New to IC

[mish]

Hello,
I was just diagnosed today. I've been having urgency and frequency problems since my youngest was born 10yrs ago. Mostly at night though. It has slowly gotten worse. I have tried Detrol and Enablex, given to me by my gyn dr, but they didn't work. I had an appointment with a urologist today, and he is starting me on Amitriptyline 10mg. I hope this med gives me some relief.

I've been reading this board all evening, and learning alot. But I do have some questions that I hope you can answer for me.

1) Will my condition worsen?
2) I don't experience any pain. Will I develop pain?
3) I have noticed that alot of people with IC have heartburn or reflux. Is this common with having IC?

Any info would be greatly appreciated.

Mish

[leelee88]

Hello Mish and :welcome: To the ICN!!

You asked these questions:

1) Will my condition worsen? Well mine did and then they seemed to level off and now are getting better with a combo of meds and diet.. BUT we are all different with this disease!

2) I don't experience any pain. Will I develop pain? Once again, I think I had IC a LONG time before I was diagnosed I just never had a name for it. At that time I did NOT have pain just pressure and urgency and frequency. The pain came years later.

3) I have noticed that alot of people with IC have heartburn or reflux. Is this common with having IC? I am not one of them that suffer from this.. I do have it sometimes but this is not a common problem for me..



BTW Elavil would be a good start in my opinion!

[mish]

Thanks for your quick response! I'm sitting here and wondering if I'm going to get worse, and the thought of having the pain is starting to frighten me. I'm 40, recently divorced and have 2 boys, my youngest has autism. I have alot to worry about already. I also don't have any insurance because I am working from home (trying to do this till my youngest is older).


Thanks again!
mish

[leelee88]

Well I truly think my problem was I went untreated for SOO long.. So now that you know what you have I do suggest that you do your homework and learn as much as you can about IC.. This forum is great! And has LOTS of info on here.. The Patient Handbook has alot of great info in it.. There is a link at the bottom of my page..

Also I believe getting on the IC diet and learning to try to control your stress plays a big role also..
But you just have to be your own advocate when it comes to this disease.. Knowledge is wisdom!!


BTW.. After years of fighting with the Drs we finally got a diagnoses of Autism for my step son.. Well he was diagnosed with PDD NOS..So I understand what you are dealing with there!! He is 13 and drs kept saying ADD or ODD BUT we could tell something was just not right with him. He was struggling..But anyhow.. I do understand! (((hugs)))

[mish]

Yes, I was looking at the handbook lastnight. Tons of information!!! The amitriptyline made me extremely tired so I went to bed!! I was able to sleep wonderfully, so that was great! I was going to look more closely at the IC diet today.

mish

[TexasHoney]

Hi Mish, and:welcome: family. I'm glad you are seeking treatment. This is a very tough disease to get a handle on. I hope things get better for you.

Hang In There

[BT2008]

Hey Mish,

I am so sorry to hear of your dire situation! Here's a (((BIG HUG)))

All of my answers to your questions would mirror leelee, because I suffered from frequency and urgency since ovarian surgery in 2002 (I went about every 30-45 minutes while awake and 3-4 times at night), but I did not have any pain until May of 2008. So, in my case as well, IC has definitely been a progressive disease over a six-year period!!

But--if you get help now maybe it won't ever get to the critical mass stage that it did with me (and many others). I never even told my doctors about the frequency/urgency because I assumed it was just my "aging bladder."

In addition to the Elavil, as leelee suggested and you have already found some success with, perhaps you could suggest to your doc that you begin Elmiron treatment sooner rather than later. That way maybe you can keep your bladder lining from the serious erosion that happens over time. That is what causes the pain! When your bladder has no protective lining, then the potassium and urea always present in the urine, as well as other toxic acids that we consume, are given access to the deeper layers of tissue and muscle in the bladder. And again, that is what causes the severe pain.

So, I am not a medical professional, but if you could somehow protect your bladder from further damage NOW, then it seems logical to me that you will save yourself a lot of serious pain and problems in the future!

And I hope you have many better days in the future!!

~Beth

[BT2008]

Mish...

p.s.
Since you don't have insurance, and Elmiron is very expensive without it, then check with the drug company that owns the patent to see if there is a financial break you can get because of your situation. Maybe they will be one of the more compassionate ones! And maybe your doc will write a letter to them as well, and be an advocate for you! You won't know until you ask!!

Here is an IC-Network link that will give you more info:
http://www.ic-network.com/forum/forumdisplay.php?f=78

~Beth

[statesboro]

I thought I would chime in. The main reason is simply because I was diagnosed without ever complaing of pain. That does mean I don't have any pain meds now. Oh! You have found a good place by coming on here. Besides, we will understand. Many people will not. I used to get heartburn and take this and that. Anyway, I have not needed anything for heartburn in many moons now. (no feeling of heartburn) I don't know your age, but IC has hit people of many different ages. (and even dudes like me) At least, you can know you are not alone. I used to feel like I must be. Take care and be good.

[mish]

Thanks for the welcome Texashoney!

Beth, I did notice that Elmiron was quite expensive from reading the other posts. Is there an alternative that would be cheaper?

statesboro, I'm hoping that if I reduce my acid intake, it will also help me with my heartburn. I'm also a coffee drinker, so it's going to be difficult. I stopped drinking carbonated beverages almost a year ago, and basically just drink water and coffee now.

Are the coffee substitutes any good? And where do you find low acid coffee?

mish

[mish]

Sorry, I have another question! lol

I'm taking zantac (generic) right now. Does this do the same as Prelief? I have to stay away from calcium. I had kidney stones and was told not to take anything with calcium.

mish

[BT2008]

Hey mish,

The only alternative for Elmiron, that I know of, is Heparin--which it is only $10.00 with my insurance, so I don't know how much it would be without it. PLUS...Heparin is not an oral drug, it is a liquid drug that is injected straight into your bladder via a catheter. These are called "bladder instills." I do these (with Heparin instead of Elmiron) twice a week. But they aren't cheap either! That is why I suggested going to straight to the drug company for help with the cost of Elmiron.

ALSO...I strongly urge you to stop drinking coffee completely!! I know it will not be easy! But I am convinced that drinking coffee/tea is one of the reasons my bladder is in the horrible condition it is in right now! I drank coffee/tea pretty much 24/7 for decades! As soon as I learned that it was an irritant to my bladder, I stopped immediately!! I don't consume anything that could make my pain worse! And, if I could turn back the hands of time, I would be much more careful with the amount of coffee/tea, wine, etc. that I consumed.

Please know that I really do understand how impossible it sounds to ever stop drinking coffee--I was a true-blue, dyed-in-the-wool, coffee hound!! So, if I can do it...anybody can!! I am now addicted to my water!! Who would have ever 'thunk' it??? :lmao:

Try to switch to an acid-free coffee (which can be really expensive tho') or start drinking hot herb teas instead, there are several that IC'ers can drink safely (caffeine-free, of course!). I drink hot peppermint herb tea sometimes, but I have even found I don't need anything "hot" or necessarily "flavorful".

Pain reduction trumps my taste buds every time!


~Beth

[BT2008]

Mish,

On the Zantac...I don't know it it does the same thing as Prelief.

Prelief works to directly neutralize the acid in the foods/drinks we consume as the digestion process does its thing, in much the same way that Beeno neutralizes the gas...(I think they are even made by the same company.)

You may be able to find the answer to your question on the internet (zantac vs. prelief, or something like that), or you can ask your doctor.

~Beth

[Sue10]

I truly believe that with the right treatment you do not necessarily have to progress with this disease. Most people on this forum has stated that once they were diagnosed and treated their symptoms improved rather than worsened.
My symptoms came on strong with great pain out of no where! Since treatment things are getting better.
Hold on to that thought and try not to fear you will ever get pain. It is very likely if you treat your bladder well with the right treatment and lifestyle modifications, you will improve.....not worsen!

I have learned that it is important to stay positive in your thoughts with this disease! This forum has certainly helped me do that. Now I come on here every once in awhile hoping to give someone else some support as I received and still continue to receive!

[BT2008]

Hey Sue,

I agree completely that the early stages of IC need not progress to the more severe stages if treated early!

I hope all of those with mild IC who read these threads will continue to stay on track with their treatments in order to keep it from getting worse.

Like you, my pain hit me right out of the blue. But now that I know what IC is all about, in hindsight I can see where I have probably had IC for quite a few years. I just didn't seek medical attention for my symptoms (I just assumed it was my aging bladder). But--suddenly being hit with the horrifying pain sent me straight to the doctor!!

~Beth