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12-23-2014, 10:51 AM   #31
Daisy62
 
Join Date: Dec 2014
Location: Italy
When I'm flaring badly, nothing is digested as it sometimes takes less than 20 minutes to come out the other side..... Rice may be fine but I just wasn't prepared to risk it!
Infact, when my daughter started flaring badly, even the rise water , nor cream of rice even one spoon cannot be kept in even for ten miniutes, all comes out. now she is on a continuous drip for the last two days, while the corteson is on she is ok, the moment it finishes here we go again

I would like to know, if you dont mind, for how long do you have the flareup with bleeding?
12-23-2014, 11:31 AM   #32
Daisy62
 
Join Date: Dec 2014
Location: Italy
Ciao Everybody,
could anyone please tell me , what is the difference between Crohns and ulcerative pan colitis , which my daughter is diagnosed with ???

I was told by the docs that there is a difference ( where it is situated) i would like to know if anyone started with Uc and went to Crohns, after how long??
12-23-2014, 12:14 PM   #33
ncman
 
Join Date: Sep 2014
Location: United Kingdom

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wellen1981, I think its great that you're in a place to try this diet with little to no meds. Did they not work for you?

I'd suggest you look at the LOFFLEX diet, it's what I'm following now. It's basically a similar approach to what you're trying, a new food added once every 4 days, twice a day. This sort of exclusion diet helps you to iron out any intolerances you may have.


If we accept scientific consensus in Western medicine, (that Crohns is bacteria imbalance in the gut) then the reason white rice is on most peoples safe lists is likely due to the way bacteria interacts with rice (eg clinging to the rice) which then passes through us and as harmful bacteria clings to rice it is not too far fetched to believe that some of the bad bacteria in us is removed on consumed rice thus reducing the levels of bad bacteria in us.
I think the idea is more that the bad bacteria feed on the way food is broken down, and as white rice is easily digested with little residue, it generally shouldn't worsen CD.
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
12-23-2014, 04:41 PM   #34
UnXmas
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Yeah, some might be misidentifying which food made them unwell but that is the beauty of the diet of exclusion - as long as you do it properly and make your method as simple as possible (by that i mean sticking to just one food eg white until you level out pain-wise) then once you do introduce the 2nd type again, it is easy to see changes if any and you know the only thing that could have caused a change is the 2nd food.

A good example for me was after those 1st 5 days of just eating white rice i then started to commit to having rice crispies with lacto free milk for about another week - then i started to just put a bit of chicken meat in the bowl of white rice, then after that went ok i tried some beef.

Through this very slow and strict method of testing i was able to see improvement from just white rice, then see maintained positive results when i introduced rice crispies in lactofree milk every morning, then some chicken in the white rice was still ok and then finally some beef in the white rice was still ok.

Its all about getting to the point of zero pain first then literally just introduce one more food at a time until you either get pain, or after 2-3 days you feel ok still.

That's how I approached it anyway - oh and I tried to eat just 1 rasher of bacon after this and got issues within 24hrs after eating it - so I marked that down as on the 'bad idea' list.
I then went back to just my so-far 'good idea' list and then once i was ok again I tried to eat a sausage sandwich which was a bad idea! I should also say that before sausage i had tried white bread toasted with some lacto free butter on and was ok so that is why I tried a sausage sandwich - this showed that the bread was ok and it was the sausage that caused me trouble. You could argue that how do i know the bread was safe but I had tried just white bread with lacto free butter on also and that was ok, so it had to be the sausage causing grief.

Also, the worst thing you can do is use pre-prepped sauces etc eg stuff manufactured with many ingredients in.
This is because if you start feeling worse again you will have no idea which specific ingredient it was in the pre-prepped product that made you bad.
You really do have to keep it simple and basic if you are to understand the results and build up a list of safe-unsafe that is credible and accurate!

I still like food, it just doesn't always like me!

(Probably best not to eat this unless you know its on your safe list!)
I didn't find it that easy doing exclusion diets, because of what I mentioned about internal factors affecting symptoms. Even if I kept my diet very strict (and I did, when I did exclusion/elimination diets, I never "cheated"), my symptoms vary considerably from day to day and month to month, and I'm sure that's true for many others. I'm never symptom free, no matter what I do or don't eat, so the "zero" state you mention doesn't exist for everyone.
12-24-2014, 12:32 AM   #35
RNGirl
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Happy Holidays everyone!

I am newly diagnosed and greatful to be doing well. I Initially stopped consuming gluten then eliminated lactose. I was eating rice bread, boiled rice, rice milk, all things gluten free etc. etc. I really didn't rally and feel better until I started the auto immune version of the Paleo diet. I have been very strict with this diet for 4 months now. No grains, lactose, eggs, night shade vegetables, refined sugars, chemicals etc. also check every lable for "carrageenan". Carrageenan will chew your gut up. Google it---bad stuff. My GI doc was adamant about cutting it out completely. Really feel better than I have in a long time. Realize after eliminating foods and adding back, that beef, corn and soy are triggers also. My symptoms tend to be more systemic with joint pain, sinus pressure, ear pressure and dizzyness and nausea. Eat a food that doesn't agree with me and have symptoms for most of a week. I was able to stop my budesonide and pentasa too. For now this is working and I expect drugs will be in my future, but currently managing with a pure clean diet.
01-25-2015, 12:24 PM   #36
wellen1981
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Just thought I would post again to advise where I'm at...

I have stuck to white rice and have been able to keep the pain down to tolerable levels however less than a dozen times I have specifically tried to have what I can only call 'normal days' whereby I eat normally again.

The results...

Not only do I find myself in quite a bit of pain within 24-48hrs but I also find that trips to the bathroom are worse.

This was done (the 'normal eating days') as an experiment every time as I needed to know if the white rice consumption was making a difference not only to the amount of pain suffered, but I also wanted to see if it was possibly reducing the level of infection in me - and sadly being bad and in pain having eaten normally just showed me that it hadn't managed to reverse the condition to the point of significance.

As I have previously stated I am currently on no meds.
01-26-2015, 06:17 AM   #37
Daisy62
 
Join Date: Dec 2014
Location: Italy
Hi everybody, ( THINKING OF AYUWEDIC THERAPY, HELP FOR INFO!!!)
Hope some of you were lucky enough to pass the holidays without pain, my daughter suffered a lot.

upto now she is on cortisteroids + asacol 4g + mesalazena 1200mgx3+ eutirox

her diet is mostly filtered chicken broth, toasted dry bread . detained tea and herbal drinks. alternative days potatoe, a little chicken breast.

she is being proposed to start immunosupressives !!! said her case is serious, and if not taken this she will have a colectomy in the near future.

WE ARE SERIOUSLY CONSIDERING AYWEDIC THERAPY IN SRI LANKA, IF ANYONE HAS ANY EXPERIENCE EVEN THROUGH FRIENDS, POSITIVE OR NEGATIVE PLEASE DO FORWARD. WE ARE COLLECTING ALL INFORMATION.
02-04-2015, 12:20 AM   #38
Layla
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Ciao Daisy62,

I'm sorry to say I've never heard a positive report of Ayurvedic therapy for IBD. I kind of think that if there were good results with this therapy we'd all be doing it....

Immunosuppressants are not great but really not that scary either, if I were you I'd do a lot more research on these before considering going to Sri Lanka.

As to your other question about having Ulcerative Colitis and then having Crohn's, I was diagnosed with Pan Colitis (Pan means that the whole colon is affected) about 20 years ago and now have Crohn's. They are 2 different diseases, Crohn's can affect any part of the digestive system from your mouth to your anus and UC is only found in the colon.
There is no rule to say that is you start with UC at some point it will change into Crohn's! Most people with UC will continue having that unless they were misdiagnosed in the first place.

In hindsight I probably had Crohn's al along and never had UC which fits with some of the other things I was experiencing at the time.

Medication is very similar for both diseases and I was treated with Prednisone and Azathioprine (an immunosuppressant) which gave me around 10 reasonably good years without any medication.

Good luck with your daughter and keep us informed!

Last edited by Layla; 02-04-2015 at 12:25 AM. Reason: typo's
02-07-2015, 04:55 PM   #39
Marlena
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Just thought I would post again to advise where I'm at...

I have stuck to white rice and have been able to keep the pain down to tolerable levels however less than a dozen times I have specifically tried to have what I can only call 'normal days' whereby I eat normally again.

The results...

Not only do I find myself in quite a bit of pain within 24-48hrs but I also find that trips to the bathroom are worse.

This was done (the 'normal eating days') as an experiment every time as I needed to know if the white rice consumption was making a difference not only to the amount of pain suffered, but I also wanted to see if it was possibly reducing the level of infection in me - and sadly being bad and in pain having eaten normally just showed me that it hadn't managed to reverse the condition to the point of significance.

As I have previously stated I am currently on no meds.
Just a thought, but both my doctor and the nutritionist said to just ad one thing at a time. Excruciatingly slow, I know, but it may help you. Start with really easy stuff like pasta, white bread, applesauce, bananas. Hope this helps.
02-10-2015, 10:55 AM   #40
Suave
 
Join Date: Sep 2014
My son is allergic to apples. He knew this even before testing for it. He is allergic to bananas too. So, yes, each individual needs to find out what affects them. Since he loves rice, we use only Parboiled rice. It is suppopsed to be better than white rice and brown rice.
However, rice is constipating and he can't eat it often but it doesn't irritate his system. If you have not tried it, give parboiled rice a try. Another food that is constipating is Platano (boil with salt), not the small ones (green bananas) and yuca is good too. These are similar to rice in that usually no one is allergic to them. it is important if possible to only eat home made foods because even the things you can eat, can be a problem eaten outside because they add other ingredients that we are not aware of like artificial ingredeints.
02-10-2015, 03:28 PM   #41
Marlena
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I am glad you are finding substitutes. I really like plantains, so I will look into trying them.
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