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jadegreen

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Hello everyone! I'm 33 and was diagnosed with Crohn's about two months ago. My GI finally found a nutritionist who was willing to consult with us and I'm beginning EEN tomorrow using Orgain and supplementing with sublingual B12, fish oil, Vit D3 drops and iron capsules. I'm also permitted camomile tea and the occasional fresh-squeezed orange juice, piggy-backing off of research on the Crohn's Disease Elimination Diet.

I decided not to start right away with the CDED because I have four kids and I homeschool and the trouble of learning that diet is greater than just cracking open a bottle of Orgain while I finish our homeschool year. I also have spent the last couple of months learning as much as I can about the SCD (because I hadn't heard of the CDED until the nutritionist told me about it a couple days ago), and intend to begin the SCD after my 6-week course of EEN. It just seems like too much work to learn new parameters for a different diet. I'm also not sure if it would mesh well with my oldest child's special diet (he also has a GI auto-immune disease....a different one, of course :sneaky: ). I'd love to hear from anyone who has done EEN and then transitioned to the SCD and what their experience with that was.

I'd also love to hear about how people manage their stress and what sorts of things they do to down-regulate. My family already eats pretty healthily, so I'm thinking that a big component for me could be my very sensitive stress response. Has anyone read "Why Zebras Don't Get Ulcers?"
 
As a parent SCD is far harder than cced
Scd has a lot of home made (create your own yogurt etc..,)
Cced has a simple list of allowed foods and amounts
Chicken eggs potatoes much more sustainable long term
But as a mom it’s all tough when your dealing with other kiddos issues as well
Remember oxygen mask first

my kid was dx at 7 now 17 almost 18
So he has done een multiple times
It works well
Cced did not. Do much
It was added in addition to meds
In his case
Meds work
Diet is a nice thing to add to boost things
Yea he has tried them all over the years
So
Good luck
Een is easy but hard at the same time
The body has a need to chew (chew crushed ice)
 
Thanks for the tip about the ice.

Because of my oldest son's Dx (eosinophilic esophagitis) I already do a lot of from-scratch cooking. SCD would require more from-scratch than I already do (which is quite a lot!) but I've picked up tricks over the years, and I have a babysitter come help me once a week, so hopefully it will work out. My nutritionist suggested trying the Mediterranean diet long-term after I've been in remission for a while (3 mos to a yearish, I guess?) because she says that seems to have promise.

I guess what could be tricky for me is that I'm used to looking at labels for allergens for my son, but the SCD is a lot more about food additives that may or may not be on the label. If anyone has any info about unlabeled additives, that's next on my list to learn about.
 
So they thought Ds had EoE prior to his scopes at age 7 - he has life threatening food allergies to nuts /fish .
EoE is thought by some to be a precursor to crohns

is your plan with your Gi to do een while waiting for mainten Meds to kick in ?
Or just do een with scd/or cced ?
Most need meds in addition to diet
Mediterranean diet is helpful in crohns (recommended by chop ) but not instead of meds
In addition to meds
If you plan on keeping things (inflammation etc..) under control with scd or cced then if your lucky for that to work
Those diets are for life ..
Along with regular scopes /blood work /imaging

additives are not listed on labels
Scd has groups on line for brands etc on additives
Cced is unprocessed food so no additives to watch out for
You make it all ...
 
my little penguin said:
So they thought Ds had EoE prior to his scopes at age 7 - he has life threatening food allergies to nuts /fish .
EoE is thought by some to be a precursor to crohns
Click to expand...

You know...I kept thinking it was too bizarrely coincidental that my son and I both have unusual GI diseases. I was wondering if there was a connection, but we have been doing this EOE thing for 7 years (my son is 9 now) and nobody mentioned it, even when I said my mother and one of my brothers both have Crohn's disease. I had to do a quick search when you said that, and the research is out there. I really feel frustrated when I find that medical professionals haven't shared something. I guess they don't want to worry people, or have people looking for things that aren't there, but still...it would be nice to know this stuff, esp since it's crossed my mind more than once.
 
my little penguin said:
is your plan with your Gi to do een while waiting for mainten Meds to kick in ?
Or just do een with scd/or cced ?
Most need meds in addition to diet
Mediterranean diet is helpful in crohns (recommended by chop ) but not instead of meds
In addition to meds
If you plan on keeping things (inflammation etc..) under control with scd or cced then if your lucky for that to work
Those diets are for life ..
Along with regular scopes /blood work /imaging
Click to expand...

My plan with my GI and nutritionist is to do EEN and then switch to the SCD, no meds. They both seem to think that it's possible to enter remission w/o meds. I did say that I'm willing do do meds if I have to, but I'd like to push that off as long as I can.

I realize that these dietary changes are life-long. I've lived my whole life without having a restaurant-centered lifestyle because we didn't have the money for it when I was growing up; and having a child with 15 food allergies really sealed the deal on no fast food. We are pretty used to taking food with us everywhere we go and, I don't anticipate making shocking changes to our diet, based on the books I've read (Breaking the Vicious Cycle and NIMBAL Therapy). I'm also in a milieu with other homeschooling families who are serious about eating organic, whole foods and cooking at home as a life-style, so I feel supported by my friends in that way. Maybe it won't be a workable diet long-term, but I think I owe it to myself and my children to try, especially since I'm waking up to the fact that all four of my kids are at risk for developing this disease.

I really appreciate your support and perspective and having the ballast of a reality check that this may not be a long-term solution.
 
I am starting elemental 028 tomorrow morning also.

All my water is in the fridge boiled ready so it has no bacteria.

And it is possible to go without meds, I last did enn ten years ago and have had no meds since.

You will not do it however without some form of enn, I would think 25% enn to food as a minimum daily as a meds replacment the more the better however.

I have not heard of the brand Orgain is this specific crohns enn medication ?

In the uk we have two main brands
Elemental 028
And nestle modulin

First 3 days is hardest so hang tight if your going full enn.
 
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I'd also avoid a diet after if I were you.

Listen to your mind and stomach not a cook book, eat safe foods that don't cause pain.

25% enn and avoid foods that make you flair I have just had a really good ten years from that.

50% een and safe foods that don't trigger crohns that would also lead to very long remission.

Everyone is different with foods, I can eat spicy curry but fruit kills me.
 
Thanks for sharing your experience, @westernbuddy. Orgain is a premixed meal-replacement beverage sold here in the U.S. It's not specific to Crohn's, but the nutritionist I spoke to who specializes in GI disorders was familiar with it and supported my choice. Though I would consider Modulen if it seemed like this wasn't the best choice for me. It's not much more expensive than Orgain.

Have you done regular scopes or MRIs in the last ten years?
 
A high proportion of patients with eosinophilic gastrointestinal infiltration were subsequently diagnosed with inflammatory bowel disease. Patients persistently symptomatic or who do not respond to treatment should be reassessed to exclude inflammatory bowel disease, given its high prevalence in this group of patients.
Click to expand...

From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6033761/
I should have stated eosinophilic disorders not just EoE

Scd or cced does work long term in some adults
I just wanted to be sure you understood that it was life long
Some folks don’t
I hope the diet works for you
Parents of kids with food allergies has a great eosinophilic section /recipe database

as far as Ds since was dx with juvenile arthritis at 10 -diet alone wasn’t going to be enough so in his case meds were a necessity
 
Thanks for the clarification about eosinophilic disorders @my little penguin. I did look up the overlap with EOE specifically, and there is a little bit. So far, I don't think there's evidence that my son has Crohn's, but it's good to know that my gut (lol) instinct is correct that he is at risk for it. I suspect my second son (7) may have Crohn's and I'm going to get him in to see a GI soon. My brother was Dx around 10 yrs old.
 
Yes I had regular scopes, all was good.. until now.

I'm trying to repat the process of full elemental diet again to induce remission and repair the damage, that must have occurred last 12 months.

So I have gone around 9 years no meds and great health, maintained with partial enn
 
westernbuddy said:
Yes I had regular scopes, all was good.. until now.

I'm trying to repat the process of full elemental diet again to induce remission and repair the damage, that must have occurred last 12 months.

So I have gone around 9 years no meds and great health, maintained with partial enn
Click to expand...

I'm sorry you aren't doing well at the moment, but that's really amazing that you went so long doing so well. It's really encouraging to me, and I'd be glad to get that far.
 
Hi there! Glad I saw the tag, I don't always get them.

My daughter's have both tried diet to control their Crohn's. We did IBD-Aid, CDED and more recently SCD. IBD-Aid and CDED didn't work BUT I can't say we had the best support from the medical professionals. Pretty much just had some guidelines thrown at us and told to figure it out. Also, my older daughter has very severe Crohn's that even double biologics on off label dosing can't control so I truly feel you can't judge a diet based on her.

That said, we most recently did SCD for a year. It is a lot of work but mostly just figuring out is this or that safe but as long as you make all your own stuff you are fine and it sounds like you are already living that lifestyle. I think you are going to do great! The most annoying thing for us about the diet was the no grains thing. Being Italian, we used to think celiac would be a death sentence for us and then they said SCD and no grains and we were thrown for a real loop. You have read the book so you are well prepared for what that means.

I will say, if you approach it with a sense of excitement and wonder, it can be fun discovering new recipes. We recently stopped the diet but my kids still ask for their favorite SCD recipes and I just had a craving for my favorite muffins.

SCD has been around for a number of years so there are so many resources online for recipes and such. Just be careful because some sites will list SCD recipes and then go ahead and list an "illegal" ingredient. Also, sourcing safe spices, supplements etc gets difficult because companies don't have to always include things like anti caking agents. Ofcourse, after awhile you may be able to tolerate those but for the first 6 months you want to be really, really strict.

Diet can work. There are plenty of studies that say it can. However, it is just another treatment option and just like the pharmaceutical options it will work for some and not work for others. Also, just like the pharmaceutical options it will not work for more people than it will work for. I think the high fail rate gives diet a bad reputation but it can work.

SCD to me is counter intuitive because it relies heavily on animal products for calories and there is plenty of science to support that animal products are pro inflammatory. It is super difficult for a vegan to gain and maintain weight on the diet because of the no grain issue so they take out two major food groups. But there is plenty of antidotal evidence that it works. Just not a lot of scientific evidence proven with scopes that it results in endoscopic healing.

CDED does a better job at proving endoscopic healing and is a somewhat easier diet to maintain, especially if you want to lean more toward the vegan lifestyle.

I think really what all these diet approaches are proving is that processed foods are bad and the more you can cook from scratch and avoid the pro inflammatory agents the better. So pick what works best for you and your family.

I am available if you need a recipe, resource, a pat on the back etc.
 
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crohnsinct said:
I think really what all these diet approaches are proving is that processed foods are bad and the more you can cook from scratch and avoid the pro inflammatory agents the better. So pick what works best for you and your family.
Click to expand...

Agreed. My husband was born behind the Iron Curtain and traditions of cooking real food as a community and sharing that food as a community still exist (though they are beginning to be threatened by food product interests). I love feeding my family real foods, but gosh, it wouldn't feel like swimming up stream so much if we hadn't abandoned real food a couple of generations ago.

Thank you so much for sharing your experience with me, I sincerely appreciate your encouragement and insight.
 
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Hello all! I finished EEN a week ago and have been consuming 50% elemental and 50% food based on the SCD. I got my calprotectin numbers back today and they have declined to 90 from 256 previously, so that sounds pretty good to me, right? I'm just hoping that SCD is the right dietary choice for me, and will have follow-up testing done in another 6 weeks or so.

My doctor and I talked about doing another MRI or colonoscopy. What do you all think about that? A colonoscopy is a pain, but the metallic contrast they use for the MRI really freaks me out! The warnings say they don't have long-term data about how long the metals stay in the body. Yikes. But anesthesia, of course, has it's own long-term risks.
 
That is not a bad book by Tracie D'alessandro

I'm not sure but the problem with following a certain diet may be some foods are not tolerated in that patient.

Making sure the body gets all the vitamins and nutrition to run is key to stopping a recurrence of symptoms however. You can feel yourself going down if vitamins are not right then the disease takes over. Rest and relaxation is key too even if that means naps.

I don't think you can ever turn down a colonoscopy In the crohns world that is best for observation.

You can also opt to have it without sedation.

I have done that one time, never again but each to there own it is possible.

I'm anti meds e.t.c too but that sedation for a colonoscopy I accept that.

Well done on completing enn, sounds like your as good as a zebra ; )
 
Circling back around here to thank you @westernbuddy for your opinion and thoughts. I may go ahead and buy that book, that's a good thought about vitamin deficiencies. I feel pretty confident that I have a good grasp on nutritional needs, but I'm always interested in learning more.

The thing about my Crohn's disease is that I have very few and limited ideas about what may be irritating my system. I don't get the diarrhea that is characteristic of most Crohn's cases. Except, however, when I eat peanuts or excessive lactose and I've known that for years and usually avoid both. I don't know if those food sensitivities are related to my Crohn's or not, because I hardly ever eat those things, but apparently I have stricturing Crohn's that's been active for a year...but no diarrhea. That's why I didn't think I had Crohn's in the first place. I was having persistent epigastric pain that led me to the GI's office.

The one food that I know was giving me terrible epigastric pain was wheat. My kids' pediatrician has an idea after reading some recent research that children who have undiagnosable celiac disease can later develop Crohn's disease as adults, and lack the diarrhea symptom. I find that compelling b/c it lines up with my experiences as a child with persistent abdominal pain but no obvious cause.
 
And thanks for the video about the DINE-CD study, I had meant to follow-up on that one because I had heard about it before it was published. I believe (though I could be wrong) that they used a modified SCD that allowed some rice and oatmeal? I'd have to spend some time finding that back again, whatever it was that I saw. Can't do that at the moment.

Anyways......I guess my overall point is that since I haven't been on this journey terribly long, I don't know what exactly does and doesn't throw me off kilter, aside from lactose, peanuts and wheat. And I guess that's a pretty good list to start with. I also have a strong feeling that processed foods just aren't any good anyway, and I may as well go 100% whole food. I had hoped that 80% whole food would get me through life okay, but I guess not. 🤷‍♀️
 
Wait
I didn’t realize you have stricturing Crohn’s disease and are trying to stop that high level of inflammation with just diet .
Crohns has three levels of disease
Inflammatory is just inflammation throughout the intestine
That can be mild to moderate but that’s the first level of disease
Moderate has more ulcers and inflammation
Fistulas /stricturing and obstructions are definitely moderate and most times severe crohns

So if you think of your intestine as a garden hose
Is soft flexible and can move
As inflammation cycles over time the cells build of scar tissue
This scar tissue makes the intestine more rigid -think pvc pipe

A fistula can be formed by the body to move around the thick hard to move area
But fistulas have thinner skin ,tend to rupture and sometimes lead to weird spots (ie not the intestine )

Strictures can form because not only is the intestine hard like pvc pipe but the scar tissue keeps building and narrows the opening so stool has a harder time moving through

This lead the softer part of the intestine after the stricture or before it to have a lot of pressure put on it to move stool through
Which can result in ballooning of the intestine that can burst .
Strictures once formed don’t heal
Only surgery fixes them with removal
The key is stop inflammation cycle
So more cells are not damaged

Please see a second opinion Gi

My child has very mild crohns (only inflammation/granulomas - no ulcers ) some mild thickening at TI but no strictures
 
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I have two strictures, one in my dudoneum one in my ileum.

Doctors want me on the strongest meds in the world as I have upper gi stricturing crohns.

They could be 100% right and I may be being very very stupid.

Current strictures I have had since 2009 ish, it's now 2021 and I have only just took some meds, prednisolene.

Managed with partial enn, partial enn and correct foods work without doubt, well they have for me anyway, often people don't last 12 years on a biologic.

If I go of my routine of diet and enn for more than 3 days I'll go downhill very fast.

In the last ten years I have travelled the world several times never missed a days work, if travelling I make sure I take stuff to make my enn, and my quality of life has been amazing and crohns has been little to no part of it.


Now I'm in a bad flair, and don't know my future.

I'm cautious of biologocs the side effects, people still relapse, still get bad symptoms on them, still end up with surgery in some cases, then we have malignancies, serious infection, azathioprine permanently adjusts dna and you have to be monitored for life for skin cancer even if you stop and you only took it for a short time.

These crohns meds are a long way from being a bunch of roses.

For me I wish I could continue to manage with my partial enn and diet.

If I do a biologic I may want to quit if it gets me in remission and try managing with my old technique, I'll be debating it.

Think I have about 2 weeks before I have to pick a biologic and start it.

And at the same time I'm wacking the prednisolene and enn in myself full blast trying to get that remission before that date comes.

In reality I don't know what path will provide the best longest future for me, I debate it daily, and almost need a headmaster type character to give me a really good telling off and tell me what to do.

Often doctors are not even 100% sure as crohns is still such a puzzle.
 
@jadegreen
Please talk to @Optimistic
Her child did een with SCD
I don’t believe he had strictures though

@westernbuddy
please avoid long term repeated use of steriods
They are not benign and do not have potential side effects
They have known side effects since unlike other meds they have been used for 30-40 years
 
my little penguin said:
Wait
I didn’t realize you have stricturing Crohn’s disease and are trying to stop that high level of inflammation with just diet .
Crohns has three levels of disease
Inflammatory is just inflammation throughout the intestine
That can be mild to moderate but that’s the first level of disease
Moderate has more ulcers and inflammation
Fistulas /stricturing and obstructions are definitely moderate and most times severe crohns...
Click to expand...

Thanks for sharing that with me, @my little penguin, I did discuss this with my GI. It was an obstruction that finally landed me in the ER; it was causing epigastric pain (tho the strictures are in my terminal ileum). From my colonoscopy, she thinks there's a chance that my stricturing was simply caused by extreme inflammation. She couldn't be sure that they had completely scarred over, and she said that in her practice she has been amazed by the body's ability to heal itself (and this is a large GI practice in the Baltimore area, so she and her colleagues see a lot of patients and are considered one of the top 10 practices in MD). A GI from UMD also look at my medical history.

The strictures are the main reason I'm going to have new imaging done in Aug/Sept. And I'm probably going to go ahead and go the colonoscopy route, rather than the MRI route. If there are still strictures present, then at least I know to lean more on blended foods and cutting other foods very small (which I have been doing). Or maybe she will recommend surgery at that point, but I don't want to jump to that just yet.

If it turns out that for me wheat and non-food-addititves are primary triggers for me, then I will count myself very blessed because I don't see that as too hard to live with. But, only time will tell.
 
westernbuddy said:
I have two strictures, one in my dudoneum one in my ileum.

Doctors want me on the strongest meds in the world as I have upper gi stricturing crohns.

They could be 100% right and I may be being very very stupid.

Current strictures I have had since 2009 ish, it's now 2021 and I have only just took some meds, prednisolene.

Managed with partial enn, partial enn and correct foods work without doubt...
Click to expand...


I understand where you're coming from. When I read the drug info for the drugs available for Crohn's, I'd prefer to avoid. I realize that I may eventually need them; there will probably come a time when living with flares is more serious and pressing that the side-effects, but I'd love to push that day further down the line. I pray that someday we understand this disease better and can learn how to prevent it. It does sound like simply eating more fruits and veggies goes a long way (from what I've read in the abstracts from several different studies), and, from what I've read over the years, eating organic to avoid herbicides. They are antibiotic and can disrupt microflora in the intestine.
 
Hey, thanks for checking in. :) For one, I feel like at least one of my strictures is permanent (imaging showed two or three). I can feel boluses getting stuck in one spot and taking a while to make their way through. So that's not encouraging.

For two, I'm looking forward to reaching the end of my first trimester with my current pregnancy. My morning sickness has not been nearly as bad with this baby as with my others, and I think it's because my Crohn's is far more under control than it was in the past. I'm hopeful that this time my nausea will wrap up in week 12, rather than week 16 or 20. I think my nausea dragged on so long just because I was having terrible Crohn's flares in my first trimester.

And I have lost weight with this pregnancy as I have with the others, but I know that I have always caught up in my second trimester, and I'm feeling so much better--just have to hold on for a couple more weeks. I'm also going to try Modulen instead of Orgain to supplement my diet. I just don't feel like I'm getting much from the Orgain. When my energy returns, my hope is to be cooking more, make more smoothies, make blended soups and just kick Modulen or Orgain to the curb, if possible.

Of course, getting pregnant sooner than planned means I missed my opportunity to get follow-up imaging done until after delivery. But, it is what it is, and I know so much more about what is going on with my body this time than I did with my other pregnancies so I can take steps to care for myself better.
 
If you in the US
Peptamen is semi elemental and complete nutrition (maybe not for pregnancy) but still complete nutrition
Orgain while organic is a nutritional supplement so not complete
It’s also polymeric so not broken down and harder to absorb nutrients
There are organic peptide (semi elemental) complete nutrition-Kate farms is one of them
That said
My teen would drink
Peptamen jr
Peptamen jr with prebio
Neocate jr with chocolate

but would not touch vegan orgain (we have a milk intolerant non ibd kiddo in the house )
He hated Kate farms peptide
I think it’s all in what your used to
 
I tried the vegan orgain, and it was just awful, I can't blame him. ;)

My son had an anaphylactic reaction to a Kate Farms product with pea protein in it, so I have bad feelings about that brand. I'm going to try Modulen, but I will keep the other options in mind. And yes, I'm in the U.S. :)
 
As an update, I did end up trying Modulen, and it made me horribly constipated (the Orgain did too, tbh, but this seemed worse) and it tasted gross--I mean, waaa, cry me a river, right? but I had other options. I ended up finding a smoothie recipe that I liked, and drank that for a while instead and I've been gaining weight well since then.

My blender broke, I bought replacement parts, but, again, 4 kids and pregnant, I haven't exactly had time to replace the pieces, so I've been trying to eat the smoothie components for breakfast but....it's just not the same. :LOL: I can't get as much into me that way, and I probably need it all.
 
Are you drinking these with milk or water? Are you drinking warm or chilled ?

I always find water and very cold best, then finding the favourite flavour.
 
westernbuddy said:
Are you drinking these with milk or water? Are you drinking warm or chilled ?

I always find water and very cold best, then finding the favourite flavour.
Click to expand...

I'm not drinking any of them at all anymore. Both nutritional shakes made me constipated. I swapped them for the smoothies, which have been much more agreeable for my digestion.

But, when I was drinking Modulen, I was mixing with water. I can't tolerate regular milk due to lactose. And I hate the taste, always have. I know you drink Modulen :) but it makes me nervous that it hasn't been tested on pregnant women and it contains hormones. Nestle says they are naturally occurring, but it is still disconcerting.
 

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