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TOPIC TITLE: when diet won't work
Created On 1/22/05 11:27 PM
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Beten
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1/22/05 11:27 PM
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I have had Crohns for about 25 years and had two resections when I was a teenager. Because of the resections and the scar tissure that gathered around the places where the surgery was performed I have a very very thin passage in that part of my intestine. This thin passage precludes me from eating any hard raw fruits and vegetables they don't go through and cause an obstruction. This has made it extremely difficult to follow the Gotschall diet or similar ones. Does anyone have any ideas or knowledge of Doctors specializing in Scar tissue issues or any other tips on the matter. My Crohns itself is largely dormant and most of my problems come from side effects from the operations. ie: a shortened small intestine and scar tissue?
 
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Ray
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1/28/05 12:46 PM
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You may want to check out this site
Digestivewellness.com
feel better
 
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BH613
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2/3/05 5:42 PM
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Can you speak more about the diets. My 10 year old has been diagnosed with chron's now for 7 months and is on remicade. He is still flaring up and I was wondering what else I can do to help.
Thank you
 
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Joel
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2/14/05 1:40 AM
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Good advice is to log on to www.digestivewellness.com. It is very helpful. They are also extremely nice over the phone. I called them several times with questions 'cuz I order some stuff from them, like almond flour, jam...(I use it to flavor my homemade yogurt.....)Their phone number is : 1845- 356-3504 .
 
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mom22
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3/29/05 9:54 PM
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you say that you can not eat hard raw fruits and veg, makes it hard to follow Gottschalls diet. You can follow the diet and only eat cooked fruits and veg until the scar tissue has been able to heal yes this may take a year or two. I have been doing this diet very carefully and have seen great results B"H. You have to be very patient.
 
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chronie2
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2/25/06 11:24 PM
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Ask you doc about 6mp but make sure he orders blood tests at least every 3 months.

Also, eliminate sugar, refined grains (white flour etc.) and all processed foods and eat more natural. The long term benefits are obvious.

I also take a product called "Primal Defense". It works very well for me.

Refuah Shelemah!
 
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specialmom
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2/27/06 7:32 AM
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To those asking about diet changes, if nothing else works talk to your doctor about trialling elemental formula. Crohn's has been proven in clinical trials to resolve when the patient is on elemental formula, but it's not commonly used because it's hard to make the patient comply. If you're committed to finding a solution, though, it's a choice you can make in consultation with your doctor. Elemental formulas (EleCare and Neocate/EO28) are expensive and palatability is a big issue. However, they can be literal life-savers. EleCare has just come out with a new vanilla flavored formulation, too.

See http://www.nutramed.com/crohns/crohnsref.htm or do your own google search using words such as "elemental formula crohn's" to find more information. CCFA does have info on elemental diet too.


-------------------------
mom to 5 bli ayin hara, with issues including eos enteropathy, bipolar, ACC/SID, LD, dev delay, gtube, etc
 
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Edith
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6/7/06 3:41 PM
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I have been on the diet (SCD) for over a month and am not really noticing any changes. How much longer should I give it?
 
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working mommy
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8/31/08 1:28 PM
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i'm on the scd diet also for almost a month, and i feel awful.... i'm not ready yet to say goodbuy, because i worked so hard, and i'm still hoping for a change. for now, i'm going to try eating only cooked fruits and veggies, and more fish for my protien. i hope i feel better. i felt so much better when i just first started it, but gradually became worse. the author of the book stated that if you don't see some improvements in a month, the diet probably won't work for you. i just am not ready to believe that yet.
good luck to you
 
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Edith
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9/3/08 3:08 PM
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i tried the diet for about 6 months and did not see improvement. i saw a change for the better when i first started, but then i reached a plateau and no more improvement.

do you have crohn's or colitis? in my research, i have found that the diet really works better for people with Crohn's.

have you tried AloeElite?
 
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scddiet
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9/4/08 1:39 PM
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Edited by Admin.

Advertising is not allowed.


Edited: 9/16/08 at 4:46 PM by FrumSupport Moderator
 
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Edith
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9/15/08 2:11 PM
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diet doesn't always work for everyone. i find it distasteful of you to try and promote your own busness at others' expense.
 
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tomidbsimcha
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9/16/08 4:26 PM
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I spent some time on the scd, It did nothing for me. I know some one who tried every diet outthere with know luck. I know a 3rd guy who tried scd and also no luck. I think that every case of colitis is different in many ways. Its known that everyone reacts diffeenrtly to different meds and diets.
 
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working mommy
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9/19/08 4:07 PM
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what's aloelite?
so i'm still basically on the diet, though once in a blue moon now, i let myself have something made from spelt. i have colitis, and i'm beginign to think that the meds work better for me than the diet, but i'm too afraid to fully go off it for fear of feeling really bad again. what kind of research did you do to find that the diet works better for crohn's? I'm really not happy that the diet's not putting me in remition, because i absolutely refuse to go on steroids. I'll elect surgery first.
wish there was some other proven diet out there....
 
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working mommy
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9/19/08 4:09 PM
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Edith, are you still on the scd diet? if not, did you notice changes when you got off?
 
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tomidbsimcha
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9/21/08 6:52 AM
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Working mom- I understand that steroids sounds scary but surgery is much much worse. If you find a diet that works for you by all means stick to it but if c'v not dont even think about surgery unless its a must.
 
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Edith
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9/22/08 10:29 AM
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working mom:
no, i am not on the diet anymore.
by the time i got off it, i was anyways feeling very bad so i did not notice a difference at all. i was hospitalized shortly afterwards. (by the way, i was also on steroids at the time. the goal of the diet was to help me get off steroids b/c they are so unhealthy, but my condition just kept getting worse)

Aloe Elite is a pill made of Aloe Vera and it is supposed to be healing. you can look it up on the web.
 
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chip
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10/1/08 10:47 PM
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I have tried every diet recommended out there - i had severe UC for 8 yrs.- and no diet ever did anything for me- I got so thin and felt so sick. I am thin on a regular day but the diet made me run to the bathroom a lot more than I ever had and I was so weak from it. I had been dependant on high doses of steroids, and tons of other meds. -lots of bad side effects and every time we'd lower the doses I'd flare up again. So...much against my gastroenterologist wishes, and against a second gastros opinion- I did the surgery. ( on the encouragement of two others with UC who had the surgery and were better.)Two part surgery -total removal of colon. I had a temporary bag for 11 weeks, which was scary, I admit- but, I am B''H in great health now. They formed a pouch inside me at the second surgery. I thank Hashem every day for giving me back my health. The surgery was successful. i take no meds. I had the surgery three years ago . The surgery was laprascopic. I barely have a scar. The ONLY lingering affects that remind me of what i once had is the fact that I go to the bathroom more often than most people. BUT- I have total control, I can always wait until I find a bathroom. No meds, no pain, no cramps, no hospitalizations. I always had a low fever when I was sick. I was always shivering under the blankets and never had strength for my kids (babies back then). Now, I can get out of bed every morning , grateful for the strength that, most people my age- 29- take for granted. I am writing this to others with UC because my only regret is not doing it earlier. Is there a risk to doing surgery? Yes, of course. But when your quality of life is so bad and you are afraid everytime you leave the house that you might not make it in time, or you take so many steroids that at 26 you have osteoporosis- then you really should consider it.
 
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Edith
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10/2/08 3:46 PM
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after trying diets, and tons of different STRONG medications, I also had the surgery to remove my colon. I did not get the 2 stage surgery - i have a bag, and i have gotten used to it. it was a very difficult decision, but looking back, it's been about a year (and not such an easy year), and i have to say - I HAVE MY LIFE BACK! B'H, I feel better than I thought I would ever feel.
 
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rh1211
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10/10/08 5:09 PM
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I must say as well that, while surgery is not for everyone or every situation, I had surgery over a year ago and B"H it has really changed my life. Since surgery I have only taken imuran for maintenance, in addition to multivitamins, and otherwise I eat almost everything and feel great basically all the time. For those suffering from severe Crohn's or UC, surgery should definitely be considered as an option if possible because, while it may seem daunting, it is so much more of a relief than taking multiple medications several times a day and still feeling sick anyway.
 
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working mommy
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6/26/12 4:24 AM
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It's been 4 years since I've written and I tried it all. Surgery is in my immediate future. May have a permanent bag. Am ver scared. How does one get used to a poo bag attached to them for the rest of their lives? After surgery I really hope to get off steroids since have been taking high dose for a year. Any suggestions? Comments? Words of comfort?
 
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chanieF
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7/8/12 4:13 AM
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i do not have personal experience but have heard from ppl who did and did the SCD that you have to perfect with it and it takes i think 2 yrs but then they're able to get off meds. just throwing it out there for fyi purposes..
 
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