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  • JBE3
    replied
    when i started the ic diet, i completely took out the 6 "main triggers" for two weeks. then, one by one, i'd try to reintroduce them into the diet. those main triggers are:
    1. citris fruit
    2. tomatoes or tomato products
    3. coffee
    4. artificial sweetners
    5. caffeine
    6. chocolate
    it turns out for me that ALL of them are pain triggers. but, that's not the case for everyone. so, you may be able to handle some things that others can't. unfortunately, we're all on our own journey, where pain triggers are concerned.

    the list in the patient handbook was SO helpful. and for me, eliminating the harshest foods/beverages was a good start. i've gotten to where i can pinpoint even preservatives that trigger my symptoms. it's been a little over nine months since i started the diet, and i couldn't say enough good things about it. it's been a lot of work trying to figure this stuff out, but it has also been a miracle for me and my family.

    i've also found that the less processed the food is, the better. whole foods and organics seem to be better for my ic bladder...

    well, good luck. i hope you can find your trigger foods and start feeling better very soon!

    warm regards,
    becky b
    Last edited by JBE3; 03-11-2007, 09:29 PM.

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  • sdg78
    replied
    Thanks!

    I don't have a lot of time in my day (three kids, full time job, new house to unpack, husband working and going to school - I'm sure a lot of you know how it is) and I just haven't really had a chance to read a lot out of the patient handbook. My goal for this weekend is to sit down and read it, but I want to thank you for the suggestions you gave. I have just felt so overwhelmed trying to find a place to start! I understand that just water is a bit ridiculous , but I just wanted to get my bladder calmed down so I'll be able to tell if something is irritating it. Hopefully the foods on the ok list doesn't upset my bladder. I don't know... I'm going to start this weekend and see how it goes. Thanks again for pointing me in the right direction!

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  • judyblue
    replied
    Water only may be a little too drastic, there are a number of foods that seem to be generally ok in IC. Look at the diet section in the patient handbook, and a good goal might be to stick with only foods in the "usually ok" column. You can get a balanced diet just from those foods. You'll know when you can start adding other foods.

    I would recommend going to just drinking water for your fluid intake for a couple of weeks. Just that can make a big difference. Good luck!

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  • ICNDonna
    replied
    Absolutely do not try going on a diet where all you ingest is water --- unless you have the approval and supervision of a physician.

    Have you read the diet section in the Patient Handbook? You'll find information there about which foods and drinks you need to avoid.

    Donna

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  • sdg78
    replied
    Ok... so I'm going to start the IC diet. I'm sitting here pondering how to get started. This all is very overwhelming and it's getting kind of hard to step back and look at everything that has been shoved into my brain these last couple of months. I am in flare all the time... I always feel the sensation to go to the bathroom. Sometimes the sensation is stronger than others, but it is always there. This makes me think that I am always putting chemicals into my body that my bladder is rebelling against. SO, I'm thinking maybe it would be a good idea for me to start by just going on a water diet (I know that sounds drastic, but I've had to do liquid diets before and survived, besides it is for the good of my bladder, right?!) until my bladder is calm enough for me to notice even when it slightly flares. Then I'll start adding foods back in a little at a time. I already track everything I put in my mouth because I've been trying to lose my post-pregnancy/post-breastfeeding pounds, so that's a step ahead of the game. So, when I have a flare, I'll go back, look at the possible culprits, and stop eating all of those foods until my bladder calms down again, and then add them back in individually until I flare. Does this sound right? Is this a good way to do this? I'm seriously at a lose as to another way of doing this. Any other suggestions?

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  • judyblue
    replied
    I agree with those who say to try the diet. Even if you take the Elmiron, it can take months and months before you get any significant relief. In the meantime, try getting the trigger foods out of your diet. I was amazed, and saddened, to find out some of the foods that were bothering me. But once I got my bladder calmed down, I felt so much better.

    And yes, I did have frequency/urgency just about all the time before I went on the diet. Even after completely going on the diet I was going to the bathroom 18-24 times a day.

    You say the water is making you go to the bathroom alot. I was shocked to find out that I could flare from water! My issue was acidity, others have problems with the chemicals in the water. Trial and error helped me to find out I did better with spring water with a higher ph than tap water or many other bottled waters.

    Just keep trying to learn all you can. There is a lot to know to get to a place with relief. Good luck!

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  • ICLori
    replied
    Hi, Sharon! You've come to the right place! This board has been extremely helpful to me over the years, and I know others feel the same way too.

    It sounds to me like you might very well have IC, too. I don't know enough about overactive bladder so I will defer to your doctor on that one.

    Please, please, please don't let statistics or the possibility of side effects convince you not to try IC meds. I think the latest I read, Elmiron causes hair loss in only 4% of patients, and although it causes gastrointestinal upset in many patients, it often subsides in a couple of weeks or so as the body adjusts to the new medicine. And some have found relief by taking it out of the capsule and putting the powder into some water to take it.

    It's true that different studies have shown different success rates for Elmiron - some studies sound promising, others sound discouraging - and it's true that it might not work for you, but - what if it DOES work for you? What if it gives you your life back? Wouldn't that be wonderful, if it did?

    Of course, we all have to take or not take medicines, as we feel is best for us, but I wanted to say, Elmiron really does help some people, to the point where they hardly even know they have IC.

    Blessings,
    Lori

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  • sdg78
    replied
    I just wanted to say thank you so much for all of the advise! It really helps to have people there going through similar circumstances. I really appreciate it! L. Thomas, I now know what the doctor was talking about when he told me that my bladder looked more vascular than normal... "bloodshot eye", now I can picture what he was talking about. Thanks again for being there!

    Sharon

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  • ICNDonna
    replied
    One thing you might try is the IC diet. You'll find it in the Patient Handbook. Some ICers find that single thing helps more than anything. And if it turns out you don't have IC, it hasn't done any harm.

    Warm healing thoughts,
    Donna

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  • vm
    replied
    Your symptoms sound very similar to mine when my IC started up in 2001. You can read my story if you click on the link in my signature line.

    On the water, it is very good to drink enough through the day so that your urine stays diluted. If you don't drink enough it can get concentrated and then that is irritating to the bladder. The trick is to stay hydrated by taking sips through the day and not chugging down big amounts all at once.

    Detrol may or may not help. It leads to retention in some people - but really helps others. It has been helpful for me and I've been on it for 5 years.

    Taking Elmiron is a personal decision. I was worried about the side effects, too, but I am SO glad I went ahead and tried it. It's been my miracle and I basically have had no symptoms for a couple of years now. I take Elmiron along with a few other meds and they seem to do the trcik. Elmiron does NOT help everyone, but there are those of us out there for whom it makes a huge difference.

    Good luck! So glad you found us.

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  • L. Thomas
    replied
    I have mild IC. With cysto you can see the "bloodshot eye", but it is not completely red. I have needed only one thing to control my problems..bladder instillations.

    I was treated for overactive bladder and all Detrol did was slow the urine steam to a trickle. The urge and frequency was still there.

    welcome
    Keep your chin up.

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  • SharonA
    replied
    Looks like Slim Fast could be a food trigger for you. Stay off it for a little while to see.

    Water...The reason we say drink plenty of water is that it will help dilute your urine and flush it out of your bladder quickly.

    Elmiron...I don't take it but those who do say that it can take up to 1 year to get the full benefits.

    I have to go more than the "normal" person but I always have and it seems normal to me. Trigger foods/drinks causes my bladder to burn. I drink more to dilute my urine which in turns makes me go more.

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  • sdg78
    replied
    Ok, so do you feel like you ALWAYS have to go, no matter what, or is it only when you eat trigger foods? I'm just trying to figure out where I should go from here. Should I go ahead and try the Elmiron or should I hold off and try everything else first. Here lately, I've had good days and then boom, I'll have a bad day (like today). I've also started Slim Fast like 3 weeks ago to lose the pregnancy pounds and I think maybe that is a trigger for me. Yesterday I didn't have any Slim Fast products and I had a REALLY good day. I had Slim Fast today and I have been miserable! One other thing is people keep saying to drink lots of water, which I do, but it makes me have to go to the bathroom a lot. My urologist told me to cut down on my fluid intake, but that doesn't seem healthy to me since I don't usually drink the recommended daily intake of fluid anyway. What do you think?

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  • hensleyi
    replied
    hi

    Your symptoms do sound like IC. I know for a long time I used to enjoy a large diet soda for lunch and would notice that my bladder symptoms would act up after that. Of course, drinking coffee is a huge no-no for me. You may want to try cutting out the artifical sweetners and caffeine for a while and see if that helps. For several months I have been drinking only water because it don't want to risk it. It was hard to get used to giving up my sodas for lunch, but I now find that my symptoms have gotten better.

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  • leelee88
    replied
    Hello Sdg and

    Your symptoms sound alot like IC.. You could try the IC diet and see if that helps..
    Also, To have a true dg your doctor would have to do a Hydo on you, Thats where the put you to sleep and the exstend your bladder..
    With my IC, I have the pressure you are talking about and when I eat something does not agree with my bladder. I have frequency and when I go it still feels like I have to go again..

    Also you should check out the IC handbook, it has a lot of helpful info in it
    http://www.ic-network.com/handbook/

    Hope this helps..

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