12
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Another thing I wanted to add...

I think you are being cautious and that is good. We are doing the same with my son. We are going to keep a close eye on symptoms, SED rates, stool samples, etc. There are a lot of skeptics and that is okay. I won't feel right about meds until we give this a chance. If he were to begin meds and have adverse reactions or end up with liver damage, kidney damage, or cancer and I did not try a more natural route first then I would always regret it.

Also, I find it silly that my son's doctor will say that they use these indicators (symptoms, stool, SED rates,etc) to manage medications and see if they are working, but somehow those don't apply if you are trying diet. He actually said that when I mentioned a non-medication route ~ he said those weren't reliable indicators. So I asked him again ~ isn't that how you keep an eye on medications? How can it apply in one situation and not another?
12-11-2012, 12:01 PM   #13
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Even with all the issues my 14 year old has had with medications over the past 11 years, I'd never dare try to go 'bareback' with just SCD alone, it'd scare the hell out of me. We tried another similar diet a few years back in conjunction with a prednisone taper and the result was a blood transfusion. Will he still be getting regular checkups with the GI, scopes, etc?


Yes, I plan to keep him with his pediatric specialist. He isn't happy with us, but he is one of the best ped. specialists in this area. I am not completely opposed to meds and if we can't reach and maintain remission without them then to the meds we shall go. I have heard story after story of people who are in remission with meds and then the meds just stop working and they end up with huge issues ~ that risk is real with or without meds.
12-11-2012, 12:18 PM   #14
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Best of luck KWalker with your diet! Please give my thanks to your fiancee for being so supportive. I look forward to seeing your progress.
12-11-2012, 12:22 PM   #15
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Another thing I wanted to add...

I think you are being cautious and that is good. We are doing the same with my son. We are going to keep a close eye on symptoms, SED rates, stool samples, etc. There are a lot of skeptics and that is okay. I won't feel right about meds until we give this a chance. If he were to begin meds and have adverse reactions or end up with liver damage, kidney damage, or cancer and I did not try a more natural route first then I would always regret it.

Also, I find it silly that my son's doctor will say that they use these indicators (symptoms, stool, SED rates,etc) to manage medications and see if they are working, but somehow those don't apply if you are trying diet. He actually said that when I mentioned a non-medication route ~ he said those weren't reliable indicators. So I asked him again ~ isn't that how you keep an eye on medications? How can it apply in one situation and not another?
It sounds like he's using an implied threat of withholding treatment to pressure you towards the meds. He probably believes he's doing it in your own best interest. My own doctor has told me that if I'm going to be cavalier about my treatment, then he won't retain me as a patient, it's within their right to do so.

Hopefully you'll reach an understanding with him and he will still test your son, if not, find a new GI in a hurry. Going without diagnostic checkups is bad news, as you clearly already know.
12-11-2012, 12:29 PM   #16
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It sounds like he's using an implied threat of withholding treatment to pressure you towards the meds. He probably believes he's doing it in your own best interest. My own doctor has told me that if I'm going to be cavalier about my treatment, then he won't retain me as a patient, it's within their right to do so.

Hopefully you'll reach an understanding with him and he will still test your son, if not, find a new GI in a hurry. Going without diagnostic checkups is bad news, as you clearly already know.

I'm hoping he won't kick us out If so, I will be sad but I will find a new GI.
12-11-2012, 12:40 PM   #17
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Thanks Charleigh, it sounds like we have the same opinions when it comes to this. I feel like a lot of doctors don't push medicine because it's not their scope of practice. And besides, if we could all manage with diet alone we wouldn't need them anymore. But that's not my purpose of wanting to the do the SCD. I will be monitored and I will still get check ups to see what progress I make. I'm glad to hear you guys are doing SCD as well and your son is doing well on it. Did you guys buy the BTVC book and follow the steps on that or how did you go about doing the diet? What did you do about the yogurt as well?

Judith, thanks again for the support and all the help you've given me. I will indeed keep you updated with progress.
12-11-2012, 12:43 PM   #18
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Short of a cure, there will not be a time when Crohn's sufferers don't need GI doctors, unless you have a self colonoscopy kit I don't know about.
12-11-2012, 12:51 PM   #19
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I didn't say we won't need GI's..

Come on muppet, let's try to keep this on topic instead of turning it into a debate about doctors. This is strictly for the diet.
12-11-2012, 12:54 PM   #20
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And besides, if we could all manage with diet alone we wouldn't need them anymore.
You said exactly that.

This sort of language reveals a pretty heavy anti-medical bias. I don't think it's good for the community, is all.

I agree this isn't a debate thread, but neither should it be a "throw doctors and medical research under the bus" thread. Why not just focus on the SCD and how it works for you guys without the "political" commentary?
12-11-2012, 01:00 PM   #21
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Well I'm not going to turn this into a debate, I know you're a skeptic with the diet but why turn others against trying it?

Anyways,
Charleigh, another website you should check out is foreverscd.blogspot.com The person who started it is a member on here and is doing really well on the SCD diet! She has a bunch of delicious recipes as well
12-11-2012, 01:03 PM   #22
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Not turning others against trying it. I'm rooting for you all. I just think you have to temper your optimism with caution. I've been guilty of letting adverse symptoms go "just one more day" waiting for a diet or a medication or other regimen adjustment kick in when I should have been making changes or talking to the doc. I don't think saying "GO you!! Just be careful!!" is an attempt to turn anybody off of SCD if they want to try it.

Trying it without meds is not generally considered safe. This thread needs a "At your own risk, be careful" sticker.

If it works for you, I'll definitely be trying it again. I am 100% in favor of this working for you. I hope it does. My concern, as ever, is always for the inexperienced newcomers who find these threads on Google and try this on their 4 year old without also reading the important contextual information to be found elsewhere on the forum, which they may never even bother to browse. It's important to give a complete picture. I'm trying this, I'm optimistic, here I go, by the way, here are the risks of my project if you're thinking of doing this yourself.
12-11-2012, 01:03 PM   #23
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Thanks Charleigh, it sounds like we have the same opinions when it comes to this. I feel like a lot of doctors don't push medicine because it's not their scope of practice. And besides, if we could all manage with diet alone we wouldn't need them anymore. But that's not my purpose of wanting to the do the SCD. I will be monitored and I will still get check ups to see what progress I make. I'm glad to hear you guys are doing SCD as well and your son is doing well on it. Did you guys buy the BTVC book and follow the steps on that or how did you go about doing the diet? What did you do about the yogurt as well?
Yes, my husband and I both read the book. It is excellent and to the point (not drawn out). She gives the real Science behind why it will work for most people. It is fascinating actually. My son cannot handle dairy in any amount. This is where we have had to go our own route. We do not use the yogurt, cheese, or butter at all. My plan was to give him probiotics in lieu of yogurt but every time I try it flares up the diarrhea. We followed the slow introduction as described on the www.pecanbread.com website. She breaks the diet down into stages where you begin with a very basic diet and introduce foods from each stage one at a time. This is to make sure there aren't any flares for you. For the first few days, all he ate were plain meat, well cooked carrots, ripe bananas, and homemade applesauce. Once his diarrhea was mostly gone, we added in cooked green beans. We have now added in coconut flour, homemade coconut milk, squash, and grapes. We haven't tried too many raw veggies and fruits yet and she suggests those to come later. I do see that introducing in stages could be beneficial in finding flares. It might take longer to be able to eat the whole diet and the variety is sad, but think of it as a long term investment. I am thankful that I have an amazing kid who has had a great attitude through all of this!
12-11-2012, 01:07 PM   #24
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Charleigh, another website you should check out is foreverscd.blogspot.com The person who started it is a member on here and is doing really well on the SCD diet! She has a bunch of delicious recipes as well

I will check it out. Thanks for sharing.
12-11-2012, 01:09 PM   #25
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muppet, I understand what you're saying. I'm not against doctors at all, and I do NOT advise anybody to go off their medicine to try this diet, but personally I'm going to try this before I do go back on medicine. As far as the "at your own risk" I planned to make an official thread when I actually start the thread. This one was just more for the conversations like this, people asking questions, and finding others on the diet.

Charleigh, I've been reading the pecanbread website a lot lately as well. I've found lots of useful info on all the sites I've used. I'm glad to hear you didn't use the yogurt. There's a bit of debate on how beneficial it really is (especially when the ingredients are all illegal) and personally I HATE the taste of yogurt.
12-11-2012, 01:13 PM   #26
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I totally understand. Just be aware that while this thread documents your personal journey, it's on the internet. It's on search engines. Sufferers and loved ones of sufferers will be reading it. I worry about this all the time on my blog. I try to couch everything in neutral terms. "In my opinion". "Worked for us". "Some people disagree with me and here's why..." and so on.
12-11-2012, 01:18 PM   #27
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Charleigh, I've been reading the pecanbread website a lot lately as well. I've found lots of useful info on all the sites I've used. I'm glad to hear you didn't use the yogurt. There's a bit of debate on how beneficial it really is (especially when the ingredients are all illegal) and personally I HATE the taste of yogurt.
I can't speak for everyone, but my son is doing fine without the yogurt. I would like to try probiotics again in a few months because I do see that they could be beneficial.

If you are planning to use the almond flour then the cheapest price I have found is www.honeyville.com You are supposed to use the blanched, not the natural (to avoid the skins). They send out coupons occasionally, so sign up for their email list. I am hoping that my son can use the almond flour because it is packed with good calories (difficult to get on this diet without nuts involved).
12-11-2012, 01:22 PM   #28
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Luckily nuts don't bother me so I also want to try hazlenut butter and others like that. You can boil the almond as well and then the skins peel right off, if that's cheaper.

I actually found 100% pure peanut butter at my Walmart as well that I think would be SCD legal
12-11-2012, 01:23 PM   #29
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I totally understand. Just be aware that while this thread documents your personal journey, it's on the internet. It's on search engines. Sufferers and loved ones of sufferers will be reading it. I worry about this all the time on my blog. I try to couch everything in neutral terms. "In my opinion". "Worked for us". "Some people disagree with me and here's why..." and so on.

I appreciate your concern. I doubt anyone would dare to go off of meds without strong consideration and much research. I am already a very natural, holistic person and yet I researched, thought, explored, etc until my head hurt before deciding to go this route. While concern is not unwanted, I just don't think it is necessary. People tend to be cautious with their health. We all know that what works for one may not work for another. I doubt anyone would read a thread like this and throw their meds in the trash, especially with all of the good debates on both sides of medication lines.
12-11-2012, 01:26 PM   #30
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You'd be surprised at the flighty and ill-conceived reasons that some people go off their meds, I think. I just think that we've got a great community here and it's incumbent on us all to present a comprehensive picture whenever possible. Good vibes, optimism, and FACTS, instead of cheerleading.

ANYWAY, thanks so much for the honeyville link. That site looks awesome.
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