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8dzaweek
@8dzaweek

Posts: 2
Joined: Mar 22, 2016

Interstitial Cystitis - I would like to connect with others

Posted by @8dzaweek, Mar 22, 2016

I.ve been told that Interstitial Cystitis is an autoimmune disease. Are there any discussion groups on this very painful condition??

Liked by vistabobc

REPLY

@8dzaweek, and welcome to Connect. I’m Alyse, and I’m one of the community moderators here. I’m to hear about the pain Interstitial Cystitis has caused you. Have you found treatment options or remedies to help manage the pain?

I’m tagging @lexi and @jeananderson2014 as both of these members have wrote about living with Interstitial Cystitis. I hope you all can connect and share stories, tips and advice.

Yes, Elmiron has helped somewhat, but they raised the price to $680.00 for a months supply. Insurance will cover all but $125.00 until July 1st of this year. I’ve been taking Elmiron for more than 10 years, and now all of the sudden the price has went up 10 fold. I have a urologist that seems to know more than others about IC, but still there is not much support in our area (WV) for IC,
Low doses of Klonipin were also prescribed to relax the bladder, and that works too. But the problem is IC itself. Do one wrong thing (eat the wrong food, drink the wrong tea or too much exercise) and it flairs up within days.

In addition to the great community here, the Interstitial Cystitis Association may be another resource to check out for education and support resources.

find urogynecologist . com
For IC, the #1 thing to help control symptoms is diet. When you have a flare-up you can get bladder instillations, and then there are some medications. But that is really it right now. The website above will help you find a Urogynecologist in your area. They specialize in IC.

Liked by bethtot

Ive had IC for 12 years I take Elmiron 3 times a,day & it has,truly helped me with it. It is VERY expensive like about $700 a month but since it is the obly drug for IC my insurance covers it i just have my copay. I did have bladder instills for over 2 years when first diagnosed & they themselves were horrifically painful. They used a chemical called DMSO in tgrm & it was like setting my bladder on fire. What actually seemed to help were the bladder distensions when they would go in & look inside my bladder & somehow tgey blow it up or full it up to & I would actually get a couple pain free months afterwards Good luck with your pain & your treatment

@8dzaweek

Yes, Elmiron has helped somewhat, but they raised the price to $680.00 for a months supply. Insurance will cover all but $125.00 until July 1st of this year. I’ve been taking Elmiron for more than 10 years, and now all of the sudden the price has went up 10 fold. I have a urologist that seems to know more than others about IC, but still there is not much support in our area (WV) for IC,
Low doses of Klonipin were also prescribed to relax the bladder, and that works too. But the problem is IC itself. Do one wrong thing (eat the wrong food, drink the wrong tea or too much exercise) and it flairs up within days.

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I have not tried the medication but I have found to much physical work does cause flares. I helped my mom rake this weekend and weed her garden and that set my IC up for a flare

I have IC with no treatment. I also have insulin dependent type 2 diabetes, cirrhosis, sjogrens syndrome and hypothyroidism.

Hello @suzettemh,

Welcome to Connect; we’re glad you joined us in this discussion. @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@suzettemh, have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

@suzettemh

I have IC with no treatment. I also have insulin dependent type 2 diabetes, cirrhosis, sjogrens syndrome and hypothyroidism.

Jump to this post

Good Morning
I just started physical therapy for my IC. The physical therapist was able to give me a lot if information and the pelvic floor exercise are very helpful The IC diet is very
helpful as well.

@suzettemh

I have IC with no treatment. I also have insulin dependent type 2 diabetes, cirrhosis, sjogrens syndrome and hypothyroidism.

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Thank you so much for sharing that, @bethtot; I’m so glad that the exercise and diet are helping.
Please keep us posted.

@suzettemh

I have IC with no treatment. I also have insulin dependent type 2 diabetes, cirrhosis, sjogrens syndrome and hypothyroidism.

Jump to this post

I limit my beverage of choice to water. No carbonization, no alcohol, no artifical sweetners.

Liked by grandmajan

@kanaazpereira

Hello @suzettemh,

Welcome to Connect; we’re glad you joined us in this discussion. @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@suzettemh, have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

Jump to this post

I limit my beverage of choice to water. No carbonization, no alcohol, no artifical sweetners. I suffer with a burning bladder and eat mildly with lots of water when in a flare.

@kanaazpereira

Hello @suzettemh,

Welcome to Connect; we’re glad you joined us in this discussion. @susierq111 @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, have posted about interstitial cystitis (IC) in previous discussions, and I hope that they will return to share their experiences.

I’d also encourage you to read this information on interstitial cystitis from Mayo Clinic: http://mayocl.in/1v8Vak4.

@suzettemh, have you altered your diet or thought about ways you could change it? Do you have any specific questions about IC, or maybe insights to share with Connect members?

Jump to this post

I drink milk, water and a very occasional diet root beer with my IC. Did your dr. Tell you about the pill Prelief. Which can be purchased at Walmart and occasionally I take them so I can eat something not on the IC diet, but that is rare I do that. I do best following the IC diet.

@missyb57

Ive had IC for 12 years I take Elmiron 3 times a,day & it has,truly helped me with it. It is VERY expensive like about $700 a month but since it is the obly drug for IC my insurance covers it i just have my copay. I did have bladder instills for over 2 years when first diagnosed & they themselves were horrifically painful. They used a chemical called DMSO in tgrm & it was like setting my bladder on fire. What actually seemed to help were the bladder distensions when they would go in & look inside my bladder & somehow tgey blow it up or full it up to & I would actually get a couple pain free months afterwards Good luck with your pain & your treatment

Jump to this post

DMSO is one type of medication. If your bladder is sensitive to that typeb of installation, they can try different variations to see what you can handle.
These days, a bladder cocktail of lidocaine, sodium bicarbonate, heparin and gentamicin are more common. Some doctors use bupivacaine, triamcinolone along with heparin and gentamicin.
Here's some good info:
https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/diagnosis-treatment/drc-20354362

I’m technologically challenged “by choice” so I don’t know if you’ll get this. I don’t know if my email will automatically show up or not. I have had IC for about 35 yrs have had different instillations and hydrodistentions. It is hard for people to understand that you aren’t feeling well because a lot of the time we don’t look sick. As you have probably gathered I’m new at this. Please contact me

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