scared and alone

[erinboo]

hi guys...
i was just diagnosed with IC in early january... im really having a hard time coping with it right now. i havent really had any flares until this monday... and it just wont seem to go away. i really need some words of encouragment. im scared that my IC will get worse? is that possible? im constantly worrying that i will wake up one morning and i will have new symptoms that are worse than the ones i deal with now...can anyone help me

[dyno]

Hi Erin,
Welcome :welcome: to the ICN. You will find so much information on this website. IC is tough at times, no one on here will dispute that. I have had IC for almost 33 years now, I am almost 50.

I am better right now than I have been in years. I watch what I eat & drink and have found some treatments that do work for me, most of us do.

I would encourage you to read the patient handbook, the link is in my signature. There is a lot of information there. If you aren't following the diet, please check that out, it helps most of us a lot.

For many who are doing well, they don't come here, they are out living there lives.

So I do encourage you to learn what you can, work with your Dr. and do what you can for yourself and your IC and you should do ok!:)

[mlzippy7]

Hello and :welcome: to the IC network!!

[llwd]

I was diagnosed last summer. My symptoms are mild most of the time. Sometimes I have a moderate flare. I always worry whether I will feel like that the rest of my life. It's very depressing. The flare usually lasts only a week for me. It doesn't get worse for me. Hang in there. Most likely you won't feel like that for very long. Are you taking any meds?

Lori

[ICNDonna]

My IC was diagnosed in 1975 --- that's 33 years ago --- and if anything I am better than I was at diagnosis. I do have to avoid some foods and drinks, but that has become so much a part of my life that I rarely even think about it.

I had a mild flare last night, but yesterday I picked up a corn chip and stuck it in my mouth before I realized it had jalapino (not even sure I spelled that right!) I immediately drank a full glass of water, but it still did a job on me.

Once you get used to an IC diet, it won't bother you. It helps to concentrate on those things you CAN eat, rather than what you can't.

Sending healing thoughts your way,
Donna

[erinboo]

thank you so much for your support... i just feel like im having a break down. i went to the doctor in jan when he diagnosed me and he was very brief... he didnt make it seem like having ic was a big deal. he put me on vesicare for the frequency and gave me uro blue for the pain.... i have not been following the diet at at all (BAD IDEA!) i ran out of vesicare about 2 weeks ago and stopped taking them because i felt fine (another BAD idea!) i noticed the pain on monday night and a lot of frequency so i refilled my vesicare...but it takes a few weeks for it to start working. now, i have no pain but a lot of frequency. im planning on scheduling another appointment with my uro so i can talk about more treatment options. any ideas?

[mlzippy7]

Hi Erin,
I would really try hard to follow the IC diet. For many it makes a big difference. I would try and talk to your doctor about the things you are asking us here. I would tell him about your frequency.
If he isn't willing to listen to you(I have had enough doctors like that) then I would try to find a different doctor who will listen. Have you checked the website here for a list of doctors near you?
Hang in there!!