topic Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it?? in Kitchen

Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Britbrit13 — Sun, 13 Apr 2014 00:12:13 GMT

I was wondering Do any of you battle with Interstitial Cystitis?, IC and if so how do you handle it?? What bottles of water work for you?? What foods makes you feel better??

Its been a hard week for me iv had a Sinus infection and had to take a z-pac for it..i have taken food with it..

And must have eaten something its been a very painful week..Its hard to post when you hurt!! My daughter is in culinary school and has been baking bread this week ie white flour..everything is hurting..these flairs are just so painful..What do you eat in a flair???any help will be appreciated~~

Britt

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Hearts4Me — Sun, 13 Apr 2014 00:30:00 GMT

OMG! Yes, yes, yes! I have NEVER 'known' anyone else who has this dreadful condition. I was diagnosed back in 1991. It truly can be "life changing" in a weird way. And I am also in a fierce flare right now...have been since the holidays actually. I've been up an average of 8 - 10 times per night lately -- no joke, for real.

I hate to post everything on here, 'cause I don't think most people care - LOL. I had bladder instillations via catheter in January, but no help.

I have to leave now for an errand, but would like to keep in touch for sure!

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Britbrit13 — Sun, 13 Apr 2014 01:05:24 GMT

I'm going out shopping as well, but ill check back and write more..I'm hoping maybe if i can get my mind off things maybe i can find some form of sanity!! Are there any support groups where your at?? There was one for a while but it stopped meeting

I know you sometimes feel like your the only one out there, Did they ever tell you what they think might have caused it???? Iv been up every hour!! I do pain meds but that's just not enough!! What kind of things can you eat??? I do good with potatoes and eggs and I make my own breads.. no fruits right now.. I am so tired of this diet!!!!!!.I have to get this under control!!! I'm just so tired of the pain!!

In the beginning when i first got this my DH and i went to the support groups,,so he has backed me 100% iv been married almost 20 years..he is a good man I know he love's me ) But at times like this..its just hard..I noticed recipes on p interest today so im going to check it out..take care and i hope you feel better. one more thing,

My dh told me one time we had been to a meeting and this young newly married lady 21 or so had gotten it..she was so upset crying and my DH said man i feel for her...she was so upset!! this can turn your world upside down!!!

Britt

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

spookyghost — Sun, 13 Apr 2014 01:22:32 GMT

I just want to say that I am so sorry and feel so bad for anyone going through this. My story is very long. I was in so much pain and had to wait 3 weeks to get into the specialist. My family Dr called and begged them to take me sooner. But they didn't. I ended up going to the er for pain. So I was researching on the computer. And I had all the symptoms if itertistial cystitis. Sorry if I slaughtered the spelling. When I finally got into the Dr he scoped my bladder and saw how bad it was. He said that I had bad bladder infection with some ITC. At first I thought he was crazy because how do you have slight ITC? But he must have been right because its been two years and I have not had it since. What I want to say is that my heart goes out to anyone with this. I was in so much pain I could not function. And after researching it on the computer I realized people have gone on disability because of it. I was devastated. I was in so much pain that I couldn't function in my home let alone my job. Anyways it did go away and I haven't had it since. And I am considered lucky. Very lucky. Because I had no idea how I was going to live with this. God bless you and everyone who has this. I am not one to go to the er. I'm 46 and have been to the er twice bonce when I was five and when I had this. Its been three years and I still think about it. I will never forget. I know this doesn't help you but I feel for you. I always feel connected to anyone with this. Good luck and godbless

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

missy mouse — Sun, 13 Apr 2014 01:48:38 GMT

Yes I've been living with it for over20 years. It took 7 doctors before I got diagnosed. Go to the ICA website. There is also a ICN network. It tells you about the proper diet to follow.. The ICA network can help you find a dr. That specializes in IC. They also have a Facebook page which can be helpful. Right now I'm in a flare. Spring and Fall are the worst for flares. I just had my second treatment. Fingers crossed . Avoid all acidic food, alcohol, caffeine and many preservatives please check the websites. Best to you

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

missy mouse — Sun, 13 Apr 2014 01:50:11 GMT

By the way more people have IC than MS. Over 1 million people have been diagnosed including children and men. But mostly woman are affected

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

shoekitty — Sun, 13 Apr 2014 02:16:39 GMT

All I can say is , OMG, I am almost dumbfounded. No one ever knows what I mean when I say I have interstitial cystitis, or IC as my urologist says! For years I suffered with it, thinking I had an infection. Sure enough, it wasn't, and there was no explanation. About 15 years ago my Doctor (who had been my Doctor for 25 years) came up with the diagnosis. It wasn't a really well known then. Treatments were slim. There were times during a flare up I got up over 15 times a night. Once I fell asleep on the toilet and nearly went through the glass shower. First they diagnosed it as OAB, and gave me pills for that. Made it worse!

About 11 years ago I was referred to this Dr who treated IC. He started me on Urelle and macrodantin (sp).. I only take it at night unless i have a flare up. I trade off with pyridium. When I have a huge flare up I go in for Parson's treatments. There are pills, but I didn't take them, (also they were 420) Have you had those? I have a wonderful PP0, and the best RX plan. Most scripts are 33 cents, 19 cents, a few bucks! But those Urelle pills are 172.00 dollars, my copay! I think they are close to 500 bucks if you paid the full amount. YIKES! I treasure them and they have saved my life!

My Dr said the wall of bladder lining is thinner in IC patients. Diet is important. No cranberry juice! When I didn't know what I had, I thought infection drink cranberry juice. WORSE! Horrible distention, bloating and pain. I felt like going every 30 seconds. I cut out carbonated drinks, orange juice, high citrus foods, hot foods, spicy foods, blueberries and such.even those sour gummies can set me off. I drink one cup coffee a day, but not when I have flare up. I do eat these foods once in a while, but really watch it. I cannot take NSAIDS either. There is the distention treatment. But I have avoided that. You have to be hospitialized. They blow the bladder up with water, and release it in bits. Thank God it is done under anesthetic. It is painfull, so the Dr said...outpatient treatment and under anesthesia.

hearts4me

I wanted to cry when I read your post. Unless one has had this, you cannot know. I compare it to constant torture. The bladder feels like it is in spasms. Sometimes I felt it fluttering. The constant needing to go with pressure, but you don't really need to. OMG. The Parson's treatments helped me . However, it is interesting because all my flare ups have been in Fall and Winter. Drink tons of water. Can you get Urelle? Pyridium? Bless you!

Britbrit, my friend

If you have a flare up do you have some pills? Have you tried pyridium? You can get lower dose at drug store OTC.

The urologist says it is tough. They aren't quite sure how this happens, and it is tough to diagnose, because it can be many things. When you look at my bladder in the ultra sound cystoscopy film, it is whitish, and the veins show more than normal bladders.

I am interested as to what you all do during normal times. Do you follow "the diet"? What helps?

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Hearts4Me — Sun, 13 Apr 2014 02:19:37 GMT

Oh, I can't wait to have time to read all of these! So glad for the OP who started this thread! I have to do something for my son tonight, so no time now, but anxious to get to know each of your stories to compare to mine!

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

shoekitty — Sun, 13 Apr 2014 02:20:20 GMT

On 4/12/2014 missy mouse said: Yes I've been living with it for over20 years. It took 7 doctors before I got diagnosed. Go to the ICA website. There is also a ICN network. It tells you about the proper diet to follow.. The ICA network can help you find a dr. That specializes in IC. They also have a Facebook page which can be helpful. Right now I'm in a flare. Spring and Fall are the worst for flares. I just had my second treatment. Fingers crossed . Avoid all acidic food, alcohol, caffeine and many preservatives please check the websites. Best to you

Missy

I wish I had know all this years ago! You are right though. A good Dr that specializes in IC is critical. Follow diet helps so much! Thank you for letting me know about the ICN.

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

shoekitty — Sun, 13 Apr 2014 02:25:39 GMT

britbrit

The one food that sets me off really bad, is lemonade and lemon pie (especially store bought). Also, vitamin C.

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

missy mouse — Sun, 13 Apr 2014 02:30:25 GMT

Medications are important also. Amitriptyline and hydroxyzine are 2 of the most common Rx 's. Amitriptyline helps with the spasms, hydroxyzine because they believe mast cells from allergies are present. Most people with Ic have many allergies

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Snowpuppy — Sun, 13 Apr 2014 02:37:56 GMT

I've been diagnosed with IC within the last year.

I thought I had a UTI and kept meaning to make a dr's appt but I had a bottle of sparkling (carbonated) water that put me in such pain I doubled over, left work and went to the walk in clinic!

I had a very mild UTI which got treated and the PA I saw told me it was likely I had IC. He said the symptoms I had were far too severe for a mild UTI. My dr later confirmed IC. My dr said it happens more to women of peri/menopausal age because of lower estrogen.

When Lessman was on last weekend I was going to pick up his cranberry capsules. Wow! Good thing I did some reading on cranberry and IC before I spent the $ !!

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

sydsgma1 — Sun, 13 Apr 2014 02:48:06 GMT

I suffered with ic for 10'years before I agreed to very drastic surgery to take care of it. Now I would only recommend this as an end of the line cure. The ica was very helpful to me. I do feel for all of you with this horrible condition. It amazes me that the drugs mentioned are the ones I took 20 years ago. By the way, I live a very full life...travel extensively, sang semi professionally and Had a wonderful job before I retired. (((((Hugs to all ))))

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

tracy1122 — Sun, 13 Apr 2014 03:32:50 GMT

My daughter was finally diagnosed as having IC back when she was 17 years old. She is now 21. Over the years she has had nerve blockers to help her with the pain. She is having a major flare up now so bad that we received a phone call from her school to come and get her. Taking her to the Drs. Monday. After the last nerve blocker he said something about her needing surgery if the block does not work this time. He might of said the name of the surgery but I do not remember it off hand.

This has been a nightmare to deal with and unless you are one of the unfortunate ones to have this condition no one really knows how much this can and will effect your life.

Take care,

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

JudiL — Sun, 13 Apr 2014 03:34:46 GMT

Hello. Yes, I have had IC for 28 years - I was first diagnosed at a hospital when no doctors were diagnosing it. I've had a lot of help over the years with using herbals like uva ursi. I drink dandelion 'coffee'. I went on the IC diet and spent years on it. Then I went into remission about 20 years ago but I still have pain and sensitivity when I am severely stressed out or coming down with something. I have also learned that it is an autoimmune disease and I have 2 other ones, Hashimoto's and lyme. It all is apparently due to me having celiac disease and how eating gluten over 55 years of my life took a terrible toll.

Even if you don't have celiac, it is very beneficial to avoid gluten. I am doing the Autoimmune Protocol diet. Look it up. It works when you follow it, but it is hard. I cheat too much!

Good luck.

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Cardamom — Sun, 13 Apr 2014 03:45:30 GMT

I cured myself of IC!!!! Yes, I did . I also have Vulvadynia which is actually worse and flairs up my IC. I believe Vulvadynia is the underlying cause of my IC. I battled flairs for years and years. I finally had one big one for about a year that would not go away. I went to all sorts of specialists. I learned from Google about OXALATES. I avoid them like the plague now and I am out of any kind of flair up. When I cut out oxalates (as much as possible) I was out of pain in 2 days! Not one specialist mentioned oxalates. A low oxalate diet is recommended for those with Vulvadynia.

I am not even on the IC diet anymore. I am enjoying all the foods I once did, like coffee. Prior to this diet I tried all the diets...gluten free, IC diet, no dairy, no acids and I tried all the ic meds like Elmiron, Amatriptaline, muscle relaxers, countless herbal pills to no avail. I don't know if it will be a cure for you but it is worth a try so I'd look into that. Good luck!

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Britbrit13 — Sun, 13 Apr 2014 06:59:58 GMT

I'm so excited to see so many posting, I am having a very hard night ill write tomorrow.

Hug's to all, Brittany

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Hearts4Me — Sun, 13 Apr 2014 12:30:11 GMT

Good morning all...even though I was up 'peeing' all night - ugh. It's so awesome that Britbrit started this! I know I said that before, too! And, to see Shoekitty on here sharing our pain is amazing...I read your general posts all the time!! Who would've thought we shared the IC nightmare...

Curious as to whether anyone has had the bladder instillations (catheter) using that horrible smelling DMSO?? I had it twice years ago, and it was a true miracle for me. My current urologist didn't use it in January for my instillations, and I got zero relief from her drug mixture. I had 6 straight weeks of instillations with NO relief.

As Shoekitty said, those Urelle pills are so $$$$$$$$$$$ -- I didn't even get my script filled for them. Nutso cost even with my insurance. Don't know what to do.

I always describe IC as feeling as though you have BenGay cream spread all thru your bladder...make sense to anyone??

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

Cardamom — Sun, 13 Apr 2014 13:54:54 GMT

Well, I guess I didn't entirely cure myself. I still get up a couple times a night.

My IC syptoms are pressure on the bladder and constant need to pee. There were times I was going 5 times an hour. Also I would only be able to void small amounts and it would burn and hurt a lot!!

My vulvadynia symptoms were feeling like I was peeing shards of glass and the stabbing pains you know where!

I was never diagnosed for vulvadynia by a doctor. I believe I have it because as soon as I stared the diet for vulvadynia my problems went away. I am sure I know more about this than any of the doctors I saw.

I realize the low oxalate diet may not cure everyone but I am sure everyone posting has already tried everything. I normally don't share such personal information but if I can help one person get out of the he11 of IC I would be so happy. I know I am so lucky. It took 20 years but I have escaped it! I am fairly newly pain free. I just started the low oxalate back in Sept. I've been pain free since then.

Re: Do any of you battle with Interstitial Cystitis‎, IC and if so how do you handle it??

forrestwolf — Sun, 13 Apr 2014 16:27:11 GMT

My mom dealt with this issue with a lot of her patients (Babies-GYN), and I myself went thru a bout for months, until I came up with the solution to my problems, and I have not had a bout in about 5 years.......... She would throw in natural choices, along with drug choices....I just finished reading the book The Healing Powers of Vinegar, for several different reasons, and it is recommended to treat IC........which I alredy knew.......and fermented foods are another good choice to make.......Here is the book........

IC is usually caused by a Candida, not a bacteria........vinegar will kill candida, and you can add to bath water for added assistance.......and garlic will also kill candida, and mom used to tell her patients to us a garlic clove, peeled, and "inserted" you can guess where, and leave for a bit........She would also prescribe the drug Levsin, very cheap, very old, to help stop the spasms in the bladder, and you can use either drops under the tongue, or the little pill under the tongue........it was a major help to me...........

I do feel for you all..........

http://www.naturalnews.com/041073_interstitial_cystitis_candida_bladder.html#