Wellness

[Suzeecat]

My sister suffers from interstitial cystitis and is on disability from her nursing job because of it.  It got so bad that she was at the point of just wanting her bladder removed, but decided to get a pain pump, which has been working, for the most part.  A while ago she got very ill and thought it was the flu.  After suffering terribly for a week, it was determined that her pain pump had stopped working and she was actually suffering withdrawal symptoms!  Unfortunately, she has been resistant to modifying her diet and I cringe every time she pops open a Diet Coke . . .

I never heard of Botox for it and will ask my sister if she has, although after her pain pump withdrawal episode she might not be interested in trying anything else.

[chrystaltree]

It's not chronic cystitis.  If they do botox to the bladder, it's Interstial Cystitis which a different and more serious condition and NO, there are no food or supplements to cure the problem.  The pain can be unbearable for some and there is no one size fits all treatment for the condition or for the pain. I know two women who have had this for many years.  They have each gone through a vast number of tests, therapies, medications and procedures.  They get some relief but it's temporary.  One gets satisfactory relief pain relief from Botox injections, hypnosis and Claritin, which I think reduces bladder contractions.  Diet soda?  I don't recall my friend ever saying she can't drink soda but she does only drink spring water and green tea.  I don't know the other woman nearly as well but I worked with her for years and I don't believe she restricted her diet in any way.  She had various bladder surgeries over the years and some type of nerve implant.  I don't know how successful that was.    

[Mom2Dogs]

@chrystaltree , yes the actual name was mentioned earlier in this thread....my friend is suffering quite a bit right now, she was diagnosed about 6 months ago.

She has not mentioned any other treatments, but when/if she brings it up I will ask about the nerve implant.  

[grandma r]

IC is a very debilitating disease.  At this point, I have suffered with it for most of my life.  Years ago doctors had no idea;  some even discounted it and came up with other "reasons" for the symptoms.

Yes, it is now classified as an autoimmune disease.  There is no cure!!!  Yes, there are specific dietary constraints for IC.  Anything acidic should be avoided!!!  Tea, coffee, soda/pop, iced tea should all be avoided.  Anything, including chocolate, that has caffeine should be avoided.  That said, it doesn't always help!

There are various bladder instillations that can provide temporary relief.  DMSO has been proven to help if instilled over a period of time. Once weekly for 6 weeks, once every other week for 6 weeks, etc.  However, the side effects are not pleasant.

Some bladder wash instillations can give relief for short periods of time.  Medicare doesn't cover all of them.

To properly diagnosis IC a urologist needs to perform a cystoscopy with hydrodistension of the bladder.  That is done in the OR under anesthesia.  Hunner's Ulcer is often found in conjunction with IC.

I wish the strength and support needed for your friend.  Living with this disease is more than challenging.  Having people around her who support her is important.