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Posts: 21
Reply with quote  #1 

Not sure if anyone can help but i am trying an IC exclusion diet and need some guidance.  I am cutting out main offenders like tomatoes, spicy stuff, sweetener etc but am struggling to not have stock cubes and mayo cos everything is so BLAND and DULL without these basic items.  Does anyone find them particularly problematic?  Also I have been having a couple of ready meals like fish pie which i know have preservatives in but i simply haven't got the time or the will to cook everything from scratch.  I also can't believe soy milk has to go cos i hate everything else and only have it in tea but i guess time will tell whether i am doing enough.

Sorry to moan i am in a massive flare and feeling negative and feel like everything i enjoy gets taken away  

I take 3600mg of gabapentin a day for my pain but that only takes the edge off and when its this bad it doesn't really touch the sides.  They have told me this is the only treatment option available but i am awaiting an appointment at the pain clinic to see if there is any more they can do.  


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Posts: 100
Reply with quote  #2 
Hi there Gail,

If I were you I would give Susannah a call at the COB office as we have a brilliant Diet specialist and she can give you her details.  I think she was on maternity leave but may have returned by now (unless I have dreamed it as I have a million things in my mind at the moment).  Take care and keep us posted.

With regard to my personal experiences however, I find that my slowcooker is the best investment I have ever made.  When I have a really bad flare it is brilliant too as I dont have to do any cooking as such.  I make stews etc made from all fresh produce which is good for IC and for my purse as much cheaper than readymeals.


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Posts: 21
Reply with quote  #3 
Thank you Emma, and funnily enough I have one in the cupboard which my mum suggested I give a try.  I have also discovered Waitrose do a pure stock with no preservatives at all.  This is a good start.

I am also confused about my diagnosis as they say it is chronically inflamed but not called it IC.  I will give your office a try tomorrow.

Many thanks

Posts: 428
Reply with quote  #4 
If you bladder is chronically inflamed - its IC ! 

The serious situation in the UK is that urologists are still making the diagnosis of IC from outdated guidelines that were set up years and years ago in the USA from the NIKKD index. This was set up as a research tool in a university and never meant to be used as diagnostic criteria.  The USA realise that it was useless in terms of proper diagnosis and do not use it.... most of the urologists in the UK still use it.

Basically this index said that in order to be IC you have to be under 18 years of age (what a joke - there are dedicated clinics in the USA for children with IC!), that you have to have Hunners Ulcers (joke - why wait to get Hunners Ulcers - you would need the bladder out by then), you have to have glomerulations (sores on the lining of the bladder) and a whole host of other wrong criteria which they know are now no longer appropriate.

IC is inflammation of the interstitial lining of the bladder. Depending on who you see as a urologist even in the UK you will get different opinions.  Any kind of inflammation in a bladder or anywhere else for that matter is not good and if you have all the classic symptoms of IC, then you do not need to be fulfilling all these other criteria.

It is scandalous that so many hospitals here in UK are still using this outdated system.

Posts: 21
Reply with quote  #5 
Thanks Icy.  I am at King's College Hospital - deliberately chose to go there on recommendation of the standard of consultants.  Problem is you never get to see one!  

GP has put me on Cimetidine but I understand this takes a while to work.

Posts: 562
Reply with quote  #6 
Hi Gailywaily,

I notice you had said you have been put on Cimetidine. Although it might work for some people with IC I am afraid for my son it made things far, far worse. At the time he was also under a gastro and the gastro was plain horrified that a urologist could prescribe this in an attempt to suppress acid in the digestive tract in the hope it would suppress acid in the bladder and urine. 

The problem is that cimetidine (being an acid inhibitor) will do just that - inhibit production of acid but itis prohibiting it in the wrong place because you need your acid up in the digestive system to keep down bugs, candida etc. Long -term use of cimetidine is going to encourage bacterial overgrowth up top in the digestive system as they will not have the acid to keep them down.  

I am always amazed at how cimetidine really ever because so widely used with regard to IC - because all the scientific trials of it actually showed that it had little efficacy and that in conclusion the trials had said there was no proof of its usefulness.

It if of course worth a try, but you have to be very mindful of what it is doing to the digestive tract and all I know is that the gastro thought it was a useless exercise. My son had it for a whole month and ended up with even worse problems coupled with diarrhoea and the gastro said that cimetidine is usually only of use in severe ulcers in the digestive tract - to be used until they heal.

It's just worth mentioning this as GPs and consultants are very handy at giving out what is written in their manuals without any regard as to side effects and other dangers.
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