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  • Snowden1
    replied
    Thanks, Judy, that is interesting. I wonder if it is acidic? I still haven't tried it. Too scared.

    Cindi, You may want to try blueberries by themselves. I can't do them, but I can't do much. Just see for a few days if you are okay with them. Evaporated cane juice is just sugar that is not as acidic as refined sugar. I can actually have this.

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  • judy45
    replied
    I cannot take magnesium oxide, flared me like crazy. I usually take the citrate or stearate. Just remember we all are different

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  • cmclien
    replied
    Unfortunately an hour after I had the greek yogurt and blueberries I had discomfort. I have mild IC so I never really call it pain but it hurts to sit like when your bladder is SO full you feel like it could pop, of course it isn't that full when I have this pain. Once I go, the pain is gone for about an hour though I've had periods where it came back within 10 minutes. I had no pain from last night up until lunch today. I'm really trying to look at the list when I eat and breakfast was an egg, bagel thin, avocado, colby jack cheese. Blueberries are soothing to the bladder so I don't think that would have been the problem. There were no artificial ingredients or anything though it had dehydrated cane juice in it, not sure where that stands need to look at the list again. I could try the plain unsweetened but I'd have to put sugar in it or something! I'll try that and then I give up and will have to find something besides yogurt to eat.
    I have no problems with cheese and eat tons of it, colby jack, provolone, mozzarella, string cheese. When I'm not having symptoms which lately seems like never I can even eat pepperjack cheese. I absolutely crave spicy food and its hard to not eat it right now...no salsa etc.

    I can understand your worries about your daughter(s). My mother also has it though I think hers is truly OAB and shes going to be starting the interstim trial soon. I don't know what if any connection there might be hereditary wise. I think its good you are taking her to a uro though. My daughter who is now 12 had a few uti's right in a row about 4 years ago but luckily swiching her from baths to showers solved the problem!

    My IC - It kinda comes and goes, never fully gone but less frequency/urgency. I think it started when I was in my mid 20's and got a UTI or two and then they never felt gone so at one point I was on daily macrobid for months even though I still always kinda felt like I had to go. Seems like the symptoms kinda would go away for awhile and then come back but I had alternating IBS C and D at the time and maybe that effected it. After my second child was born I had lots of symptoms and finally saw a urologist when we lived in NY (we've moved around a bit). He basically blew me off because of my age even though I was in my late 30's then and it was a bad experience and I felt humiliated when I left his office. I had read about overactive bladder and wanted to be put on the meds which he would've done maybe if I had gone back to see him but I never did.
    Fast forward to the last 4 years or so, now the OAB meds are so popular my primary doc prescribed oxybutynin for me a few years ago and it really did help, especially with the spasms which started after my daughter was born. Finally I decided to go see the UG and get a "real" diagnosis. My cystoscopy wasn't very enlightening as my bladder looked ok so he calls it mild IC or OAB but he says OAB doesn't have pain and I have pain thus mild IC. I go back in a month or so and we'll see where the vesicare leaves me and the bladder training and if I still have the pain then he'll want to maybe do the instillations...

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  • Snowden1
    replied
    Hmm.. thanks Cindi for all the info. I saw that your IC came on gradually over the years. How old were you when you started experiencing symptoms. I am worried about my daughter who is having recurring UTI's now. I have made an apt to get her into a uro/gyn. She is 18 soon to be 19 in March. I hate to think of either of my daughter's having this. I used to worry about teen-age pregnancies, but now that would be so much easier to handle than this. She has been on four different antibiotics within the last couple of months.

    I bought one of those light things for her. She is away at college. She thinks it helps as well.

    So, is the Greek yogurt working better for you? Can you eat mozzarella cheese? Or any other's? I am so glad you may have found something diet wise that can help stop some of your discomfort.

    Leave a comment:


  • cmclien
    replied
    MG and Teresa,
    I picked up some Greek vanilla yogurt this morning to try. I was shocked yesterday when I tried regular "light" yogurt yesterday after a few days of not eating it and an hour later I was very uncomfortable. I have been eating it every day for a couple months, probably as long as I have been feeling bad.......duh! I did wonder once or twice about it but I love it so much I quickly forgot about it.

    Re: sunbox - hope it does you good, I have the desktop kind which is nice. I just eat and read a magazine by it every morning- you have to use it in the morning. Also a tip: start with 10 minutes or so and work up from there. I am one of the rare people who is very sensitive to the light and more then 15 minutes by it makes me feel like I have had too much caffeine lol. So I only need 15 minutes but most people need about 30 minutes a day. My husband definitely has seen the difference it has made for me.

    Re: instillations - I actually haven't had one yet. I really like my urogynecologist, great bedside manner which is so important, and he'll work with me! He had just said he gets 85 -90% cure rate with them so he recommends them over drugs which he hasn't had too much success with.

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  • Snowden1
    replied
    MG,
    Thanks for the advice. How are you doing these days? Are you feeling better? I haven't talked to you in awhile.

    Leave a comment:


  • Mothergoose
    replied
    Hi Snowden1

    Why don't you start with plain greek yogart first the more things added to it the more likely it is going to bother you.

    I can eat greek nonfat yogart, it only has milk and cultures in it, no preservatives etc.

    If I want to flavor it I add a few berries to it, or I blenderize the berries and stir them in, you can also add a bit of sugar if you are used to the sweet yogarts (yogart actually has a lot of sugar in it unless you buy ones which have artifical sugar, which also can bother our bladders).

    Sometimes I blenderize 1 1/2 cups of berries add a bit of sugar or splenda in my case as I can eat it and I have to follow the diebetic diet too. I put it in a jar and add to yogart as needed, or on toast for Jam, it only takes a few mins to make it, you know what you are eatting and keeps in the fridge for about a week, it starts to smell like alcohol once it is fermenting.

    Also have you tried white chocolet, I can eat and drink this, it makes good hot choc, just read the lables first, my husband bought me some once that was all artifical ingredence not good, but you can find real stuff in powder form in stores, maybe not all grocery stores but specility stores, other's can probably tell where to buy it.

    good luck MG

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  • Snowden1
    replied
    Thank so much for the tea tip. I may be able to drink that:woohoo:. Also, didn't know about carob. I have read the labels on carob chips and know I can't have those, but wasn't sure about the powder. I think I can have that if it doesn't hurt. I could add it to rice milk for a treat - thanks again! I'm going to try that too.

    Sorry, about your headache. I remember when my daughter went off coffee she said she had headaches too.

    Oh, potassium - it hurts me, alot. My doctor ran a blood test and found I was low in it. I took one pill - never again. I should have listened to my instincts on that one. I started eating bits of avacodo - yuck - I hate them. Then I tried eating more almonds. Acorn squash has it, but that causes me to have diarrhea (tmi). Zucchini is usually very ic friendly and it has some. I can't do sweet potatoes, but lentils are good. I have been eating these lately. I can't do lima beans, but I think the lentils are okay. The ones I have are organic in the can and I mix them with rice. It reminds me of a semi - burritto.

    I think I am going to buy one of those sun boxes. This weather goes on so long and maybe it will help with the depression.

    I have tried several different kinds of instillations. I can do them at home. What type does your uro recommend? Some uro's I have been to only do a standard recipe and some do many different kinds. Do you have a good uro there? One of my best friends lives around your area and she had to have back surgery. She did very well and said that they have excellent doctors around her area.

    Leave a comment:


  • cmclien
    replied
    I'm glad a nutritionist was able to help you, maybe in the future....for now I'm just going with the list my UG gave me and will fumble my way through!
    Figured out today light yogurt is definitely a problem, will try the vanilla greek yogurt this week.
    My issue with potatoes is they are about 3 servings of carbs all by themselves. I'd rather split out my servings over the day!
    Thanks all for your input on the supplements and everything.

    Leave a comment:


  • bob04951
    replied
    You may want to consult a nutritionist, or a holistic type nutritionist, who will surely start you from scratch with foods you can tolerate and start adding back one thing at a time. Why not potatoes? Yes there are carbs, but they are nutritious. We are on low carb as well, but a potato once or twice a week is not going to throw that off too much. You really might want to speak with a professional, we saw one a few months back, she charged us $60 for an hour consultation, with a pre-telephone consultation and a follow up tele-consult. Not a bad deal, and she was helpful. She was kinda holistic but not overly so. You have to find one who knows what IC is and all of your allergies/problems before you see one so they have all their ducks in a row when you have your face to face. Sometimes putting it on paper or in an e-mail before your appt really helps. Wish you luck in your diet pursuits, you guys have a lot of problems to deal with and sometimes doing it by yourself is difficult and frustrating, and sometimes trying "new" stuff can do more harm than good. Be careful, and take care. Jill, wife of Bb

    Leave a comment:


  • ICNDonna
    replied
    The only comment I have about potassium is that it's essential to maintain health. Did a blood test determine you have a deficiency in it? If not, it shouldn't be necessary to take the supplement if you are on a balanced diet. There are many foods rich in potassium --- potatoes are my favorite.

    Donna

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  • cmclien
    replied
    I think because I bought it on this web site I can say its Davidsons French Vanilla Tea with Honey. Its quite good and I do get sick of only drinking the peppermint and chamomile mixture. I like peppermint tea but I need a variety.
    Yes carob is gluten free, it comes from ground seeds or pods from a carob tree. I did read sometimes carob powder has wheat flour in it and does not have to be listed as an ingredient because it is considered GRAS.
    I have had a terrible headache the last 24 hours I think from going caffeine free, hope it goes away soon.
    So I'll take your advice and MG's and cut way back on the supplements. I'll keep the vit D, magnesium, potassium (I forgot to mention I've been taking potassium...if you have any thoughts), flax, aloe vera and cistoprotek. Maybe I should pick up some calcium carbonate too.

    The sunbox has worked GREAT for me. This is my second winter using it. My husband thought I had SAD when we lived in Seattle for years and in the winter in Chicago. Spring would come and it was like I would wake up and was so energetic and just felt more like "me". Before I tried the sunbox I would not really act depressed or down as much as I got real negative which I guess is how feeling down comes out in me. I would feel like I just couldn't make it to spring. Since using the sunbox I don't feel that desperation or negativity, winter is just like the rest of the year except I can't walk outside!

    I am sorry for your restricted diet and ongoing pain. I don't know your story but have you tried the instillations? I only ask because my UG says they help about 90% of his patients to the point where they are "cured" for long periods of time. He doesn't really think any of the other therapies work well enough (oral medicines like anti-depressants, antihistamines, elmiron etc). He just says he doesn't see alot of success with anything but the instillations.

    Leave a comment:


  • Snowden1
    replied
    Hi Cindi,

    Yes, I think MG is right about cutting it all out and starting over. I didn't think the diet was causing pain until I did this and wow, I did find out that Vit C and B were horrible for me - I reacted within an hour. Some things take about 4 to 6 hours for me, but cream cheese took a lot longer. I thought I was okay and I may have been with a small amount at a time. But, as soon as I started eating it everyday, I couldn't figure out what was going on. Then I didn't have it for awhile and realized that was it. I just wonder if many people who don't think they are diet sensitive really know because they have not eliminated everything and started from the bottom up. I know a couple people who said that Vit C and/or orange juice didn't change their symptoms. I am doubled over in horrible pain if I try those, so if it doesn't change the pain levels maybe those people are not diet sensitive. Just my weird theory.

    I can't have barley, (gluten) but, I might be able to have the vanilla tea you drink. Could you PM me to let me know where you get it and what the name of it is? Does carob have barley? Do you know if it is gluten free. I was reading about celiac disease today and the article said more people are getting it and that it is an autoimmune response in your intestines. I NEVER had a problem with gluten or dairy until almost a year after getting IC. I think for me there are many autoimmune issues going on now. I don't understand how I coud be pretty healthy to this. Rrrr... I am seriously depressed about what I have to eat, etc. I just don't feel like me anymore. I thought I could figure this out and someday get back to work - or at least function well daily. I just seem to be getting worse. I hear of people who have had this for years and their symptoms have stayed the same. I don't understand why mine have just kept getting worse and worse so quickly.

    I wouldn't stop the IC Aloe Vera. I would keep taking that and the Cystoprotek unless you are still having symptoms then I would drop one at at time and add them back slowly.

    Yes, I want to get one of those lights for depression too. For the last several years we have been in climates where it was snowing and cold most of the year. How is your light working for you?

    Leave a comment:


  • cmclien
    replied
    Originally posted by Snowden1 View Post
    Hi Cindi,
    What is in your Vanilla Tea? Are you taking IC safe Aloe Vera - there are a few on the market? One is advertised on this website.
    My vanilla tea is organic dried honey, organic chamomile, organic carob, natural flavor and organic rooibos.
    I drink chamomile combined with peppermint tea all the time and it they do not bother me at all.
    Today I had the Roastaroma instead of the coffee it is: roasted barley, roasted chicory, roasted carob, cinnamon, allspice and chinese star anise. We'll see if it bothers me, if it does its probably from the cinnamon.

    The aloe vera I take is the Desert Harvest one shown on this web site.

    Good luck with your new supplements.

    Leave a comment:


  • cmclien
    replied
    Originally posted by Mothergoose View Post
    A couple of things the only way to know for sure if something is bothering you is to cut out everything that could possibly be the problem and then add items back in one at a time.
    I finally had a ha moments when I realized even thought I have been eating this item everyday it is causing me problems.

    I can now eat yogart in small amounts if it is greek nonfat, other yogarts bother me.


    MG
    I REALLY miss my yogurt and its only been 3 days! Its a staple in my diet which is fairly low carb, no potatoes for me! I eat about 100gm a day so its not super low. Bread is safe though so I ate a bit more yesterday in place of some other things.
    I've also been eating alot of black beans and vegetarian refried beans. They looked like they were on the ok list....

    Leave a comment:

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