Hi I'm Jen

[icjen]

Hi everyone! I new to this site, but I've really liked to read all the stories of others with IC. I knew that I wasn't the only one in the world with IC, but in my life, I'm the only one I know that has it, and the only one that's even heard of it. I don't even think my PCP really knows what it is.

Here's my story:

I was diagnosed Aug 2004. I was very fourtunate with my Doc's at that time. I first thought my pain and frequency was coming from my uterus, due to weakened pelvic floor muscles (have 2 kids), but during my exam, she said my pain was coming from my bladder, she suspected IC, and sent me to an IC specialist. They did that potassium test and I was immediately diagnosed. She put me on Elmiron 100mg 3 x a day, and Vistaril 25mg @ bedtime. Then, I moved from AZ, to PA and I started with a new Uro. I told him about how my symptoms are still present, but he said I have to wait at least 6 months to see if the Elmiron will help. But he did do the bladder hydrodialation to try to relieve me a little. Unfortunately, all that was good for was to make me 100% sure that I had IC through his exam of the bladder, but no relief. To make a long story short, it's been over a year now, and I'm still not feeling better yet. I was sent by my Uro, to another Uro in a bigger city. He's starting me with a trial and error with overactive bladder meds. I just started Ditropan on Friday, but after taking the second pill, I had major side effects : dizziness, drowsiness, dry mouth, palpatations, tachycardia, flushing. So I'll be hearing from my new Uro today to find out my next med.

My IC symptoms include pelvic, lower back and perineal pain (usually mild to moderate), perineal and bladder burning, pain with "relations", frequency (between 18 - 25 times a day), urgency, and a constant pelvic pressure and discomfort. I also have chronic diarrhea (I think from IBS). I usually only have to get up once at night.

I think the worst thing for me with having IC, is the diet rules. My lifestyle isn't what you would call healthy. I drink about 6 cups of coffee a day, I smoke, drink soda, and my appetite is poor, but when I do have an appetite, my favorite foods are thing I'm not supposed to have now. This is a real struggle for me. But, I am working on it. I've decreased the amount of coffee I have, but still haven't given it up completely. (I do take Prelief).
I'm trying to drink more water and less soda. I haven't quit smoking yet either. Everday a getting closer to the point were I give it all up and slowly introduce new things into my diet to find out what I can tolerate, but it's a very hard battle for me. Anybody know a good website for getting acid-free coffee?

Well, thanks for listening. That's my story. I think I'll learn alot from everyone about how to deal with this disease.

Jen

[SharonA]

:welcome: Jen to the ICN...

Sounds to me like you are on overload. I think we all face this in the beginning.

Personally, I try to remember that change is not hard and does not cause me stress if I do it in steps. I call it "dot to dot". I take things one at a time and connect the dots toward life changes. A long time ago, there was a movie titled "Brother Sun and Sister Moon". It was about St. Francis of Assisi. It was a rather "hippy" movement movie. The one thing that I have remembered from this movie these many years was this statement..."Do few things but do them well...take your time...go slowly". I translated that into my "dot to dot" theory.

Many people have received substantial help learning what triggers IC pain and how to reduce these triggers. Please get yourself off coffee and sodas. These 2 drinks are harmful for a lot of us. Try to think of them as poison for your bladder. This is your first "dot" toward self help.

I am so glad you found the ICN and I hope we can be a source of comfort and help for you. :)

[traceann]

Hi Jen and :welcome: to the gang!! You've come to the right place for support, info, etc.

I have to agree with Sharon, get off the coffee and pop, at least for awhile, look at it as an experiment. I love the connect the dots theory!! ;) That makes perfect sense, it's easier to do in small steps. Try to say, kick coffee and pop for 2 weeks, or a week - whatever, view it as a choice, not a "I have to do this, I have no choice". That always makes it hard, tell me I can't have something and I want it even more!! LOL :biglaugh: That was how I quit smoking the first time (stayed smoke-free for a year, til divorce cranked me back up again, ugh, dumbest thing I ever did!! I quit by using the Zyban, on Wellbutrin now, so hoping to try again! :) ), I looked at each day - one day at a time - as I CHOOSE not to have a cigarette, and every day, it got a little easier....Try it and see how you feel, those two items alone could be what's keeping you uncomfortable.

Yep, the diet has been one of my greatest tools in keeping me feeling good!! I take the Elmiro, 100mg 3x's a day, Vistaril 25mg at bedtime and I used to take Ditropan, 5mg 3x's a day, but now down to one 5mg at bedtime.

Once, again, welcome to the boards a look forward to seeing you around!

Hugs!

[diane57]

Hi Jen and welcome!!! Sounds like you are making good progress with "sneaking up" on the diet bit by bit. If you want to try a low-acid coffee, I'd recommend Hevla coffee - you can just google "Hevla coffee", and several websites will pop up. It's much milder than regular coffee - I think it's something like 70% acid-reduced, and I think it's the tastiest of the low-acid coffees. Also sold on the "ICN shop" on this ICN website are Euromild and Puroast coffees, both of which are low-acid. I personally think the Hevla tastes the best (try the dark roast for a full-bodied flavor) and I drink 2 big cups every afternoon with no problem - but regular coffee usually puts my bladder in a tantrum. You might also try Teeccino (teeccino.com, I think it is, and also in the ICN shop), a no-coffee beverage that comes in several flavors and is completely caffeine-free, but very tasty and fun to brew, as it's brewed in a coffee-maker like regular coffee.

Good luck, and it's great to have you here.

[Sarojini]

:welcome:

You've gotten some great advice already, so I'll leave that to the other ladies -- and just say "hi" :hi: from one Jen to another ;)

[vm]

:welcome: I have to admit my hand flew to my mouth when I read about the coffee, smoking, etc. :lmao: It's so hard to give some of those things up, isn't it? :(

For me, I really, really had to visualize my trigger foods as bladder poison. I had to consciously think, "If I eat this it is like pouring acid on an open wound," and then decide if a "party in the mouth" was worth the food punishing my bladder and me being miserable. I found that really no food or drink that passed my lips for such a brief time was worth alllll the discomfort that resulted. The diet can make SUCH a difference. Promise.

I also take Elmiron and Vistaril. Another drug that is often thrown in with those is Elavil - it helps relax the bladder and some feel it interferes with the pain receptors as well. Then I also take Detrol LA which is very similar to Ditropan.

I have found that a combination of meds is essential to my bladder feeling good. I don't dare stop the Elmiron - adding that led to the biggest change in my symptoms. But the other med that if I stop it leads me back to flare? The Detrol LA (antispasmodic). Everyone is different, though, but you may want to ask your doc about other meds.

The good news about diet? I was very, very strict with myself about the diet that first year and a half after I was diagnosed. As the Elmiron kicked in I was able to slowly add back in some of the forbidden foods. I think it has been the last 2 - 2 1/2 years that I have been able to eat whatever I want again. Now, I only added things back in as my symptoms were nearly completely gone, but I was able to add back in and I know several other people who have been on Elmiron for some time have been able to, also.

But until your symptoms really abate - PLEASE try the diet. It is so worth it.

[trytosmile]

Welcome Jen...I'm Jen too...lol

Some excellent advise from the others. Look forward to chatting with you !!!

[windwalker]

Looks like they all summed it up quite well, so let me just welcome ya to a great group of people. If you got questions, good chance someone here's got a suggestion for ya! :D

[Amyinagony]

Hi Jen :welcome:
Glad you found this site. It's a wonderful tool for information and support.
I was like you, knew I was not the only one, but just could not find anyone else with it, for a LONG time. This site is the best!
Great advise here already from some wonderful people. I will say that the diet is very difficult too. After being on Elmiron for 2yrs, I am one that was able to add 'some' things back in, but not all. I still cannot do tomatoes, (and I'm an Italian food lover), I do however, will have manicotti with a tablespoon of sauce on it (with Prelief) and that's been ok. I don't do that often. I cannot do vinegar things, absolutely no cranberries,no citrus fruit or their juices. I can do a half of an apple (again, with Prelief, which I swear by!) once in a while, not a lot, like I would like. I can also eat a pear, blueberries are ok with me too. Those all were also favorite foods of mine. I miss them, but do not miss the pain that they caused me. SOMEDAY maybe I will be able to eat those things all I want again. But for now, I can't!

As you can see, you just may be able to get back to some of the things that are forbidden, but at first you will find it a huge help to just do without it. Good luck.

[icjen]

Thanks so much for all the replies. I really am going to try to work on my diet. I plan to buy some of the acid reduced coffee. I hope it will help me feel better. I look forward to chatting more.
Jen