Hello I am Newly Diagnosed

[shellandjohn]

Hello,
I am 26 years old and I was newly diagnosed with IC. I have a question. I am still really new with this and just understanding a little bit of what is going on. However, I don't understand what a flare up is. I am sure that I have had a few..or I wouldn't be diagnosed with this disease. I think my flares are when I have bad stomach aches and when I go to the restroom it really burns and there is blood. Is that a flare up? :loco:

[kelly McC]

hi and welcome,
everyone is different and flares vary from one to another. I think visible blood could be sign of infection and should be checked out. I always have microscopic blood in urine and time to time blood but usually from infection or kidney stone if I see blood. Its hard to tell sometimes if its infection or flare so I usually get checked to make sure.I am getting better at telling the difference. fever does not help me much cause I tend to run one low grade but most of time.There are urine strips you can buy at pharmacies to check for infection. They are not always 100 % but can help.. My flares I usually have to pee every 10 -15 minutes and my abdomen bloats (IC belly) with urethal burning and pain. Hope I helped in some way,
and hope your feeling better soon,
Kelly

[Annie2]

Hi and welcome to the ICN. You will find a ton of valuable info and a lot of support here.

I just want to repeat what Kelly just told you. Flares can vary from person to person. I had the very same question when I was first DXed. How on earth do you know if you are flaring or not? You are just beginning to learn about IC and your bladder is probably still very irritated. Are you doing the diet? Most of us find it helps tremendously but it often does take a few weeks of following it very carefully before the bladder calms down and you really see the benefits. Have you begun any meds or treatments yet? Many of the treatments and meds take time to work, too.

For me, I found that in the very beginning I was in one big long flare. I began the diet and started meds but thought nothing was working. In about three weeks after starting the IC diet, though, I found I was feeling much better. As I found meds that worked for me, I saw more progress. It was then that I finally found out what a flare was. I now have what I refer to as my "baseline" state where I feel some discomfort but am so much better than I was in the beginning. Now when I find my frequency, urgency and/or pain levels going way up...that's a flare. When the flare is over, I go back to my normal everyday baseline state. Now when I look back at those first months I realize that, while I had some variation in pain and frequency, I really was in my first and very long big flare. When I began the diet and began getting control over my symptoms, the pain and frequency went down and that horrible first flare was over. Now I know right away.....if pain and/or frequency go way up........watch out cause there is a flare beginning.

We all have slightly different symptoms. Some people only see an increase in frequency when flaring. Others see an increase in pain levels when they have a flare. And some of us have everything...increased frequency, pain & urgency when we have a flare. Once you have been on the diet awhile and begin a treatment plan, you very likely will see improvement in your symptoms and then will easily recognize when your symptoms increase and you are in a flare.

As for visible blood in the urine, I think Kelly is quite right. Talk to your doctor about this. It could well mean an infection is brewing. A urine culture can determine if that is what is happening. If you are regularly seeing blood in your urine, a visit to your DR. is in order to find the cause of this.

:grouphug: to you. I certainly hope you will quickly find meds/treatments that work for you and that you are feeling better soon.

Annie

[ICNDonna]

Most people with IC do well once they find the treatment options that work best for them, and which foods and drinks are a problem. I'm one of those --- but sometimes I do have a painful day --- and that would be called a flare.

Most of the time, I feel pretty good --- I do have more frequency that someone with a normal bladder, and I do make frequent restroom stops wherever we go --- and I do have DMSO instillations once a month, but that seems to keep me close to normal.

Warm hugs,
Donna

[Deana]

HI my name is Deana and I'm new to the whole IC flare thing too.
I'm trying to stick to the diet, which isn't to hard when you desire so much to feel normal. I'm taking Elmiron and elavil 10mg at bedtime. Since my first flare and IC diagnoses last month I've had one absolutely normal week, which has given me hope. Then I started eating and drinking things that were not IC smart. Now I have the symtoms back...frequency, urgency, and pressure pain in my bladder. So I'm back to
sticking to the diet to see if I can feel normal again. I'll let you know how that goes...
Deana

[Alexa]

Hello and welcome to the ICN!

Looks like you got some great advice above - flares can vary from person to person (just like everything else having to do with IC!!) but please ask your doctor about the blood in your urine.

I just wanted to add that when I was first diagnosed 8 years ago, I found the ICN Patient Handbook really helpful - and I've continued to refer to it over the years. It has a ton of great information on virtually every aspect of dealing with IC.

Good luck and take care :grouphug:

Hugs,
Alexa

[SharonA]

Just wanted to add my :welcome: to you.

I am one of the fortunate ones who, with the right treatments and meds, live a pretty normal life despite having IC. Most days I feel good, but I do have those days when the burning, frequency and urgency kicks in. Nothing like I had in the beginning, but still uncomfortable. I find that the flare will go away after awhile if I take it by the horns and react by drinking a lot of water to dilute my urine and flush out my bladder. I also take two tablets of a product called Prelief along with the water. Prelief is used to reduce the acid in food so it does not cause so much acid in your urine. I have found that it works for me when I begin to feel the burning in my bladder. I am not sure if this works for anyone else, though.

Hope you begin to feel better. :)

[Christine44]

Hello I'm Christine 44,
2 weeks ago today I had Laposcopic surgery. I have Endometrios along with IC.. They burned off the Endo and removed a cycst(sp). I had symptoms for at least 7-8 years. I get very bad cramps that ball me up and the only way they would get better was when I had a bowel movement(diarrea). For a long time I just ignored the pain.Ex-husband didnt believe me!! Was gonna finally get tested for Endo and became pregant after 10 years of trying...pain kinda went away..then ignored pain agian. Now have 2 boys 6 & 4 years old. The last 3 years would tell my doctor at yearly exam about the pain basically said it was in my head. This last year i hurt my hand went to see the on call doctor and I liked him so I went to him for my yearly exam and he right away did a pelvic ultra sound and sent me to a great OBGYN. Without test he told me I probably had IC. So he did the Lapos. and found both Endo and IC. Him and his wife both specilze in this field so I lucked out on having them in my small town hospital. I just had my 3rd Instillation of Heparin today. I will now go once a week for the next 6 weeks and see how it is doing. He trying to get Elmiron approved by my insurance. It looks like this group is gonna be helpful to me and other newbies... I print out alot of info and me and my future husband talk alot about the painful sex he is a very understanding person and helps me out alot.
Thanks for your time..Christine
What is Marshmellow Tea I see alot of people use that?

[~*~Christine~*~]

:welcome: :grouphug:

[Katrina]

:welcome: Shell
:welcome: Chrinstine
Flares are not the same for everyone. Nor is each flare up the same for you. A flare is anytime your symptoms increase from your norm.


There are a lot of helpful and IC friendly stuff at the ICN store http://www.icnshop.com/


http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

I myself haven't tried marshmello root tea but it is on my list of helpful things for a flare.

Marshmallow root (althaea officinalis) helps sooth irritation and inflammation, can help spasms

[bigred]

Hi and welcome. A flare up is when you have pain in the lower abdomen and the bathroom is your best friend. If you are having blood in your urine then you need to talk further with your doc.