Hello! *waves* I'm new

[Elacey]

I was recently diagnosed with IC.I came across this site after my doc had mentioned I might have it before he ran my tests.It's so nice to know there is a forum out there that is so supportive!
I'm 23 years old and I was just diagnosed about 2 weeks ago.
What happened was that I kept getting frequent UTI's and I had no idea why.I had ruled out every explanation but,it had to be something.I went to urgent care and got Cipro.It seemed to take care of it but,I was still having horrible abdominal pain.I decided to see a Urologist and I had a cystoscopy done (which was SO not fun,esp. the after part) and there it was on the screen,I definitely had it.I was prescribed Elmiron.I've heard bad and good things about Elmiron but, I am not sure.Btw,it is SOOO friggin' expensive.I'm scared that when I do get a UTI,I won't know the difference between a UTI or my IC.I usually don't get a lot of burning when I do get a UTI,just abdominal pain so idk.I've also heard stories about how many people with IC have interrupted sleep because of frequent trips to the bathroom and I gotta say,I don't think I've had a good nights sleep in forever.Well,if you took the time to read this,thank you! I know I will enjoy meeting everyone.

[Sunflower2707]

I'm glad you found us! I am also new here therefore am still figuring out what to do with my (maybe IC). I have good and bad days right now..after my hydro/cysto I have been in a flare and although it's mild it is sill uncomfortable, but I am still positive it is going to go away soon and then I should feel good for a while.

But, there are plenty of people on here that are in remission or feel pretty good most days and I try to think that there is so many people out there who live with uncomfortable things everyday like a simple knee problem..there is hope in this IC world..during your flares enjoy your life at home..during your good times get out and live normally.

good luck

[Cassaundra]

You've found the right place.

Have you had a cystoscopy or a hydrodistention? A cystoscopy is when a camera is placed into your bladder via your urethra to look into your bladder to see what is going on. A hydrodistention is when your bladder is filled up with saline solution. While this is going on, this is done under general anasthesia because it is very painful. Blowing up your bladder with the saline solution promotes healing for some (like me) and flares for others. It also allows the doctor to see the bladder walls more closely to check out the damage or any other on-going problems. Be aware, that some people can have normal looking bladders (like me) but have IC symptoms while others have very damaged bladders.

Be sure to check out the IC Diet.

http://www.ic-network.com/diet/

And the IC Handbook.

http://www.ic-network.com/handbook/

There are several treatments for IC. One of which is the DIET and drink WATER. Be sure to follow it closely, and record each day in a journal to track your symptoms.

Also be sure that some water is more acidic than others. Some people's tap waters are fine, some aren't. If you aren't sure, be sure to stick with SPRING WATER. You can by pH testing strips to find out. 7.0 is the perfect point. Anything less is too acidic and anything more is too alkaline.

There are several combinations of treatments available that can help us gain relief.

The big three are:

-an antidepressant such as Elavil/amitryptiline. This helps the nueropathic pain to lessen as well as to help with frequency and nighttime trips to the bathroom.
-an antihistamine, such as Atarax/hydroxyzine.. Because of the chronic inflammation in our bladders, there are a lot of mast cells evident in our bladder, which cause inflammation. Taking a prescribed antihistamine helps reduce our mast cells, which help inflammation, and in the long run, pain.
- Elmiron. Part of the reason why our bladders are sensitive to foods is becaue of our GAG layer is damaged. Taking Elmiron helps replace this GAG layer and to help the organ repair itself. There are rare side effects, such as gastroinestinal upset and hair loss. Most people don't have this. If you do have stomach upset, try emptying the capsule into the glass of water. Sometiems the capsules cause the upset, not the ingredients.

There are also over the counter medications to try to. Such as ALOE, Cystoprotec, etc. Please be aware that Elmiron is the ONLY FDA APPROVED medication to treat IC.

To help urinary tract symptoms, you can take AZO urinary tract relief tablets. These are sold OTC. They are short term, however, and do not take them more than 10 days out of the month (as told by my uro) as they can cause adverse affects on your liver. Talk to you doctor about getting long term pyridum, a prescribed version of the AZO.

There are also AZO UTI test strips available too. Check those out to see if you do have a UTI so you don't always have to run to your doctor if you think you have one.

Also, there are things called rescue installations. These are medicated solutions placed into your bladder via a cathater (Be sure to ask for a small latex-free, lo-fric one, or use a pediatric feeding tube, like I do.)

There are several different types of installations:
-DMSO
-Elmiron (the liquid version)
-A cocktail made up with lidocaine (can be switched out), sodium bicarbonate, and heparin.

Also, some people find heat and/or ice helpful to help alleviate symptoms. I prefer heat, myself.

Other things that are helpful are:

-Tums or Prelief (found at Walgreens). These help take out the acid of "unsure" foods
-Warm baths with a bit of baking soda
- A quick, short term fix is a glass of water with a tsp of baking soda. Drink quickly! It tastes horrible! Be sure to check with your doctor about this People with needed low-sodium diets should not try this.

I hope that this helps and I wish you good luck!

[Elacey]

Thank you for replying and welcoming me! I'm glad I'm not the only new one around here Sunflower2707.
I hope you have more good days from now on! I know,the flares are ridiculously painful and uncomfortable.I hope you feel better soon.

Cassaundra,thanks for replying as well.
Your advice and info will help me a lot.At the doc they gave me a diet sheet and I was all depressed about it.I was like,"I can't have aged cheese?! Say what?!" I'm obsessed with cheese if you couldn't tell. :P
I'm going to try to follow it as best I can and like you said drink LOTS of water!

[Glenda2]

Greetings and Welcome Elacey.

I have been here about 5 weeks.

Diagnosed with IC on October 12th. via a Cystoscopy , showing my bladder was full of Ulcers.

Given a script. for Elmiron , but it makes me Way Too Sick.
So I had to stop taking it.

I am just putting up with the rechid pain.
Don't and Won't take Narcotic's , due to harsh side effects.
Won't take any of the other Drugs that folks use. Anti-Dep's and Benzo's.
My doctor discourages that.

IC is such a miserable illness to live with. The pain is untollerable.

I am glad you found the IC Network. This is a great Informational Board with some awesome folks to chat with.
I am learning alot here.

Welcome Elacey*

[Elacey]

Thank you Glenda! I know,it really is a miserable illness.Yeah,I'm not so sure about the Elmiron.I just started it yesterday and I get scared about all of the side effects.

[Glenda2]

Elmiron makes me so ill > Raw sore throat , to where I can't swallow.
Headache , sinus pain , stiff sore neck , diarrhea , and Minor hair loss in back of my head.

I was on it for about 3 weeks and just had to give it up.

I don't know what I am going to do now.

I sure hope you do Ok on it.

If you get wierd side effects , take to your doctor right away.

[Elacey]

Oh my! I am so sorry Glenda Yeah,I guess I will just have to see.Thanks so much! I hope you can find something else that works.

[vm]

Elacey - Welcome! So glad you found us.

Please don't let any stories about bad experiences with Elmiron scare you. MANY of us take it with no problems whatsoever --- in fact, many of us find that the only "side effect" we get from it is a bladder that feels waaaaaay better. Elmiron has absolutely given me my life back.

Yes, IC is most definitely a miserable disease, but as someone new to these boards and new to the disease it is so important for you to know that most ICers do go on to find treatments that help them feel so much better. Far more people post when feeling bad or when they have had a problem with a medication than those who are feeling great or have had no problems with medications.

We want you to log in here and feel more HOPEFUL when you leave. Yes, it is incurable, but it IS treatable. Most get better.

[jvr]

Hi Elacey,

I also wanted to say hello and extend a welcome to you tool I just wanted to sort of back up what Kim said about Elmiron. I hear a lot of horror stories with side effects it seems on these boards, but in studies, only 1-4% suffered side effects. I have been on it for almost 2 months now and my young daughter has been on it for almost 4 months. Neither of us have experienced anything bad. Please don't let some others experiences scare you. It has been a wonderful drug for many like Kim. I also highly recommend my new best friend Cystoprotek. This supplement has been very beneficial in the short time already that I've taken it. I hope you find all the information you're looking for here

Take care,
Jill

[Elacey]

Thanks so much Kim and Jill! I heard lots of horror stories about Elmiron and your comments calmed me down some.Does anyone know how long it takes to get into your system? I was so depressed when I found out that I had it but,being here and how everyone is so supportive...it makes me feel so much better.

[vm]

They generally say to hang in there with the Elmiron at least up until a year before throwing in the towel on it. I have seen people here over the years who said it actually did take those full 12 months to see a difference.

That said, I began to notice a slight difference around 2 months and then big changes around 6 months and on. It's been 8 years now and I no longer have symptoms as long as I continue the Elmiron. It does not work that way for everyone, but it has for me.

Usually you hear 6-12 months, but it can be very individual. A lot of us took other medications in combination with Elmiron. I was on a few others that I really needed until the Elmiron fully took effect.

[ICtampa]

Hi elacey!

I feel compelled to write to you after I saw your post. I actually posted here this morning as a newcomer also.

I am also 23 and newly diagnosed, and started Elmiron on sunday. SO I guess we are in almost the same boat here I obviously have no idea if the Elmiron is working and I know it is very very early but I can tell you I am so far not having any side effects. I am just in the same pain I was before I started it.

When I was diagnosed they did the cystoscopy camera to me too. And the next two days I was in the worst pain of my life. I could literally feel where the catheter had scraped my insides all the way up when I peed and almost passed out on the toilet from the pain. Thank god for my husband (oh yeah got married on friday talk about stressful haha)

I know what you're going through and I'm finding strength in the fact that there are others out there like you.

Keep us posted on how you're doing with the Elmiron, etc.!


xoxo, all my best, kate

[Elacey]

Thanks Kim.I guess I'll have to wait and see.

Kate,it does sound like we are in the same boat! Oh,I feel your pain. After the cystoscopy they didn't tell me how bad the stinging/burning would be.It took about 3 days to vanish but,wow.I would cringe everytime I went.
Congratulations on getting married! That is amazing.
Thanks for taking the time out to reply.

[ICtampa]

My uro didn't tell me how bad it would be either. I called him at 7:30 am on his personal cell phone after a night of horrible pain literally sitting on the toilet for four hours. So he was nice enough to tell me to come in right away at 8:40 before the office opened and he would see me. So I couldn't really be that mad that he didn't fully warn me of the pain because I was in a lot of the pain at the time and he thought it was neccessary to figure out what was going on!

But I did call him later that night and ask if it was normal to be in much worse pain and he apologized and said yes. I sat in a warm bathtub with baking soda for about four hours that day while my husband massaged my back and I just cried and cried (not one of my strongest moments I know) but I guess we got through it right??

Thanks for the congrats, everyday I feel this pain it makes me happier to look at pictures of that day and I can't tell you how thankful I am I didn't feel this pain the day I got married, truly a blessing....

keep me posted on your progress Elacey we'll get through this!

xo, kate