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Update on the Holistic Route

Some of you know that I gave up the med rollercoaster over a month ago. Now that this phase has progressed a little further, I thought I'd share my story with this alternative.

I was on the typical list of Crohn's meds, and a month ago or so had been heading for the stronger meds with more risks, more side effects. I have to say, like a lot of people I'm sure, I became severely depressed and disconnected on the meds alone. I had to be homeschooled, could not get out of bed most days due to fatigue, and suffered some emotional disturbances that are uncharacteristic of me altogether. All things that this forum could have told me would happen. Before the meds, I felt like I had a handle on things, taking the disease one step at a time. Once the side effects began adding up I considered my life with treatment even worse than my life without it. I began searching for alternatives.

For anyone considering natural treatment, keep in mind that in my case, I initially had no support. My team of loving family and friends who had held my hand in and out of the hospital suddenly could not connect with me anymore. Once they heard my dream of a disease without medication, they retracted in fear. And that's what it was - fear. I had felt it, and I couldn't blame them for feeling it. I had lived in it! But you know, I'm sure, that there is a certain place of desparation that dissolves fear. Once I hit that level, I was determined to either heal my flare up holistically or die trying.

I told everyone "I will never forgive myself if years from now I am told that I am infertile, or I have cancer - if I never try this. If it doesn't work, I'm a fool and even sicker. If it does, my life changes."

I sought out a holistic doctor recommended to me here in Pittsburgh. It was a month away and so I talked with my medical doctor about the polymeric diet - 6wks of Ensure shakes to replace all solid food; gives the bowel rest and induces (IMMEDIATE in my case) remission. Then, I met with the holistic doctor who advised a vegan diet, initially just smoothies and juices of wholesome organic fruits and veggies. She was a sufferer of Crohn's at my age and gave up meds to go to school to become certified holistically, treated herself, and is the picture of health. Yes, every case is different, but it was worth a try.

I am done with my liquid diet, I take no medication, just supplements (herbal and iron, calcium). I have no symptoms, no side effects. I eat vegan organic soups, smoothies, juices, and about 1 solid meal per day. It is a LIFE CHANGE, be sure, but for me, necessary. I adore life and I am a writer, I interpret my world - something I found hard to do on medication in the midst of side effects and barely treated symptoms.

Yes, it is true that this is an immune disease. I could flare up at any moment. So what will I do? Back to the liquid diet. Continuing to give my body the nutrients it requires to heal itself. Our bodies were equipped to heal themselves (your blood clots when you get cut, your bones mend when broken). As immune sufferers, we're at a disadvantage. I will therefore work all the more to supply my vehicle with the fuel it needs. No synthetic, no science experiment fast food, none.

If you want to try this route, I would recommend it. I have a severe case of Crohn's, flare ups nearly 2 years long - I know what we are up against. No one assured me if was safe. In fact, many said I could die or make things worse. My labs (as reported by my medical doc) indicate perfect health, so have the exams. Is it just my particular case? Could be. Is it worth a try? It depends on how desparate you are. There is something to be said about all of this.

I keep a good relationship with my medical doc, should I need anything.

I am aware that this is not a route all are supportive of, which I can appreciate - we all go through very different struggles with this disease and the path someone chooses to take should ONLY allow them to live normally and happily - and if you can do that, no matter how, your method is sacred.

I just wanted to share this with those who are unhappy and considering the looming alternative that many scourn, especially the medical field. I mean, my family still calls my holistic doc a 'witch doctor'. But I feel GOOD, for the first time, and I am dedicated to these very drastic lifestyle changes for this reason, none other.

If you want to talk, just message me!

PS: You probably know that this is an expensive lifestyle - health care does not cover holistic doctors, and organic food can take a paycheck. My family is middle class, I live with my single mother - and we are able to do it, however. We made sacrifices is all. I am thankful to have those in my life that will (eventually) support anything that allows me to be the person I am, not a patient.

THANKS for reading all of this. :)
 
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Dexky

To save time...Ask Dusty!
Location
Kentucky
Shannon, I certainly commend you and just want to add my support. If I was the patient, I would certainly want to try a natural route. When my son is old enough to make such decisions, I won't fault him if he wants to get off the meds someday. Good luck! Keep us posted!
 
Thanks so much! That's great - my parents making the decision to finally support me really finalized everything, it made it a financial possibility that I could be openly excited about. So important!
 
That is wonderful. I've been considering trying something similar. Have you read "Self-Healing Colitis and Crohn's?" It recommends a diet change very similar to what you are eating. Vegan, lots of juices and smoothies, very little solid food. Your story may be what pushes me to try it. I'm so glad it's working so well for you. Have you been able to maintain your weight eating that way? That's my biggest concern--My BMI is low and I have a lot of trouble keeping on weight, so my doctor put me on this high-fat/carb-loading diet that keeps weight on me but cannot possibly be healthy.
 
Stella luna, so glad you read then! Yes, I have maintained my weight. It is definitely a responsibility to keep watch on with these dietary changes. If I find that I'm too lazy for a homemade soup to finish the day with, I have an Ensure - which is very supplemental and filling. I make sure I fill the gaps with Ensure, but on most days I try to really focus on cream of vegetable soups (made with almond milk of course) and veggie broth, and fruit smoothies, and green smoothies! What you can also do that I really love is a good spoonful of peanut butter a day for protein. Make sure it's organic, just peanuts and maybe sea salt. Very good! Bananas do not bother me on liquid food days, since they are so soft. With pb they are delicious! Another favorite is mashed potatoes.

My holistic doc gave me a lot of great ideas, but independently, I found a lot of things in recipe books and smoothie books. Vegans need to fill their protein quota, and most do with nuts, beans - what you would imagine. We however should focus on nut butters, which are so yummy, good, non-acidic fruits, and lots of colorful veggies - in a high power blender until your tummy recovers.

If you want any recipes, let me know!
 
Also, I have not read that book but I will look into picking it up! I like getting all sorts of ideas and combining them to suit my diet. There's so many tasty options, it's a shame so many people think this diet is limiting!

Your diet doesn't sound too unhealthy, as long as your high-fat content is the good fats, what you'd get from nut butter for instance. Flax seed oil is really good to put in any meal, since it is tastelss - lots of good fat for you. I add it to whatever I'm eating, smoothies, soups; I also cook with it. :)
 
Lots of apples! Here's a trick: to get in the veggies that you need, for some, it's not the tastiest- but an apple will overpower most flavors!

Let's see, pears, bananas, mangos, peaches - all skinned of course. I avoid seeded fruits and also high acidity fruits like oranges. I pep things up with some pomegranate juice in the smoothie, as well as unsweetened almond milk.

Try this!: Apple Pie smoothie, combine all in blender
1 peeled/sliced apple
1 cup almond milk
pinch of cinnamon
pinch of ground cloves
pinch of nutmeg
 
I realize there's a wide spectrum of cases out there, and I don't want to discount those stories which are just uphill battles, but I really like to hear about the cases like yours Shannon to help with perspective.

Also I wish we could get peppered with the invisible sector of IBD stories which are people who get by for years without doing anything about abnormal GI systems, IBS, or similar. But anyway, thank you everybody one and all for your posts, each one, and thanks Shannon for posting your story!
 
Well, my family is already vegan, so that part of it won't be hard! What will be so, so hard for me is going gluten-free. I am a huge carb addict. I say my diet is unhealthty because it includes very little fruits and veggies, which my doctor said to stay away from, but honestly I think eating them your way--blended, juiced--should pose little porblem in general. My GI is one of the top Crohn's doctors in the world, but does not seem to have any suggestions about diet except to tell me to eat low-residue. Oh, and to recommend chicken to me every time I see him. Not helpful!

The high-fat in my diet is from nut butters, oils, things like that. I also eat flaxseed oil daily.

Thanks again, I am definitely going to try this and hopefully get off Imuran.
 
Great to hear from everyone! Kildare, I don't use frozen yogurt because it's dairy, I just use cold almond milk and it works really nicely. Sometimes some ice cubs (if you have a good blender) gives it a nice texture.

Stella, great high fats! Yeah, I had the same problem - docs that are excelling in treating Crohn's with meds, but not apt at understanding the diet part.

I can honestly say that blended fruits and veggies don't bother me at all - I have no bloating, no gas, no pain. I haven't felt like a normal person in so long!

As far as gluten-free goes, I KNOW! I miss a lot of grains. However, grains like quinoa and brown rice may do you no harm - and if you need a bread substitute, a nice brown rice wrap is tasty as well. For the most part everyone finds their own do-able cheats that they can sneak away with. ;)

Troy, I so agree - the only thing this forum is missing is a lot of the healthy people out there to give us hope! I'm glad my story can give some motivation in an otherwise dreary matter.
 
And haha Stella - chicken!? Even if it's organic it's so high in uric acid! Well, my doc told me to drink SODA. It's my personal opinion that there should be a more extensive nutrition class in the medical training degree... :p
 

AZMOM

Moderator
Good for you, Shannon! Glad to hear you are doing well....your story is inspiring. And we could all use a little inspiration!
 
This sounds very interesting.

It is basically what I am doing too, plus juices and smoothies.

I would love some ideas for blended vegan soups if you have any to spare?

I have been trying to give up meat and dairy for a few years now, as both give me horrible pain and blood. I have had some excellent results with diet BUT I have also done very silly things like eat foods I KNOW upset me. So I often take 1 step forward and 2 steps back.

So this year I have finally decided to go 100% vegan.

Dr Joel Fuhrman says that “recovery is possible through aggressive dietary modifications”, and his vegan diet ideas are really helping me so far.

I have only been following his vegan diet and supplement suggestions for a short while, but already I am seeing some very promising results. The pain has stopped. The blood has stopped. I have more energy. And I have stopped doing dramatic rushes to the loo.

My only issue is not falling off the vegan wagon and back into bad food habits. That will be my challenge this year.

I have eaten organic vegan food made at home off and on for a few years now. But yesterday I went to my first proper vegan restaurant and the food was sensational. It was absolutely gorgeous. With food that good, I hope I won’t have problems staying vegan full time.
 
Have you read "Self-Healing Colitis and Crohn's?"
This book started me off a few years ago, and I had excellent results.

But I have struggled with giving up dairy and meat over the last few years.

So I have been taking 1 step forward and 2 steps back.

However, I have finally taken the bull by the horns and got serious. Hopefully I can now sail forward with the vegan diet full time and lifelong.
 
I say my diet is unhealthty because it includes very little fruits and veggies, which my doctor said to stay away from, but honestly I think eating them your way--blended, juiced--should pose little porblem in general.

Ripe banana, ripe red papaya and ripe yellow pawpaw are very soothing for the bowels. Ripe papaya practically melts in your mouth anyway.

These are the only fruits I can eat during a flare. Things like steamed squash, steamed sweet potato and steamed carrots are also good during a flare.

And I can consume the juice of practically any fresh vegetable juice during a flare.

And as I am discovering, water fasting is fantastic when flaring. I am now planning to include water fasting in the future if I have pain again

For dinner I had a very well blended smoothie made from ripe banana, ripe red papaya and fresh coconut water.

Had a flare over Xmas due to poor food choices. But now feeling better than I have for weeks, thanks to supplements, juices, smoothies and vegan foods.
 
Ah so thankful for you guys and your ideas!
Miss Spencer, FUNNY you should talk about eating the wrong foods knowingly - just last night I had some candies - the chemicals threw me into a flare this morning; WOW did I learn my lesson. Vegan is so helpful when you can stick to it...

I too eat bananas when I'm flaring, with some organic peanut butter, so good.

Our diet sounds very similiar, yes, supplements and juices, smoothies and the occasional very vegan very natural meal (for me it's potatoes often).

DEFINITELY have a vegan soup idea for you, and as long as it's pureed, you shouldn't have a problem. :) I like to add more potatoes to it. I leave out the cayenne when I'm not sure how I'm feeling.

Cauliflower Soup

Ingredients:

2 T extra-virgin olive oil, butter or coconut oil
1 medium onion diced
2 cloves garlic minced
Sea salt and pepper to taste
1 head of cauliflower cut into 1 inch pieces
1 medium red skin potato chopped
2 ribs of celery chopped
1 bay leaf
5 cups of vegetable broth
½ tsp nutmeg
Cayenne pepper to taste
Finely chopped red pepper and/or parsley to garnish

Preparation:

Heat the oil or butter over medium heat. Add the onion, garlic and sea salt and sauté until the onion is soft, about 10 minutes, stirring often. Add the cauliflower, potato, celery, bay leaf and stock. Bring to a boil. Lower the heat and simmer covered for about 30 minutes until the cauliflower is tender. Puree the soup in a blender or use a hand immersion blender to blend until smooth. Return to the pot and heat through. Add the nutmeg, cayenne and additional salt and pepper if needed. Garnish and serve.

Servings: 6 servings
 
Congratulations Shannon on feeling better and what you've accomplished. I've just begun to juice in order to get my veggies and find your post inspiring. Whether I'll ever be able to go as far I don't know but I'm taking some baby steps.
 
im looking into fighting crohn's herbally once im stable on my medication.. i have ordered a book and am so happy you post this.. im looking into what your saying and even asking around for doctors that treat patients this way.. its kinda hard finding that where i am but i have family in new york so hopefully i can find a doctor there
 
Yeah, Shannon, for some reason he always tells me to eat chicken. And ice cream. I mean . . . ice cream? Really? I know I'm too skinny but for goodness sake . . . that's just begging for trouble. I have to remind him at every appointment that I eat vegan, and he just looks at me, flummoxed. This is the head of the Crohn's Division at U of Penn, for goodness sake.

Well, due to this post I've decided to take the plunge, so thanks for the inspiration! I got together a food diary and went to Whole Foods and bought a bunch of organic veggies and fruits for blending and juicing. Wish me luck . . .
 
Stella Luna, I remember my first time at Whole Foods going crazy, spent so much on fruits and veggies - its so exciting! Yeah, my doc even told me to drink 8 glasses of MILK a day. For Crohn's? It was because I was skinny too. But seriously. XD

So happy that so many you guys are a little braver about this. I was so afraid to get off my meds, and no one around me had ever done it, but I knew I had to - best decision I sincerely hope and pray the same results come into your lives and show you (and us all!) that there is a rich and healthy lifestyle out there without the nasty side effects!

Baby steps are GOOD, keep it in mind. I still struggle from time to time with solid food if I don't transition (smoothies to mashed veggies and then to something a little more solid). And don't be discouraged if you need a dose of pred here and there - it takes care of the inflammation quickly and allows you some time (always remember that natural remedies and healing is a much longer process than what we are used to). :) As long as you never have to hear the words "maitenance drug" again, all is well, right? <3
 

DustyKat

Super Moderator
Good on you Shannon!

Roo has gravitated toward a vegetarian diet in the last 12 months and then vegan/organic about 6 months ago. She has never seen a Holistic doctor, it was just something that over time seemed to sit best with her and her issues with short bowel syndrome. She is on Imuran 50mg daily but to be honest with you I don't know if she continues to take it.

She has been fortunate in that she has a number of friends at college that are either vegan, nutritionists/dieticians or practice Chinese medicine that have helped her along the way with advice about supplements and her crohns. She is feeling well and energised so YAY!

I agree with Dex. I support her 100% in her decision to go down this path, after all it is her body and she has to live this day and day out, not me. It's great to hear your parents are on board with you, as you say it really is important and makes all the difference to have your loved ones on the same page.

So happy for you hun, :)
Dusty
 
That's so great that your daughter seems to know all the right people and how to cater to her body - gives me hope because I am off to college soon. I get nervous every once and while knowing that even good stress like a new school and moving out can throw me into a flare up. I know the best way to handle it is to stay calm though. :)

Great to hear good news!
 

ameslouise

Moderator
Shannon - Reading your posts, I can't believe you are only 18 years old! You are one together lady. Kudos to you for taking your care into your own hands. Boy, your doc sounds like a moron. (8 glasses of milk a day? For a Crohnie? Sheesh!) Maybe you should have someone else in the on-deck circle. PGH has so many great health care options.

Sooooo happy for you that the lifestyle/food change has helped you! Starting with bowel rest and liquids only was smart. With your attitude and the support of your family, I am sure you will be successful in maintining your food lifestyle.

The hardest part for me when I was vegan was eating out as all "vegetarian" options are loaded with cheese! But there are so many great vegan options out there for milk, cheese, meat replacements. My faves are almond milk, rice cheese and Quorn brand products.

I could go on and on - have you tried making baked kale chips? GREAT way to eat greens and really easy on the gut!

Good luck - congrats on your remission and thanks for sharing your success!

- Amy
 

ameslouise

Moderator
PS Are you taking any vitamins/supplements? And are you getting your blood tested regularly?

I was concerned about not getting enough protein when I was vegan, but my bigger issue was IRON. Plenty of non-animal sources of iron out there, but they are not as well absorbed without animal sources of iron. But you probably already knew that. :)
 
Thank you! :D

My holistic doc has a great recipe for baked kale chips, I'm gonna try it now that you say it! Yes, everything is cheese, cheese, cheese - and now with the Steelers in the Superbowl, I'm going to have to dodge tons of gameday appetizers. I'm making a roasted red pepper feta dip for everyone, though. It's comforting to feed other people food I can't have. At least someone's enjoying it!

I hadn't heard of rice cheese but it will be on my shopping list now! I am on an iron supplement, a probiotic, a calcium sup, a slew of chinese herbal supplements (one is bovine colostrum in a pill - weird but soothing to the bowel). I get blood tests regularly, still a great relationship with my med doc - she keeps track of my levels so I can report to my holistic doc, who can then give educated advice.

Haha, the doc that told me about the milk was - believe it or not - the hospital nutritionist! Quickly parted ways with her, first thing she said was "So you have Crohns? Lucky for you it doesn't matter what you eat." And I'm thinking, right, because when they diagnose you with lung cancer they want you to keep smoking, too?

XD
 
Piatchi, you beat me to it, just as I was highlighting the same quote.

The thing is, something like this is the overwhelming message out there in conventional health care. What they should teach, it seems, is that it matters exactly what you eat, but that so many people react to so much in such different ways that it's a lot of hard scientific work to figure out what's best for each patient. Not to mention the personal cultural aspects of messing with diet.
 
Completely agreed. There is a definite schism in the medical field concerning Crohn's (at the very least, haha), and what seems logical (eat right, you have a digestive immune disease) is getting replaced with what more people will comply to (take these awful pills and enjoy the same detrimental lifestyle you had before).

!?
 

ameslouise

Moderator
I concur that most people would rather take a pill and live the unhealthy way they did before than do the work to change their lifestyle. I ended up going on the meds after a year of vegan eating and tens of thousands of dollars of "alternative therapies" did not improve my condition even one iota. But I had to try it.

Even though I am eating animal products again, I still try to be really good about not eating processed food and just generally eating healthy. No one ever died from a healthy diet, right?

So you are still eating dairy or are you using "fake" feta??

Go Steelers! - Amy
 

Astra

Moderator
Hiya Shannon

I've just read all this with interest, and what a lovely articulate girl you are!
I've adjusted my diet somewhat, but I can't eat vegetables, it also worries me a lot about refined flour as I'm on a low residue diet, and white bread is my safe food. But I don't eat red meat now, only chicken and turkey or fish.
I've tried juicing and smoothies and ended up really sick, gassy and bloated, so low res is the only option for me, that and my Pentasa.
So happy this is working for you, and hope it does for many years to come!
Take care
xxxx
 
Yeah, my doc even told me to drink 8 glasses of MILK a day. For Crohn's?
The specialist who first diagnosed me is one of the top UC doctors in the country.

He told me that diet had absolutely NOTHING to do with UC, and changing my diet would have absolutely NO effect on UC. And supplements were a waste of money.

Although he did say: in the early stages when I was seriously inflamed that I should stick to simple foods like meat, bread and dairy!!! And then once I felt better, I could eat what I liked.

Since discovered that meat, bread and dairy are the very worse things I could eat. They give me pain, blood, mucous and a million trips to the loo.

He also said I would have to take drugs every day for the rest of my life. I have not taken a UC drug for almost 7 years, and don’t plan to ever again. I am going to stick with vegan, smoothies, juices and supplements. I feel fantastic today, not felt this good for a long time.
 
I used real feta and just had my boyfriend taste test for me - I didn't have any. It went over well! Too bad the Steelers lost, but such a good game. It's funny, everytime I'm with family, all I hear is "You look so good! Your face looks normal again. What a lovely figure. You look so much better. Do you eat yet?" Haha. I'm sorry that a lot of the alternatives did not work for you - but I feel the same, had to try it. Felt it was a responsibility.

Astra, thank you! I wonder why juicing and smoothies are difficult for you. Veggies worry me unless in a smoothie. Really miss the days when a girl could eat a salad without gambling everything. XD

Miss Spencer, meat bread and dairy I've found to be the worst as well. What holistic doctors told me, my body confirmed. Great to hear you feel fantastic! When I have days like that, my body is like a horse at the gates - I always feel like bicycling for hours, no matter the weather. All the idleness this disease imposes just builds up! AND it's amazing you haven't taken any medication in so long. What a proud achievement! That is seven years of self discipline! Gives me hope... :)
 

DustyKat

Super Moderator
Astra, thank you! I wonder why juicing and smoothies are difficult for you. Veggies worry me unless in a smoothie.
I hope you don't mind if I chip in but Roo can't juice either, goes through like nothing on earth! Yet she has no trouble with raw or cooked vegetables and fruits. :confused2:

Dusty. :)
 
wow

I'm so glad I found this...I would like to do this too, control it with diet and supplements without meds. Im on a Gluten free diet at the moment my next step is to give you red meat, Im doing well with that at the moment i have it about once every two wks. Im not sure if i can go totally vegan though. I think Im too used to having some kind of meat...chicken is my thing right now, having it twice a day, roasted chicken with no seasonings at all.
Im doing smoothies also but I am doing Bolthouse farms that you buy premade organic and V-8 for veggies.
Im not sure Ive seen on here what supplements you're taking, Have you tried slippery elm or cats claw?
 
Yes, it is true that this is an immune disease.
Don't believe that for a minute. Keep doing what you're doing, and good for you!

No medical professional can cure what they call Crohn's (which is just a collection of symptoms) because no medical professional knows what causes it. Best any medical professional can do is alleviate some symptoms, like buffing rust off a car, cutting off a rusty part, or in most cases just painting over it.

Keep in mind all the people who told you, before you fixed yourself with diet, that diet makes no difference - including the same medical professionals who tell you it's an immune disease.

The mind is just as powerful as the body, maybe more so. Use it in your favour.

I've been medication free for several years now, it is possible.
 
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Shannon, I didn't see where your Crohn's is located? For me food of any kind doesn't effect my Crohn's. I guess because it's in my Sigmoid area. My Doctors say I have NO food restrictions. So for a person like me, I wonder what I can do to stay off meds to keep my Crohn's in remission. I found out 3 months ago I had Crohn's and it seems to me that inflammation is my only problem. I already take Krill oil and turmeric for inflammation. Any other ideas for me?
 
Hi Shannon,

Great to hear that you are doing so well! It keeps me motivated to continue with trying alternative treatments...maybe if we keep this up, crohn's patients will be the healthiest lot out there :). I need to laugh at one of your comments (not in a derogatory way), but brown rice wraps! Really!? I can hardly chock them down...too dry! I've been allowed spelt bread by my NPM. Also, I do have chicken and fish.

@STLgirl. I think that even if you have no food restrictions, a different diet could do wonders. You'd be amazed at what the food you're eating might be doing to you.
 
Shannon, I didn't see where your Crohn's is located? For me food of any kind doesn't effect my Crohn's. I guess because it's in my Sigmoid area. My Doctors say I have NO food restrictions. So for a person like me, I wonder what I can do to stay off meds to keep my Crohn's in remission. I found out 3 months ago I had Crohn's and it seems to me that inflammation is my only problem. I already take Krill oil and turmeric for inflammation. Any other ideas for me?
Fresh made vegetable juices, not canned, boxed, or pasteurized. Carrot juice.

Even better equal parts carrot, parsley, celery, spinach. About 1L in total, daily if you are feeling well. More is better though.
 
Endibd.......Are you saying fresh vegi juice is good for inflammation?
It works wonders. Not just for inflammation, that's buffing the rust off. It helps address one of the core issue essential to healing, which is to provide your body with both proper and adequate nutrition to allow your body to heal itself.

5-10 servings of vegetables? You can drink that with breakfast. And again with lunch. And again with dinner.

You can push all that nutrition through your body in an easy to digest manner in copious quantities with fresh vegetable juices.

Look at it this way - when you eat foods that are not proper, natural foods, whether heated, stale, insufficient quantities or missing altogether, your body does what it can with what you give it. It repairs and builds your body's cells with what it has. If it doesn't have what it really needs to work with, it will make do, but it will build a body that isn't what it should be, and is susceptible or disposed to all these ailments.

You can reverse that process and as your cells get replaced, and allow your body to build itself properly if you give it all the tools to do so. Providing those nutrients is key.

Juicing is a great way to do that, especially if you have absorption issues. It won't just stop inflammation, it will help to hit at the root of the issues that are causing it.

Now, depending where you are now, disease wise, with digestive issues it's tricky. It's like chicken and the egg. You can't eat, you can't absorb food - yet you need to eat and absorb food for your body to heal. Tough spot to be in, and that's why I think juicing is amazing.
 
I wish I could say the vegan thing cured me, but it didnt. I did it for 9 months total. I did have some improvement for a few months and then slipped into a severe flare. I also slipped into severe denial, because I didnt want to admit to myself it wasnt working anymore and almost needed emergency surgery again. I wish I would have went back to my doctor sooner.

I will say that in my experience, a whole foods diet, supplements, exercise, avoiding toxins, and my medications have all played a role in going into remission. Even the long remission I had was triggered by immuran. I only took it for 1 year and I remained in remission for 3 more years med free after that. For me it was finding that delicate balance between natural and medical.

Doctors will always say there are no food restrictions because they have no clue about a diet connection to the disease. Also what is bad for one crohnie is good for another. People have all cut things like wheat, dairy, meat, soy, refined carbs/sugars, etc with varying degrees of success. Its all about finding what works for you. I know that wheat and non fermented dairy give me terrible bloating when flaring and probably have something to do with my illness.
 
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I just read this whole thread. I remember when I was first diagnosed, my GI told me "your gonna read all kinds of info on the Internet about food affecting it but it really doesn't at all" After I thought about that and was like, how can it not?? The problem is in my intestines and thats where whatever I put in my mouth has to go, so it seems pretty logical to me!!! He has also told me probiotics and other sups don't work and are a waste of money!!! He is supposed to be one of the leading and best GI docs around!!

Also kale chips are awesome!! I have a great recipie that you put honey, rice vinegar, and salt on them. Mmmmm so good!!

I'd love to be off the meds one day! I think once my remecade stops working, I'm gonna try to control it with just diet. I already try to stick to a paleo diet (caveman diet) and it works pretty good.

One other thing, have any of you gone for a food sensitivity test?? A friend with crohns went for one and now follows it very strictly, she says it was the best thing ever, she is down to one solid bm a day!!!!!!

Sorry for the novel guys!! :p
 
Good for you Shannon! Good to hear you taking your health in your hands...I am hopefully going to get to that! I am doing a gluten free, sugar free and lactose free diet...I am still on Imuran, but hopefully getting off it soon. I am taking supplements and probiotics as well as psyillium...things are getting better and I am planning on stopping the imuran shortly...I hope my anxiety will not get the best of me...I tend to get a little anxious now if I change things up when things are going well...worried of a flare, but then again I am sure you know all about that......Good luck to you!!!
 
Well thank you all for your encouragement and interest! Sorry I haven't been responding, I've been in the hospital all week - but not for myself, for family. Had to be careful that stress didn't flare me up. Luckily, I'm flare free, but with strep throat instead. Ahh...

SO. The supplements I'm on. I actually take bovine colustrum, which if you do a bit of searching online, you'll see its highly recommended for us folk. I will list my other supplements soon, forgetting the names now...

My Crohn's is located from top to bottom, unfortunately. The disease has been concentrated in my lower colon, but I have 'crohnic inflammation' just about everywhere else. So I was suprised to hear that the location of the disease would affect the success of diet. What I would say to that, is perhaps you won't see the same results as me (?) with sigmoid focused Crohn's, but there is no denying the benefits of eating healthy. This is afterall a digestive disease, but if you're convinced it's not helping, even on meds this diet will add to your health. :)

I was also suprised to hear that juices and smoothies take their toll on some of you - the worst part of this disease is that everyone has such different limitations!

I have never done a food sensitivity test - what does it entail? Sounds like a good decision, takes the guess work out.

I agree 100% that fresh veggie juice is wonders for inflammation. Vegetables have healing enzymes, and juicing them ensures proper absorbtion, and less chance of irritation. I quite like vegetable broth, too.

I as always encourage those of you who are contemplating this decision - in a little over a month I have gained energy, motivation, and lost the depression that hindered me from my goals. I recently got accepted into college for English Writing and I'm looking forward to making health a priority, and by that I mean - not just taking meds! :)

In the spirit of proactivity, I've also been exercising for an hour a few times per week. Effect on disease to come!

Shan
 
A liquid diet can do wonders.

I have had really good results with plain old fibre as well. Specifically psyllium - for binding things up and healing a raw... exit.
 
That's awesome Shan! So glad you are feeling so well!
The food sensitivity test is really easy, doc finger pricks you to take a sample of blood just like for a diabetic and then sends it off! The only thing is I had one done when I was really sick and not really eating anything, and mine came back not showing anything!! Doc said it was the lowest one he had seen! He said it was because I hadn't been eating, so we should try again when I return to my normal diet. I guess it can only pick up on things that you have been eating recently to have them in your body to react with.
 
My NPM does a food sensitivity test that doesn't require a blood test. This is the description from her website: Non-invasive sensitivity screening through Biomeridian Stress Analysis.Cookie No scratch testing or injections.Cookie
 
I know it probably sounds kind of weird, but the biomeridian uses electrical currents. She's in brantford...so I'm sure there's someone in London who does it.
 
Want to know a funny... In 2007 I was admitted to ICU with anemia. Long story short, I have been anemic my whole life (the docs said you are okay just borderline) and it finally caught up with me. My docs stood in my room and said "Your diet is doing this to you." My diet was organic, whole foods, with limited starches and grains. They also told me to drink Coke. I supposedly drink too much water. I drink 64 to 72 ozs a day. These 2 guys are wonderful doctors but they just could not stand my healthy diet. My Crohn's was/is non existent just some inflammation. They told me to go and eat hot dogs. They are pro-probiotic and oils. They just don't understand that I am happy with my food and I am healthy with my food. I have trouble with raw veggies so I am jumping on the juicing wagon.

Natural is not a quick fix and it takes tweaking but it so worth it.

Shannon, you are an inspiration and a treasure. Enjoy the journey.

Hugs,
Wendy
 
Wow Wendy, I am dumbfounded.
So there's another testament of how some of our capable and intelligent doctors are often only capable and intelligent concerning drugs, chemicals, invasive procedures...
And that's a shame! My doctor also suggested I drink a lot of soda, especially while on my liquid diet. I was told to have jello, popsicles, jolly ranchers, and soda. (Can you smell the preservatives and coloring?) Well it happens that I got thrush from an overload of sugar, and to the extent that I could barely talk in a whisper. My holistic doctor just laughed at me. She's always cleaning up some medical doctor's mess of a patient when it comes to diet.
Thanks for the kind words, what a journey it has already been!
Good point as well, this is certainly not a quick fix, and to those of you who want to try it - take all of the direction you can but stay patient!
The biggest devastation for me upon diagnosis, was hearing "there is nothing you can do, not even diet" - which took the responsibility out of my hands. In essence I was told, some days you will be sick, others barely, but you have no control. This holistic living has given me back the responsibility to my health. If I screw up and get sick, it's because I brought it on myself. If I feel great, it's because I had self control. It is a great gift to have a say in your health. Especially with a disease that many feel doesn't respond to anything but medicine.

Let's prove them wrong! :)
 
Hi Shannon,
What an inspiring post this. Not only by what you have said, but by others too. :)

Im currently passing blood when I go to the toilet and I think I read in some other post that you had previously passed blood too?

Im just wondering, how did you start the healing process in stopping the blood? What kinds of things did you eat/not eat?

Any kind of advice would be much appreciated.

Thanks
Steve
 
Hi Steve, :)

Yes actually for me the blood was the culminating point of my year long flare, really the worst peak. I didn't experience it for long as an exploratory colonoscopy was immediately scheduled as an emergency, and I was admitted for a few days before my Crohn's diagnosis. I was started on 50mg of Prednisone a day, and 3000mg of Pentasa. I immediately saw improvement from the blood and truly all of my symptoms. That being said, I continued to eat my normal diet, which had consisted of fast food, red meat, dairy - high sugar, bad fats, loads of salt, every acidic food; what I look back on as a nightmare!
Needless to say, even with medicinal treatment, my diet began to further the flare, causing my treatment to progress to the 6mp oral chemotherapy. In December, while I suffered my same symptoms, I began experiencing the fatigue I talked about earlier, which led to depression - and finally sought a holistic route.

Though I cannot speak on how to treat very concerning and serious symptoms holistically, such as blood in stool, I can say that I moved from pain, bloating, diarrhea, constipation, and the Crohn's whathaveyou's - by starting the liquid diet, 6 weeks of Ensure shakes and clear liquids. This allowed me to give my bowels rest and really induced remission because there was no digestion taking place to irritate.

So, having said that, I wouldn't recommend, just out of common sense, that anyone move from severe symptoms (I considered my pain so) straight to a vegan solid diet, or even vegan smoothies. It seems logical to me that an inflamed system must be given rest to naturally heal, and from personal experience, the results were immediate. I feel that perhaps even natural, whole foods would cause irritation in bowels in such a state.

So if you are considering the six week diet, have the greatest faith in it! It is tough but eventually you lose your romance with food. Your tastebuds also adjust to the lack of salt and chemicals that the world pollutes our food with, and when you began a solid diet of organic vegan foods - they taste better than expected because of this adjustment. When can you start eating solids? 6 weeks is recommended but I felt strong and healthy at week 5, and began the smoothie process.

So basically, the liquid diet was the first step to healing for me. I believe it would resolve the issues you're having, perhaps at a slower rate than my issues were resolved, but nonetheless. However, if you are losing a fair amount of blood, you might be anemic. That particular symptom has to be watched carefully, because it can mean all sorts of things in this disease. Perhaps you have an active bleed, say, and in that case medical attention is critical.

I hope this in some way helped - I can only share my healing process, and my very firm belief that, even though the method and timing differs from person to person, healing is absolutely available!

:) Shannon
 
Hi,
Thanks for getting back to me.

You said you spent 6 weeks on the Ensure drinks and clear liquids...Im currently taking something called Elemental 028 (215 calories per carton) which is similar. Ensure is available over here in the UK but is apparently really rather expensive.
Do you think cutting all food out for a while would be a good idea?
I recently bought a juicer too. Do you think I could have juices (veg or fruit) while being on the liquid diet or would my gut still get irritated by these rather than heal from them?

I get my blood taking on a monthly basis just now as Im on Aziathoprine and they are coming back normal so I dont think im anemic.

Thanks again,
Steve.
 
Great! Yes, I've heard of Elemental - Ensure was very expensive but I couldn't stand the taste of some other shakes out there.
Because you are seeing blood, maybe cutting out foods would be a very good idea for now. See how you feel after two, three weeks? Just make sure you are consuming enough calories via Elemental to maintain your weight.
And if you feel a great improvement, move to yummy juices with good fruits and veggies - the enzymes will add on to your healing.
But yes, I would personally try the simplest diet first (liquid), and then gradually, by listening to your body, add on juices, then smoothies, and hopefully solid food!

Wish you success!
Shan :)
 
can you describe your liquid diet?

I'm curious what was your liquid diet regimen? Did you drink Ensure or Ensure plus that is available over the counter in pharmacies or did you get a prescription for a liquid drink? What clear liquids did you consume at the same time? water? tea? broth?


Thank you for sharing your post.
 
Jane,
I had about 5-7 bottles of Ensure Plus per day. I was allowed one can of Gingerale per day, one jello, two jolly ranchers, and a popsicle. This was the standard polymeric diet from my hospital's gastroenterology department.
However, I found that this diet as described is high in sugar, and I soon developed a severe case of thrush. So I would not recommend the added sugars, even though variety helps, all it is is chemicals, coloring, and sugar. If anyone can stick to Ensure (considerable amounts of sugar already) and water, I would urge it. I failed to do so at times because sometimes you just want that carbonated texture, or something to suck on. Ice cubes work, too.
I'm sure there are variants of this diet but this one followed loosely led to my personal remission. :)

Shannon
 
You are SUCH an inspiration. :hug: I have been vegetarian for 5 years now, but when I started, I ate terribly! That definitely didn't help me out at all. I took a nutrition class shortly after I got diagnosed and that gave me the drive I needed to start eating much better, but it's been a slow progression.

Lately I have been moving towards a more vegan, whole foods diet and have been doing smoothies for breakfast. I wake up craving my smoothies now, and it's only been about a week since I started. :) I'd love to start having blended soups for lunch to give my system even more of a break. I want to be med-free and flare-up free more than anything! I found out recently that I have significant narrowing in my Ileum and am dreading the consequences that could come with that... I want to avoid surgery at all costs. Hence why I am eating better!

I've definitely noticed that eliminating most animal products has left me much less bloated and constipated. I'm still in a flare-up though..

The problem I'm having with doing a more liquid diet is my school and work schedules. I go to a commuter college for now and most days have to pack lunch and dinner, and a snack or two. Smoothies are easy to take in the winter, but in the summer I can't keep them in my car. I also don't like the sound of the ingredients in Ensure, which makes this much harder - anyone know of a healthy alternative?

For those with busy schedules trying to eat better/vegan/liquid diets, what do you pack for a day?

Now you said you peel your apples, etc. before you blend them? Does the peel flare you up even when blended thoroughly? I have a VitaMix, so all of my smoothies are basically thick juice. I've been blending spinach, kale, mixed berries, banana, under 1/4 cup oatmeal, and 1/2-1 tablespoon hemp oil - sometimes I mix in other fruits and soy milk. I don't think all the fiber in it has been bad for me but I just started this experiment so it's hard to tell. I don't want to ever stop drinking my smoothies though because of the amazing amount of energy they give me! (And the regularity that comes with it. :p)

Also, any recipes anyone would be willing to share would be AWESOME! :)


:hang: and :getwell: everyone!
 
Well, my family is already vegan, so that part of it won't be hard! What will be so, so hard for me is going gluten-free. I am a huge carb addict. I say my diet is unhealthty because it includes very little fruits and veggies, which my doctor said to stay away from, but honestly I think eating them your way--blended, juiced--should pose little porblem in general. My GI is one of the top Crohn's doctors in the world, but does not seem to have any suggestions about diet except to tell me to eat low-residue. Oh, and to recommend chicken to me every time I see him. Not helpful!

The high-fat in my diet is from nut butters, oils, things like that. I also eat flaxseed oil daily.

Thanks again, I am definitely going to try this and hopefully get off Imuran.
Don't you love doctors? ;) Eat meat and dairy and you'll be fineee. :p Hah! Yeah right.

My sister is doing the 80/10/10 diet - 80% of her diet is carbs, 10% is protein, and 10% is fat. She gets 100% of her carbs from fruit though! So if you're craving a piece of bread, try having a banana! :) It's not the same taste or texture obviously, but at least it's helping out your carb craving.
 
Hello everybody, it has been so long since we've talked! I wanted to give some updates because we had a sort of blog thing going for awhile on this diet route. (I was inspired by Ziggy's stem cell post and thought maybe I should keep up on my experiences in case any one wanted to try that, too).

So I have continued along with my diet. Unfortunately I fell ill with bronchitis and allowed myself to fall under some stressors (and a bit of seasonal blues, too!). This led to a severe flare up that lasted a few weeks. I lost 15lbs and became dehydrated. I went back on the Ensure liquid diet 100% in order to induce remission. However - and I must stress this - I also took Entocort for a time, a topical steroid taken orally with less side effects because it is not systemic. Sometimes when the body is in crisis mode, as I said before, we need our docs for some help! I was in dire need. They however still offered me those biologic meds, like Remicade, but something does not sit right with me. I'm dedicated to this!

I am doing better but still on the uphill climb. I have not introduced smoothies yet.

Something unrelated to diet that some of you may battle as well, like me, is that I seem to be symptomatic (regardless of other factors) a week before menstruation - so hormones play a significant role as we know. I'm currently researching and talking to my nutritionist about some options to get me in balance - I will be happy to share soon! I was offered birth control but we know as Crohn's patients our risk of clotting on those drugs is greater. Plus - if we're going to make these holistic commitments, let's go all the way! :)

I hope ALL of you that have expressed interest or have been veterans of this route are doing well - my greatest advice and lesson learned with this so far is PATIENCE. The body, when given proper resources and nutrition, will stabilize itself. And I continue to believe that our breed, the Crohnies, can achieve quality of life without side effects. It takes time...

And with that I'll say I went through a period of mourning over my past lifestyle - days when health was effortless (days when I sounded less like an 80 year old).

I'll admit with the liquid diet I experienced discipline frustration, and there are definite social side effects. Know that the MIND is strong! You may feel isolated or grow tired of not being accommodated anywhere! We all live in societies that are food-centric, we mourn, we celebrate, we share, we connect - with food!

When you depart from the meds and those awful physical side effects, to commit to this strategy of treatment, or rather, way of living, there are social and mental side effects.

You must be disciplined in order to let your body reach a state of stability and balance. I found that family and prayer are critical during this time for me. I took up painting and I try to get outside more and ride my bicycle. I focus on the picture of health I have in my mind, and I have my pity party when it's time, and I surround myself with people that ground me and show me the reality - which is that I am extremely blessed for many things, one of which is that I have the option to treat my body naturally.

How are all of you! I have loads of more information on the emotional side of this... more to come then? My aim is to show the interested (and yay there have been many who've reached out to me!) that this experience is rich and difficult and 100% worth it. I am and will always be 'in the process' so let's do it together?

As always, it's better than those darn pills in my opinion! ;)

Love Shan
 
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ameslouise

Moderator
Hi Shannon - Nice to hear from you! But sorry to hear of your recent flare. You are smart to keep your docs and the pharmas in your "on deck" circle as you never know when you are going to need them. You are a wise young lady!

Hope things continue to calm down for you and you can progress to smoothies and other soft foods soon. Your patience and determination are an inspiration!

- Amy
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Wow Shannon!! Don't know that I'd be able to match your determination but I must say you have a brilliant way with words:)!! Well said!
 
Thanks Dex! :) It's always nice to hear that I sound determined - sometimes I feel so unmotivated! Part of the journey though...
 

ameslouise

Moderator
Thanks Amy! (PS I'm walking in the Take Steps event too, can't wait! In Pittsburgh it's the 12th of June. :)
My BFF Wendy is a professional photographer and volunteered to take photos at that event! If you see a very tall dark haired woman with a big lense, that's her!

Good luck and have fun!! - Amy
 
Holistic Approach

I sought out a holistic doctor recommended to me here in Pittsburgh. It was a month away and so I talked with my medical doctor about the polymeric diet - 6wks of Ensure shakes to replace all solid food; gives the bowel rest and induces (IMMEDIATE in my case) remission. Then, I met with the holistic doctor who advised a vegan diet, initially just smoothies and juices of wholesome organic fruits and veggies. She was a sufferer of Crohn's at my age and gave up meds to go to school to become certified holistically, treated herself, and is the picture of health. Yes, every case is different, but it was worth a try.

I am done with my liquid diet, I take no medication, just supplements (herbal and iron, calcium). I have no symptoms, no side effects. I eat vegan organic soups, smoothies, juices, and about 1 solid meal per day. It is a LIFE CHANGE, be sure, but for me, necessary. I adore life and I am a writer, I interpret my world - something I found hard to do on medication in the midst of side effects and barely treated symptoms.

Yes, it is true that this is an immune disease. I could flare up at any moment. So what will I do? Back to the liquid diet. Continuing to give my body the nutrients it requires to heal itself. Our bodies were equipped to heal themselves (your blood clots when you get cut, your bones mend when broken). As immune sufferers, we're at a disadvantage. I will therefore work all the more to supply my vehicle with the fuel it needs. No synthetic, no science experiment fast food, none.

If you want to try this route, I would recommend it. I have a severe case of Crohn's, flare ups nearly 2 years long - I know what we are up against. No one assured me if was safe. In fact, many said I could die or make things worse. My labs (as reported by my medical doc) indicate perfect health, so have the exams. Is it just my particular case? Could be. Is it worth a try? It depends on how desparate you are. There is something to be said about all of this.

I keep a good relationship with my medical doc, should I need anything.

I am aware that this is not a route all are supportive of, which I can appreciate - we all go through very different struggles with this disease and the path someone chooses to take should ONLY allow them to live normally and happily - and if you can do that, no matter how, your method is sacred.

I just wanted to share this with those who are unhappy and considering the looming alternative that many scourn, especially the medical field. I mean, my family still calls my holistic doc a 'witch doctor'. But I feel GOOD, for the first time, and I am dedicated to these very drastic lifestyle changes for this reason, none other.
For this reason I also want to try the holistic approach. I have heard others say the same thing. I have also heard that colloidal silver is being used for treatment of autoimmune disorders what is colloidal silver and does anyone know it's effectiveness?
 
Amy, I will look out for her! And Lilly, never heard of the silver... will read! Post on the general forum, maybe someone has heard of it! :) Thanks guys.
 
It's so reassuring to read about vegetarians and vegans who are making the holistic approach work! Thank you for sharing your stories.
 
Good luck to you Noelia, glad to share the experience. This approach is a change of life, quite a commitment, but so rewarding!
 
Alternative Medicine

I just wanted to reply to everyone. I am new to the forum and still learning how things work. I have had Crohn's since age 11 now 29. It has been ups and downs for me, with parents that are doctors as a little girl and teenager I was treated with prednisone and occasional antibiotics. Started to modify my diet when I was 16 but then went to college and led kinda a detrimental life of drinking and at times bad food choices and yes stress. At this time I was on 6mp. During a bad flare when I was 22 I decided to not take prednisone and started to see a naturapathic doctor who also did zero balancing.I also treated my flare with an elemental diet, (absorb plus) shakes created by jini patel thompson author of listen to your gut. This changed my life for the next 4 years. I went on a strict gluten free, dairy free kinda macrobiotic diet. But I still continued with the 6MP, and yes continued to drink alcohol with the occasional bad food and stress. Just two years ago while I was doing acupuncture and seeing an ayurvedic doctor, I decided to go off meds completely. Definetely felt liberated although I was still taking chinese and ayurvedic herbs. During these two years I have been pretty stable with the occasional pain but ok. But yes I never fully stopped drinking alcohol for more than 3 months at a time and tested my limits sometimes eating the forbidden foods.
This January I started to have more severe symptoms, constant pain and diarrhea. But I was stubborn, I didn't want to go back to the western medicine route, I continued with acupuncture, diet, elemental diet. But things would get better and then worse. Finally just 2 weeks I decided to go see a GI. Got a CT Scan and they found fistulas and strictures. Was admitted into the hospital for a week, given antibiotics and intravenous nutrition through the vein. I now do feel so much better, it seems that at this time my body does need more of an invasive approach. The IBD team that got formed says that I need to restore for a month, lower the inflammation and then have a resection surgery to remove the strictures that they say will only get worse. I feel like I have been cornered by their expert advice and have lost touch of what my body is telling me. I really believe in the alternative path, but maybe I do need to take this approach for now so that I can better heal and then integrate the two for a while. I am just afraid of the heavy meds they want to put me on after the surgery.
I would love to hear thoughts from all of you at this time, I really need support and advice from people other than doctors.
Shannon thank you for starting this thread, I think you are amazing to have it so clear on how to heal yourself at such a young age.
 
Meyling - I am so sorry for not responding sooner.
Thanks for sharing your story, I am so sorry to hear your recent struggles - I think that is the nature of the disease. I hope to convey in this thread, with any of my remission success, that even in one year of this 'journey' I have had a lot of issues. Taking this route, the natural approach, ensures that the patient has responsibility and control over health (which is what we weren't offered on those difficult meds). The problem with this is that we are all human, and will fail to meet this very critical responsibility from time to time and for long periods of time at that.

I mentioned before how I continued some unhealthy behavior which landed me in the hospital. While my situation was not nearly as serious as yours (though I'm sure you will come out fine again!), they did tell me I would have to go back on some of the drugs until I was stable again.

I know this is a rough decision for you. My decision at that time was to accept a topical steroid, Entocort, for one month - in order to cool down my insides to the point where I could begin again with my holistic practices. In my opinion, it seemed necessary. Natural therapies are wonderful, but very slow working and not always (as you said) invasive enough to quickly correct the damage we've done. That being said, there are some drugs for Crohn's that don't need to be long term and can return us to some state of 'remission', at least to a point that we feel we can control our symptoms again with our own therapies. These drugs are often steroids...

I will say, on Entocort (which was offered to me because I had only done minimal damage), I suffered a rare side effect - some psychosis! And that is NOT me so I was reminded how much of an effect these drugs have on me as a whole. This encouraged me to once again return to my diet after one month. I am now and have been in remission for a month.

It's been a difficult road since April - because of the damage I'd done with breaking my diet - but that shows you how slow our bodies bounce back. But they DO, if you give them what they particularly need, and nothing counteractive. I would get up day to day and continue my therapies even though I'd see no immediate result for weeks. Once health came though, I was glad I'd stuck with it.

I will keep you in my thoughts, keep the strength you've gained from years of fighting for your health holistically - and whatever you choose to do, know that health is around the corner! There's no harm in cooperating with the docs until you feel a little better. I really believe that the medical field is a great help in physical crisis - but when it comes to a stable point, I think we all should be given a lot more responsibility. And I also believe we're rewarded for it! I know everyday I have without Crohn's symptoms AND without side effects is a good one! ;)

Stay strong,
Shannon
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Sounds like things are still going reasonably well Shannon! I'm glad for you! I guess you expect setbacks along the way but good for you getting back on track. My continued admiration:)
 
im looking into fighting crohn's herbally once im stable on my medication.. i have ordered a book and am so happy you post this.. im looking into what your saying and even asking around for doctors that treat patients this way.. its kinda hard finding that where i am but i have family in new york so hopefully i can find a doctor there
Hello fellow Oklahoman,

Any luck finding a good Dr? ...Just curious if you might have found one in OK?

Shannon, thank you for taking the time to post your experiences. It's encouraging to us all.
People think I'm crazy for wanting to go off meds, but my quality of life just sucks while I'm on them.
I think we can all agree that Crohn's affects everyone differently. Mine is in the ileum and I have horrible vomiting spells when I flare.
I have felt better after cutting sugar completely from my diet, so I'm a little worried about ensure for that reason.
 
David - thank you! :)
Chrony - I understand about the sugar... Ensure is a lot and I often had nausea from so much of it alone. Smoothies really helped me there.

Well, just wanted to put up an update to this thread as it's been a little while. All things are well! In fact, I have been introducing a lot more into my diet with only encouraging results! A few months of cautious healing have paid off and allowed me to return to a baseline.

I have on occasion, even, gotten away with red meat. I eat a fairly normal diet consisting of mostly softly cooked vegetables and if meat - not bigger than my fist. I continue to avoid dairy and processed foods, as well as spicy and acidic choices as well. My diet is much different than what I consider my 'flare' or 'healing from flare' diet, which I hope is mentioned in some of my other posts, but if you have questions let me know!

And here or there as we all have found, there is a food that for some reason or other just disagrees with you. But I have tenfold energy and I exercise a lot - but beware! For me, strenuous exercise causes too much physical stress and can lead to some pain or pressure in the tummy. I love relaxing cardio - a nice walk or cruise on the bike, some water aerobics are great, too. It all plays a role in healing. I'll be doing weekly yoga this fall as I am residing on campus.

A word about physical stress - I previously thought that because I was not thinking or fretting over a life issue in my mind, that I was not doing my disease any harm. Apparently, I interpret stress physically more than anything, (even good stress!), so I've learned to baby myself when things get exciting. More sleep, relaxing things. For me it's hot baths and indulging in my creative outlets: spoken word poetry, blogging, painting, music. I've learned that just because your mind is serene does not mean your body is! And it's important to stay in tune.

But all in all I am excited to share this news with you. In December when I made the difficult decision to step out and off medication, and commit to a diet, and really a lifestyle change that brings about new surprises and findings monthly - I didn't know when or if healing would come. (I've gotten into the habit of taking 'remission' out of my vocabulary. I refuse to be diseased when I feel good, and to walk with a cloud above me even in health! I will always stay responsible to my body's specific needs, but I allow myself celebration! It's healing! And if a flare ever comes along, I will be looking for a way back to it.) :)

My advice to anyone who comes upon this thread or who has followed it since its beginnings - there is a way out from sickness, and from depression, and from side effects. Commit to yourself and to a lifestyle change that will redefine you, but will be worth it. As always, I respect and understand that there are sufferers who do not share the privilege of the ability to get off meds. There are sufferers who require certain therapies to maintain quality of life.

I am blessed to find I was not. But I handled it as though I could have been - before I made any decisions I had talks with several doctors, and we scheduled scopes before and after a certain amount of time on my diets to judge improvement. I can tell you the scopes revealed progressive healing. I stayed in contact with my docs and kept close a nutritionist to make sure I was covering the bases. This route requires a lot of individual responsibility, much different from picking up a prescription.

You get to know your body and yourself better. And you get to experience health without side effects.

I encourage anyone willing and anyone with questions! My prayers are always with those on this forum.

Shannon
 
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Haha this 'thankful' option is adorable! Last time I was around here must have been awhile ago, much has changed. :) Thanks Dexky! Hope you are well.
 

David

Co-Founder
Location
Naples, Florida
Shannon,

How would you feel about me moving this thread to the "Success Stories" forum? I think it will get more very deserved attention there and inspire a lot of people.
 

David

Co-Founder
Location
Naples, Florida
Hahah, I just saw that you created a thread there. Great minds think alike. ;) I think moving this entire thread there so people can see the process would be amazing. I'm going to move your other thread out of there, if you object to that, let me know.

Thanks again!
 

Entchen

Chief Dandelion Picker
Delighted to read your update, Shannon. It looks like you have truly found a way to be live WELL with Crohn's.

-Kelly
 
OK. Gross question. When flaring approx how many BM's per day compared to after your diet?

I've tried similar diets... but failed to commit.
 

xJillx

Your Story Forum Monitor
I am so happy to hear you are doing well, Shannon!

I hope the good times keep on rolling!
 
6 days on liquid now

Shannon, thank you for posting about your journey. I just shared many of your inspirational post with my 11 yr old son, who just started his 6-8 week liquid diet Monday. I heard about this over a year ago, and researched it but kept it in back back pocket while continuing to pray for wisdom on how to BEST managed this disease. I went with meds ...And did what doctors suggested. Until we got to Remicad. So far Meds have not worked... And Remicade is not an option in my mind. And to make this decision, against doctors, as a parent is difficult.... But After talking to my son about this liquid diet option.. And everything it involves... He was very willing and interested in trying it. "Whatever works. And if I feel better.... It is all worth it." (this is where Momma gets to brag and let you know how awesome this kid is..) even when we talked about if a NG tube is needed... As he prepares for his first year in middle school in two weeks.. "I will just tell the kids, I just have to do this so I can get better... it's still the same me, it's just a tube sticking out my nose, not a booger!" :) luckily he is drinking his shakes... 7-8 a day no problem. Now if we can just find a better way to pay for them. His doctor is supportive although not fully confident this will work, she helping us to get insurance to cover or to help with cost of the drinks. Optimental is what she wants us to use.... And what we are trying to get covered.

But it is very helpful to hear someone, especially someone young, who can share that it CAN be done and it IS worth it. So thank you, thank you. I just joined here... And I look forward to learning more.... Especially sharing recipes and ideas for food after the shakes... My son actually loves to cook, and watches food network... When not reading or video gaming.... So the soups you mentioned he wants to know about. :)
 
Thanks Kelly!

And Ekaj, I understand about the commitment!
An answer to your question:

Before the diet, and while flaring: 6 Irregular BMs daily appx
Remission on diet: 1-2 Regular BMs daily appx

NOTE: If I happened to be stressed, now that I am on the diet, I have noticed even my little flare days only get up to 3 BM's daily. These are few and far between due to a new food disagreeing with me or a stressful schedule.

Hope that helps!
 
Kraftymama,

What a strong kid you have! So blessed to hear your story as it reminds me much of my own and my mother's. I went on all the recommended medications too until Remicade, feeling that it was not an option. When my mother and I asked the doctor about the liquid diet (which I had researched on this forum at the time), my doctor was very hesitant as well, noting that none of her patients could ever commit. We set out to prove her wrong with diligence and prayer. She had me do a scope before the diet, and two months later took another scope. She admitted to us that she stood corrected, and that my efforts were rewarded with what she called "progressive healing starting from the top of your system to the bottom".

The liquid diet can be expensive, I hope you get insurance! My mother went on the liquid diet with me for support (and to lose a few pounds!) - we used to play a game and name all the foods we wished we could eat. It worked for us! The entire ordeal was very difficult, and I went through a lot of emotions - but it brought me so much closer to my mother. I hope the same for you and your son! He sounds like a trooper and I hope he takes my story as comfort. When I refused Remicade, I knew the liquid diet was my only option, and that it could succeed or fail miserably and set me back further. Honestly if it weren't for the support at home and my faith, I could not have done it.

I will give you some good recipes I got from a wonderful nutritionist who treats Crohn's and UC. I'll message you them sometime next week as this coming week I will be on vacation. (A much needed one after this year! :p)

I truly wish you both all the best, and celebrate your decision to try everything before harmful meds, and especially commend your little boy for strength and poise that can only bring him a life full of health and hope. :)

Shannon
 
Update from University!

Happy to report that (aside from an early autumn stomach bug), I have been healthy and continuing to follow the diet on campus, as I live in an apartment with full kitchen.

ALOE solution, the pure watery form, has been a great help to me! I highly recommend it, I put it in water and smoothies and it is very soothing to the bowels. There is more information on this online, if you're interested.

For those of you in Pittsburgh or surrounding areas, the helpful holistic therapist mentioned in these posts is Janet McKee (JanetMcKee.com). If you're interested in receiving Facebook updates including interesting general health information from her, like her page: http://www.facebook.com/JMHolisticHealthCoach

She was diagnosed with Ulcerative Colitis as a teen and dedicated her career to alternative therapy, and now enjoys a healthy life and lifestyle! A continued inspiration to me.

As always, this journey is hard and I continue to stumble - there are weak days and I am learning self-control the hard way - but this is a path I have found to be so rewarding.

I want to thank the dozens of people who have both replied here and messaged me privately for more info or just to encourage me. Healing is only as rich as you share it! You all are a great motivation, and my main message is that my story can be yours.

Have hope in healing and invest in faith and healthy decisions in all areas of your life. :)

Love Shannon
 
This is so great! This is my first night on this forum and I was swimming in all these sad stories...and here I am, the vegetarian girl who's been seeing an acupuncturist, a homeopathic practitioner, meditation teachers, dahtadahtadah..... and my GI ALSO told me that diet has nothing to do with Crohns. I am trying to heal an internally-linked fistula on my own and with the help of sulfasalazine, my maintenance drug which I never used to take regularly until now. I will def try the Ensure diet. It makes sense that my bowls need a break. I'm so used to all my fiber and whatnot. Strict veganism will be easy and I'll check out the gluten-free stuff as well. Gosh, I wonder what my husband is going to think after I reveal to him yet another new diet overhaul that I'll be making. Thank goodness he's patient. Plus, I think he knows that healthier = happier. Thank you so much to everyone for these positive, progressive approaches to healing!!
 

David

Co-Founder
Location
Naples, Florida
Hi SMFonda,

If you're going to look into the Ensure diet, I suggest taking a look at our elemental nutrition forum. Considering it has been shown to have about the same remission rates as prednisone, I don't see how anyone can say diet doesn't play a role in Crohn's. And taking it one step further, considering so many with Crohn's suffer from vitamin and mineral deficiencies, I would say that a proper diet and supplementation regimen is absolutely critical.
 
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