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Valued Contributor
Posts: 803
Registered: ‎07-12-2011

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

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

Frequent Contributor
Posts: 112
Registered: ‎03-10-2010

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

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!

Valued Contributor
Posts: 803
Registered: ‎07-12-2011

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

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 Smiley Sad

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 Smiley Happy I know he love's me Smiley Happy) 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

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Posts: 201
Registered: ‎03-29-2014

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

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
Contributor
Posts: 70
Registered: ‎03-10-2010

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

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
Contributor
Posts: 70
Registered: ‎03-10-2010

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

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
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Posts: 10,820
Registered: ‎03-10-2010

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

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?

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Posts: 112
Registered: ‎03-10-2010

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

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!

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Posts: 10,820
Registered: ‎03-10-2010

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

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.

Honored Contributor
Posts: 10,820
Registered: ‎03-10-2010

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

britbrit

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