Hi ,i Wanted To Intoduce Myself

[RORI]

Hello I Am New Here To This Site, I Have Come Here For A Month Just To Check It Out, But Today I Decided To Join... It Has Been What Seems Like A Long Road For Me , Just Like I Have Read For Most Of You It Has, I Am Thankful That There Are Some Happy Endings Here... I Have Been Dx With Ic . A Month Ago I Had The Biopsy Thing For The Second Time. This Doctor Finally Said This Is What I Have After, Years Of Pain And 6 Surguries In 6 Yrs, I Have Had Everything Taken Out Because It Seems To Me They Have Done Process Of Illimination, But This Last Time They Went In To Check For Adhesions And Also Was Checking For Ic And Found That My Bladder Was Very Very Inflammed. The Hydro Thing Did Not Stop The Pain I'm Not Sure Why. The Doctor Doesn't Know Either. They Are Now Doing The Treatments In The Office Where They Put The Medicine In Your Bladder (elimron Solution) I Have Only Had 2 Of Those Treatments I Have Not Felt Better Yet, The Doctor Wants To Send Me To A Pain Management Dr..... This Stuff Is All A Bit Overwhelming To Me And My Husband, Because Of My Pain I Can Not Work And The Finacial Strain Has Put A Strain On Our Marriage.... I Pray Dailly That God Will Give Me Wisdom On What To Do , It Would Be Nice To Really Have Someone To Talk To That Is Going Through The Same Thing.... My Story And Thoughts Are So Much I Could Not Begin To Write It All Down Right Now So If Anyone Feels Lead To Answer Me I Would Be Thankful. I Have Lots Of Unanswered Questions........

[ICNDonna]

I'm very glad you found the IC Network. You'll find a lot of support and information here.

My first suggestion to you has to be to read the information in the Patient Handbook at http://www.ic-network.com/handbook --- and begin an IC diet today. Many ICers find that single step offers substantial relief.

There are many, many treatment options for IC, which you will also find in the handbook --- and I suggest you discuss this with your urologist.

It may take a while for you to find exactly which treatments work best for you and which foods and drinks are a problem, but most of us do get there and most of us feel good most of the time.

Sending a welcoming hug,
Donna

[patricia1]

Hi Rori I wanted to :welcome: to the IC website. I have had IC now for almost 9 yrs and I am 33 yrs old. IC is very ugly disease. Not every treatment works the same for everyone. To let you know when I have had a hydro (have had 2) they have NEVER helped my symptoms and they have never helped my pain either. So please dont feel as though you are alone. I am not sure what surgeries you have had to take things out, but I had a hysterectomy done (before I was diagnosed with IC). We thought my pain problems where come from the female organs. Alot of time this is done with women they have a lot of uneeded hystrecomty because there is just not alot of knowledge out there with the medical community. Have you started the IC Diet? If not there is a listing in the Patient handbook that is on the website. I understand about the finiancial end. I have not worked since May 2002. I finally got approved in November for SSD and starting receiving my backpay and regular payments in Feb of this year. We were on the verge of losing everything. In fact my house was in the final stages of repo. Luckly we were able to save it. Have you thought about applying for SSD?? There are some of us on here that are on that. What meds do the urologist have you on. I know you said you were getting instills of the elmiron but are you taking it by mouth. What about atarax or vistril, the antihistimine. Finally are you taking anything for pain? I get so many lortabs a month from my gyno and my uro prescribes Ultram also for my pain. If you would like to talk you can email me anytime. trishawalker@bellsouth.net. I know this disease can take a toll on a person especially just finding out that is what you have. I have learned not to let this disease run my life. Although it took me along time to get to that point. Best of luck to you

[traceann]

Hi there! I just want to add my :welcome: to the mix! You certainly have found the right place to come for support and lots of practical information! We have all been there, I was a lurker for awhile, then I finally posted and it's been wonderful ever since. I have learned so much from these boards and this site, it's just amazing.

Have you started/tried the IC diet??? It's a huge help to me, along with my meds. (I currently take Elmiron, Ditropan, and Vistaril) The diet is a huge tool in my comfort level! Here's a link directly to the IC diet foods list - it was suggested to me when I first came here and so lost and confused on where to begin!

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

What I did, was start with the "usually ok" column, and built a diet out of just those foods for about 3-4 weeks. Once I got my bladder somewhat calmed down, enough to be able to actually tell if the pain was food induced, vs just pain 24/7, I added one thing at a time from the "may be ok" column. If after introducing a new item, I felt no siginificant aggrivation or increased symptoms, it became a food in my "ok list". If I had trouble with one, I put it on the no-no list, maybe to try again later...maybe. It's slow going, adding one thing at a time, but soooo beneficial in helping you to find your "trigger" foods. I have discovered I can eat more than I thought I would able to, and now with a Prelief "insurance policy", lol, I can cheat occasionally and eat an item or two off the "usually problematic" list. But, again, for me personally the diet plays a huge role in how I feel, and it's very worth it to have to skip chocolate so I can go shopping with my girlfriends or whatever!!!! :)

There's lots of other things I have learned here in the realm of self-helps, just loads of things to do to make me feel better.

My heating pad- my best friend, would be lost without it!!
Thermacare Heat Patches - wonderful! Great for sleeping or any other time you need to be "wireless", like for work or travel.
Frozen water bottles - I kept a couple from when I have bought some, filled them up and popped them in the freezer. Great for travel when my urethra is acting up...just pop it between my legs, kind of sitting on it, and it works like a charm for me!
OTC Pyridium - I buy either brand, Uristat or AZO Standard. They are an analgesic for your bladder, numbs things up, works on frequency and urgency for me, and when my bladder feels like a well-used basketball, lol.
OTC Motrin - Alot of times I can take 800mg of Motrin (after discussing it's use with my doc first,when this all started) and it will calm my bladder down when I get the 'constant-need-to-pee' feeling or just plain old bladder pain.
Baking Soda - If the bladder/urethra burn is going on, I will drink a tsp of baking soda in a big glass of water and it usually does the trick. (be careful if you have salt related health issues, like high blood pressure etc)
Tums - work the same for me as the baking soda, if I don't have any baking soda handy, or don't feel like tasting the yucky stuff, I will take a couple of them.

Hmmm, that's all I can think of right now, but as you can see, I have learned alot in a very short period of time, and generally can take whatever has come my way so far, in stride. I have found ways to make myself feel better and be very comfortable with out having to call the doc with every little thing.

Sorry to get so long here, but this place is a wealth of knowledge! I hope to see you around the boards, take care of yourself!

Hugs,
Tracey :)

[Katrina]

:welcome: I am very happy you joined us! I hope you find this group to be as suppportive and informative as I do. :welcome: to the family!
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?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.

[Rosalie]

Just want to say Hi.
Everyone else is giving you such good advice. Mine to to stay glued to the boards. There is such support and comfort here.
Good Luck
Rosalie