Anyone with Interstitial Cystitis?

[disneybound2010]

The past 6 months have been one roller coaster after another with illnesses and injuries for our family. I swear we can't go 2 weeks without major health problems...looks like it has cycled back to me.

Last week I woke up with what I thought was a UTI, went to urgent care and was prescribed some meds. A day later I was in awful pain, ended up in the ER and admitted for an allergic reaction to the medication. They gave me more antibiotics there and after two days sent me home, regardless of the bladder pain and severe urgency and frequency I was having. Thursday, I ended up back at the dr. for constant urgency and pain. SHe keeps telling me all tests are coming back normal and it's not her area of treatment and sent me to my other Dr. who is now concerned I have Interstitial Cystitis and wants me to see yet another specialist.

Between the pain, exhaustion from no sleep and reading up on this possible RX, I am a nervous wreck. I am scared to eat or drink. I am frightened any time I feel like I might need to use the bathroom and I am scared that should I have this my quality of life is going to be nonexistent. I found a support group online with diet tips and therapies strategies, but reading their messageboard, there are so many with this that are and have been in misery for years with no relief. I'm only 31. I can't picture a lifetime of this

 

[MerMom60_94]

I think this is what my mother said she has. I know she has cysts in her bladder, I'm just not sure of the formal name but I looked up the symptoms and it sounds like the same thing. She happens to be having a bout with this this week so we were just talking about it the other night. She said acidy foods and beverages aggrevate it. This includes coffee and juices, so if you are a coffee drinker you may want to stop. I also recall she told me a couple of years back she noticed if she uses Splenda it seems to flair up. to you. I hope this clears up for you soon.

 

[JenLanDisney]

I was diagnosed with IC in my 20's. I'm 38 now and have been mostly symptom free for 9 or so years.

If you have IC, you are very lucky to have found a doctor who suspects it so soon in your symptoms. I was undiagnosed for nearly a year.

Try these sources for more info:
www.ichelp.org

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001508/

Try to limit oxalate in your diet and see if that reduces your symptoms. For me, caffeine was a big offender, too.
http://www.upmc.com/healthatoz/patienteducation/documents/lowoxalatediet.pdf

For temp pain relief, try a warm shallow bath with baking soda in the water.

Best of luck to you

 

[disneybound2010]

Thank you both for the replies. It seems like in the last week, my life has been turned upside down. I went to sleep feeling great and woke up in agony. I've been trying for the last two days to follow the IC diet that I found, but I am literally scared to eat or drink anything....this could be a plus,tho, as I have managed to lose 5lbs in 3 days I'm hardly drinking anything because I know what goes in is going to come out(and then some)

The day I woke up sick, I had no desire for any caffeinated beverages and I haven't touched any since. I don't even miss my morning coffee.DH keeps joking that THAT is how he knows I truly am in bad shape!

 

[JenLanDisney]

I'm hardly drinking anything because I know what goes in is going to come out(and then some)

I understand this fear, but ironically you should be drinking more water not less.

More water will dilute the effect of the oxalate and it will burn less. Also, it's healthier for your kidneys.

 

[4forMe]

I understand this fear, but ironically you should be drinking more water not less.

More water will dilute the effect of the oxalate and it will burn less. Also, it's healthier for your kidneys.

Please follow this advice and drink more water. This is the best thing you can do for your bladder and kidneys.

I was diagnosed five years ago. After changing my diet and being on my set medications, my symptoms have improved dramatically! There is hope for you. You are lucky to be referred to a specialist so quickly.

With appropriate medications and dietary changes, your symptoms will hopefully improve. Feel free to send me a pm if you want.

Here is a link to a thread where I posted a lengthier response:

http://www.disboards.com/showthread.php?t=2680164&highlight=interstitial+cystitis

 

[disneybound2010]

Please follow this advice and drink more water. This is the best thing you can do for your bladder and kidneys.

I was diagnosed five years ago. After changing my diet and being on my set medications, my symptoms have improved dramatically! There is hope for you. You are lucky to be referred to a specialist so quickly.

With appropriate medications and dietary changes, your symptoms will hopefully improve. Feel free to send me a pm if you want.

Here is a link to a thread where I posted a lengthier response:

http://www.disboards.com/showthread.php?t=2680164&highlight=interstitial+cystitis

While I don't wish this on anyone, it's good to know I am not alone. I had never heard of this until now. The one site I found had some unbelievable stories of years of agony and no matter what meds or therapies, there was no relief. That has me terrified. I keep thinking that what if this is the case with me? Listening to all of you, it seems like it really isn't as bad as it sounds and there is hope.

I know I should be drinking more water. I keep telling myself to drink, but after the experience Thursday, I am petrified. I woke up at 2am and literally did not move from the bathroom for 8 straight hours...I peed and peed and peed and it hurt hurt hurt!!!! When I do drink a bottle of water(16.9) it goes right through me within an hour and I am back and forth for the next 6 hours feeling like I have to go...when I am not all cramped up. I think that is the worst part of it. The feeling like I have the worst mentsrual cramps in the world only they are in the wrong place!

 

[TLSnell1981]

I've been trying for the last two days to follow the IC diet that I found, but I am literally scared to eat or drink anything....this could be a plus,tho, as I have managed to lose 5lbs in 3 days I'm hardly drinking anything because I know what goes in is going to come out(and then some)!

You will become dehydrated and worsen your symptoms, if you stop drinking liquids.

Please follow this advice and drink more water. This is the best thing you can do for your bladder and kidneys.

I was diagnosed five years ago. After changing my diet and being on my set medications, my symptoms have improved dramatically! There is hope for you. You are lucky to be referred to a specialist so quickly.

With appropriate medications and dietary changes, your symptoms will hopefully improve.

I was diagnosed with IC years ago. Diet makes a HUGE difference! Acidic foods can aggravate your condition, alkaline foods can alleviate the symptoms. There are several therapies, drugs, etc. to treat IC. It is an inconvenience, but thankfully, treatable.