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Is Intersistial Cystitis forever?
I have been diagnosed with overactive bladder, or intersistial cystitis. I'm currently taking Sanctura once a day.
Can someone tell me if I'm going to have IC for the rest of my life? Or, does it calm down, and go into remission ever?
I have begun the IC diet just recently. Don't know for sure if it's working because It's only a few days, and I think I need to give it some time so the bladder can calm down.
But, I would like to know if IC is forever . . . can someone help me with that?
Thanx . . .
Can someone tell me if I'm going to have IC for the rest of my life? Or, does it calm down, and go into remission ever?
I have begun the IC diet just recently. Don't know for sure if it's working because It's only a few days, and I think I need to give it some time so the bladder can calm down.
But, I would like to know if IC is forever . . . can someone help me with that?
Thanx . . .
I Was Taking Elmiron For Three Years..With No Relief!..In Jan 2018 I Spent Four Days In The Hospital With The Flu..I Had No Elmiron..But..I Was Getting Alkaline Fluids Thru My IV..After Four Days..My IC Pain..(Which Has Always Been Very Painful..Just Went Away!..I Now Drink Only Alkaline 95.5 Water Everyday..And Still Have No Pain..I Have Yet To Talk With My Doc. About This..And...I Know We Are All Different..BUT!!..This Seems To Be Working For Me..And..I Have added Coffee And Tea Back Into My Life..Best Rgards!! Melody Duncan
I guess I'm lucky because after 30 days of taking 300mg of Elmiron, I've noticed a big
improvement in my IC. Also, I'm eating foods that are highly alkaline while avoiding
those foods which are highly acidic. NO alcohol. Chocolate will cause me irritation
and frequent urination. ( I haven't eaten any tomatoe sauce in quite a while, and I;m
curious how my system will respond to it.) My doctor says that I cannot take Elmiron
for more than 3 months without undergoing tests on my liver and kidneys. He didn't say
why, so I guess I will have to have that conversation with him.
Bottom line- a high alkaline diet and Elmiron seem to be working for me.
improvement in my IC. Also, I'm eating foods that are highly alkaline while avoiding
those foods which are highly acidic. NO alcohol. Chocolate will cause me irritation
and frequent urination. ( I haven't eaten any tomatoe sauce in quite a while, and I;m
curious how my system will respond to it.) My doctor says that I cannot take Elmiron
for more than 3 months without undergoing tests on my liver and kidneys. He didn't say
why, so I guess I will have to have that conversation with him.
Bottom line- a high alkaline diet and Elmiron seem to be working for me.
whoop[s missed the first post! Check with your compounding pharmacy there...Having lived in Fla a long time I would not be surprised if finding one there was not hard! Lots of regulations... however check into and also you can call Dakota pharmacy 1-800-290-7028 and ask for Kevin. he specializes in formulas specifically for ICer's! I typed out the script and had my URO sign it so we had the dosages right!
Shelly
Shelly
Triggers can differ amoung patients! Additives and preservatives are a BIG trigger for me!
I look for seafood package without them. Kashi, Cascadian farms etc. make several very good all natural cereals with no additives in them! Wal-mart carries several differnt kinds!
Shelly
I look for seafood package without them. Kashi, Cascadian farms etc. make several very good all natural cereals with no additives in them! Wal-mart carries several differnt kinds!
Shelly
Regarding the diet for IC . . can I have canned tuna and salmon? I read the labels, and some of these products have tricalciumphosphate in them. Don't know if this additive is one of the offenders.
Also, are there any dry cereals that are safe to eat on the IC diet?
Thanx . . .
Also, are there any dry cereals that are safe to eat on the IC diet?
Thanx . . .
Thank you so much for responding to my post on IC.
I have been following the diet very carefully . . It's not that difficult. The only problem I have is that so many foods have preservatives and ascorbic and citric acids. Not sure about dry cereals. So, I have limited my cereal food to oatmeal.
You mention vaginal suppositories . . can I get them in the pharmacy where I live in Florida? Or, is it a prescription item? Do they really help?
I am going to see my urologist this week . . I will put that on my list to discuss with him.
Please tell me the brand name, etc.
Thanx again . . .hope to hear from you again.
I have been following the diet very carefully . . It's not that difficult. The only problem I have is that so many foods have preservatives and ascorbic and citric acids. Not sure about dry cereals. So, I have limited my cereal food to oatmeal.
You mention vaginal suppositories . . can I get them in the pharmacy where I live in Florida? Or, is it a prescription item? Do they really help?
I am going to see my urologist this week . . I will put that on my list to discuss with him.
Please tell me the brand name, etc.
Thanx again . . .hope to hear from you again.
Unfotunately IC is something you have the rest of your life however the severe pain does not have to continue there are many helpful hoping tools!
As am IC patient myself I know that this disease can be very frustrating and painful! Unfortuntately non of us "get over it" however there are many coping tools that can help us to regain our lives! The best first resource is a book The IC Survival Guide by Dr. Robert Moldwin. You can also get a lot help, support and info through the IC Network as well as the ICA..., I can not post websites here but you can google it!
My IC is harder to get under control because of some complicating issue however with the help of my URO I have a lot of coping tools that keep it pretty well under control.
Diet is a big thing... the big triggers being Tomatoes, cranberry, citrus, soda esp caffeine,, caffeine at all....alcohol, and smoking! The ICN has a lot more info as well as resources and recipes to help you with the IC diet!
I also do bladder instills of pain medications a long with a steriod etc. I use to go to my doctors office for these but now do them at home. My instills are not DMSO but lidocaine, marcain, solu cortef, sodium bicarb and if I am fighting infection gentamician.
I also have instills made with MSM, which is like DMSO without the pain and the smell!
Even though DMSO is the only medication approved by the FDA for IC.., more of us and most doctors are now using the rescue instills like mine instead. Some do get relief for DMSO but usually the symptoms get worse intially! I do my MSM instills on my own with full knowledge and permission from my URO.
I have vagnial suppositories that help when I am in a flare as well. The I get compounding through Dakota Pharmacy, and Kevin who specializes in working with ICers and pain management issues.'
We are all different so it takes time to find out what works for you but hang in there... you will find something to help you!
Shelly
PS if you live in Missouri or Ark please pm we have a networking support group to patients in this region!
As am IC patient myself I know that this disease can be very frustrating and painful! Unfortuntately non of us "get over it" however there are many coping tools that can help us to regain our lives! The best first resource is a book The IC Survival Guide by Dr. Robert Moldwin. You can also get a lot help, support and info through the IC Network as well as the ICA..., I can not post websites here but you can google it!
My IC is harder to get under control because of some complicating issue however with the help of my URO I have a lot of coping tools that keep it pretty well under control.
Diet is a big thing... the big triggers being Tomatoes, cranberry, citrus, soda esp caffeine,, caffeine at all....alcohol, and smoking! The ICN has a lot more info as well as resources and recipes to help you with the IC diet!
I also do bladder instills of pain medications a long with a steriod etc. I use to go to my doctors office for these but now do them at home. My instills are not DMSO but lidocaine, marcain, solu cortef, sodium bicarb and if I am fighting infection gentamician.
I also have instills made with MSM, which is like DMSO without the pain and the smell!
Even though DMSO is the only medication approved by the FDA for IC.., more of us and most doctors are now using the rescue instills like mine instead. Some do get relief for DMSO but usually the symptoms get worse intially! I do my MSM instills on my own with full knowledge and permission from my URO.
I have vagnial suppositories that help when I am in a flare as well. The I get compounding through Dakota Pharmacy, and Kevin who specializes in working with ICers and pain management issues.'
We are all different so it takes time to find out what works for you but hang in there... you will find something to help you!
Shelly
PS if you live in Missouri or Ark please pm we have a networking support group to patients in this region!
MEDICAL PROFESSIONAL
Hi,
DMSO is the wood pulp extract that is used.
regards
DMSO is the wood pulp extract that is used.
regards
MEDICAL PROFESSIONAL
Hi,
Tests like the Pelvic Pain Urgency/Frequency (PUF) Patient Survey, the Potassium Sensitivity Test, etc., are perofrmed to identify IC or overactive bladder.
A diagnosis of IC/PBS/BPS would be confirmed with a hydrodistention during cystoscopy with biopsy.
The complications of the cystoscopy with hydrodistention is that it can cause slight damage to the urothelial lining, and the cystoscopy is not without risk of urethral damage.
Do check if your symptoms subside with the sanctura, or switch to elmiron after a couple of weeks if it does not work.
", a wood pulp extract, is the only approved bladder instillation for IC yet it is much less frequently used in urology clinics. Research studies presented at recent conferences of the American Urological Association by C. Subah Packer have demonstrated that the FDA approved dosage of a 50% solution of DMSO had the potential of creating irreversible muscle contraction. However, a lesser solution of 25% was found to be reversible. Long term use is questionable, at best, particularly given the fact that the method of action of DMSO is not fully understood.[17]
More recently, the use of a "rescue instillation" composed of elmiron or heparin, Cystistat, lidocaine and sodium bicarbonate, has generated considerable excitement in the IC community because it is the first therapeutic intervention that can be used to reduce a flare of symptoms. Published studies report a 90% effectiveness in reducing symptoms.[18]
Other bladder coating therapies include Cystistat(TM) (sodium hyaluronate) and Uracyst(TM) (chondroitin). They are believed to replace the deficient GAG layer on the bladder wall. Like most other intravesical bladder treatments, this treatment may require the patient to lie for 20 - 40 minutes, turning over every ten minutes, to allow the chemical to 'soak in' and give a good coating, before it is passed out with the urine"
en.wikipedia.org/wiki/Interstitial_cystitis
Regards
Tests like the Pelvic Pain Urgency/Frequency (PUF) Patient Survey, the Potassium Sensitivity Test, etc., are perofrmed to identify IC or overactive bladder.
A diagnosis of IC/PBS/BPS would be confirmed with a hydrodistention during cystoscopy with biopsy.
The complications of the cystoscopy with hydrodistention is that it can cause slight damage to the urothelial lining, and the cystoscopy is not without risk of urethral damage.
Do check if your symptoms subside with the sanctura, or switch to elmiron after a couple of weeks if it does not work.
", a wood pulp extract, is the only approved bladder instillation for IC yet it is much less frequently used in urology clinics. Research studies presented at recent conferences of the American Urological Association by C. Subah Packer have demonstrated that the FDA approved dosage of a 50% solution of DMSO had the potential of creating irreversible muscle contraction. However, a lesser solution of 25% was found to be reversible. Long term use is questionable, at best, particularly given the fact that the method of action of DMSO is not fully understood.[17]
More recently, the use of a "rescue instillation" composed of elmiron or heparin, Cystistat, lidocaine and sodium bicarbonate, has generated considerable excitement in the IC community because it is the first therapeutic intervention that can be used to reduce a flare of symptoms. Published studies report a 90% effectiveness in reducing symptoms.[18]
Other bladder coating therapies include Cystistat(TM) (sodium hyaluronate) and Uracyst(TM) (chondroitin). They are believed to replace the deficient GAG layer on the bladder wall. Like most other intravesical bladder treatments, this treatment may require the patient to lie for 20 - 40 minutes, turning over every ten minutes, to allow the chemical to 'soak in' and give a good coating, before it is passed out with the urine"
en.wikipedia.org/wiki/Interstitial_cystitis
Regards
How is it determined what causes my particular case of IC?
Also, what does the bladder instillation involve?
Thank you . . .
Also, what does the bladder instillation involve?
Thank you . . .
MEDICAL PROFESSIONAL
Hi,
There may be various causes underlying Interstitial cystitis. It occurs in individuals with a genetic predisposistion and may be mediated by autoimune, allergy, and neurologic components.
Treatment with specific medications such as elmiron or bladder instillation can cause the bladder lining to heal and minimize symptoms.
The IC diet works differently for different individuals and will have varying results.
Interstitial cystitis, once developed, is a lifelong condition, but it will have periods of remission and reactivation.
Do keep us posted on your doubts and progress.
'Regards
There may be various causes underlying Interstitial cystitis. It occurs in individuals with a genetic predisposistion and may be mediated by autoimune, allergy, and neurologic components.
Treatment with specific medications such as elmiron or bladder instillation can cause the bladder lining to heal and minimize symptoms.
The IC diet works differently for different individuals and will have varying results.
Interstitial cystitis, once developed, is a lifelong condition, but it will have periods of remission and reactivation.
Do keep us posted on your doubts and progress.
'Regards
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