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loraleena

Intersticial Cystitis Flare

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I am having a bad IC flare after a brief bought with a UTI. I have not had any problems since my diagnosis of IC two years ago after a UTI. I went on the IC diet and was fine. Found I just needed to avoid citrus. I am freaking out. I thought this was a thing of the past. Back on the diet. Yea more restrictions. Does anyone dealing with this have suggestions for natural ways to help the discomfort?

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HEllo? Anyone?

I don't have IC. Wish I could help. I used to get UTI's ALL the time, but oddly, when I went gluten-free, I stopped getting them! I haven't had one in atleast 8 months. I used to get them every 2 or 3.

I am sorry, but I am not fimular with the IC diet...are you celiac? I wish I could help!

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HEllo? Anyone?

I was diagnosed with IC several years ago. My urologist tried every kind of medication/treatment available and nothing seemed to help. The IC diet didn't work either. I finally had the Interstim implant surgery done (after a lot of haggling with our insurance company). I was a "pioneer" in the area in which I live since I was the third patient to have it done by this doctor. The implant is not a cure for IC, since there is no cure, but it makes the pain virtually disappear. Since having the implant in 1998, I have not had a single IC flareup.

If you'd like more information, you can check out the Interstim website at www.medtronic.com. I'll warn you right up front that it is expensive. I had mine done almost 10 years ago and the cost for outpatient surgery was around $55,000. Fortunately, at the time, we were under a great HMO plan and only had to pay $200 of the costs. Maybe it's because it was a new product at the time, so the price may have come down.

Here's the kicker...since being diagnosed with Celiac in November of 2006, my doctor and my urologist both feel that there is a correlation. The way it was explained to me is that your body will try to expel toxins as quickly as it can - which will cause "The Big D," vomiting, DH, Meniere's or IC...all of which I have, by the way.

I'm wondering now, since going gluten-free, if I'll even need my implant. My doctor treating Celiac says no...my urologist says yes. Me? I'm going to keep the implant because I NEVER want to experience IC pain again and, if there's even a remote chance of that happening, I'm sticking with a sure thing.

I'm sorry you have to deal with IC. Been there...done that...don't want to ever experience it again.

Good luck to you!

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I'm sorry you are having a flare of your IC!! I was dxd with that in 1992. It actually was one of the causes for my having to leave the profession of teaching.....that won't be hard for you to imagine WHY!! ;)

I now take the original mangosteen supplement and it helps my IC tremendously! It has also helped my Lyme disease ALOT!!!!!!!

I do believe there is a correlation between IC and other problems. For me, it was the LYME DISEASE that was causing the IC....in my opinion.

After about 2 years on antibiotics, the IC pain was way down. Then 3 yrs ago when I began taking the mangosteen, the rest of the pain left.

I'm one happy camper!! :)

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Isn't mangosteen a fruit and acidic? Right now I am taking a homeopathic med that is helping a lot, or maybe it is just my flare calming down. I believe the remedy (Catharis) is helping. Tell me more about Mangosteen.

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Isn't mangosteen a fruit and acidic? Right now I am taking a homeopathic med that is helping a lot, or maybe it is just my flare calming down. I believe the remedy (Catharis) is helping. Tell me more about Mangosteen.

No, it's not acidic. It's even used by many for acid reflux.

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My wife was diagnosed with IC about six years ago (hers was confirmed through a cysto-scope done in the hospital, the urologist rated her a 7 out of 10 for the damage inside). There is more to the IC diet than just citrus. Also, no alcohol, no chocolate, no caffeine, no fresh tomatoes, no acidic fruits and vegetables (think: pears are mild therefore good, hot peppers are spicey and are bad), no soda, no artificial sweeteners.

Make sure to drink enough water, without throwing your bladder into a fit. This is so important it can not be stressed enough. When I first met my wife she was only drinking coffee and diet sodas. She laughed at me when I pleaded with her to drink more water everyday. (She apologized when the doctor agreed).

My wife was given weekly instillations of TICE BCG, which is a liquid form of partially denatured tuberculosis bacteria, into her bladder for 8 weeks. It reacted with her bladder lining and sloughed off a layer of skin, forcing the bladder to regrow the surface lining. It took about a year before my wife was out of the dangerous waters of constant flares, not sleeping, peeing 25 times a day. But now she is near normal and in fact probably pees less often than some so-called "healthy" people. She still follows the IC diet but can have occasional cheat days (her favorite thing in the world is coffee, so this usually her choice) but she makes sure to stay away from spicey foods or she will have problems at night laying down prone.

One other thing that helps is PRELIEF brand acid controller you take over the counter with your meal. It isn't made for IC treatment but helps to nuetralize your food a little, which eases the acidity of the urine as it comes through.

There is another over-the-counter medication which has the active ingredient Phenazopyridine, which goes by several different common names including Azo-Standard and Uristat. These can be found in the big chain pharmacies like CVS and also most supermarkets. It gently numbs the bladder, providing some relief to the extreme pain IC patients can feel during a flare. Always keep some with you. It's like an aspirin for a headache.

The cause is unknown although in my wife's case we believe it was related to the many fertility tests she went through years earlier with her first husband during which all sorts of chemicals and dyes passed through her system. I personally belief, as celiac who is somewhat diet obsessed, that diet is a huge part of this too. Her diet was fast food, coffee, and artificially sweetened sodas, and chocolate bars every night as a snack. Now she eats completely different and everything about her health, from her cholesterol to her energy levels, even her weight, has changed. It's crucial to treat your body well, especially if it is suffering.

Hope this helps.

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Thanks for your info. I have done all that. Originally followed diet strictly. After a month could eat anything but citrus. I have been completely fine for 2 years, but a UTI set it off again. I am back on diet and using prelief before everthing I eat. I am feeling a lot better. I do have the Prodium stuff for a bad day and am taking a homeopathic remedy called Catharsis that helps. Hopefully I will get back to where I was before.

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I am having a bad IC flare after a brief bought with a UTI. I have not had any problems since my diagnosis of IC two years ago after a UTI. I went on the IC diet and was fine. Found I just needed to avoid citrus. I am freaking out. I thought this was a thing of the past. Back on the diet. Yea more restrictions. Does anyone dealing with this have suggestions for natural ways to help the discomfort?

Hi, I was diagnosed with IC just about a year ago. It all started excatly one year ago with a cyst rupturing. After tests to rule out cancer, I was sent to a urologist and he said I had IC. It was very painful and hard to deal with until I discovered Matia Brizman's website...... http://www.icaroadtorecovery.com/matia.htm She's an angel! After following the diet I was just about perfect. You'll have to check out her website to find out more about her procedures, but she's awesome! After not having any flare ups for about two months, This latest one was triggered by my Period and ovulation. Still having the flare up and am back on a very strict diet again and I will not go off that diet again! I think I got a little cocky feeling normal again, I guess that can happen. With the frequency I'm having, I still feel very blessed that I am not in the pain I was in last year at this time and thank God for that. Still can't wait for this flare up to go away though! I'm sure it will soon....I just need to be patient. In the meantime, hot baths help and doing Physical exercise helps. Probably because they just keep my mind off it. But I'm very determined not to let this get the best of me!! What was that stuff you were talking about that you take before you eat and it helps? Please let me know and tell me where I can get that. I feel that I contacted IC because of trying to get pregnant....all the fertility stuff they gave me. Thanks for your help!!

Lon

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I am having a bad IC flare after a brief bought with a UTI. I have not had any problems since my diagnosis of IC two years ago after a UTI. I went on the IC diet and was fine. Found I just needed to avoid citrus. I am freaking out. I thought this was a thing of the past. Back on the diet. Yea more restrictions. Does anyone dealing with this have suggestions for natural ways to help the discomfort?

Hi loraleena,

I have IC and I have to say it has for the most part gone away after I stopped eating gluten. My doctor did ask me about that and if it had been better. I still seem to go a lot more than normal but the pain is for the most part gone now. I don't know if it helps but I use a heating pad on my back not my front with my knees up and it help a little bit. I have resorted to taking pain pills for it at night, it is much worse when I lay down. I have had the treatments and that realy hurts to. The last time I went to the Dr. with a flar up, he had to give me a pain shot before I could move off the table. I haven't had to go back for a long time now. I know, stress can make it much worse. Try to rest as much as possible. Also I noticed it was a little better when I took Pepsid. I don't know if it is gluten free so look at the lable.

I hope it goes away soon.

Cathy

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Hi cat,

Seems we meet again - responded to you about the thyroid as well. I am doing much better on the diet (already been gluten free for 1 1/2 years when I got this flare) and taking prelief. I also take a homeopathic remedy called cantharsis. It was a UTI that brought it on again. Had been fine for 2 yrs. not even following IC diet except for citrus. Are you on IC diet? I like the heating pad right on my bladder area. Thanks for your info.

Laura

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