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Update on the Holistic Route
- Thread starter Shannon
- Start date
o...m...g!
Thanks for this thread. I need words of wisdom and hope and encouragement as I took myself off 6mp . The depression and infections got on my nerves. I'm hoping I can stay in remission with diet and holistic methods. I have to check out this Ensure stuff and the elemental forums. Thanks for having the courage and strength to follow your own path amidst a sea of confusion.
P.S. does insurance cover these ensure drinks or any others? I've gone out of pocket enough and finally have good insurance.
P.S. does insurance cover these ensure drinks or any others? I've gone out of pocket enough and finally have good insurance.
JohnnyO,
Yes, Ensure and Carnation Instant Breakfast, and I'm sure some other brands (I believe it depends on your insurance) are covered through a prescription from your doctor. Crates of a month worth were sent to me. It might work differently from coverage to coverage and so this question would be a good one to ask on an Elemental Diet thread. I am sure there are also crafty coupon-ing strategies too!
Thanks for the kind words! I too hope you can achieve remission! It is difficult but because you have had (just like me) poor response to 6MP, you'll be motivated to push ahead. And if you find that may need a maintenance med along with healthy choices, at least you can say that you tried.
I wish you all success with your new decision! Health starts in the mind first!
Best, Shannon
Yes, Ensure and Carnation Instant Breakfast, and I'm sure some other brands (I believe it depends on your insurance) are covered through a prescription from your doctor. Crates of a month worth were sent to me. It might work differently from coverage to coverage and so this question would be a good one to ask on an Elemental Diet thread. I am sure there are also crafty coupon-ing strategies too!
Thanks for the kind words! I too hope you can achieve remission! It is difficult but because you have had (just like me) poor response to 6MP, you'll be motivated to push ahead. And if you find that may need a maintenance med along with healthy choices, at least you can say that you tried.
I wish you all success with your new decision! Health starts in the mind first!
Best, Shannon
Thanks Shannon. Well it put me in remission and still am. Unfortunately it's made me have constant infections and run down. I'll ask my doctor to prescribe me those drinks. I can't wait! I'm going to stockpile them like my other meds even if i don't use them in case i reflare or lose insurance. Lialda is $900 without insurance!!! I don't take it but i'm stock piling it. I should have taken the Humira and sold it on ebay. (just kidding i know that's totally illegal)
Another update from college!
I have been working very hard lately and with that comes stress - even the good type - and stress makes the body work harder to heal. College makes it very hard to avoid unhealthy choices (such as fried foods, insufficient sleep, sugar).
I hope that those of you that have found encouragement in what I've shared have understood from these posts that I have not always been successful. Sometimes I am weak, and this path yields results when followed strictly. Sometimes I have simply done too much in a week and my body feels ragged because I am still dealing with a physical disadvantage. The disease is the disease. My faith and my family fill in these weak spaces and help me to the next level of strength and adherence to this lifestyle. I want to convey this experience honestly, because those of you choosing to do this are making what should be an informed decision and an expectation to work very hard! As always my wish for all of us is that health was not something we have to strive for.
With that being said, the stress of my current lifestyle, as I've mentioned, has taken a little toll on me. My doctor noted some chronic anemia and slight inflammation from blood work. I agreed to take Pentasa, a drug I'd taken a year ago and experienced NO side effects from, IN ADDITION to my holistic choices, which my doctor supports. I will be on the liquid diet for the next month, then blood work will be done. I will report my results! If it has helped, I will go on 80% liquid (that is 1 solid meal a day). We will do a scope in Spring, which I will also report, in order to see if internal remission has been achieved. (A note: Remember that inflammation may be ongoing even without symptoms!)
My goal has shifted with this thread. Originally, I wanted to share my story as it unfolds and my hope was to achieve remission naturally. And while I still intend on these things, I have to adjust my expectations for my body. I may need a maintenance medication in order to maintain *long-term* health, because while I am symptom-free, internal 'smoldering' inflammation can cause damage if left alone for a long time.
I think we can all agree that the goal is and has always been HEALTH! Whatever route you find that will achieve for you a level of peace and a kind of harmony with your body, THAT is what you should do. Tomorrow isn't a promise for anyone, disease or no disease. It is so important to make sure that your today is full. And if you feel medication gives you this, or if you feel natural therapy gives you this, then do your best to adhere to it wholeheartedly, even when it is difficult. (And every path for us Crohnies is difficult! That is why we are such tempered and patient people with such great character!)
I will of course share with you my journey to finding what path brings me a full today in hopes of brightening up our forum a little bit. It is important to celebrate success on a daily basis, even when it is followed by a setback.
I wish you all many daily successes! Remember, healing takes place in the mind first. The body will follow.
Prayers, Shannon
I have been working very hard lately and with that comes stress - even the good type - and stress makes the body work harder to heal. College makes it very hard to avoid unhealthy choices (such as fried foods, insufficient sleep, sugar).
I hope that those of you that have found encouragement in what I've shared have understood from these posts that I have not always been successful. Sometimes I am weak, and this path yields results when followed strictly. Sometimes I have simply done too much in a week and my body feels ragged because I am still dealing with a physical disadvantage. The disease is the disease. My faith and my family fill in these weak spaces and help me to the next level of strength and adherence to this lifestyle. I want to convey this experience honestly, because those of you choosing to do this are making what should be an informed decision and an expectation to work very hard! As always my wish for all of us is that health was not something we have to strive for.
With that being said, the stress of my current lifestyle, as I've mentioned, has taken a little toll on me. My doctor noted some chronic anemia and slight inflammation from blood work. I agreed to take Pentasa, a drug I'd taken a year ago and experienced NO side effects from, IN ADDITION to my holistic choices, which my doctor supports. I will be on the liquid diet for the next month, then blood work will be done. I will report my results! If it has helped, I will go on 80% liquid (that is 1 solid meal a day). We will do a scope in Spring, which I will also report, in order to see if internal remission has been achieved. (A note: Remember that inflammation may be ongoing even without symptoms!)
My goal has shifted with this thread. Originally, I wanted to share my story as it unfolds and my hope was to achieve remission naturally. And while I still intend on these things, I have to adjust my expectations for my body. I may need a maintenance medication in order to maintain *long-term* health, because while I am symptom-free, internal 'smoldering' inflammation can cause damage if left alone for a long time.
I think we can all agree that the goal is and has always been HEALTH! Whatever route you find that will achieve for you a level of peace and a kind of harmony with your body, THAT is what you should do. Tomorrow isn't a promise for anyone, disease or no disease. It is so important to make sure that your today is full. And if you feel medication gives you this, or if you feel natural therapy gives you this, then do your best to adhere to it wholeheartedly, even when it is difficult. (And every path for us Crohnies is difficult! That is why we are such tempered and patient people with such great character!)
I will of course share with you my journey to finding what path brings me a full today in hopes of brightening up our forum a little bit. It is important to celebrate success on a daily basis, even when it is followed by a setback.
I wish you all many daily successes! Remember, healing takes place in the mind first. The body will follow.
Prayers, Shannon
David
Co-Founder
- Location
- Naples, Florida
Thanks for the update Shannon Out of curiosity, are you on any supplements? Vitamin D? B12?
Out of curiosity, are you on any supplements? Vitamin D? B12?
David
Co-Founder
- Location
- Naples, Florida
What was your B12 level if I'm not being too nosey?
David
Co-Founder
- Location
- Naples, Florida
I'm confused why you freaked out about elevated B12? That's a good thing I was just curious because some of us here believe that the "normal" levels are far too low.
I was just curious because some of us here believe that the "normal" levels are far too low.I was on 6MP and experienced what they called "a rare reaction they had never seen". B12 levels that are 'elevated' (the extent I'm unsure of of course) can indicate some types of leukemia that are consistent with 6MP reactions, particularly in those who had trouble metabolizing 6MP (such as myself). So I wanted confirmation that my other levels were not flagging something like that (which they would if anything as serious were present).
David
Co-Founder
- Location
- Naples, Florida
I hadn't heard of any of this before so I went Googling and sure enough, you're correct. Thank you so much, I have lots of new reading to do now
Interestingly, what I've read so far indicates the increase in B12 is due to an increase in haptocorrin which is a glycoprotein released in saliva that binds to dietary B12. The delegate from the Pernicious Anemia Society we have here on the forum says there is a new test that measures Active B12 (which haptocorrin bound B12 is not) so I'm wondering if that could be a bit of a godsend for situations like yours.
*hugs*
you guys should really check out http://gingeristhenewpink.blogspot.com and http://thegreenleanbean.blogspot.com/. They are both amazing and inspiring women who have been incorporating holistic treatments into healing their crohn's. I think a lot of you who are intrigued by this lifestyle would appreciate what they have to say.
xoxo
xoxo
My doc said eating has nothing to do with digestive problems. That's like saying smoking has nothing to do with lung problems. Educated Idiots.
I'm going to see a holistic doctor tomorrow for the first time. Any suggestions of questions to ask?
Thanks for writing this inspiring post!
I have been looking into alternatives for my disease for a long time. I stopped taking my meds about a year ago (against the advice of my doctor who said that even though I was just constipated I should still take the Lialda that gives me horrible nausea and causes great risks to my liver). I was diagnosed 12 years ago when I was 11 and went through a slew of drugs Prednisone, sulfasalazine, honestly I cannot even remember them all, I was on 20pills a day at one time and nothing seemed to work.. and like you I had to be home schooled. I also took Remicade which surprisingly didn't work for me. I hate pills and side effects, I found that changing what I put into my body helps me out a lot.
Unfortunately I have been flaring lately and am worried about my health (still don't want to take the pills), I am a server at a restaurant and go 8 or 9 hours without eating which I think has a major effect along with being on my feet and the stress that goes along with everything. I think making juices to take with me or drinking ensure would help a lot with this. Do you make any of your juices or smoothies ahead of time that can be refrigerated and still remain in tact? I have tried making smoothies and storing them in the fridge but the consitency is always off. I always thought ensure was milk based which is why I have never tried it.
I cannot believe that you were advised to drink SODA! Something that has helped me a lot is drinking mineral water every day. I drink a least one liter of Pelligrino a day (from glass bottle because who knows whats up with plastic) and fish oil and probiotics are also very helpful. I also have dealt with and am still dealing with my family not being supportive of my decision to not take medications so I can relate to you on that note, and as the other Amy stated, I cannot believe you are only 18 years old! Good for you for taking charge of your own health and having the strength to get the proper treatment for yourself!
I have been looking into alternatives for my disease for a long time. I stopped taking my meds about a year ago (against the advice of my doctor who said that even though I was just constipated I should still take the Lialda that gives me horrible nausea and causes great risks to my liver). I was diagnosed 12 years ago when I was 11 and went through a slew of drugs Prednisone, sulfasalazine, honestly I cannot even remember them all, I was on 20pills a day at one time and nothing seemed to work.. and like you I had to be home schooled. I also took Remicade which surprisingly didn't work for me. I hate pills and side effects, I found that changing what I put into my body helps me out a lot.
Unfortunately I have been flaring lately and am worried about my health (still don't want to take the pills), I am a server at a restaurant and go 8 or 9 hours without eating which I think has a major effect along with being on my feet and the stress that goes along with everything. I think making juices to take with me or drinking ensure would help a lot with this. Do you make any of your juices or smoothies ahead of time that can be refrigerated and still remain in tact? I have tried making smoothies and storing them in the fridge but the consitency is always off. I always thought ensure was milk based which is why I have never tried it.
I cannot believe that you were advised to drink SODA! Something that has helped me a lot is drinking mineral water every day. I drink a least one liter of Pelligrino a day (from glass bottle because who knows whats up with plastic) and fish oil and probiotics are also very helpful. I also have dealt with and am still dealing with my family not being supportive of my decision to not take medications so I can relate to you on that note, and as the other Amy stated, I cannot believe you are only 18 years old! Good for you for taking charge of your own health and having the strength to get the proper treatment for yourself!
Hi Shannon,
Great story with the liquid diet, I really enjoyed reading what I did, reminded me of my past experiences and struggles. Personally I would never trust Ensure. This is all government funded stuff and plus, Ensure is DAiRY...which I believe is bad for Crohn's or to be perfectly honest, anyone. You might be able to rig up some fancy dancy alt/homemade non-dairy ensure-like drink with hmmm...almond milk perhaps. Also maybe think about trying heavy metal chelation. Although NEVER chelate without having all your silver fillings removed, this is a common problem for people chelating and then they get more sick because what they are doing is leaching even more mercury into there bodies. That is the real key to getting better in my opinion, and has worked very well for me. Charcoal is also something I wanted to mention, I do take a few charcoal tablets a month to clear out any non-metal [charcoal does not mop up heavy metals only stuff like chlorela/spirulina/fluvic acid does that] ''unwanted toxins/radicals'' I may have picked up from...anywhere lol.
In B.C here I shop at expensive grocery stores which are IGA and Choices Market. For anyone who lives in B.C I recommend those stores. Cheers all, and have a good one. Happy health etc..
Great story with the liquid diet, I really enjoyed reading what I did, reminded me of my past experiences and struggles. Personally I would never trust Ensure. This is all government funded stuff and plus, Ensure is DAiRY...which I believe is bad for Crohn's or to be perfectly honest, anyone. You might be able to rig up some fancy dancy alt/homemade non-dairy ensure-like drink with hmmm...almond milk perhaps. Also maybe think about trying heavy metal chelation. Although NEVER chelate without having all your silver fillings removed, this is a common problem for people chelating and then they get more sick because what they are doing is leaching even more mercury into there bodies. That is the real key to getting better in my opinion, and has worked very well for me. Charcoal is also something I wanted to mention, I do take a few charcoal tablets a month to clear out any non-metal [charcoal does not mop up heavy metals only stuff like chlorela/spirulina/fluvic acid does that] ''unwanted toxins/radicals'' I may have picked up from...anywhere lol.
In B.C here I shop at expensive grocery stores which are IGA and Choices Market. For anyone who lives in B.C I recommend those stores. Cheers all, and have a good one. Happy health etc..
Thank you for your post! My son has been diagnosed within the past year after going thru what must be hell. Even though I heard not to give him veg's/fruits .. I just felt like it would help him. So we bought a juicer, and we ALL juiced and we had breakfast smoothies every morning. There was a complete change. I guess due to getting busy or other things in life happening...losses, etc. We got lazy with the juicing/smoothies and he's started having a tough time, So back to what we were doing. It's just nice to hear someone say that it IS the right thing to do. It can be so overwhelming, there are so many things you hear.. do this.. then as soon as you do.. you turn around and read don't do this. What I am wrestling with now, if anyone can help, is he has been taking a a liquid Multi that has everything in it, enzymes, probiotics, and tons more stuff. He's also taking additional supplements, some of which have the same or very similar stuff.. like additional enzymes, probiotics.. just maybe different strains. I don't know what I need to keep him on from now on. He has supplements for detoxing, extra vit d-3, mucosacomp, etc. I want to be sure he's getting enough and yet not too much. Thanks in advance
hey shannon: just found this on line while searching for help. i live in pittsburgh and would love to know the name of the holistic doctor that helped you. i am 100% holistic and would like that support with my diet. i have adhesions from surgeries that create small bowel obstructions that affect my life in such a bad way. your testimonial was so inspiring to me. i asked to friend you on facebook but wasn't able to explain why. thanks so much for any help you can offer. i hope this finds you still strong and well. jude
my husband has mild/moderate crohns. hes symptom free more than not, unless he eats corn, peanuts, sauerkraut, etc. occasional flare ups from no where or stress. he was fine on remicade for 10 years but the long term effects-not good. i wonder if he should try ensure a while? often times his flare ups are caused from not eating enough and his damaaged bowel "goes to sleep" and gets cramped and obstructed? he's been flaring up for 3 months now. any thoughts?:rosette2:
Hi there! Saw the heading for your holistic post, Shannon, and really appreciate it. I have been on a similar journey for the past 11 years since my resection and have had to tweak it in the past year due to a secondary condition of SIBO (common to Crohnnies, especially those with a resection), in the presence of fructose and FODMAP intolerance. I make green smoothies and SCD homemade broth and yogurt (it's practically zero lactose homemade) all the time, and my protein is mainly from fish and nuts, and occasional eggwhites.
I noticed the posts regarding Whole Foods, which I do use. However, we have a Trader Joe's almost next door to it where I can find MANY organic fruits and veggies (frozen organic ones, too!) as well as much lower priced nut flours and nut butters, almond milk, etc. Perhaps there are some Trader Joe's near you in PA? I hope so
Best wishes and hugs on your holistic journey. I think it's great!! There is nothing like 1) shoring up one's overall immune system with healthy habits vs. taxing it with chemicals from foods (so many of them hidden from labels!) and 2) eating natural, unprocessed, organic food that's loaded with vitamins and minerals by chewing...or pulverizing in a blender! haha Even if one decides to be on meds, I have to imagine that doing this in combo with meds could only help...
I originally decided to go this route due to being allergic to Pentasa (sulfa-drugs). A book that helped me at the time was Prescription for Nutritional Healing, by Balch. It's a book I turn to often for not only IBD, but ancillary auto-immune issues and general health. The authors are married docs: one a medical doctor, the other a nutritionist. Now for a Crohnnie, I'd have to say that's a marriage made in heaven!
I noticed the posts regarding Whole Foods, which I do use. However, we have a Trader Joe's almost next door to it where I can find MANY organic fruits and veggies (frozen organic ones, too!) as well as much lower priced nut flours and nut butters, almond milk, etc. Perhaps there are some Trader Joe's near you in PA? I hope so
Best wishes and hugs on your holistic journey. I think it's great!! There is nothing like 1) shoring up one's overall immune system with healthy habits vs. taxing it with chemicals from foods (so many of them hidden from labels!) and 2) eating natural, unprocessed, organic food that's loaded with vitamins and minerals by chewing...or pulverizing in a blender! haha Even if one decides to be on meds, I have to imagine that doing this in combo with meds could only help...
I originally decided to go this route due to being allergic to Pentasa (sulfa-drugs). A book that helped me at the time was Prescription for Nutritional Healing, by Balch. It's a book I turn to often for not only IBD, but ancillary auto-immune issues and general health. The authors are married docs: one a medical doctor, the other a nutritionist. Now for a Crohnnie, I'd have to say that's a marriage made in heaven!
Well done Shannon and agree with you that the medical field is off the mark and diet has helped me heal and it is different to other people that have healed from diet so everyones diet is different and we are all unique in how we heal
Well it's been awhile everyone! I just wanted to update my "success story" a little. I still struggle with diet and exercise, but I'm navigating it! I have recently started figure skating as a way to reconnect with my body and gain back some control. You can read more about it at my blog Crohnie on Ice: www.crohnieonice.wordpress.com
I hope everyone is trucking along well. xo
I hope everyone is trucking along well. xo
- Location
- Tampa
WOW shannon I am SO jealous!
today is my first day off Prednisone but I am still on Delzicol 800 mg 3x daily...
which Ensure shakes did you drink while on the liquid diet?
I am not sure if i'm in remission or not... i still have cramping before my bowel movements and mucus in my stools.. (but no blood).
today is my first day off Prednisone but I am still on Delzicol 800 mg 3x daily...
which Ensure shakes did you drink while on the liquid diet?
I am not sure if i'm in remission or not... i still have cramping before my bowel movements and mucus in my stools.. (but no blood).
Shannon, read your blog and enjoyed your honesty and truly beautiful writing. I am an Irish Crohnie with a writing degree and career in marketing, so I leaned in and soaked up your story. My career has morphed over time (while raising three children & woof!) into editing from home. You are a bright, shiny penny and I wish you all the best, beautiful girl! You'll go far...
Way to go Shannon! I commend you for taking the holistic route and freeing yourself from medication! I too am taking the holistic route and am currently weaning myself off of Pentasa. The juicing and smoothies help immensely! I understand how hard it can be when others bash your decision to go holistic. It's great you're not taking it personally and sticking to what feels right for you!
Sending much love and support your way.
Sending much love and support your way.
just wanted to say you shouldn't cook with flaxseed oil its highly oxidative and will become rancid when used to cook... use flaxseed in salads or smoothies or over the top of cooked vegies afterwards... never to cook with... use coconut oil or rice bran oil instead..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.
Hi Shannon, I've been a Vegetarian for 8 years and a Vegan for about a year. Six months ago I started going to the washroom 4-6 times a day. My MD sent me for various tests including blodd and stool. Finally, two weeks back I went for colonscopy and the specialist said that they only found a little bit of inflamation and prescribed Pentasa for the next 2 months. I'm more into natural/holistic care/remedy as I know that alopathic medicine targets the symtoms, not the cause. I'm so happy to come across your thread and I'm going to persue by following your's and other's posts on diet/natural supliments to help with this issue. Thank you once again and keep up the good work
Sonit
Sonit
Thanks for sharing! I too have found that natural is the way for me- I drink a liter a day of freshly juiced organic fruits and vegetables and take supplements a holistic doctor put me on. I take LDN with no side effects and do great! Eat basically whatever I want for supper. It's amazing how good you feel when you simply take care of your body!
I'm Curently on entocort 9mg daily I wanna do all I can to stay healthy what do u guys think about going along with the dr'a treatments and also doing a complete life change? In my mind it would be aiding in the meds affectivness to induce and keep remission basically a tag team to whoop up on Crohn's type thing? I've really been considering this
I so badly want to be off Remicade. I 100% believe in this approach. Even did it and was in remission for 5 years and then went thru a horrible divorce and I believe the stress and emotional eating caused the flare. I was hospitalized for 12 days and put on Remicade and been on it for the last year. Yesterday I asked my dr if I cold come off it.
That I was back to my gluten free, juicing, whole food diet. His concern is that if I come off the Remicade that I can't get back on it and if I flare again my only option is getting my colon removed. he also said I have a 20%chance of colon cancer so I need to keep it in remission. ugh. Hate being on this inufusion but scared to stop! I love juicing and eating clean!
That I was back to my gluten free, juicing, whole food diet. His concern is that if I come off the Remicade that I can't get back on it and if I flare again my only option is getting my colon removed. he also said I have a 20%chance of colon cancer so I need to keep it in remission. ugh. Hate being on this inufusion but scared to stop! I love juicing and eating clean!
Did you fail humira?
My kiddo had two allergic reactions to remicade so no choice but to stop .
He then switched to humira
Injections at home every other week.
My kiddo had two allergic reactions to remicade so no choice but to stop .
He then switched to humira
Injections at home every other week.