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hi all
i am very challenged in this treatment right now...in all ways....DIET esp...ugh..
i was hopin to hear from others who have frequency as their main symptom...and those u who had it b4 they felt better too..
its been 5 mos and everything i put in my mouth causes more frequency....
i kno we all have diff symptoms and none of them are ok...please post or drop me an email...i really need some support...
thanks
<3 <3
Dazz11
You know I struggle with the same thing. I am 3 months in now, and peeing more than I ever was. I tried to do so many experiments, like only eating Eggs and broccolli one day, and taking out all carbs another time..I have tried 5 different waters and nothing seems to help. In the morning I go once an hour, then after lunch I go every 15 minutes until I fall asleep at night. I have to get up at least 2 times before I fall asleep. I have fasted before, and it helped a lot. I had no pain and only went pee 7 times that day only drinking water, I am sure its food. But it seems to be any food like you say. Do you have other things that are improving? I was talking with Matia about this and she thinks my bladder is healing, but it will be a while before I feel it because It takes time for the tissue to rebuild. I have really low bladder capacity. I am also wondering if I have trained my brain to have to go all the time..I wish I had better "advice" but I am just as frusterated as you and want you to know you are not alone. I hope some people who have been in treatment a while will post and share when there frequency started getting betterI dont know why we have this, but I do know how you feel. I am wondering, "What if I do not heal" "What if I am one of those people that takes 5 years or more" "What if I never feel relief" I have to stop that as soon as it starts though and focus on positives because it will kill me if I don't.Hoping for breakthrough for you VERY SOON!
Frequency
I don't know if this will help any of you or not. I sometimes go once an hour and sometimes more often, but at night I usually do not get up. I have sort of trained myself to get through. I do have a normal capacity bladder, however it was not always that way. At one point I was only holding 4 oz of urine at a time. A urologist I was seeing at the time told me to drink a lot and then try to wait longer in between bathroom trips. I know that is hard for some people with IC to do. I did not know that I had IC at that time. It was miserable trying to wait, but I was able to work the capacity back up again. At night I figured some of my getting up to go was just habit. I would get up at 5 a.m. when my husband got up to get ready to go to work. Finally I just decided to not get up no matter how badly I had to go. It worked after awhile, and now I do not get up at night unless I am having a really bad flare, and I drink a lot of water in the evening. I had to work my way up to this point. It helped to sit and watch a movie and drink the water and then try to wait past the time I felt like I had to go. Also, I want to add that a lot of the foods on list 1 and 2 bother my bladder, especially the greens and broccoli. I think it might be due to these foods being higher in oxalates. Not sure though. I'm also senstive to eggs. Some of these foods get my frequency/urgency going big time. I hope this helps someone. IC is a difficult disease to deal with.
thanks clueless for ur
thanks clueless for ur post...i have heard about bladder training...its def hard..esp right now cause i am peein soo muchbut i am willing to try anything at this point..what generally could ur bladder handle on list one???i can't eat rice and having a hard time w grains...how long b4 u saw improvements in ur frequency??thanks again for ur advice..
Kristen
My bladder has never done very well on any veggies. On list 1 I tolerate cucumbers if I only eat a slice or two. My bowels don't like them though. I eat potatoes, fish, beef, pork (when my bowels aren't bad), iceburg lettuce, a little bit of red cabbage. I do not tolerate brown rice or whole grains. I was able to eat broccoli for awhile but now I flare on it too. Some days I think I am going backwards instead of forward. I can't remember how long it took before I saw improvements in frequency. I still have it a lot at times. Sometimes I can wait 2 to 4 hr. but not usually. I drink a lot of water, about 3 or more liters per day, so I go a lot. Most of the time I am in there about once an hour or so. I think that is too frequent. Like I said, foods flare me a lot and that causes more frequency. When I go, my bladder is usually full 5 to 8 oz. or more.
Dazzo11
I am with you there on having to go all the time... at least 30 times a day and 2-5 times at night ( 2 times are the nights that are great! ). I am seeing Matia for the first time next week, and I am wondering the same things you are already! I have been doing the diet for a little over 2 weeks. I realized the last few days that cucumbers make me flare, or should I say burn a lot more.WE CAN DO THIS! It took time to get this bad, it will take time to get better.I know it is hard having kids at going that much. Sometimes I feel like I live in the bathroom. I wonder how much I spend on toilet paper! Well you are not alone, and you will get better, just keep eating good and stick with what Matia says. I am telling my self this too!!!!!: )Kelsey
Kelsey
It seems like I live in the bathroom too. I've read whole novels in there, and I have often though of asking my financial advisor to buy stock in the Cottonelle toilet paper company. :-)
experiment
Dazz - Do you want to do this with me tomorrow? I am going to NOT eat any veges, only meat, eggs, potato.. I have tried so many different combos to figure this out, but reading someones post on here made something click..It could be the VEGES I am eating! How in the world does your body heal though when you do not eat many veges? Do you think flaring all the time makes it so our bodies cant heal?
veggies
Veggies are crucial. they are apart of the alchemy of the diet. We need the fiber! In the first year I ate things that flared me a little bit but that the fact that my body needed them overshadowed the flaring. I think that by degrees I got to where I tolerated certain vegetables more - and exposing myself to them in doses I could handle helped this. This is just a sucky part of treatment but in my opinion leaving out veggies is not good! I do not think the body does well without veggies. Let's ask about this problem and how to deal with it at the next meeting. Should we omit things that are crucial to our treatment if they make us flare? I don't think they always will- but you do have to get that point! I was unable to eliminate my flaring in the beginning and like for the first year- I was able to damage control keep it down and at different points in treatment found I could tolerate some things better than others. I could not eat celery to save my life. It made my tongue burn and go numb and made me dizzy! now its fine as wella s carrots which also gave me trouble. I had trouble tolerating cucumbers for the first 3-4 months. I've been eating my starch- last in my meal and trying to eat my protein/veggies first. this is helpful somehow as it seems to buffer the more intense affects of the grains. thanks for reading- Mary
Honeybee
Thank you for explaining that. I have been eating 2 huge raw salads for the past few days before today a day, and I have had the worst flares, So even though she moved me to list two, I think I need to go back and do an elimination type diet with her list one and see if that helps. I know I cant go w/o veges. But, if I could at least find out witch ones are causing the MOST problems for me..at least I could elimnate those until I get this under control. How often do you go now after being in for a year? I would LOVE to ask Matia at the next call if flaring from all the veges hurts treatment results.
Melsvensen
I ate my veggies steamed until recently- I bought a bamboo steamer- LOVE IT! and would eat a raw salad at some point in the day and maybe that was why I did mostly good with veggies. Maybe the rawness was toomuch! Now I flipped it around and I am eating more raw and less steamed. I admit that frequency is not my issue although it did go up for me in the evening/ night. I go maybe once a night now- my dog wakes me up to urinate so I go otherwise I think I could go all night until about 6 o clock am. my issue was and is- pain and that is noticably better. I have had nights where I slept through the night without waking to urinate. I think that took at least a year to happen. It's a great question let's ask it! I wuold think she would say- the benefits of the veggies outweigh its tendency to flare people- but I never knew people flared from simple list 1 and 2 veggies that much. for me it is totally grains.i don't know why but cabbage always seemed to help me and veggies seemed like my friend. barring things like green beans and other more later list veggies! keep in mind that its hard to know what is flaring you exactly and that this can change anyway. rapidly. one day you didn't tolerate and then one day you can. totally crazy! MAry
Vege Steamer
I think I will get me one of those today! :)
Dazz11
I just read this in an article about die off that was just posted "Symptoms usually pass within 1-3 days, but on rare occasions can last several weeks. If you are suffering from a major illness, the symptoms you experience during the healing crisis may be identical to the disease itself. Sometimes discomfort during the healing crisis is of greater intensity than when you were developing the chronic disease. "I hope thats the case for us!
Veggies
The veggies definitely make me sick. It is a "catch 22" with them. You need to eat them to wipe out the candida, but on the other hand they flare up bladder and bowels. It has always been a mystery to me as to what to do about that. I just eat what I seem to tolerate, and some days I'm not always sure exactly what that is.
Clueless
Did you ever ask Matia why veges flare us? It seems so odd to me such healthy things cause us so much pain..Def. a catch 22
Melsvensen
YOu said you were eating 2 big raw salads/day... could it be not the veggies themselves but the form you're eating them in? Matia posted recently how occasionally a beginner can't handle much/any raw veggies but cooked are ok.
I just read that and the past
I just read that and the past few days I have put myself back to list one, and I am only eating one raw salad a day with not as many veges in one salad. The rest of my veges I am steaming. It is helping somewhat, but not major. She just changed my herbs a few times over the past few days too, so I hope after we can find the right herb adjustment I find some relief! I know I cant give up veges..they are like good medicine to us. I just ordered one of those bamboo steamers, I am looking forward to getting soon and start using.
Mel,I just read all this
Mel,I just read all this now. Maybe you are flaring from all the veggies. I know I can only eat lettue (iceberg and rommaine) and broccoli. anything else flares me. maybe pick one veggie and just eat that for a few days and see how you do. Plus, anything raw would flare me, so broccoli raw and I would flare but steamed is ok. I cant even do cucumber or cabbage! CRAZY!
vege madness
I feel sad that it could be veges, how in the world do I heal w/o all the vitamins!