IC Hell

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Hello,

I was just diagnosed with IC this week. They say it's a 99.9% chance that's what it is. For the past 2 weeks I have been in and out of clinics and ERs all this time for pain and frequency of urination. It started out with a home UTI test which came back positive. So I went to the Dr. where they said it was positive also and put me on Bactrim (which swelled my Urethra) then Cipro (which sent me to the ER because my throat swelled up). They then did a urine culture (I have had 5 in the last 2 weeks all negative). I have had 2 bladder and kidney ultrasounds - negative and a CT scan - negative. Also all blood tests come back normal. I finally was referred to an Urologist from the ER. He's a 'progressive' doctor in the field (Dr. Davis) so I did have some hope. Tomorrow I am going in for a Cystoscopy.

Here's my question:

Will this ever get better? I am on some pain meds (Nur-something) and anxiety pills and Vesicare (all for a week). I have also been drinking the baking soda mixture daily. I have found little to no relief. I still can't sleep more than 1/2 hour without waking up needing to pee. I am so miserable. I can barely eat enough to keep it so my meds don't make me sicker. I read your stories and short of pure remission I don't know how you do it. I wish I had pain more than the frequency I deal with. No one seems to be able to help me with that one. Any ideas or suggestions? I can't go on living like this.

ETA: I LOVE Fast Food and Red Bull. I know those are big no-nos with the IC diet. Is it possible to have those occassionally or am I banned from them forever?

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

Rather than thinking of banning anything from your diet "forever" --- try thinking of getting diet under control to help you feel better NOW. You'll find the latest food list at the link in my signature below.

Don't give up yet --- it may take a little time to find what will make you feel better, but nearly all of us do find effective treatments that allow us to live normal lives. It sounds like you are on a fast track for a definite diagnosis.

Sending healing thoughts,
Donna

[meResque ICN Member Find all posts View Profile Close meResque]

You sound so sad and desperate, I couldn't not respond. You also sound JUST LIKE ME, and probably like MANY of us at the time of diagnosis.

It does sound like you're going to get this figured out very soon, which is a GOOD thing. Don't despair about the diet. I remember standing in the grocery store with the IC Diet list in my hand, and an empty cart, feeling like I'd never be able to eat ANYTHING GOOD EVER AGAIN. And yeah, at that moment in time, it can feel like the end of the world. It's not. I promise. You can definitely eat fast food again. I eat WAY too much of it!!! What you order may have to be adapted a little is all. Really, the diet is all about adapting. I'm used to it at this point, and it's honestly no big deal to me. You will figure out what you can handle and for many of us, that even means the occassional cheat is okay! I even have (okay, had... not drinking currently due to pregnancy) Thursday night wine night with my husband!

I'm not in remission. I've never been in remission. I AM well-controlled by the diet, my meds, and maintaining a low-stress life. I go to work every day, I hang out with friends, I have a healthy and non-painful sex life. I barely pee more than the average person on good days! I do have days where I need a Vicoden, or days when laying on the couch and watching a movie is all I feel up to. But I also have days, lots of them, where I do not give my bladder, or this disease a moment's thought.

It will get better. As Donna said, after diagnosis, most of us go on to lead normal lives. I do!

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Thank you both for your kind words! It definitely gave me a lot of hope. I had the cystoscopy today and it's confirmed I have IC. They even gave me pictures and it looks like someone threw acid in my bladder. I am happy I have a diagnosis and can move on. We're doing a combination of meds (one cost $500 with insurance OUCH) and diet. If they $500 one isn't a 'one shot healer' I will have to try some others but I am happy to start my elimination diet and get better. I will definitely be checking around here to find some good recipes etc. with the foods I can have. Thanks again for the support!

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

It sounds like you may be on Elmiron --- which is the expensive one that many insurance companies will initially deny. I suggest you appeal the decision on that one. Your doctor will need to help, but most insurances will pay if it's appealed.

Elmiron can take six months or longer to become effective so I suggest you begin the appeal right away.

Warm hugs,
Donna

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Indeed it is Elmiron. I am going to talk to my doctor on Monday and see what we can try and do to get it cheaper for me. I did shell out the cash for this months supply; if I need it I need it. My insurace did 'cover' it but that only knocked it down $100. So hopefully something can be done with that.

[Melanie526 ICN Member Find all posts View Profile Close Melanie526]

Have you ever tried to do mail order on your prescriptions? I can get a 3 month supply of Elmiron (or any name brand med) for $25. It would normally cost me almost $200 for the same amount of Elmiron.

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

I haven't had a chance to look in to that yet. Thanks for the idea though.

[kadi Support Leader Find all posts View Profile Close kadi]

I don't know about the cost of Elmiron, but I get my Heparin through my insurance company mail order center and I pay $10 for a 3 month supply. The cash price is listed at $3,000 for that same amount of medicine- I do the home instillations twice a day. (The $3,000 price tag is obscene and I wouldn't be able to afford it if I didn't have insurance!)

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

I don't even know if I am going to make it that long to find out. I feel like I am dying - literally from the lack of sleep. The pain sucks but the frequency is what is getting to me. Every 10 minutes. And I have had to strain (I know it's a no-no) to get some pee out. I wish I could wear diapers but when I can't even pee sitting on the toilet I can't pee lying down. I am on my second day of the IC diet and all I have to show for it is a stomach ache along with everything else. I know I just had a camera sent up my vagina but I just want a sign I am going to get better. I don't think I could live this life much longer.

[kadi Support Leader Find all posts View Profile Close kadi]

Hang in there, I do know what you are going through. When I first got IC, I was voiding 60x a day, couldn't sleep for longer than 15-20 minutes at a time. I even tried to sleep on the toilet, I was so desperate! Once I got on Elavil for a few weeks, I was able to sleep. The diet helped. And then the home instillations gave me my life back.

But, I never forget how very very sick I was in the beginning. Please don't give up. I was so sick and my doctors were so hopeless toward me - but today I have good quality of life again, work full-time at a job I love, exercise (today I took a 90 minute hike at a lake near my house), attend church, travel. I still follow the diet, still have flares, but nothing like when I first got IC.

You've barely scratched the surface of IC treatments. It will get better once you get your diet managed (it took me three weeks of strictly following the diet to see results) and find your combination of treatments that work. And please remember that the vast majority of IC patients get better and go back to "normal" lives. They're just so busy living them that they don't post here as much as the patients who are sick. I would even say that in some ways my life is better today than before I got IC. I have a far deeper appreciation of things that other people take for granted.

Hang in there, take one day at a time, try to do small things to take care of yourself (re-read a favorite comforting book, put a pile of dvds - I get good ones at the library - by the tv for distraction, do a favorite hobby), and know that with time, patience, and a complete treatment plan (if you look below my name, mine is very comprehensive, most people don't need quite that much - but it gives you an idea of the range & scope of things to try), you will feel better!

[nineteenwinters No longer active Find all posts View Profile Close nineteenwinters]

Thank you Kadi

I really needed some hope and your comment gives me some. I am going to go to an IC support group on Tuesday to hopefully gain some more hope. Just talking to people who know what I am feeling gives me relief (IE Why can't you just wear a diaper?) I am afraid I won't be able to do home instillations (they can't catheter me with a ped. sized one unless I am knocked out. But I definitely am holding out hope that these pills and the diet will work. I also eventually want to get in to some of the exercises/physical therapy down the road. I think that would help a lot. When I get my strength back I think I will also start to have a go at Yoga (just through my Wii right now).