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02-28-2011, 06:30 PM   #61
Shannon
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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
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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
04-10-2011, 01:07 PM   #62
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You are SUCH an inspiration. 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!


and everyone!
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Crohn's Disease - Significant Narrowing in Ileum - 25 years old - Diagnosed '07
Lactose/Gluten Intolerance
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04-10-2011, 01:14 PM   #63
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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.
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.
04-19-2011, 01:08 PM   #64
Shannon
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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

Last edited by Shannon; 04-19-2011 at 01:12 PM.
04-20-2011, 12:21 PM   #65
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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
04-20-2011, 12:37 PM   #66
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Thanks Amy! (PS I'm walking in the Take Steps event too, can't wait! In Pittsburgh it's the 12th of June.
04-23-2011, 11:50 AM   #67
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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!
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04-24-2011, 10:23 PM   #68
Shannon
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Thanks Dex! It's always nice to hear that I sound determined - sometimes I feel so unmotivated! Part of the journey though...
04-25-2011, 05:22 PM   #69
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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
04-26-2011, 03:04 PM   #70
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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?
04-26-2011, 05:28 PM   #71
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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.
04-27-2011, 02:40 PM   #72
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Colloidal silver has some antimicrobial properties, but watch out, it can turn you irreversibly blue.
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05-03-2011, 11:12 AM   #73
Shannon
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My point exactly marrie!
05-03-2011, 11:37 AM   #74
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It's so reassuring to read about vegetarians and vegans who are making the holistic approach work! Thank you for sharing your stories.
05-03-2011, 11:38 AM   #75
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Good luck to you Noelia, glad to share the experience. This approach is a change of life, quite a commitment, but so rewarding!
06-24-2011, 01:49 PM   #76
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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.
06-30-2011, 06:57 PM   #77
Shannon
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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
07-02-2011, 09:15 PM   #78
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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
07-06-2011, 05:28 PM   #79
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Thanks Dexky! well wishes your way
07-07-2011, 10:25 AM   #80
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Shannon, I only just read this thread. Thank you so much for sharing your amazing journey. It's very inspiring.

*hugs*
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07-07-2011, 02:22 PM   #81
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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
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.
08-11-2011, 07:57 PM   #82
Shannon
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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

Last edited by Shannon; 08-11-2011 at 09:10 PM.
08-11-2011, 08:42 PM   #83
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Glad to hear it's still going good Shannon! Thanks for the update
08-11-2011, 09:09 PM   #84
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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.
08-11-2011, 10:04 PM   #85
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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.
08-11-2011, 10:06 PM   #86
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Definitely cool with that!
08-11-2011, 10:08 PM   #87
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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!
08-11-2011, 11:04 PM   #88
Shannon
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Everything sounds good!
08-11-2011, 11:37 PM   #89
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Delighted to read your update, Shannon. It looks like you have truly found a way to be live WELL with Crohn's.

-Kelly
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08-13-2011, 01:32 AM   #90
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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.
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