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Date Joined Jan 2009
Total Posts : 15
Posted 1/11/2009 12:04 PM (GMT -7)
I have been reading tons of posts on this site and I see a lot of people who seem to be taking a very proactive approach to the disease. By this I mean researching and implementing special diets, experimenting personally with what does and does not work, etc. I have never taken this approach to my Crohn's and I finally feel like enough is enough and it is time I try to take some of this into my own hands. I would like to figure out things to eliminate from or add to my diet, vitamin supplements, or even alternative therapies that will work for me, I need to to something because I'm tired of just taking whatever medication my GI throws at me and waiting to see/deal with what happens. How did any of you begin your process of being proactive and taking things a bit more into your own hands? I feel very overwhelmed and don't even know where to start.
20 years old.
Dx'd with Crohn's at the age of 13.
Dx'd with Fibromyalgia at 15.
Currently taking 6mp and Flagyl.
10 inches of my small intestine removed October 2008.
When will remission come?!?!
Best regards to everyone here, bless you all.
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Date Joined Apr 2008
Total Posts : 1753
Posted 1/11/2009 2:05 PM (GMT -7)
I felt the same way when I was first diagnosed. My doctor sent me home with asacol and prednisone and I, not knowing anything about
anything, mistook the instant results of the prednisone to mean that I was better and able to eat most anything I wanted!
The main thing is either keeping a food diary of what you have eaten and how you feel that day OR just taking care to remember.
Try staying on a diet of gentle foods that you know won't hurt you and then gradually add new things to see how they affect you. Many members stay on a low-residue diet(you can search it in google and get the basic outline), and a lot of us are trying the SCD i.e. Specific Carbohydrate Diet developed by a biochemist named Elaine Gotschall along with other doctors. You can visit her website at http://www.breakingtheviciouscycle.info/ if you can't afford the book which, by the way, is called "Breaking the Vicious Cycle."
It has helped me tremendously! Though I make a few variations of my own here and there with foods I know will not bother me.
Also, try finding some good probiotics. I take solgar's advanced acidophilus and then an another tablet containing lactobacillus reuteri. You may experience some gas and bloating initially when taking probiotics, but this is normal and should disappear pretty soon as your body adjusts to having new, beneficial intestinal flora.
As for multivitamins, try to find some with calcium, folic acid, vitamin b, and so forth. Many of us try and find vegetarian capsules that are sugar, dairy, and/or gluten free.
You might try eliminating gluten from your diet as well. Many of us have seen good results from it! I make sure to keep away from that as well as refined sugars, caffeine, chocolate, wheat, high lactose dairy(yogurt should be fine depending on the person however and is VERY GOOD for your gut), and junk food in general. Also, drinks with high fructose corn syrup or carbonation, food additives, preservatives, and so forth are good to avoid. There are a lot of good organic juices out there that taste wonderful and are much better for you! And tea without caffeine, peppermint and chamomile teas specifically, are soothing mentally and for your gut.
Unfortunately, eating well and putting the things in your body that you need is slightly more expensive than going for the cheap, immediate gratification foods. But, taking into consideration the benefits of eating well, it should save you much more money and unnecessary grief in the long run. I know it's a lot, but I think the main thing to come to terms with after dealing with a disease of this nature is that big changes MUST be made. I know someone else who disregarded most of this and ended up having to get a colostomy bag due to the damage caused by ignoring his body.
In the end, you just have to try different foods, slowly, and see what affects you negatively and what affects you positively. Finding good probiotics and multivitamins is another good step. Also, finding a good source of exercise helps! Maybe a little bit of walking every day or some yoga.
And last but not least, keeping a positive attitude. It's not always possible, but something like this definitely takes a lot of practice. And even then it's not as if we can keep it all the time. You just have to try and find the silver lining in things and concentrate on that. It's really difficult not to think about
all of the negative aspects that come along with this disease, but, as I said, it takes practice...and if you do then you'll notice a difference soon :)
I'm sorry if I wrote too much, but I strongly believe you can feel better with different changes! I'm not saying it's a cure of any sort, but any change for the better counts right? I hope some of this at least helps...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Prednisone 20 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."
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Date Joined Jul 2005
Total Posts : 733
Posted 1/11/2009 2:08 PM (GMT -7)
Good for you RightOut.... you sound like you're really ready to put in the effort and get to the bottom of things (bad unintended pun, sorry).
My advice would be to ask around for a referral to a Holistic Practioner... they have SOOOO many different titles and I don't know half of them. The one that I went to was an "Applied Kinesiologist". He's the one that alert
ed me to gluten, and he did so my first visit. 5 years and no GI ever even SUGGESTED such a thing. Avoiding gluten is turning out to be the best bit of advice I've gotten since being diagnosed with this stupid disease.
Anyway, find an alternative doctor who is more of a "whole body" doctor.
An alternative doctor isn't necessarily a "hoaky" one... my Applied Kinesiologist orders blood tests and monitors my well-being. That being said, he does not "replace" my regular docs. I just trust him more because he's helped me more. After the first round of blood tests, he sat down with me, yes SAT, and we spent an HOUR going over my bloodwork. I usually have to pry my lab results from doc's clutches, but the kinesiologist just jumped right in and started connecting the dots. After that, he sort of held my hand and explained all the supplements and vitamins and diets that I didn't understand. Be wary of anyone who tries to sell you a bunch of stuff, though... a good doc will just tell you what you need, maybe offer an example, but NEVER pressure you into anything.
That's where I would start. Best of luck to you!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.
"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."
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Date Joined Aug 2007
Total Posts : 990
Posted 1/11/2009 2:41 PM (GMT -7)
Welcome RightOut! You just got some great advice. I'll ditto pretty much everything LMills and patientspiders said!
I'll just add for clarification purposes that the Specific Carbohydrate Diet (SCD) is a gluten-free diet, but it goes one step further and excludes all grains, not just those with gluten. There is science behind the need to do this. That said, many people simply go gluten-free and experience great results, too! Going gluten-free is not as strict as the SCD, and it seems like a great place to start. Gluten-free returned one of our members, "yogaprof", back to health. Others experience good results going gluten-free but realize they are not as "healed" as they could be, try the SCD from there and experience even greater positive results.
Good luck to you!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.
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Date Joined Feb 2004
Total Posts : 20577
Posted 1/11/2009 3:27 PM (GMT -7)
I'm either allergic or non-responsive to traditional oral RX but have found some relief from the following...
fibre supplements (my GI told me to take daily and indefinitely)
probiotics (primadophilus reuteri made by natures way)
vitamins B12 (because I was lacking it/unable to absorb via food alone), C-Calcium Ascorbate and vitamin A
I altered my diet, no more junky or processed foods/beverages, I only eat healthy fresh foods, drink water and chamomile tea only and I exercise regularly...
I went from having 30+ bowel movements a day including blood and mucus with a consistancy of mostly mush or playdoh textured to now having about
6 or less on average/day, fully formed, no blood, no mucus, no D.
My bum is broken....there's a big crack down the middle of it! LOL :)
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Date Joined Mar 2007
Total Posts : 4527
Posted 1/11/2009 6:32 PM (GMT -7)
Hi I have taken a approach of easy to chew easy to digest that I was on when in the hospital .It has made a good difference in me as well as B-12 shots once a month ,Multily viatamin with K in it since I have had a resection and D and need to get some calcium pills as I am out of them. At least here you will be able to chose what kind of approach with diet you want to follow. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
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