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Interstitial Cystitis

• Message 1. 

  Posted by merrylatestarter (U10475559) on Sunday, 22nd April 2012

  I have just been diagnosed with it, and the pain is horrendous. Im wondering if anyone else has this horrible disease. I am finding my diet very hard to follow, lots of things that I like seem to play me up, and there doesnt seem to be anything the doctors can do. I would be interested to hear how other people cope with it.

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• Message 2

  , in reply to message 1.

  Posted by Spartacus (U15209285) on Sunday, 22nd April 2012

  Poor you. There are so many ways our bodies can go wrong aren't there.
  
  Have been prescribed/recommended an Antihistamine?
  
  I've seen positive comments for Benadryl - make sure it's OK to take with any other meds you may be taking - a Pharmacist will be able to tell you.
  If that doesn't help there are others that you could try or that could be prescribed.

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• Message 3

  , in reply to message 1.

  Posted by Lili Bolero and the band played on (U10534540) on Monday, 23rd April 2012

  Hi Merry. I recommend that you google Angela Kilmartin, and get one of her books. She is an expert on the subject.
  

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• Message 4

  , in reply to message 3.

  Posted by CC Growing old disgracefully (U13344869) on Monday, 23rd April 2012

  Hi Merry.
  
  So sorry to hear that you are unwell and in a lot of pain. Sorry but not know a lot about it but looks like you have been given some good advice by others.
  
  Do not usually do hugs, but in your case I will make an exception (hug)
  
  Meant to say that I am surprised that doctor does not know anything about illness
  
  

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• Message 5

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  Posted by Friend of Moose (U14307683) on Monday, 23rd April 2012

  My mother has this.
  
  I think the pain - for her - is when she has infections, which are treated with antibiotics, by her GP.
  
  She seems to have worked out for herself which foods/drinks aggravate the condition. She avoids drinking a lot of tea and coffee, and rarely drinks alcohol. Also acid fruits. (Her diet is rather bland.) I think she has to be quite careful about remembering to drink plenty of water/herb tea. As she needs to go to the loo a lot, which can be inconvenient, there's always the temptation to cut down on fluid intake. But then if you're not giving your kidneys plenty to work on, it's more likely tthat infections will arise.

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• Message 6

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  Posted by merrylatestarter (U10475559) on Monday, 23rd April 2012

  Thanks for all your advice, and for the hugs Mackies Mum. Ive learnt quite a bit by my mistakes. Cant eat tomatoes which I love, also oranges and tea. Its a very bland diet. My doctor doesnt seem to know much about it and keeps giving me antibiotics which dont seem to do me much good. Yes you have to know where every loo is, very awkward if youre taking the dog for a walk, and there are no trees around.!! Never mind theres always someone worse off than you, and its nothing that will kill you. I try to keep that in mind when the pain gets too bad.

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• Message 7

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  Posted by Retired-Rural-Person (U8479978) on Monday, 30th April 2012

  Dear Merry, I was having problems a few years back with having to get there in a hurry, and was referred to a urologist who made a preliminary diagnosis of interstitial cystitis. He arranged a cystoscopy partly to excude other problems and a bladder stretch at the same time, all done with spinal anaesthetic and sedation, no general anaesthetic, no problem at all. Biopsies showed no abnormality.
  At follow up appointment was seen by a registrar who, with some embarrassment, said he didn't believe in interstitial cystitis!
  Have had much less trouble since, so referral to the urolgy clinic could be helpful.

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• Message 8

  , in reply to message 1.

  Posted by Rusters (U11225963) on Monday, 30th April 2012

  This might seem strange, merryls, but cats get interstitial cystitis, too, and some of the investigations and treatments are based on those for humans.
  
  One cat who was eventually diagnosed with ic, was put on a very low dose of the anti-depressant amitriptyline, which worked really well, as long as he stayed on them, so he was on them for life. This drug is often used in humans (at a lower dose than is used for depression) for some kinds of intractable pain or discomfort that doesn't respond to other painkillers: back pain, inflammatory bowel conditions, and ic.
  
  The vet said that antibiotics often do help ic sufferers, even in the absence of infection. He hypothesised that a/bs have active properties that work as analgesics or anti-inflammatories, though apparently that has never been adequately researched.
  
  Anyway, since one doesn't want to be taking antibiotics unless there is a (probably secondary) bacterial infection, it might be worth asking to see a urologist and/or asking about drugs other than antibiotics, unless there is actual infection.
  
  These are a couple of helpful sites on human ic,:
  
  
  
  
  
  Rusty
  
  

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• Message 9

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  Posted by merrylatestarter (U10475559) on Tuesday, 1st May 2012

  Hi Retired-Rural-Person. I have had a cystoscopy and biopsy, and they only found inflammation, that was a year ago. I think the doctor would like me to have another one to keep me checked out, but I had such a horrendous time with the last one, they couldnt stop the haemorraging so im not very keen.
  Rusters, I had no idea that cats could get IC, poor little things. Yes I have read somewhere on line that anti depressants are sometimes given, I will have to mention it to my Dr next time. GPs dont seem to know a lot about it do they. Ive had no end of courses of ABs, sometimes they help a little. Weve had a lot of family problems just recently, and im wondering if the stress factor has anything to do with it.
  Thank you both for your interest.

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• Message 10

  , in reply to message 9.

  Posted by sirblunderdog (U14202514) on Tuesday, 1st May 2012

  Sorry to hear of your discomfort mls. I suffered myself from this problem a few years ago and found that it is helped by drinking lots of water.
  
  Vet reckoned I had prostate problems, but after various checks/pokes/prods at the hospital was given the all clear on the prostate.
  
  I ditched the antibiotics (working on the principle that when I really need them, the ones that I'm given might work) and just drank lots of water. The pain gradually diminished until I'm clear of it. It took a couple of months (and I watered a lot of trees)
  
  Drink as much water as you can, even though you can't water trees like me. It'll go away, being flushed out.
  
  x blunders

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• Message 11

  , in reply to message 10.

  Posted by merrylatestarter (U10475559) on Wednesday, 2nd May 2012

  Hi sirblunderdog. Its a horrible thing isnt it. I do try to drink a lot of water, in fact its nearly the only thing I do drink, as tea and coffee play me up. I thought cranberry was good, but its not for IC. The only trouble with drinking lots of water is that its a vicious circle, the more you drink, the more you want to go. and I think I know where every bush and tree round here are!!! Hope youre keeping well. ((())).

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