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Old 04-15-2010, 10:12 AM   #1
daisyHair
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I have Inflammatory bowel disease (IBD)

I've just got home from the Dr. and been Dx with IBD. (MRI and biopsy thru colonoscopy)...

I have had irritable bowel on and off for years.

Of course my Dr. recommended the high carb (lots of fiber) route but in the past I have noticed I have less issues when I am on LC.

I have just found allot of info on line re: LC being good for IBD and other inflammatory diseases and also Crohn's (my sister has a very severe case of Crohn's - two surgeries and is on IV Remicade (sp?) every 6 weeks)...

We actually thought it was Crohn's for a while, (because it can be hereditary) and I had LOTS of tests last year, then they couldn't find anything for sure (I was not in a flare by the time I got all the tests) and they Dx me with irritable bowel and a bacteria and just recently I experienced a severe flare that sent me to the hospital.. and then back to my Gastro and finally I have a true Dx.

What I have been reading is making my head spin. Eat this, don't eat this, take this drug, don't take drugs (I am all for NOT taking drugs if I can).

The pain was the worst in my life. I thought I had food poison or something that was going to make my insides explode (sorry for the graphic description but I am serious).

If you deal with this, I really, REALLY want to talk to you. I am feeling pretty serious despair and actually afraid to eat much of anything.

Fawn, are you around?

Oh I forgot to mention they want to put me on something I think called Enocort? (I didn't get it filled yet). I don't want a steroid!!!
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Old 04-15-2010, 10:14 AM   #2
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Old 04-15-2010, 10:18 AM   #3
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I have Inflammatory bowel disease (IBD)
... sorry.

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Old 04-15-2010, 10:19 AM   #4
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Old 04-15-2010, 10:22 AM   #5
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I'm not really familiar with what you have however, I do suffer with IBS and can definitely tell since cutting carbs (gluten) my IBS is soooo much better. I never took the drugs they pushed on me for the IBS, just an OTC probiotic and switching to LC did the job. I hope there is someone on the board who can give you more info.... don't be afraid to eat, you've been doing pretty good thus far! Keep your chin up and keep the faith
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Old 04-15-2010, 10:32 AM   #6
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Although I haven't had issues nearly as bad as yours, they used to be very unpleasant nonetheless. Frequent stomach cramps, daily diarhea, etc.

Meds work briefly. High fiber irritated it.

Consistent low carb eating has all but cured it; the only flare ups are related to obvious triggers, like eating tomato sauce.
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Old 04-15-2010, 10:34 AM   #7
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I megadosed my omega 3's to help with my inflammation. Did you have a pillcam? My whole digestive tract was inflamed.
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Old 04-15-2010, 10:39 AM   #8
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LC cures my IBS...I sure would think it would help with inflamation.
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Old 04-15-2010, 10:43 AM   #9
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Flax is a great way to get high fiber without adding a lot of carbs.
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Old 04-15-2010, 10:49 AM   #10
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Hi Lisa,

No pilcam. I had a small bowel follow thru and colonoscopy with biopsy.
my small intestine is inflamed and so is my colon. The Bx. was on my colon.

Man this is seriously bad stuff. I swear it is the worst pain I have ever had. I have not given birth but I sure felt like I could have!

Thank you everyone for your posts. I am still a little drugged and just took some pain stuff. Prob. will be going to bed soon.

I do know I will stay with LC. I just wonder about cheese and flax. I am pretty sure flax cereal is what started my flare this time. Before it has usually been related to corn or wheat.
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Old 04-15-2010, 11:09 AM   #11
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If you have polyps the flax could be irritating them. Take care of you.
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Old 04-15-2010, 11:12 AM   #12
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Cary, I don't know anything about it but I wanted to send lots of your way!!!! Thinking of you......
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Old 04-15-2010, 11:15 AM   #13
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From what I've read high fiber is the worst thing you could do for IBS.
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Old 04-15-2010, 11:19 AM   #14
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Wow! Sounds horrible! I hope you find relief soon! *big hugs*
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Old 04-15-2010, 12:03 PM   #15
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Quote:
Originally Posted by goose1 View Post
From what I've read high fiber is the worst thing you could do for IBS.
i agree...an apple can send me in pain for days...cereal OMG! I would eat no grains at all and limit veggies to cooked.
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Old 04-15-2010, 12:09 PM   #16
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My Dh has IBS and the only thing that helped him was Atkins. He no longer suffers as he use to. If he ate lots of veggies he would be sick. So he limits them and has never been better.
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Old 04-15-2010, 12:12 PM   #17
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Yes.. I am pretty sure it was the fiber from the bowl of flax cereal. It's pretty much all I had eaten for several hours when the flare started up.
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Old 04-15-2010, 12:14 PM   #18
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Oh I am so so sorry Daisy. I have a family member with crohns and I know when she thought she could go off her meds, she ended up with a crazy crazy flareup and had to go on very high steroids to quell the situation -- which can be very hard on a person, not to mention the effect it has on appetite -- I really do not know much about IBD, but I would caution you from not following medical advice and hoping to cure things through diet.

Also she was diagnosed and treated for ibs for many years before they finally diagnosed the crohn's - so I think crohn's can be tricky to diagnose too.

big big

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Old 04-15-2010, 12:21 PM   #19
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Quote:
Originally Posted by TaDa! View Post
Oh I am so so sorry Daisy. I have a family member with crohns and I know when she thought she could go off her meds, she ended up with a crazy crazy flareup and had to go on very high steroids to quell the situation -- which can be very hard on a person, not to mention the effect it has on appetite -- I really do not know much about IBD, but I would caution you from not following medical advice and hoping to cure things through diet.



Pauline
I agree, I would take the meds that your Dr has given you. Even if you just take them until thingts are cleared up.
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Old 04-15-2010, 12:41 PM   #20
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Quote:
Originally Posted by lisabinil View Post
I megadosed my omega 3's to help with my inflammation. Did you have a pillcam? My whole digestive tract was inflamed.
Quote:
Originally Posted by aim in Fla*working View Post
i agree...an apple can send me in pain for days...cereal OMG! I would eat no grains at all and limit veggies to cooked.
Quote:
Originally Posted by TaDa! View Post
Oh I am so so sorry Daisy. I have a family member with crohns and I know when she thought she could go off her meds, she ended up with a crazy crazy flareup and had to go on very high steroids to quell the situation -- which can be very hard on a person, not to mention the effect it has on appetite -- I really do not know much about IBD, but I would caution you from not following medical advice and hoping to cure things through diet.

Also she was diagnosed and treated for ibs for many years before they finally diagnosed the crohn's - so I think crohn's can be tricky to diagnose too.

big big

Pauline
Hi dear,
yes I think if I understand correctly "IBD" is totally different from IBS and IBD is sort of an umbrella title. I think Crohn's and other diseases fall under this. I am pretty sure she just is not exactly sure what is going on. I have watched my sister fight it for years. It's a very hard situation.

Thanks for everyone's posts.
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Old 04-15-2010, 01:17 PM   #21
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From what I've read high fiber is the worst thing you could do for IBS.
I totally agree.

I used to battle ridiculous bouts of IBS, to the point I was in BED, sick. Once I got on LC and eliminated ALL GRAINS/FIBER, voila, no more symptoms. I have a new lease on life, to be sure!

My DD suffers with regular flares from ulcerative colitis. I hope and pray that one day she will believe her mother and STOP BEING A CARB QUEEN. Its exasperating when you know what they should do, but they're 25 and do their own thing!!! She is a self-confessed carboholic.

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Old 04-15-2010, 01:17 PM   #22
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All of the below should be quite helpful Cary. I'm so sorry you're suffering.

Beneficial acids and enzymes from kombucha, kimchee
Healing effects of coconut
Foods high in Lecithin like eggs
Bone Broth from NT-add kombu for additional minerals
slippery elm bark to sooth the mucosal membranes
Dr. O'hira's probiotics
Zyflamend from New Chapter the superior anti-inflammatory
Chia for the omega 3's and fiber
Avocado for the fat and fiber
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Old 04-15-2010, 01:20 PM   #23
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Originally Posted by daisyHair View Post
I've just got home from the Dr. and been Dx with IBD. (MRI and biopsy thru colonoscopy)...

I have had irritable bowel on and off for years.

Of course my Dr. recommended the high carb (lots of fiber) route but in the past I have noticed I have less issues when I am on LC.

I have just found allot of info on line re: LC being good for IBD and other inflammatory diseases and also Crohn's (my sister has a very severe case of Crohn's - two surgeries and is on IV Remicade (sp?) every 6 weeks)...

We actually thought it was Crohn's for a while, (because it can be hereditary) and I had LOTS of tests last year, then they couldn't find anything for sure (I was not in a flare by the time I got all the tests) and they Dx me with irritable bowel and a bacteria and just recently I experienced a severe flare that sent me to the hospital.. and then back to my Gastro and finally I have a true Dx.

What I have been reading is making my head spin. Eat this, don't eat this, take this drug, don't take drugs (I am all for NOT taking drugs if I can).

The pain was the worst in my life. I thought I had food poison or something that was going to make my insides explode (sorry for the graphic description but I am serious).

If you deal with this, I really, REALLY want to talk to you. I am feeling pretty serious despair and actually afraid to eat much of anything.

Fawn, are you around?

Oh I forgot to mention they want to put me on something I think called Enocort? (I didn't get it filled yet). I don't want a steroid!!!
I have IBS since mid teens. The best diet I have ever been on it was low carb. It takes the bloat away. I am of the smaller # who are mostly plugged up then loose stools. I have alot pain and crampy in my stomach. I am now on amitiza and its working out well. If I eat too much fiber I get really bad stomach cramps. Just the opposite of what they say.
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Old 04-15-2010, 01:29 PM   #24
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In the most excellent book, Life Without Bread, IBD is discussed in great detail. It is also covered well in Primal Body Primal Mind. Both sources state that fiber is the worst thing to eat for this condition. In fact, both state that eliminating all sources of grains is necessary. My daughter has problems with this as well and her symptoms cleared up completely with low carb. Hope you are feeling better soon!
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Old 04-15-2010, 02:19 PM   #25
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OK, call me dumb but why would a Doctor recommend MORE fiber if that seems to be one of the problems in the first place?

Am I reading this right, or am I missing something here?

Thanks for the clarity on a subject I found very interesting but know nothing about.
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Old 04-15-2010, 02:45 PM   #26
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I don't have any advice, I just wanted to send out a big hug and I hope you are feeling better soon!!
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Old 04-15-2010, 02:50 PM   #27
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Sorry about the diagnosis, but it's better that you know since now you can deal with it.

An amazing probiotic that has been studied for bowel diseases is VSL#3. Cheaper online than in pharmacies.

I know that gluten, grains in general, high fiber, caffeine, carbonated drinks, sweeteners, nuts, dairy are big offenders.

I would eat wild fish (not farmed) and extra virgin olive oil to help with the inflammation.

ETA Also, a quality glutamine powder can help heal the intestines.

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Old 04-15-2010, 05:21 PM   #28
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I'm so sorry you have been suffering so much!

I have IBS which is not nearly as bad as IBD as I understand it and I've had some really bad episodes so i can only imagine what you are going through.

When I was diagnosed I went through the same head-spinning trauma trying to figure out what to eat. It seemed everything I was supposed to eat made me sick and the stuff that was supposed to be bad was good. It was so frustrating! I would just suggest you keep a food and symptom log religiously (don't rely on your mind to remember) and over time you will start to see trends. I really think its just trial and error. Go with what makes the most sense to you as a place to start and then see what happens.

I hope you feel better very soon.
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Old 04-15-2010, 05:26 PM   #29
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My boyfriend had this same issue. His sister is celiac. He allegedly is not. But when he cut out all gluten (note this is in any grain-based product or ingredient and tends to be in everything, even sauces, spice mixes, stuff you can't imagine) he got a helluva lot better.

Once in a great while now he gets a tiny twinge. Sometimes following eating at some food place where far as he knows, there's no gluten, but it repeatedly kicks it off. But generally it is controlled.

IBS is one of those stupid labels they make up that do nothing but describe a symptom -- not the actual problem -- and that are mostly just a replacement for, "We have no freaking idea why this person is in pain / exhausted / whatever, but we have a label!"

Enterolab.com does stool testing on a wide variety of food intolerances and it's not cheap but I can't recommend it enough. If you're to the point of actual medical diagnoses and pain, it would definitely be worthwhile for you to get a spectrum of that. Their testing is do-able from your home and a much more advanced approach (or rather, more 'modern' than doctors stuck in the old world).

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Old 04-15-2010, 07:06 PM   #30
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There's some information out there actually that speaks about the correlation between gut damage and soy protein. Just an FYI for all.

I have 2 clients with IBS right now and it's not as easy for them as just low carb. One was a vegetarian which makes me suspicious.
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