Newly diagnosed with IC

[kittymom]

:) HI everyone,

I have read your measages for a few weeks now.. I was afraid to join in for some reason today was my day to join in.
I was diagnosed with IC in July they did a bladder biopsy and scope I started taking Elmeron. I have also had repeated bladder infections, 2 weeks ago I had a procedure were they filled and stretched my bladder, because the pain was the same although I was on Elemeron I am just starting to feel normal again from the procedure with just some pressure on my bladder.. not sure if the procedure helped or not. I am totaly disgusted with the pain and pressure, next step my doc said is to make a mixture of meds and put directly into the bladder.. is this normal for anyone out there with IC.

Thanks for listening

[hurt]

Yes, this is normal I have had several rounds of bladder instillations. You will probally need more than one for you to see if it helps you or not. I usually have 3 like two days apart then I seem to get better slowly until I have another flare and then it all starts over again.

[baybiker]

I had instillations for 10 weeks straight (once a week). They didn't help. Then, they did surgery. They found that 1/3 to 1/2 of my bladder capacity was filled with scar tissue. That was a month ago. The pain after was horrible. I am now starting to feel human. I am working out and will go back to work on Monday.
Try the IC diet- a lot of people say it helps a lot. Heating pads, baths (without bubble bath).

-Traci

[michelesgirl]

Traci...sounds like things are looking up for you. : ..glad to hear about you being able to get back to work...
I have heard that exercise works...could someone explain how this help ? We have a treadmill and I have told my daughter to try to get on it for at least 5-10 min. a day...she says the pain makes that impossible..she feels terrible..walking is the last thing she wants to do.. :

Michele

[Dixiefireball]

:hi: and :welcome: to the ICN family.
have you tried the ic diet yet this could help some of your systoms you can find that diet at www.ic-network.com/handbook you can also find information there on I.C treatments.
your doctor is either talking about a dmso treatment or a cocktail treatment to put into your bladder and this is very normal for i.c pats. some of us get much relief from it others not so good.
I do them daily at home when i don't have a u.t.i. the first round didn't help me, but later on i tried them again and they been a God sent to me.
One thing you might want to keep in mind is after each treatment you take ask for a sample anti. this should help you from getting a u.t.i. and with our already upset bladders we dont need to make it more pist off at us.
Please feel free to ask all the question you need to we are here for you we care and understand
sending you hugs and prayers
Rhonda

[traceann]

Just wanted to add my hello, and welcome!!! And I just love your screen name, it's really cute!! Sounds like everyone has already given you really great advice, so I will just leave it a big Hello, glad to have you! (it took me a few weeks of poking around before I jumped into the posting community here, and I am so glad I did, it's been a huge help for me!!)

Hugs.
Tracey :)

[kittymom]

Thanks for your responces.. I have to figure out how to use this reply not sure if this is a general reply or goes to all of you. I am at work I will look into the message boards when I get home..

Thanks for your kindness

[SharonA]

:hi: and :welcome: Glad you decided to join in. Looking forward to getting to know you. :)

[trytosmile]

:welcome: to the gang...

Hopefully the Elmiron will work for you. It appears to be the first step that a urologist takes and for most helps. Unfortunately for myself it didn't, the side effects where horrible. I went from Cinderella to Sybil in 2 seconds or less. Urologist finally took me off because of the side effects and it wasn't helping the IC enough to make a difference.

I have been using this chat tool for a couple weeks now myself and it is a great place to go. Lots of great people that listen and understand your pain. Not to mention a great place to vent.

Hope things work out for you.

[Rosalie]

Hello and Seasons Greeting from Downunder
Actually I don't like that expression, because I want to say "Down under What?"
Or perhaps I should say that you are "Up and Over?" The silly season seems to have gotten to me, sorry.
You have taken a great step in joining in on these boards, one which you will never regret. There is so much help and advice here. One suggestion from me is that if you are spending much time sitting at the computer, get a donut cushion. They are wonderful.
Rosalie

[mae21]

hey im mae im 21 and i am a new ic patient. my doc thinks i have had this disease for several years. i have been treated for uti's my entire life, 6 months ago they did a hydrodistention & a cystopy on me and put me on elavil, elmiron, & atarax, i couldnt tolerate the elavil-it gave me mood swings, but now i am on elmiron and atarax's generic brand along with proseds to ease the pain, but they dont seem to work well enough, i also have hot flashes and feel nauseous before a bladder attack and very cold after it subsides(only with the help of proseds now.) i am still in horrible pain and i need to find some other way or a new doctor. i also have vaginal pain. i am planning my wedding for next october and i dont want my first time to be painful and horrible, does anyone know how far we are from a cure, i can barely eat anything without it upsetting my system, and i live on prelief! does anyone have any suggestions or help!?? ps.my fiance' is horrified when i have bladder attacks! and i still urinate about 10-20 times during the day, what else can i do, does anyone else have my same symptoms with the hot flashes?? i feel so alone in this because no one around me has heard of this!;(

[michelesgirl]

My daughter also says she gets these hot/cold flashes when she awakens in the morning then the pain gets bad...we thought maybe it was a hormonal thing..due to her being on Lupron...or a withdrawl sympton from not taking painmeds all night...she takes heavy duty meds...enough to put down an elephant !!! It sounds like everyone has all types of symptoms with this illness...She just turned 21 ...having a hard time dealing with this...it's only been 2 months since she has been diagnosed but almost a year in pain trying to figure it out...

Michele

[~*~Christine~*~]

Welcome former lurker :welcome:

[kittymom]

I am soooooo glad I joined this message board.. it's GREAT to have people understand my problems. my friends are tired of me not feeling well and my husband said to me last night why can't you get anything normal.. as I have a hot pack on my bladder and down urised .. Hate men.. so I put myself to bed at 8:00

Happy New Year to all

[traceann]

Mae,
Have you looked into the IC Diet?? I know it has helped me and is one of my biggest and most important management tools for this wretched disease. I too take Elmiron and Vistaril (hydroxyzine, like Atarax).

When I first began treatment in full swing (elmiron etc.) I too would have horrible vaginal pain, but I have noticed that now since I am starting to get my IC under fairly reasonable control, that too has subsided. Actually, I was just thinking and noticing that last night, after looking back at my frequency/pain log (also a great tool, I can see how far I've come, it's also where I keep track of my foods I eat as I am still in the adding things back into my diet phase of the IC diet)! My vaginal/vulvar pain started in Aug/Sept, and would be horrible around ovulation and then carry on right straight through to my period. This is the first month (starting period any day now) I have not had any symptoms of that nature. I had a few incidents around ovulation, but nothing like it's been. I use cold packs, heat whatever it likes at the time to help ease the pain. It's horrible!

And I too would get nauseated with the pain, and very very cold. I can completely sympathize with those two symptoms! UGH!

Here are a couple of links for you, one is for the handbook...a major tool for me and most around here, and one for the list of foods. I use the column that says "probably ok" as my baseline and am slowly adding things form the "maybe ok" list in one at a time. If you haven't checked it out, I urge you to give it a look. It's something you can do yourself, no doc required!!! I feel that for me, that is what helps me feel decent, since I have only been on the elmiron for 1 1/2 to 2 months.

Here's the links: handbook- "http://www.ic-network.com/handbook/"
foods - http://www.ic-network.com/handbook/diet.html#list

You will tons of useful info in the handbook, I can virtually guarantee it!!! Take care of yourself, and keep on posting and asking questions! I am new here too, and in one month I have learned so much and have a pretty successful IC Tool Kit!!!!

hugs,
Tracey:)

[kadi]

HI Kittymom,
Just a note to say hello & welcome! I am one of those who have been very much helped by DMSO cocktail instillations (DMSO, Heparin, SoluCortef, Sodium Bicarbonate & Marcaine). I had these once a week for 6 weeks & now only once every 4-6 weeks. I also take Elavil 20mg, Ditropan 5mg & birth control pills. All of these meds have helped.
Just keep in mind that IC is very individual --one person may not have been helped by the very thing that has very much helped someone else! Hang in there, do try the diet for at least a month, and be very kind to yourself in the meantime!
I was afraid I'd never feel okay again and most of the time now I am okay.
Wishing you better days soon!

[LeahT]

Hi all, happy 2005! I was only diagnosed 3 months ago and am not on any meds yet as we are still deciding how to go about this. I did find major relief in the "elimination diet", and also keeping a comphrehnsive food and water and pea diary. The diet was hard at first, but at some point we all need to take responsibility for ourselves and do what we can to help ourselves. After a week of the diet my tastes really did start to change and I have become very accustomed to rice products and elininating all of those aggravators like chocolate, caffiene, alchohol, seasonings, etc. Also, yoga stretches help me a lot. All of these little tools have kept my vulvar, bladder and back pain at a minimum and sometimes even nonexistant! :) Be well, glad you could join us! Thanks to all above too for all of your suggestions.

[tompkiae99]

Hi everyone I hope you all had a great holiday. I am having a really tough time right now. I have been flaring pretty bad on and off for 3 going on 4 months. It all started when I stupidly went off my Elmiron for a week big no no that was. Up until then I had a been pretty much symptom free I would usually have one bad flare a year that woul last at most 2 months. I have been to my Uro and had 2 Elmiron instills without the DSMO without luck. I have finally scheduled a DMSO for this week in hopes it will stop the flare and return me to remission. I am just so scared I am going to be stuck like this forever I was fine and now this. I have wonderful boyfriend who is so understanding thank god. All I do now is cry all day because of the pain all the things I can't do like have sex, exercize, ride my horse. I am also so scared about the DSMO treatment of the pain they cause and if they will even work. Please if anyone has any positive info to share please do. I am at my witts end here. Thanks

[LeahT]

Hi above me on the message board, this is Leah. Read you "plea". Sorry to hear that you are under the weather, I don't know what to tell you to do except the patience thing. Course, you know that. Different stuff works for everybody of course but I found that I am at my best when I go back to ground zero and do only bland foods until I'm feeling myself again. I feel healthier and I can even ride my horses. I can't ride them like I used to of course, but going for a long walk in the country at a walk or easy trot is nice too. I'm glad to hear that your boyfriend is a gentle soul who understands your condition. That helps a lot, doesn't it? I wish you well, this too shall pass.

[Betsie]

Wow,

Welcome to so many here, I wish you a Happy New Year and many constructive times here while you figure out your treatment plans! They never feel as though they will help and you are very likely to hear lots of bad day stories here, but I am betting that many of us have been on the right path, which differs vasty and are living life in a very normal aspect.

Check out all the handbook and the main page if the ICN network has to offer....I am still finding new things every time I go there.

Cheers! :)

[trytosmile]

Hi Tompkiae99..

Sorry to hear you are in so much pain physically and mentally. I'm in pain 24/7 and find that if I can control the "mental" aspect, the physical pain lessens. For me, stress can trigger the pain almost immediately. I too am in a serious flare. What works for me and may help, stick to the diet to the letter, I soak in a warm bath 2-3 times a day with epson salt, put on my meditation music, turn all the lights off, candle and veg...maybe even a good book. Light yoga stretches also help me out and then there is everyones best friend "the heating pad". Are you back on the Elmiron. I tried to take myself off one of the medications I was taking because of the side effects and like you found out...a no no. My doctors response was..."did I not put you on this for a reason...did I say you could discontinue to take it" ... my response..."oh, um....no" Guess I was told ... lol :ignore: Needless to say I went back on the medication and the aniexty calmed down, then the IC was a little better. Unfortunate Elmiron or DMSO didn't work for me, I have tried a other treatments a couple of times, first time helped second, not a chance. Maybe the Elmiron isn't working this time. I'm no doctor but just from my experience ?

Hope the DMSO works out for you. Try to stay calm and not think about the pain, I know easier said than done but doing in with positive thoughts helps.

Keep me posted on how you make out.

:grouphug:

[mae21]

hello everyone! i am so happy I have been without a bladder attack for 2 days! This is a record for me! Michelesgirl, is your daughter on proseds? that is the pain med that i am currently taking right now and it works fairly well. but sometimes the pain is too bad and i revert to the fetal position in my bed or on my couch and cry. i try not to cry often because it promotes stress, and my doc informed me that stress can cause a bladder attack so i am attempting to make my life stress free! but as you all know that can be stressful in itself! I have also heard of pyridium, i plan to talk to my doc about that one soon, supposedly it is stronger than prosed. i am not opposed, anything to help me function normally! good luck everyone,and keep your hopes up! this isnt the worst disease, i just finished one battle with cancer! i figure if i survived this i can survive ic! hugs and best wishes! mae
:woohoo: :grouphug:

[kittymom]

WOW :)

God Bless You !! you have come along way with your cancer next step is to get this darn IC under control.. I can't tell you what has helped me yet I am still in pain but the pyridium does sooth the burning.

Good Luck and best wishes

[mae21]

hey everyone, i hope today has been good for everyone, im stuck with the sinus crud right now and it stinks! plus i have had a constant bladder attack for a week now, but i is starting to subside a little. i have to take it day by day. i am about to quit my job and start another soon, b.c my job promotes stress and we all know what that does to an ic patient, the manager thing just isnt for me-my boss wants me to do his job and has no regard for me or anyone else. so ya, that is actually the good news! i will be so happy when i start my new job! i figure its my life and my body, if it takes changing jobs to keep me healthy-its definately worth it!!! I just dont want you all to forget about yourself., you have to make yourself happy before you can make anyone else happy! thankfully jonathan has been here for me! god blessed me with a wonderul man! god has blessed you all with people he put in your life to help you out too, sometimes they arent even who you expect them to be, but they are there!! chins up everyone, and love you all! big hugs! mae