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pburke

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Posts: 5
Reply with quote  #1 

Hi there,

I have just joined the COB for my father who has been diagnosed with IC after 6 years of tests. He's in really bad pain and wont leave the house,
he has a good day followed by a really bad day. He has tried loads of different tablets, plus reflexology, Homeopathy etc,
the next step is to have his bladder removed. I'd really like to talk to anyone to has had this done.

I'd like to understand what lifesytle changes this will bring, how successful is can be, what his options are - internal bag, external bag.

I'd like him to try Elmiron first, as the bladder removal seems to be such a big op. Has anyone tried the above tablet yet?

Should dad be taking atrong pain killers for the pains? he taking muscle relaxants now, but they dont seem to do anything.

Some of you have mentioned pyridium tablets, ayurvedic medicines, Amtriptyline tablets, are these things dads urologist can prescribe,
or can they be bought at the chemist - we are getting desparate to help dad - he has flare ups most days and is in agony.

Pls help, we are getting deparate and hate to see him in such pain.

 Thanks, 

Gemma

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Posts: 637
Reply with quote  #2 
Hi,

Has your dad been offered treatments via instillations? I have found cystistat instillations to have improved my quality of life dramatically - and I also know of 2 men at my local hospital who receive the same treatment and say it benefits them.

Gemma
Milena

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Posts: 127
Reply with quote  #3 
Apart from elmiron and instills, amitryptyline, hydroxyzine and doxycyline and standard medications for IC. There are numerous treatments for IC. Unfortunately, few are available over the counter. Your dad should have been offered all these by now, unfortunately many doctors are ignorant about this disease. If he has not tried these considering bladder removal may not be wise. Re over the counter drugs you could try tagamet (this is prescribed as cimetidine, much cheaper on prescription) or just some allergy pills like clarintyn, not that much chance it will do anything but worth a try. There are many people in remission or with significantly reduced symptoms just by taking 20 mgs of ami or hydroxyzine every night. Has he tried the IC diet? This can also help a great deal. Accupuncture, ayurveda, etc can be helpful given the right practitioner. I would do some research, get the information together and push your GP to start treating your dad empirically - see what works and the chances are something will. Bladder removal really is the last resort and few IC sufferers have to have it done. best, milena
brokendoll

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Posts: 1,577
Reply with quote  #4 

Hi there. Has your father considered steroids? I was given it as a last resort by my GP after being diagnosed for 10 years and was getting unbearable and no other meds were helping. I still have my bad days, but they're much lesser and they pass quickly. Yesterday I was in awful discomfort and frequency of about every 5-15 minutes after having a bad nights sleep..today my bladder is fine and I've only had to use the bathroom once today. The steroid I'm on is called Prednisolone and is a very strong anti-inflammatory. Before taking it I had been in a flare for months where my frequency was every 2-10 minutes, all day. I tried chinese therapy 3 times a week during these months but it didn't help. After taking the steroids I picked up within days, and have just gone from strength to strength.

 

I asked my GP about this steroid after reading of the great results Sophia had experienced with it. Maybe it's worth asking about? Feel free to email me with any questions, doll.eyes@gmail.com

pburke

Registered:
Posts: 5
Reply with quote  #5 

Hi all yep dads just finished the instillations, he's had cystocopies, every tablet you can name, looks likely he'll have to have the bladder bag next. so frustrating to see him in such pain and unable to do anything to help, we've tried diet, relfexology and homeopathy - anything else we can try?

 

Thanks for listening

 

Dee x 

brokendoll

Registered:
Posts: 1,577
Reply with quote  #6 
Just sent you an email through COB, hope it gets to you! xxx
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