Need your help, IC survey! PLEASE

[Romans8:28]

I really need help with this for my doctor. He is wonderful but I’m his worse patient yet know many of you struggle even more than I so, Please help me! I just need to let him know I am not alone! Thanks in advance for your help!

Do you still have pain even after trying many different IC treatments available?

Are you on pain meds?


Have you done home instills weekly for more then a year?

If so how often?


Or have you tried but been unable to tolerate instills?


Is your bladder hypersensitive to many foods, chemicals etc.?

List some of the unusual ones:



Do you have a lot of infections?


Do antibiotics helps your symptoms?

[Katrina]

Do you still have pain even after trying many different IC treatments available? sometimes yes

Are you on pain meds?
yes

Have you done home instills weekly for more then a year?
no I am down to when I flare now
If so how often?


Or have you tried but been unable to tolerate instills?
yes I tried but it was too hard on my urethra to do that often and a lot more of a hastle than my oral meds
Is your bladder hypersensitive to many foods, chemicals etc.?
yes
List some of the unusual ones:
well I can't handle my bath water...that is the one that bothers me the most I mostly fit the norm on what bothers me other than how my other illnesses effect my IC like my IBS flares and yeast infections will bother my bladder before I no what is going on. Aspiren, decongestants, Ibiphrofen, acidic food and esp acidic drinks


Do you have a lot of infections?
I am on long term antibiotic therapy...so no

Do antibiotics helps your symptoms?
At one point they did help them somewhat...


Good luck with your doc!

[tigger_gal]

Do you still have pain even after trying many different IC treatments available?
yes I do

Are you on pain meds?
I take darvocet for my IC pain, I also take flexeril for my fibro and myofascial pain, which dose help my IC.


Have you done home instills weekly for more then a year?


If so how often?


Or have you tried but been unable to tolerate instills?


Is your bladder hypersensitive to many foods, chemicals etc.?
my bladder is senstive to many things.

List some of the unusual ones:
Most of my pain comes from food, pepsi, pizza, spegetti, strawberries, anything acidic like oranges & orange juice. spicy items



Do you have a lot of infections?
maybe 1 or 2 a year. I had a never ending one a year or so ago and was put on 4 months of macrobid.

[ICNDonna]

Do you still have pain even after trying many different IC treatments available? SOMETIMES.

Are you on pain meds? ONLY AS NEEDED


Have you done home instills weekly for more then a year? NO.

If so how often?


Or have you tried but been unable to tolerate instills? I HAVE HAD SEVERAL DIFFERENT KINDS OF INSTILLATIONS.

Is your bladder hypersensitive to many foods, chemicals etc.? YES

List some of the unusual ones: NOTHING REALLY UNUSUAL.

Do you have a lot of infections? NO.


Do antibiotics helps your symptoms? I DO NOT TAKE ANTIBIOTICS WITHOUT A VERIFIED INFECTION.

[Romans8:28]

Thanks so much for your responses:)!
I hope we hear from some more too!

As far as unusual, I think many of us have come to accept that foods etc. causing flares in normal but to the non ICer it may seem unusual.
Things like detergents, soaps, feminine products, latex, betadine, advil, cold meds etc. I seem to react to all of these and foods too!
Shelly

[massagedoula]

I really need help with this for my doctor. He is wonderful but I’m his worse patient yet know many of you struggle even more than I so, Please help me! I just need to let him know I am not alone! Thanks in advance for your help!

Do you still have pain even after trying many different IC treatments available?

Are you on pain meds? No


Have you done home instills weekly for more then a year? No

If so how often?


Or have you tried but been unable to tolerate instills? Never tried them, trying oral meds first.


Is your bladder hypersensitive to many foods, chemicals etc.? Yes!

List some of the unusual ones:
Sugar
Acidic fruits
Vinegar
Black Pepper
condiments of all sorts
Most drinks except Evian, blueberry juice, carrot juice, chamomile, rooiboos tea
processed and artificially flavored/colored foods
Cigarrette Smoke, fireplace smoke, pollution smoke
Cleaning products (windex, lysol, etc)
perfume, aftificially scented candles
(There are more food ones but these are the worst)





Do you have a lot of infections? No, Never since I got IC!


Do antibiotics helps your symptoms? I never took them since I got IC, since I had no infections.

[Silverfern]

Do you still have pain even after trying many different IC treatments available? I don't have pain.

Are you on pain meds? No.


Have you done home instills weekly for more then a year? No.

If so how often? Never.


Or have you tried but been unable to tolerate instills? No.


Is your bladder hypersensitive to many foods, chemicals etc.? Yes.

List some of the unusual ones:

Smoked foods
Corned beef
Cleaning products - disinfectant, window cleaner, cream cleaners, detergents, dishwashing liquid, toilet cleaners etc.
Paint fumes (these give me MAJOR urgency)
Nearly all perfumes
Perfumed toilet paper
Perfumed washing powders
Certain hairsprays, shampoos and conditioners
Smoke of all sorts
Diesel fumes
Scented candles
A lot of the perfumed things I've mentioned also burn my nasal passages!
Heaps of food/drink sensitivities but nothing too unusual




Do you have a lot of infections? None.


Do antibiotics helps your symptoms? N.A.

[~*~Christine~*~]

Do you still have pain even after trying many different IC treatments available?

Yes, very much so

Are you on pain meds?

Yes, Demerol and Percocet, but even in high doses they only help me tolerate the pain

Have you done home instills weekly for more then a year?

No, just up to 8 sesions, once a week

If so how often?

Look above

Or have you tried but been unable to tolerate instills?

I couldn't tolerate the DMSO after one treatment, the Urocyst I went through the entire treatment and it didn't help. I also tried heperin but it actually caused spasms so I didn't try it again

Is your bladder hypersensitive to many foods, chemicals etc.?

Yes. Anything that I put in my body, even spring water, irritates my bladder

List some of the unusual ones:

Every thing : )

Do you have a lot of infections?

No

Do antibiotics helps your symptoms?

No

[Boni]

Do you still have pain even after trying many different IC treatments available?

I haven't tried many IC treatments through my URO.I treat myself basically.

Are you on pain meds?

I TAKE HYDROCODEINE WHEN IT ACHES, PYRIDIUM PLUS FOR BURNING


Have you done home instills weekly for more then a year?

NEVER HAD ONE

If so how often?


Or have you tried but been unable to tolerate instills? NO


Is your bladder hypersensitive to many foods, chemicals etc.?

YES, WINE, BEER, WHITE SUGAR, SPICY FOODS, COFFEE, TEA, APRICOTS DRIED WITH SULFUR, CITRUS, MAYO, TOMATOES

List some of the unusual ones:





Do you have a lot of infections? NO


Do antibiotics help your symptoms? YES

[Romans8:28]

Thanks so much for all the input! you guys are great!

[Romans8:28]

Any others?

[bellaluna05]

Do you still have pain even after trying many different IC treatments available?
Yes, so much so that my bladder and urethra have to be removed next month.


Are you on pain meds?
Tons, fentanyal patch 150 mcg every 72 hrs, morphine 30 mgs every 8 hrs, oxycodone 10 mgs as needed every 4 hrs, neurontin 900 mg 3x a day.

Have you done home instills weekly for more then a year?
No because Instills always made me worse.


If so how often?


Or have you tried but been unable to tolerate instills?
I had an alergic reaction to DMSO and the others just didn't help. I also couldn't handle holding any liquid in my bladder, it hurt too much. I don't even think this method should be called treatment it should be call torture, it hurts so bad and didn't ever help me at all.

Is your bladder hypersensitive to many foods, chemicals etc.?
--I can only eat plain chicken (sometimes red meat) with salt and butter, zucchini, and sometimes green beans, that is all I tolerate but I had to put some bread and sugar back in my diet because I went down to 88 LBS. These things do irritate my bladder a little but, I can't be that skinny. everything else would send me to the ER in horrible pain, mostly burning.

List some of the unusual ones:
The paint on walls even if it been dry for years, bath water, rain, any kind of smoke, lotions and soaps, the air, riding in a car, well traveling at all, even a lot of the pain killers they give me for the pain make it worse, there are so many things!


Do you have a lot of infections?

I didn't used to but I had to get a bladder augmentation done because my bladder was ruptured during a cystoscopy with hydrodistention and now I do get a lot of infections from haveing to catheterize myself.

Do antibiotics helps your symptoms?
They usually make me worse.

[patricia1]

Do you still have pain even after trying many different IC treatments available?
I have tried many different treatment plans for IC. Everything from meds, instills and the Interstim and I still have daily pain.

Are you on pain meds? Yes I am on Lortabs and Ultram on a daily basis.


Have you done home instills weekly for more then a year? No

If so how often?


Or have you tried but been unable to tolerate instills? Yes


Is your bladder hypersensitive to many foods, chemicals etc.?

Yes!!! There are foods that I must avoid and I have even had problems with non IC meds

List some of the unusual ones:



Do you have a lot of infections? I rarely if ever have a UTI


Do antibiotics helps your symptoms?
Only if I have a true infection otherwise no