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  • Hypnogal
    replied
    Oh, I found the Earth Balance Soy Free Margarine..... all good until the last ingredient. No go. I flare HUGE from any amount of Annato (coloring) / even naturally extracted. -------------- darn. >>> Ingredients: Oil Blend (Palm Fruit, Canola, Safflower, Flax, and Olive Oils), Water, contains less than 2% of Salt, Natural Flavort, Pea Protein, Sunflower Lecithin, Lactic Acid (Non-Dairy), and Naturally Extracted Annatto (Color). <<< CAUTION

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  • icshorty
    replied
    Re: Support and advice please?

    Bladderella-I've googled Good Seasons Blueberry Tea to no avail. Do you mean Celestial Seasonings brand? (If so,boo hoo,I can't touch that blueberry tea as some of the ingredients flare me) thanks,shorty.

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  • stanncie
    replied
    Re: Support and advice please?

    Nissan, I know things don't look good right now but I promise you that you will most likely find a treatment that will work for you. I was diagnosed at your age actually and I'm now 40 and feeling good. Like others have said surgery is a last resort and even then some people still experience pain. Any surgery should be carefully considered since it is serious. I suggest you do the diet strictly for at least 3 months, if you still have symptoms there are oral medicines to try and then installations, etc.

    There are guidelines for treatment that tell you the order of treatments to try. If you go the front page and click on treatments you can read about them.

    As far as margarine, is there a reason you don't eat butter? To me it's tastier and usually does not have any additives. Skip the canned goods for now, like another post said. Try to eat everything natural and whole. No boxes, no cans , no containers. Your shopping cart should be full of veggies, pieces of meat, chicken ,fish and permitted fruits, grains, etc. Most of us can tolerate oats but again don't buy the prepackaged ones just oats that's it.

    If you are buying something prepackaged read the ingredients like a hawk. There are a so many names for soy and also for msg!! You can find lists of these on the internet. If you don't know what an ingredient is then don't put it into your body. I know this seems overwhelming at first but like anything it gets easier as time goes by. When you start to feel better you can try to experiment and see if you tolerate foods on the maybe list and some prepackaged foods. I know what boxed cereal I can eat, what commercial bread etc. This will come but you have to be patient and hang in there.

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  • Mothergoose
    replied
    Re: Support and advice please?

    From what you have said there are a lot of other things for you to try. Read about what others are doing and figure what you would like to try next, and remember that everything takes time to work.

    Leave a comment:


  • Nissaann
    replied
    Re: Support and advice please?

    Yeah I've read the risks and that it sometimes doesn't work for every body I just wanted to jump to it cause it's a lot of trial and error which means it's an expensive fix. I should probably stop letting my emotions cloud my judgement though and just try other things. Ive tried elmiron and whatever the treatment is that fills your bladder up with liquid. I can never remember the name but it made me feel worse. I do follow the IC diet very strictly as I only eat 3 meals. And yeah after calming down I've realized that much like good and bad reviews on products people normally say bad things before they say good things. Like you always will see a bunch of people suffering but the people that are ok now forget to come back with their success stories (some of course) I can't wait till I feel better.

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  • Mothergoose
    replied
    Re: Support and advice please?

    First you need to know this will not be your life for ever.

    Surgery is a very last resort, even then it does not get rid of IC symptoms.

    What have you tried, what were your expirence's.

    Do you follow the diet?

    There are tons of people that have been in your place that don't come here any more b/c they no longer need too.

    You may never get cured, but you can get to the point of living a normal life.

    Leave a comment:


  • Bladderella
    replied
    Re: Support and advice please?

    I used Blue Diamond Almond Breeze (unsweetened). It tasted a lot like milk to me. Some people prefer Rice milk. You'll have to just try it to see if you like it. You will find that much of your IC diet will be trial and error. What may not irritate some people may irritate you. Unfortunately, you just have no way to know until you try certain things, but it's the only way to learn. It's really important to read labels of every food item BEFORE you buy and to become familiar with the ingredients known to irritate bladders and then to avoid buying those products. It may seem daunting at first, but the more you do it, the easier it gets.

    What helps me is to not give in and to just keep going, to be positive, always learning & sharing, to live my life the best way I can, and to count my blessings. It became my daily mission to learn as much as I could about IC, to scour the internet for recipes, to plan my meals, shop for the right foods, and then try new recipes in my kitchen. It actually became fun to do try and make things in a new way. I spent a lot of time in this forum reading and learning what others have done to relieve their condition and I was willing to try some of them. Since there is no one solution to fix IC, and there are dozens and dozens of things to try, I wanted to be open to do all that I could to help myself. Some things helped and some didn't but I was never willing to give up.

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  • pennyjosh
    replied
    Re: Support and advice please?

    I found out I had IC and Hunners Ulcers in 2012. Dr said I needed to stay away from animal fat, dairy, processed food. artificial sugar, drink only spring water (Ozarka)..use almond butter, I drink rice dream milk, I read a lot of labels be careful of carrageenan in milk.....Oh I have to stay away from gluten which is hard...I use a lot of pamelas products I find them at a whole food store. I use olive oil and coconut oil. I have Lower Pelvic Floor Disfunction.........and yes stress can set off IC. be careful of Iceburg lettace they dip it in bleach also baby carrots. I buy gluten free rice chexs , gluten free Bisquik, .........my Uro told me to learn all I can on the net....ha.....just a few things I do....this web site is very informative.....I love to watch Jill Osborns videos.......and a lot of friends on here with good info...everyone is different tho..I use Lactaid for upset tummy , chewable...Also be care of lecithin in cooking sprays its also in eggs......it bothered me.....

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  • Nissaann
    replied
    Re: Support and advice please?

    It is so frustrating and expensive! I don't know how all of you do it. Do you know if there's a place to get help paying for such things? Like medical bills and what not? I usually have del Monte canned veggies and that's probably why I feel like my disease is getting worse! I didn't know it had those things. That salad sounds oh so good too. I have always been a fan if salad, used to eat it every day with ranch. I thought I had to cut it out completely cause of the no dressing rule but all those ingredients sound like its full of taste. And I have problems managing my stress, always have. I need to work in it definitely but with my anxiety if feels impossible to not worry about little things. I have thoughts just pop into my head out of no where and it freaks me out. Thank you for the kind words though. In a way I'm glad thay I'm not alone but I wish I could somehow end the suffering for all of us. Hugs (:

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  • Nissaann
    replied
    Re: Support and advice please?

    I haven't really tried much fish but I've tried shrimp, I've never been a fan of any fish but I need to learn how to like it I suppose. I also always get pure maple syrup for my pancakes cause I've done a little research on IC food and was so relieved I could have that. I've never tried almond milk though, what does it taste like And is there a specific brand I should get? Blueberry tea sounds good So I definitely need to try that! We're going grocery shopping tomorrow cause nothing is in the house and now im a little relieved to know there s a recipe section in this forum. I hope everything taste delicious (: thank you for the response!

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  • icshorty
    replied
    Re: Support and advice please?

    I think we have all been in the "I can't possibly do this for the rest of my life" place over this illness-it is a life changer for sure. And finding your best combination of treatments is frustrating and baffling at times. And as far as the IC diet goes-enjoy fresh (or frozen) vegetables. They are possibly more IC safe,since some canned vegetables have added salt. I drink "Teecinno" a ground coffee like beverage that you prepare like coffee.You can drink it cold too. We have plain oven baked salmon once a week with roasted sweet potatoes or baked sweet potato fries - yum! I can eat turkey lunch meat or we bake turkey.I only buy the kind with no added broth or additives of any kind. We also make a yummy lentil soup with red bell peppers,celery and added zucchini/kale etc and IC friendly spices. There is a convenient IC diet app to help you make safe choices at the grocery store or eating out. Oh, we've been making green salads with celery,cucumbers,sugar snap peas,diced red bell peppers,cooked green beans and diced hard boiled eggs. I can tolerate "Marie's Ranch Dressing" in small amounts too.And guess what! For many ICers stress is a trigger-kind of a vicious cycle going there at the beginning while you are getting the hang of it and being angry/depressed at the same time. We are here for you. You will learn how to manage your IC and live well. Be kind to yourself. Hugs,shorty

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  • Bladderella
    replied
    Re: Support and advice please?

    Are you able to eat fish, i.e., Talapia, cod, salmon, or white fish sauteed in a little olive oil would add some variety. Also, Earth Balance makes a soy-free margarine/butter that is quite good. It's in a square, orange container. Also make sure to use pure maple syrup on your pancakes. It's a little pricey, but safer on your bladder. Have you tried Almond Milk? If you're tired of water, try an herbal tea over ice. I love iced blueberry tea (Good Seasons). It almost tastes like Kool-Aid. Have you looked at the Recipe section in this forum? There are tons of IC-friendly recipes there that you can try. I found so many that I'd cook up and my husband ate them right along with me and most of them he found to be really delicious. It was very strange at first, not being able to eat the way I used to. But once I began learning what I could and couldn't eat, and then finding recipes that accommodated my restrictions, I began to enjoy eating and cooking.

    Leave a comment:


  • Nissaann
    replied
    Re: Support and advice please?

    Yes I see a lot of people on here that have had it for years and I just don't see myself being ok with it like them. I cry myself to sleep every night but maybe you're right. Maybe I'll get the treatment that I need to at least manage it better. It's just so scary because I don't know what my future holds and I'm scared it will get worse. I wish we had a cure.

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  • Songbird
    replied
    Re: Support and advice please?

    Oh my gosh Nissa, you are SO going to get better.
    It's hard in the beginning but someday you will look back upon this post and won't believe that you came from a dark place in your life to a "normal" life.
    There is help and hope. Most people on here are doing well and managing this illness and many who used to post here have moved on to living their lives and no longer need to visit the forum.
    Some of the other members who have been here longer and have more wisdom can speak to where you are and maybe other treatments you could be trying , or maybe getting to the bottom of what causes you to flare or what subtype of IC you have or even if you need pelvic floor rehab.
    But in no way, shape or form are you doomed forever. You're going to get better!

    Leave a comment:


  • Nissaann
    started a topic Support and advice please?

    Support and advice please?

    Hello everyone, My name is Nissa and im new here. Im going to start off by saying this is going to be a long thread but please bare with me because i need help and support. I was diagnosed with IC in February 2017. Im still a newbie and this is where my problem lies i guess? I am very confused, lost, upset and a mix of a lot of different emotions. I am only 21 years old and i personally and honestly dont think i can handle dealing with this for the rest of my life. I am truly scared to death. Im currently taking 100mg elmiron 3x a day along with herbal teas, cats claw and marshmallow root pills. I tried taking CBD capsules because i heard MJ can help some people and its not helping whatsoever. In fact i think its causing more pain. I tried smoking and that was a BIG mistake, I freaked out so bad that i threw myself into a long lasting flare! I also follow the ic diet religiously and im so tired or eating the same thing over and over again. I eat chicken, hamburger meat and steak with canned vegetables every single night alternating between the three. I only eat one meal a day usually. Sometimes i eat pancakes when i feel up to it but the only margarine i found has soy in it so pancakes are saved for the "good" days. And oh my god i am so sick of drinking water!!! Ive tried pear juice and it sends me into a flare, Milk is okay i just feel nauseous when i drink it. Im not lactose intolerant it just grosses me out for some reason. Is it okay to drink strawberry milk?? Im sorry im complaining so much im just so frustrated! To top it off i got married in July and my husband and i bought a place at the end of January in a different state. Coming back home from looking at the house i felt like i had a UTI and it wouldnt go away so i went to the hospital and got diagnosed with IC. I was having the perfect life, i was living my fantasy and then WHAM! i got smacked right back into reality.I guess what im trying to say is...Where im going with all this rambling is... is this it? Is this what i have to look forward to for the rest of my life? I wouldnt say im suicidal because im not and would never work up the guts to end it. But, ive always been a worry wort. I have really bad anxiety and think of all the possible bad outcomes first. I never did thrilling things like get on the back of a crotch rocket and dodge through lanes of traffic going 120 mph type of stuff. But now im to the point where i dont care anymore.Like if i had the slightest chest pain or something id immediately go to the hospital in fear that im dying. I cant even please my husband anymore and were YOUNG! Hes going to leave me eventually i know it. He says he wont but what man can go 50 years without sex? Plus ive found myself being controlled by this disease no matter how positive i try to be. I cant go anywhere, scratch that i wont go anywhere in fear of not having easy access to a bathroom or being suddenly struck by pain.I used to be so full of life, i was a very adventurous soul wanting to go hiking, travel around the world, go on float trips etc. Now i just sit at home at watch law and order all day. I had dreams of becoming a forensic scientist. I enrolled in college and start in August in hopes that maybe one day ill be better. Is there something i can do? Ive been looking heavily into surgery because i feel like im all out of options. Not to mention i cant even keep a job and disability wont approve me plus i dont have health insurance cause tennessee only covers elderly and pregnant women! Can someone please for the love of god give me hope! I cant handle anymore negative things. I started this thread because ive looked through numerous other threads and seen a lot of people saying basically youre stuck like this forever. I dont wanna hear that you know? Id rather have false hope than none at all but then again the truth hurts. If you could give me positive feedback on your surgery that would be awesome or any other treatments you have tried. Or even just uplift my spirits that would help me greatly. Thank you so much and again i am so so sorry about being a negative nancy but please understand that my quality of life is low at the moment.
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