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Discussion Starter #1
Anyone have this? I just got diagnosed with this yesterday :(:(:(

I have to completely change my diet for 2 months to see if it helps I basically cannot eat anything anymore! And then I have a follow up appointment in October to discuss medication.

Kill me now!
 

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LS and Theresa both have this. They are strong girls. I'm sure they can give you emotional support and advice for dealing with the disease.

However, I am so sorry that you were diagnosed with this. I read up on it after LS told us she had it. It sounds pretty crappy. :( Hang in there. We're all here as support when you need it.
 

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Thanks so much Caitlin I will await their replies and advice *sigh I had never even heard of it before yesterday I thought I just had a uti the diet restrictions are what is a bummer I can deal with the pain as I have been since September with no answers until now.

I'm going to miss my yogurt in the mornings and fruit I'm allergic to eggs so I have barley any options for breakfast foods now

Sitting here at work starving lol it said oatmeal should be ok but that doesn't fill me up :(
 

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My moms best friend has this. I am so sorry. It is truly a miserable disease. But please keep your head up- don't let the IC win! You are a strong woman and you can handle this.


Sent from my iPhone using PG Free
 

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i love oatmeal . thats like my favorite thing to eat for breakfast. my favorite is the kind you cook yourself for 5 minutes on the stove. i dont like the instant kind. and i love the steelcut oatmeal or the irish oatmeal better than the quaker oats.
 

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i love oatmeal . thats like my favorite thing to eat for breakfast. my favorite is the kind you cook yourself for 5 minutes on the stove. i dont like the instant kind. and i love the steelcut oatmeal or the irish oatmeal better than the quaker oats.
Oooh, me too. I love the steel cut oats. You can cook them with milk or even a little cream too for a yummy, creamy taste. Add a little sugar and cinnamon and that's YUM! I don't think oatmeal and milk are diet restrictions with the disease, are they?
 

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Discussion Starter #7
i love oatmeal . thats like my favorite thing to eat for breakfast. my favorite is the kind you cook yourself for 5 minutes on the stove. i dont like the instant kind. and i love the steelcut oatmeal or the irish oatmeal better than the quaker oats.
I'm guilty for eating the instant kind I love the banana nut one! I used to eat the cranberry one too but I guess I can't since I can't have cranberries :( wahhhhh

The worst is no pickles I literally will die without pickles

I don't like bland tasting things I can't eat most spices or condiments so I don't know what I'll do.

I hope someone can suggest things I've been researching endlessly since yesterday afternoon
 

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What about oatmeal with milk, bananas, and blueberries? That sounds really good. I want that now, lol. Or better yet, try it with some almond milk?
 

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My oatmeal has bananas and almonds in it but I eat a lot usually and that does not even mask my hunger lol

I caved and had a few cherries some sites say they can be ok some say they're on the no list guess I'll have to experiment a lot and see what works and what doesn't.

I'm already under weight so I don't know what this new diet is going to do to me!
 

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Discussion Starter #11
My usual work breakfast is toast or a bagel with peanut butter, 3 yogurts activia, cottage cheese, and then some sort of fruit and occasionally bacon.

I cannot have the yogurt or peanut butter anymore and the toast said homemade breads we have a bread maker so I'll need to make some and also we occasionally make our own peanut butter which I'll have to start doing again since it said organic is ok. I can't have the fruit anymore either it said to try pears or blueberries
 

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I am so sorry you have this I don't wish it upon anyone, Will they be doing Remso or DMSO treatments? if so either get a RX for a urinary trac analgesic or they have over the counter called cystix not sure spelling?? at least 1 hour before treatment. It will help a lot. with out it it very bad. sorry don't want to scare you just want to help you avid all pain as we can. Don't eat anything with ACID in it as it makes bladder very mad like a bomb to our bladders and urinary trac.. Ic is like ulcer in the bladder and that acid burns it. The treatment come through your pours so gives off bad order for few days, people away stay away from me then. My husband say it smells like clam juice but lots people say it smells like garlic. Fells free to pm me with any questions at all. What medication will you be on? There are lots of webs site and suport groups and on FB too. Here a good one Interstitial Cystitis, IC, Overactive Bladder, OAB, Bladder Pain, Pelvic Floor, PFD, Urgency, Frequency, Hypersensitive Bladder, Chronic Pelvic Pain, Hunner's Ulcers, Ketamine, Network, Association
 

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Oh, wow, that is a tough one! I love yogurt so I sympathize with you on that especially! It is protein that helps keep you full so I see why you are hungry! Do you like any type of nuts and are they on the recommended food list? I like nuts in my oatmeal. What about protein shakes? You can put them in the blender with ice. Maybe LS or Theresa will have some suggestions ... I wish I could help!
 

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Discussion Starter #14
I am so sorry you have this I don't wish it upon anyone, Will they be doing Remso or DMSO treatments? if so either get a RX for a urinary trac analgesic or they have over the counter called cystix not sure spelling?? at least 1 hour before treatment. It will help a lot. with out it it very bad. sorry don't want to scare you just want to help you avid all pain as we can. Don't eat anything with ACID in it as it makes bladder very mad like a bomb to our bladders and urinary trac.. Ic is like ulcer in the bladder and that acid burns it. The treatment come through your pours so gives off bad order for few days, people away stay away from me then. My husband say it smells like clam juice but lots people say it smells like garlic. Fells free to pm me with any questions at all. What medication will you be on? There are lots of webs site and suport groups and on FB too. Here a good one Interstitial Cystitis, IC, Overactive Bladder, OAB, Bladder Pain, Pelvic Floor, PFD, Urgency, Frequency, Hypersensitive Bladder, Chronic Pelvic Pain, Hunner's Ulcers, Ketamine, Network, Association

He didn't put me on any medication yet he said to try altering t diet for 2 months thn in October we discuss it further :(

I've been fighting my family doctor for this appointment for 11 months it's been a nightmare. They just think you're exaggerating the pain and bc my urine was coming up negative for infection I was brushed off a lot.

I brought veggies and steak for lunch but I didn't realize I couldn't have soya sauce that is what I marinated with thinking it would be an alternative to BBQ sauce

Any suggestions on sauces or spices I can use?

I drank chocolate milk last night it was too tempting so now I'm in pain all day already so I'm not going to know if the soya sauce will trigger anything.
 

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I can't stay full on regular oatmeal, but fermented oatmeal leaves me feeling fuller longer and also not so sleep. I suggest looking into fermented oatmeal, it's very tasty and has lots of healthy bacteria. Just put 2 cups oatmeal with 2 cups warm water mixed with a tablespoon of yogurt. Cover, let sit overnight on the counter, then cook in the morning, adding lots of water as you go. I usually mix cinnamon, stevia, and peanut butter in with mine :)
 

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He didn't put me on any medication yet he said to try altering t diet for 2 months thn in October we discuss it further :(

I've been fighting my family doctor for this appointment for 11 months it's been a nightmare. They just think you're exaggerating the pain and bc my urine was coming up negative for infection I was brushed off a lot.

I brought veggies and steak for lunch but I didn't realize I couldn't have soya sauce that is what I marinated with thinking it would be an alternative to BBQ sauce

Any suggestions on sauces or spices I can use?

I drank chocolate milk last night it was too tempting so now I'm in pain all day already so I'm not going to know if the soya sauce will trigger anything.
Not sure if it's allowed, but Frank's Red Hot is a great marinade. It doesn't make it spicy, it just flavors the meat like hot wings.
 

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You really need a 2nd opinion then. You need treatment. Also are you going to a urologist you should be. Any amount of acid is a huge bomb so avoid it all until you get under control. It been 7 year and I can now eat pasta sauce I missed it so much but when I do I take a cystic pill over counter.
 

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Discussion Starter #19
I can't stay full on regular oatmeal, but fermented oatmeal leaves me feeling fuller longer and also not so sleep. I suggest looking into fermented oatmeal, it's very tasty and has lots of healthy bacteria. Just put 2 cups oatmeal with 2 cups warm water mixed with a tablespoon of yogurt. Cover, let sit overnight on the counter, then cook in the morning, adding lots of water as you go. I usually mix cinnamon, stevia, and peanut butter in with mine :)
I can't have yogurt or peanut butter definitely not hot sauce my food choices are scarce literally
 

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You really need a 2nd opinion then. You need treatment. Also are you going to a urologist you should be. Any amount of acid is a huge bomb so avoid it all until you get under control. It been 7 year and I can now eat pasta sauce I missed it so much but when I do I take a cystic pill over counter.
I went to a gynecologist they took a video of my bladder and showed me on the screen it was inflamed and there were closed blisters. I think they want to make sure for sure before trying the medication I don't know he gave me a pamphlet website And have me booked back in October. They catheterized me Took a sterile urine sample which came back negative for infection or blood.

Which pill is it? We don't have most of them in Canada :( I used to get those AZO pills when traveling and bring them back
 
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