I got the news yesterday....

[Ashley00]

:confused: I've been hurting since Aug 9th. The first two weeks they treated me for kidney stones that wouldn't pass. Started with my primary OBGYN, then went to a URO Dr. I've had 5 Silver Nitrate treatments (did not help at all) , Cystoscopy, Hydrodistention....before that x-rays, then a CT scan. I've peed orange, blue and green. Sometimes lite yellow. Back aches, BURNing, and nausea. Back and forth to the Dr. with yet no relief. Sept 24 they tell me I have Interstitial Cystitis. I still can't pronounce it yet. OK!
I stop at Albertsons and get the Prelief, get my prescription filled for nausea. I'm sad, scared ...30miles from home. But, I have my IC brochures the nurse gave me. So what do I do. "McDonald's". I get home finally, revisit this web site and find exactly who and what I need. You! This diet thing is new to me you know. I don't cook much, I want to stop hurting, so where can I go to get something to eat that has a drive thru? I'm lost in my head. Stunded, and in shock. The whole bladder removal thing plays heavy in my head. They said they could give me some extensive medicine that would make my hair fall out.

[cindydi]

I know its alot to take in at once. Take a deep breath and know things will get better. Now that you know what is wrong you can take steps towards getting better. It may take some trial and error, but I think most of us find ways to manage our problem.
When I first found out last January I was in alot of pain. Now I take my meds everyday (Atarax for me) and drink ALOT of water and I am pretty much pain free and finally can add back coffee into my diet!

Everyone on this board is very helpful and supportive.

Cindy

[Ashley00]

I know its alot to take in at once. Take a deep breath and know things will get better. Now that you know what is wrong you can take steps towards getting better. It may take some trial and error, but I think most of us find ways to manage our problem.
When I first found out last January I was in alot of pain. Now I take my meds everyday (Atarax for me) and drink ALOT of water and I am pretty much pain free and finally can add back coffee into my diet!

Everyone on this board is very helpful and supportive.

Cindy
Thank you. I'm not a quitter. I'm a fighter. Just a little overwhelmed. I have so many questions....
Thanks, again.
Ashley

[GriffsMommy]

Ashley,
:welcome: to the IC network. I know how overwhelming it is to get a diagnois of IC. I would suggest you take a look at the IC diet. You can find it in the patient handbook which there is a link for at the top of the page. It helps a lot of people get their symptoms somewhat under control without meds. There are many meds out there to try and Elmiron can make hair fall out for a very small number of people but it really does help some.
I know you have a lot of questions and we'll be happy to answer as many as we can so start asking away :grouphug:

[Berkshire Road]

Oh, honey -- you can probably do just fine with a plain hamburger or cheeseburger and fries at McDonald's or any other fast food. Wendy's vanilla frostees or even the original frostee don't give a lot of us any trouble. There are even things you can have at Starbucks. The diet is restrictive, but it's not a life sentence to Boring Food.

Read the Patient Handbook (link at the top of this page), and you will learn a lot more about the diet and other self-help that you can try. I know how frightening and overwhelming this all seems right now. There is a lot of trial and error in treating any individual with IC, since we all react so differently. But you will find the things that help you, and you will feel better than you do now.

:welcome: to this group. We'll be here to answer questions or to just offer support, if that's what's needed, for as long as you need us.

[tigger_gal]

:hi: :welcome: to the boards, you will find a wealth of info in these boards. not to mention tons of support, consider us your second family. :smile tee

[Sally939]

I was dx about two months ago and it has been hard. Some days are harder than others. But I still live life, have a job ect. At first the hair thing was a huge deal to me. Two months later I still look fine. I think I might be loosing a bit, but nothing anyone would notice. I am probally just more aware of every hair that naturally falls out. I think the studies show a very small percentage have obvious hair loss. I tell myself with all my meds if I want to stop taking it I can. I try (not always good at) take it one day at a time. The people here are great help and support. The best thing is they understand how you feel.

[glassd18]

Welcome to the ICN!!!! :welcome: When you need :help: there is always someone here who can answer your questions. We have a common bond here, and understand better than anyone else what you are going through. Please know you are not alone, and we can help you with any (almost) questions you might have or at least point you in the right direction.

[GoldSeals]

[QUOTE= They said they could give me some extensive medicine that would make my hair fall out.[/QUOTE]

Hi Ashley,
They are probably talking about Elmiron.For some people it doesnt really make the hair fallout at all
Regards,GoldSeals

[Janette Rass]

Hi Ashley, I remember how it was for me when I was first diagnosed with IC. I was confused, overwhelmed, scared. :welcome: So glad you've found us. We are here to give you support and sometimes what I often think is more important, information! You can use this site to help you, along with your health providers, [whatever form that takes] find ways to help with your pain, ease your frequency or whatever nasty or not so nasty form your IC takes. We are all I think a bit different in how our disease presents itself, in how we treat our IC, but we all in common that we wish you the best. Don't lose hope. Remember take it one step at a time [try the diet] & soon you'll start to feel better. :smile tee Great Big Hugs Janette

[TexasHoney]

:grouphug:
Hello, Ashley:welcome: To the ICN Family
I am sorry to hear you have IC but I'm glad you found us. This is a wonderful website with a tremendous amount of info about IC. Plus there are some really nice people here. I know how overwhelming it can be when you are first diagnosed. We all have been there. We understand. You are not alone.

Hang In There
TexasHoney

[dreamy]

Im sorry that they told you you have this. Im dealing with a lot too. I hope you feel better. I hope we all start to feel better. I am wondering why we are all even going through this and whats causing it.

[ICNDonna]

Only a very small percentage of people taking elmiron have hair loss. If your doctor is suggesting it, I think it would be a good idea to clean your hairbrush thoroughly to remove all the hair, then brush your hair with the clean brush so you know how much you brush out every time you brush. Clean out the brush again and put the hair in a plastic sandwich bag. That way you have a comparison for when you take elmiron.

Yesterday I had lunch at Dairy Queen --- I had a cheeseburger with no sauce and no tomato and frenchy fries. When we eat at a fast food place, I just order mine without tomato or any kind of sauce.

Donna

[traceann]

Hi and:welcome: to the boards!

We all know that "what the heck am I supposed to do NOW?" feeling when you finally know what's going on. But as the rest have said, it can be all so overwhelming, so much information coming at you - and I know all I could see was all the SCARY information, lol. So try to take it in in small doses so you don't overwhelm yourself even further - especially reading in advance stuff that most likely will never pertain to you etc. One step at a time!! ;)


Like the Elmiron-tied hairloss - it's such a small percentage of those taking it. (Like 2% or less I think) And like Donna said to keep tabs on it by taking a sample before the med on how much is normal for you to "shed" in a day etc. There are so many treatment options now that you have a name for it, you can begin the right ones for the job!! You will feel better I am sure, it's always the worst around diagnosis, and usually it improves from there etc. ;)

Here's a link right to the diet page in the handbook.
http://www.ic-network.com/handbook/diet.html

I printed the list out and took it with me everywhere I went to the grocery store, to restaurants etc. And become an avid label reader - that's a hugely important thing to do, you'd be amazed how many sneaky no-no's are in some foods that you never gave a second thought to! :)

What I did was build myself a diet out of the "Usually Ok" column for as long as it took to get my bladder calmed down. Then, once I felt comfortable enough, I started adding things back in, one at a time from the "May Be Ok" column, usually 2-3 days apart (that way if there was an increase in my symptoms I could tell who the offender was). If you have an increase in symptoms, it goes on the no-no list to be retried at a later date - some things you can't tolerate in the beginning you may be able to tolerate a few months down the road after being on your meds, the diet etc. It's not this boring forever, as you start adding things back in it starts to be more like it used to be - only minus the foods that aggrivate your bladder! ;)

And yep, I too did fine with plain burgers and fries most times. If I was feeling adventurous I'd have some lettuce on it and some cheese (I was usually ok with processed American Cheese). I also did ok with a rootbeer here and there with my Prelief etc, and thank goodness for vanilla milkshakes! ;)

Well, once again welcome to the gang, and hope to see you around!!!!

[Agape]

Ashley: I am new at this too. I was only dx about a month ago. At first (and sometimes even now) the diet made me cry. I've found I can get really fat on the IC diet, because I love bread and it is fine to eat. I seem to be okay with Chick-fil-a sandwiches, plain (I have had a little mayonaise and it didn't bother me). It is still hit and miss with me about the food. I am on Elmiron and haven't noticed any difference with my hair at all. I feel the same way you do about cooking and look for shortcuts all the time. Guess that was what made me cry in the beginning. Also, friends going out for Mexican and drinks and me just having something bland and water makes me sad, but hopefully this won't be forever. I am really hoping the meds work and hope they will for you too. Also a cure for this in the future is my prayer!