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maz451

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Now - how about this? I was diagnosed with ic/pbs by an uro who admitted that he did not specialise in this area but referred me a colleague of his who does and I am due to see him in Sept.
In the meanwhile, I am not entirely convinced, but am going along with it! I have not found any particular links with food or drink but have been avoiding the prime suspects for over a year now but do drink de-caff tea.
Yesterday I was at the Eisteddfod in Cardiff, was very hot, my feet were killing me and I had a craving for the old coca cola which I hadn't drunk for a couple of years! So, despite the fact that I had had a couple (or more!) bad days and as yesterday wasn't too bad - I went for it and waited for the worst! Nothing! Bladder fine with it - and I'd drunk a whole bottle (small one!) Now, what am I to make of this? Am I right in supposing that, if you have ic/pbs, you would be rocking and rolling if you'd drunk a cupfull, let alone a bottle full, of coke??? Observations please on a postcard. No, just joking - would be interested to know what you lot out there think though! M.
StephsMum

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Posts: 248
Reply with quote  #2 
Ah ha! In our household, Coke is the work of the devil!!!!!!! Treble whammy: fizzy carbonated, caffiene, plus acid flavours/acid ingredients!
Just so I am not biased against the Coca-Cola company, also goes for Pepsi, Virgin, Tesco, Sainsbury, Aldi ..........!

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Caroline
madeline13

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Reply with quote  #3 

Hi for me it seems that there isn't a true pattern. I have drank lemonade and been in agony and on others occassions have been ok! It seems that when things are fairly calm I can eat/drinks thinks that when in a flare have to stay clear of. I am begining to wonder if eating necterines is not a good idea for me, have been sore even when things are calm. I think it is like when you have a cut and get salt in it, it is agony and if you have no cuts salt doesn't hurt. Hope this makes sense, this is how I try and explain IC to family and friends.


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leny
sueworld2003

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Posts: 1,149
Reply with quote  #4 
There is no hard and fast rules for IC unfortunately. Some folks with this illness don't seem to be affected by diet, some do, myself included. I'd be in agony within seconds If I'd drank that amount. Maybe foods don't effect you so much either but that doesn't mean you don't have the disease.

For those of us who are affected madaline's comment about what effects a open wound rings true. Imagine putting alcohol or lemon juice, or anything acidic into an inflamed cut and you'd be in agony, so basically thats whats happening to our bladders when those substances pass through us sadly.

Sarah

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Posts: 244
Reply with quote  #5 
Maz
 I am not diagnosed but have never felt that food/drink effects me. My recent spat of awful kidney pain/flare cannot be traced to anything I've eaten/drank. In the past- when I have been fine -I've had the odd diet coke or shandy and nothing happened. I think my symptoms seem to be more hormone related ie the bladder some how repsonds to fluctuations in my hormone levels.
Having said that I never touch citrus fruit or juice and wouldn't drink a lot of fixxy drinks etc as I don't want to push my luck!! I do however have to drink about 2 litres of water a day or I can feel the twinging starting so I cannot allow myself to get dehrydated
ange

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Posts: 335
Reply with quote  #6 
I agree with Madeline, in that when my bladder is calm, I can eat/drink 'bad'stuff, whereas when it is already flared up, I can't. 

Angie
sooty

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Posts: 845
Reply with quote  #7 
I change my mind about things all the time.  I havent dared touch coke etc for a long time, but I think its right that when your bladder is calm you can tolerate things you otherwise might not have.  I have been having the odd glass of wine recently and it hasnt caused me any probs. (touch Wood), but 6 months ago I would have been in big trouble.  Some times I think my bladdder just does what it wants and maybe food doesnt cause a problem, it just decides for itself if it wants to mis behave. The Hrt business was bad though.  It caused me the most pain Iv had in a long while.  Have stopped it and seem to have stopped bleeding too.  Last night I used the oestrogen cream and my bladder is alot calmer today.
maz451

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Posts: 696
Reply with quote  #8 

All so very,very odd!! The hormone link is very interesting too - it keeps cropping up all the time in some form or another. I also tend to think that it has nothing to do with what we eat or drink - if our bladders want to mis-behave they would do so anyway! I think that we are all so desperate to find a cause we will blame things that we have eaten or drunk as triggers when they might not be in reality. The million dollar question is - what does trigger the flares? - if that could be found for certainty - then we would be within a whisker of a cure!! Thanks for your replies folks - very interesting - keep them coming! M.

sueworld2003

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Posts: 1,149
Reply with quote  #9 
No, for some of us what we eat plays a very big part I'm afraid.

You may not be food sensitive, but some of us are very much, Some (like myself) are even effected by what I breath and what I touch too, and I'm far from the only one.

IC is the umbrella name for a many versions of this very complicated bladder disease. None of us are the same and thats why this illness is so difficult to treat as you know.
maz451

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Posts: 696
Reply with quote  #10 

I hear what you say Sue, but, you must admit, you are a very exceptional case. Very few people are as sensitive as you - you seem to be sensitive or allergic to almost everything! As for others, fair enough - I am not generalising here and I am very aware how diverse this condition is (incidentally, it is now classed as a syndrome - a mixture - rather than as a disease per se) However, I will repeat the fact that most sufferers will find it difficult to prove that what they eat or drink sets off their symptoms - as they could have occurred anyway. I think sooty may have come round to this way of thinking and she has had the condition for many years.M.

sueworld2003

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Reply with quote  #11 
Quote:
[I hear what you say Sue, but, you must admit, you are a very exceptional case. Very few people are as sensitive as you


Sorry love. I hate to burst your bubble but I'm not.

Others on here have been as allergic to things as myself to varying degrees. Some posters in the past on here (I'll cut you some slack as you probaly weren't around back then) couldn't even wash their knickers using the some detergents or use perfumes around themselves without going into a flare. One women on here used to have to wear a fresh pair of pants very day and then throw them away as she could wash them and then wear them again without causing a painful flare. I'm not as bad as that yet. *crosses fingers*

There were some on here that were affected like me to fresh paint and flare badly when they eat certain 'harmless foods'. There is a section of IC patients who are very much effected by both meds and foods and to proclaim otherwise I'm afraid is just showing how little you understand about this very complected condition.

I can't understand for the life of me how you dismiss the evidence that some (not all) people are affected by foodstuffs. You see evidence of it everyday on here. It's well known to COB as well as any Uro worth their salt. Go on the American IC forum and read up on it If you don't believe me.

You go on the American IC forums or the two IC yahoo groups and and you'll find folks with similar problems as myself myself. Lord even my Urologist knew of such a things going on!

I may be the most extreme version of this type of chemical/food sensitively, but there are many others with variations of it almost as bad as myself. It's not just me I assure you.
maz451

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Posts: 696
Reply with quote  #12 
I did NOT say it was "only you" Sue! If you re-read my post I said that "very few" people were AS sensitive or as prone to allergies as your goodself. I have no bubble to burst. I know an awful lot about this condition believe you me -and please do not patronise me! I do not hold myself out as an expert but I seem to know almost as much (if not more by now!) as my gp who I have been handing reams of information to and for which she has been most grateful and has admitted that she has learnt a lot from my case alone. The uros I have seen have been (with one exception - now, sadly,deceased) less than useless and with very limited knowledge.
I have read the boards widely and need not be cut any slack in this respect. The case you refer to I think is Sonia? Again, she is an exception. Perhaps we all are to some extent as we represent only a small proportion of those that have this condition. I am entitled to an opinion am I not? It is not based entirely on fiction either.
I suggest we leave it at that Sue and beg to differ - yet again!!
If any others have any opinions or obsevations to make then I look forward to hearing from you. M.
sueworld2003

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Posts: 1,149
Reply with quote  #13 
Quote:
I did NOT say it was "only you" Sue! If you re-read my post I said that "very few" people were AS sensitive or as prone to allergies as your goodself.


Sorry love, even If I ignore your allergy comments, you made it very plain in your post that you found it extremely hard to believe that people an be effected by diet. Thats just not right. IE...

Quote:
However, I will repeat the fact that most sufferers will find it difficult to prove that what they eat or drink sets off their symptoms - as they could have occurred anyway.


 Oh really?

May I suggest that your own form of this disease is coloring your view of it when it comes to others problems on here. Also may I be so bold as to say that maybe you should ignore my posts from now on, as you always find fault with whatever I say and so neither of us are finding contact with each other on here that at all productive.  I know my already dangerously high blood pressure isn't.


maz451

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Posts: 696
Reply with quote  #14 
Ding ding - seconds out etc!!!
Read my last post - agree to differ etc.
Now - anyone else with interesting stories/remarks/observations on this one?
P S If merely reading my posts makes your bp rise then I suggest you relax and take a chill pill Sue! M.
sueworld2003

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Posts: 1,149
Reply with quote  #15 
Sorry, but just have to add that It would help your case a great deal if you didn't use !!! at the end of certain sentences. That comes across as being unnecessarily  aggressive I'm afraid.

Quote:
P S If merely reading my posts makes your bp rise then I suggest you relax and take a chill pill Sue! M.


I can't take any meds remember......

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