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02-02-2011, 07:55 PM   #1
Shannon
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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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- Diagnosed September 2010 at age 17
- Past treatment with the top drugs, enough of that!
- Achieved remission with 100% liquid diet of Ensure, organic smoothies and specific diet (see link below).
- Read my story on Holistic Treatment here: http://www.crohnsforum.com/showthread.php?t=15655
- Currently training in figure skating to reconnect with my body! Read more at Crohnie On Ice

Last edited by Shannon; 02-02-2011 at 07:58 PM.
02-02-2011, 08:56 PM   #2
Dexky
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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!
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02-02-2011, 09:16 PM   #3
Shannon
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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!
02-02-2011, 10:24 PM   #4
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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.
02-02-2011, 10:30 PM   #5
Shannon
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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!
02-02-2011, 10:40 PM   #6
Shannon
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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.
02-02-2011, 11:04 PM   #7
kildare crohnie
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wat fruits do u use in ur smoothies?
02-02-2011, 11:08 PM   #8
Shannon
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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
02-03-2011, 02:16 AM   #9
troydanielbecker
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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!
02-03-2011, 06:41 AM   #10
kildare crohnie
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thanks shannon ill try it later, do u use frozen yoghurt at all.
02-03-2011, 08:19 AM   #11
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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.
02-03-2011, 12:49 PM   #12
Shannon
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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.
02-03-2011, 12:53 PM   #13
Shannon
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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
02-03-2011, 12:57 PM   #14
AZMOM
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Good for you, Shannon! Glad to hear you are doing well....your story is inspiring. And we could all use a little inspiration!
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02-04-2011, 04:30 AM   #15
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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.
02-04-2011, 04:41 AM   #16
Miss Spencer
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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.
02-04-2011, 04:55 AM   #17
Miss Spencer
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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.
02-04-2011, 01:48 PM   #18
Shannon
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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
02-04-2011, 03:49 PM   #19
partlycloudy
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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.
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02-04-2011, 04:29 PM   #20
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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
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02-04-2011, 09:48 PM   #21
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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 . . .
02-05-2011, 12:36 AM   #22
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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
02-05-2011, 01:50 AM   #23
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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,
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02-05-2011, 12:01 PM   #24
Shannon
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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!
02-05-2011, 01:36 PM   #25
ameslouise
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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
02-05-2011, 01:38 PM   #26
ameslouise
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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.
02-05-2011, 11:53 PM   #27
Shannon
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Thank you!

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
02-06-2011, 02:03 AM   #28
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"So you have Crohns? Lucky for you it doesn't matter what you eat."

I'm callin shenaniganz on this!
02-06-2011, 02:35 AM   #29
troydanielbecker
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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.
02-06-2011, 11:54 AM   #30
Shannon
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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).

!?
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