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Rhi

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Posts: 5
Reply with quote  #1 
Today I have come back from the hospital to finally hear that I have been diagnosed with IC, after 3years of battling with doctors and numerous operations and tests! I am kind of relieved that I have something to go on now rather than going back to the drawing board. I have been given a drug to try out for a month to help rebuild my bladder lining, but in the mean time my urologist has told me to follow a strict IC diet until I next see him.

I really feel very lost on this subject, I could really do with some recomendations of recipes and recipe books that are out there that have been tried and tested. I noticed that there is one on amazon.com for £40, has anyone tried it and is it worth the money??

I have already cut out fizzy drinks, tea/coffee, acidic fruit and tomatoes out of my diet, but have been known to relapse and then pay the price the next day! I've found it quite hard, any tips on how to stick on the straight and narrow?! 

 Also I have seen that chocolate and alcohol are pretty much banned, are there any replacements that people have found are good, my boyfriend and I meet up with our other couplely friends on the weekends, which mostly involved pubs/bars and I always feel so left out


would really appreciate any replys on this

Thanks so much

Rhi
xxx


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RachelAnne

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Posts: 248
Reply with quote  #2 
Hi Rhi

There are lots of different diets that people use for IC, however the people on this forum who are in treatment with alternative practitioners (Dr Brizman in Los Angeles, and Deborah Grant at the Hale Clinic) use a very strict diet.

You can view Dr Brizman's recommended diet on the ICAMA website - google ICAMA and it should come up and have a look at the diet sheets.

Deborah Grant's diet for IC patients is much stricter - protien, green vegetables, oliver oil, eggs and butter and that is it for the first stages of treatment.

Most people on these very strict diets are also taking chinese herbs or western herbs aswell as directed by the practitioner.

There are certainly some no no foods - no sugar, no carbs (as this turns into sugar in the body), so this means you have to be very creative in cooking etc

It all depends on how strict you want to be and how your IC is but I now that for me the stricter the diet the better my bladder is, but I am in treatment with Deborah and haven't ever taken any western medication for my IC.

Hope this helps. There is alot of information on diet on this forum aswell.

Kind regards

Rachel
RachelAnne

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Posts: 248
Reply with quote  #3 
Hi Rhi

There are lots of different diets that people use for IC, however the people on this forum who are in treatment with alternative practitioners (Dr Brizman in Los Angeles, and Deborah Grant at the Hale Clinic) use a very strict diet.

You can view Dr Brizman's recommended diet on the ICAMA website - google ICAMA and it should come up and have a look at the diet sheets.

Deborah Grant's diet for IC patients is much stricter - protien, green vegetables, oliver oil, eggs and butter and that is it for the first stages of treatment.

Most people on these very strict diets are also taking chinese herbs or western herbs aswell as directed by the practitioner.

There are certainly some no no foods - no sugar, no carbs (as this turns into sugar in the body), so this means you have to be very creative in cooking etc

It all depends on how strict you want to be and how your IC is but I now that for me the stricter the diet the better my bladder is, but I am in treatment with Deborah and haven't ever taken any western medication for my IC.

Hope this helps. There is alot of information on diet on this forum aswell.

Kind regards

Rachel
Rhi

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Posts: 5
Reply with quote  #4 
Hi Rachel

Thankyou for reccomending the ICAMA website I found it very useful with all of the information and reciupe ideas. Although I cant find any specific  diet sheets as it were...?

I think I am seriously going to look into treatment from them.



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her

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Posts: 1
Reply with quote  #5 
hi my name is anna i live with  I C  this is slowly taken  me  the pain emotional toll this is taken in my life .i have tried elmeron /bladder meds  nothing has work. i took many meds  percocet/dialuded 8mg    i didnt wanted that kind life any more. i ask my pain mangment to detox me .i wanted my brain back..is their any one that can tell me if their is any natural meds.some one mention dr.deborah grant but she live london .this interstitial cystitis has cause me to become disable im in pain 24/7  i dont enjoy life at all i dont go out any more.the pain is so bad  i make so many trips to the bathroom .some times the pain feels like  scale 2,000   im 46 yrs old i fee 99yrs old .i dont have a relationship w/ a man  for over 10 yrs because the pain gets really bad cant do many thing if you know what i mean i just gave up on most of every thing . can any person recommend any treatment .thnks anna  may 13 /10

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Carole48

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Posts: 118
Reply with quote  #6 
Hi Rhi

If you would like more info on being treated by Dr Brizman at ICAMA just sent me an email and I will fill you in with the details.

It does mean a trip to Los Angeles for the initial apt. only but its not as daunting as it sounds. 

You will find the diet lists here http://www.icama.org/iaic-diet

Carole
RachelAnne

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Posts: 248
Reply with quote  #7 
Hi Anna

I am sorry that you have had such a hard time with your IC for so many years. It is indeed a very difficult condition and you are not alone on this COB forum.

I can only speak from my own experience, I don't use any medication for my IC, except for alternative herbal treatment.

I have been using acupuncture - once/twice a week aswell for 15 years now to help with my pain and my bladder and it helps me alot.

I use Deborah Grant at the Hale Clinin in London or in her clinic in Brighton - she has specialised in IC using herbal medicine. She tries to understand what is going on with the whole body, and doesn't just treat the bladder. She has been successful at helping people  - but everyone is different and everyones IC is different - but you don't know if the alternative route will help you until you have tried it.

I am definitely getting better using the alternative route - and my bladder has become less painful. Recovery is in small steps.

You can google Deborah Grant - and you could email her and tell her of your IC history. She is a very kind person and really wants to do her best for people.

Have you tried a very strict IC diet - Deborah's diet is just protein, green vegs, eggs, oliver oil and butter - also google ICAMA - Dr Matia Brizman she is a chinese doctor in Los Angeles who has also specialised in IC for 15 years, she has many UK patients, she also has really helped people to get better and manage their IC.

Of course these options require investment.

Why don't you email Deborah and also go to your GP to talk through your pain management program in the short term.

Also, have you got any friends or any community workers within your community you could talk to about how you feel or you could ring the COB office to talk to them - they are always very supportive.

I really hope you can find some pain relief.

Kind regards

Rachel Gibson
sanag

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Posts: 66
Reply with quote  #8 
you may find this link helpful; http://www.ic-network.com/diet/2009icdietlist.pdf
however I would like to point out I have shown this to 2 renal doctors and a senior renal dietician and all have said this is far too restrictive and the dietician has said not to follow it long term as it would not be very good for you.

sanag

Registered:
Posts: 66
Reply with quote  #9 
you may find this link helpful; http://www.ic-network.com/diet/2009icdietlist.pdf
however I would like to point out I have shown this to 2 renal doctors and a senior renal dietician and all have said this is far too restrictive and the dietician has said not to follow it long term as it would not be very good for you.

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