Another IC question

[stormie]

I was just wondering, my symptoms don't seem diet related. They do come on suddenly but only in a mild burning (sometimes a little pressure) form and they always go away at night and I have 0 burning while urinating. It doesn't seem like anything I eat because I have no burning on urinating and I have never had pain. Nothing changes when I watch what I eat. I have been having this since mid April. Does anyone know how long it takes the full symptoms to come on or does it take years for the full symptoms to develop? I think I could live with this without medication but I'm also very aware that the symptoms could change any day for the worse. My symptoms have gotten 75% better since April and May and I don't know if it's the St. Johns Wort but that is all I have tried. Thanks for your help.

[meme]

That sounds like the same way my IC started out. I still don't have any pain while urinating and I hardly ever go in the middle of the night. My symptoms just gradually increased over the last ten years. I really didn't even have that bad of pain until about two years or so ago. Just a lot of frenquency. The St. John's Wort could be helping you though because it is an antidepressent and those seem to help with bladder spasms.

[stormie]

I think maybe I have been fooling myself. I thought you had to meet some sort of criteria for IC. I have never had frequency/urgency. The only time I did was when I had the acutal infection (first one in my life) . When my burning was at it's worse, I was still only going 7-8 times a day. I didn't know that you could still have it and have a normal capacity bladder and no frequency or urgency. I went to ortho-elmiron website and took a pre-screening type test and it said it was very unlikely based on my symptoms that I have IC but I know that that is what it is. That's really the only other thing that it could be. My sister goes to the bathroom more times than I do and she gets up 2 times a night to my 0 and she has no problems with her bladder. It's just a waiting game. I know it will get worse, I just don't know when and where. Thanks so much for your replies.

[Freckles]

Stormie,
I have IC and I don't have urgency but do have frequency. I do go to the bathroom quite a bit but I have never felt like I couldn't make it to a bathroom. I sleep through the night but I think that is because of my meds that I take. My main symptom is burning pain all day long every day of my life for the last nine years. I feel like my bladder is a burning raw ball of flesh. I also have horrible pressure. I feel like a basketball is sitting on my bladder. I take pain meds that help, but most days are pretty painful. I do think though that I have a pretty severe case. I don't think most people have 24/7 pain like me, so don't let me scare you. The vast majority of people can control their pain and symptoms with medications. I'm just one of the unlucky ones that have to take strong pain meds. I hate it. I am a very healthy person besides my bladder problems. I don't even have a primary doctor because I never get sick. Crazy isn't it.
Karen

[green_the_fish]

Yeah, I'm also not very diet sensetive. I do have a few triggers, though. Caffeine bothers me. I can still drink stuff with some caffeine, like hot chocolate, but I stay away from lattes and engery drinks. I've also had reactions to alcohol (which I'm not really old enough to drink yet... shh, lol ), green tea, dandelion tea, and cranberry juice. Cranberry juice is just evil in general!

But, other than that, I'm pretty insensetive to diet. I eat pizza, chocolate, peanuts, hot dogs, tomatoes, pickles, citrus fruits, and all the other foods that the diet says to avoid. I drink soda daily, and often drink fruit smoothies. When I first got IC, I tried the diet for several months, and it just didn't help me like it seemed to help others. Like you, following the diet didn't lead to a change in my symptoms. At first, I thought it meant that I didn't have IC, but my IC was eventually confirmed by a cysto+hydro. I read the surgery report myself; they found the classic glomeruations.

I've talked to many ICers here, and I've met people on both sides of the spectrum. Some ICers are very sensetive to diet, and can flare-up from just a tiny amount of a food that bothers them. Other ICers are like me, and are fairly insensetive to diet. I've come to the conclusion that we're all different, and we all have different triggers.

[tabasco32]

Mine started in april as well after a heavy night of drinking and playing texas holdem. I remember waking up and thinking it was a bladder infection. Been peeing every 10 to 30 minutes after that night. pain in bladder got worse about 3 weeks ago, don't even want to drink water anymore the pain is so bad. cant take painpills because of constipation.

[Freckles]

Tabasco....
If you need the pain pills and have problems with constipation you can fix that. Honestly, all my pain meds have given me the same problem. I order flax seed, wheat bran, wheat germ, sunflower nuts and a couple of other things from a place in Georgia, I grind them all up together and eat with cereal or bake on fruit, put in yogurt. I try to slip some into a lot of stuff I eat and it does the trick and is very very healthy. You can also buy stool softener at the grocery store that is supposed to help although I've never used it. I even thought about marketing my little mixture because it really works and tastes good too.
Karen

[tabasco32]

I believe I'm allergic to wheat. and my constipation is different it is dyskyenisa where my colon is not working insinc with itself. so the stool stays there longer. I need something good to take and also bladder friendly.humm