Please can anyone help me??

[christym]

I was recently diagnosed with IC and I feel like I've been handed a death sentence. I am currently taking Urelle, Lyrica and Toviaz. I was taking demerol for the pain but because I developed severe twitching my doc d/c'd it. I have had two bladder treatments of the lesser dose of drugs and on Wednesday I will start DMSO treatments. I also began taking Elmiron. I feel like my llife is over. I am scared and depressed and feel like I have no reason to live. I am in love with someone who I feel like I'm never going to be able to have sex with again because of my symptoms. Is it true that every time you have sex it can trigger a flair up? I feel crazy from the pain and am worried that I will lose my job and my friends. Will I get better? I am desperate and scared and depressed. Can anyone offer me any encouragement or tips? I bought the book IC guide and the cookbook. Am so scared to put anything in my mouth in case it would aggravate my symptoms.... please anyone help me.

Christy

[nnj925]

your going to be ok!!!! millions of ppl have this..and live full lives...will you have to adjust some things...Yes...will you have to deal w/ things...yes...but try the meds..you never know they may work wonders for you and you will not even have symptoms...

Please do not think you have to die..or want to...nothing is that bad. And as far as sex and stuff if your boyfriend is really in love w/ you he will work through this with you.

Try to stay positive.!!! Do research and chat w/ ppl here to help you through this time.

[some_guy]

Hi Christy,

Based on the description of things you are doing it sounds like you and your doctor are attacking it full force - REALLY that is big time in your favor. Lots of people wallow around not knowing or having docs that don't know about it and treatment is sometimes mix and match and late. If I were a betting man I'd bet that the good start you have going will have you feeling better faster and who knows maybe even mostly symptom free..

[ICNDonna]

I understand how you are feeling right now;I felt the same when I was newly diagnosed. At that time (1975) there hadn't been much, if any, thought of a diet connection. I learned on my own that some foods and drinks are a problem for me. Interestingly, when the printed diets were first published, they listed all of my triggers.

Hang in there. It may take a while, but most of us do get better. I have led a normal life for many years. Yes, I have occasional flares, but most of the time I feel good.

Warm hugs,
Donna

[KarenAnne]

:welcome: Christy,
You are feeling exactly like I did when I was diagnosed. It is very overwhelming to get a diagnosis of a chronic disease. I developed IC two months after my wedding. I agree with the previous poster, if this guy really loves you, then he will stick by you through anything. My wonderful husband is my biggest supporter. I was very sick with the IC when it started & had to avoid relations. It never affected our relationship. And no, once your IC is under control & you are on a treatment plan that works for you, you will NOT flare EVERY time you have sex.
I will offer a few things that helped me because I was very overwhelmed & had trouble functioning when this started. Try to have control over the things that you can, such as diet. I immediately weaned off coffee. I ate from the first column only on the diet list. I cooked meats plain, grilled, or roasted, or sauteed them in evoo. I made real mashed potatoes & ate them with a little butter,(or baked, or roasted) I used only butter in the beginning. Eggs were very soothing & easy. Plain steamed or boiled veggies. Brown rice, white rice, there are several frozen varieties that are easy when you're not feeling well. For treats, vanilla ice cream with carmel sauce, sugar cookies, caramels, white chocolate, chips. I posted the diet on the fridge till I got used to it.
The hardest things for me were finding a good dr. & trying alot of meds before I responded. I now take amitriptyline(generic elavil), Prelief, diet, & physical therapy. If I'm flaring I'll take a pyridium. Also when I'm in a bad flare I drop of a urine specimen for culture to rule out a UTI. I'm a big believer in physical therapy for IC. PT really helps with the pain.
I read everything on here I could. I watched all JIll's videos. I bought Dr. Moldwin's book on here & read it. I asked the support leaders ALOT of questions. There are great older posts on here by "Briza". Search her old posts for very useful info.
And I got some talk therapy to help me deal with things emotionally. I realized I was complaining to my husband continuously about my bladder. My therapist helped me to find joy in little things, like watching a funny movie, reading a good book, or laughing with a friend on the phone. And over the next 8 months I got better & better every day. Now I pretty much live a normal life.
I suggest keeping copies of all your tests & medical records, & also your symptoms. There is a new patient kit you can get here & it helped me. You are going to feel better, you are going to get a handle on your illness.
Big hug, Karen