newly diagnosed

[princess 28]

hello everyone i am so glad to find this board
I was just diagnosed with IC in July. I have had problems for several years and didn't know i had it.I was currently on elmiron four times a day including some other meds one is a antidepressant and the other is a allergy pill the last ones I take at night they make me really sleepy. I had to stop taking elmiron i had too many stomach problems with it i am controlling my ic with the ic diet.It seems to help sometimes i still get spasms in my bladder if i have to go really bad so i stay really close to a bathroom and i try not to hold it for too long.I would like to hear from others about there ic
Holly :grouphug:

[traceann]

Greetings and :welcome: to the site!! Yep, here you will find lots of info and lots of support!! If you have questions, odds are there's someone with some experience in the matter to offer some friendly advice/support!!

Here's a link to the Patient Handbook, has loads of great information!

http://www.ic-network.com/handbook/diet.html

Sorry to hear that Elmiron gave you trouble, but good job and congrats on controlling through diet! I was getting horrible heartburn from it, but when I told my doc about it, it was recommended to me to take it out of the capsule and mix it with a sip or two of water, and thankfully - heartburn went away.

Sounds like you are on Elavil and Hydroxyzine(Atarax/Vistaril)? I too take the Hydroxyzine, plus Ditropan for spasms.


Well, just wanted to say welcome to the gang, and look forward to "chatting" with you!! :)

Hugs!

[curlycue]

Welcome you are in a great place Good luck with what ever treatment you decide to try and remeber sometimes you have to try multi-tretments to see wich one is right for you.

[ICNDonna]

Welcome! I'm glad you found us.

Some people find that if they empty the elmiron capsule into water they can tolerate it much better. It seems the capsule itself can frequently be the problem.

Sending warm hugs,
Donna

[VickiB]

Hi Holly,

Glad to have you join us! Sorry that you have IC, but you've found a great site for information on how to deal with it! In time, most of us do get better!

Vicki

[princess 28]

Hello everyone,
I've been so busy i haven't had too much time to get on here. my doc said i could gradually introduce foods into my diet, so i did, chocolate, bananas, etc. I don't know if it caused the flare up or what. I have started to have burning in my bladder when i pee it started yesterday, so I drank alot of water today and it helped with the burning a little but it still doesn't feel the greatest.
me and my husband had relations yesterday and i notice about every time we do that it hurts when i pee afterwards, do you think sex could cause my bladder to flare up too? I'm confused. If i get to feeling worse i will call my doc. but , i was wondering if you all had any info on this. sorry this is so long
thanks,
Holly

[mink47]

Sex can definitely cause a flare. I was given Lidocaine to help with the burning but it doesn't help the "inside". Also, I was told bananas were out of the question permanently b/c of their potassium content. Luckily I wasn't a banana eater in the first place but that wouldn't be something I would try to re-introduce in the beginning.

Good Luck

[traceann]

Hey Holly! Sorry to hear you are in a flare right now, that totally sucks! It could be one, or it could be all, like a cumulative effect...Did you wait a couple days in between adding new foods? I did that a lot, I would eat too many new things and then not know which one was causing my bladder to act up, I knew better too! LOL

And yep, sex definitely can set off a flare, or some serious discomfort for awhile! ;) Unfortunately...LOL :) Lots of girls take pyridium before sex and/or place a cold pack on the "area" after, or take some other form of pain reliever pre-sex to catch the pain/flare discomfort before it starts.

I don't have any problems with bananas at all, and lately I have done well with chocolate (thank goodness!!), but I have been on my meds now 11 months, and in the beginning, chocolate was a huge no-no for me, ugh!! :(

Hope this helps a little bit!!!

Hugs!

[Babs RN]

I tend for flare after sex. Usually tend to be out for a couple days after the deed.

Hugs,
Barb :grouphug:

[poetgirl]

Welcome to the boards!

Yes, sex can definitely cause a flare, and foods can cause the burning you mention. I've noticed that I'm starting to experience more food sensitivities, even though for the most part my other bladder symptoms have been under control. My primary symptom is burning, and is often caused by foods that irritate the bladder and urethra.

[melissa c]

I was recently diagnosed with IC in August. What a relief to know it is not all in my head. I would keep taking UA test to always come back neg. for UTI.
I was beginning to think I was crazy. But I knew the pain was real. My doctor has started me on Elmiron 3x's a day and I have already seen an improvement in my symptoms.
I am hopefully after being on the meds for 3 to 6 months I will be virtually symptom free.
I am also thankful for this wonderful site.
Now I know there are others out there in the same boat! :grouphug:
Best wishes,
Melissa

[VickiB]

Welcome to ICN Melissa. That point where you actually begin to wonder if maybe you really are crazy is an awful place to be! Lots of us have been there!

It sounds like you're already on your way to finding relief from your pain. -That's wonderful! Hope it does continue to that symptom free stage.

Glad to have you join us,

Vicki

[Amyinagony]

Hi Holly and Melissa,
A very WARM :welcome: to both of you and tons of :grouphug: .
Glad you both found this site. It's a GREAT site, with lots of information and the best support.
Holly- I agree with adding things back into your diet, do it slow and one thing at a time. That's the only way to know which one/s are affecting you. I can ONLY eat a half of a banana, and only if I take 2 Prelief tabs. Chocolate I'm ok with (milk chocolate) a small piece and not often. Dark chocolate is a bad thing for me. Found that one out just this past week. I will never eat that again. I still stay away from tomatoes too, for the most part. I can have a very little (2tblsp max) of sauce on Manicotti and ONLY if I take Prelief before and drink lots of water, and again, not often. I consider it a treat!! And, of course, none of it while I'm flaring!
Melissa, that's GREAT that in a couple of months the Elmiron is starting to help. It can take a while, so hang in there. I pray you become symptom free VERY soon too.
Good luck to both of you. Please let us know how things are going.

[princess 28]

Hello everyone! :grouphug: :welcome: :woohoo:
I am so thankful for this board everyone understands what I am going through also. and it isn't all in my head, I would get UTI one after another and the doc would say I see a little bit of a infection, so now I know that all the times i had the UTI it was my bladder reacting to what I ate and it would flare up and feel just like a uti. thanks board for all the info. I am feeling a little better but I still have some burning when i pee but not as bad I have been drinking alot of water to help.

I have a question about the tablets called Prelief how do they work and where do you get them at?
Holly

[traceann]

Hey there! Preliefs reduce the acid in foods. You take them right before you eat an offfeding food or one not sure of, or with the first bite in you, as some have stomach upset if taken on an empty stomach. I personally take anywhere from 1 to 4 depending on what I am eating...tomato sauce rates 4, LOL! They are great, they are calcium and have allowed me much more diet freedom!!! :)

You can get Prelief in your regular stores, I get mine at Rite Aid, for some reason my Kmart doesn't carry them, and the Walmart you have to request them to order it in. I pay anywhere from 9-11 bucks, depending on if they are "on sale" or not, lol. You get I think 120 tabs in a bottle. You can also order it online too!! I keep them everywhere, in my purse and at home. At the height of my usage, a bottle would last me a week to two weeks, depending on what I was eating. In the beginning I saved it to use with my straying off the diet every now and then, and ate safe the rest of the week or whatever.

Hope this helps a bit!

Hugs! :)