Have just been diagnosed

[journalibra]

Hi. My name is Samantha, I have just been diagnosed with IC 2 weeks ago now. I keep going back and forth between absolutely frustrated with it and ready to have a plan of attack to treat/manage my IC. My symptoms had come out of nowhere about 10 months ago. All of a sudden I had frequency, urgency, and pain. I had no idea what was going on. I went from doctor to doctor with them telling me it was a UTI even though they couldn't find the infection. Another doctor told me that it was an overactive bladder and sent me to a urologist. This urologist was the worst, he did an office cystoscopy and didn't numb anything or give me pain meds after. It was SOOO painful I decided to take a few weeks off from doctors and I just tried dehydrating myself and eating only the bare minimum.

I did that for about a month or two and got fed up with having the urge and pain and still frequency... aparently the very limited food I was eating was all the WRONG foods I could eat. I finally got fed up and found the best doctor in my area (she's about a 40 minute drive), but truly the best. I went to the appointment, and on the symptoms alone she told me that she thought it was IC and she wanted me to start the diet and to start taking Urocit K and Urelle as needed. I have been on the diet, Urocit K, and Urelle for 5 months and it's been helping a little bit. She then told me that she would want to put me on a medication but first I'd have to be diagnosed with I.C. (she wanted to put me on Elmiron).

The cystoscopy was about 2 weeks ago, the follow-up was a week ago to be put on the Elmiron. The Elmiron made me so sick and depressed. I felt like I suddenly became bipolar on that medicine.

So now I am back to the diet, urelle, and urocit k for a few weeks... I am so confused. I am so annoyed. I don't want to have to have this condition. I don't want to have to make some lifestyle changes and I really don't want to take medication for this forever. I am doing what my doctor is telling me to do... How long does this feeling of defeat go on? I definitally have my good days and definitally have my bad days.

Sorry this post is so long... if anyone has some helpful advice I'd be really appreciative to hear it. Thanks for reading the beginning of my story with this whole IC thing!

[Curly]

I have only been diagnosed since March 06. Since early May, after being medicated, I have not had any of my IC pain. I was drinking and eating all that I wanted. I was normal, except I still took all my meds. Now I am having a flare for the first time.

When you are first diagnosed it is very scarey and you feel like life as you knew it is over. But it will get better. Educate yourself on IC so that you can actively be a part of your care. You will get used to taking meds, and won't even mind because they'll make you feel better. You are not alone. The ICN is a great place to see that and learn all about what to do to help yourself feel better. I pray everyday for a cure for this IC and one day there will be one.

[Berkshire Road]

Journalibra -- You have come to the best place in the world to help you sort out your feelings and find ways to cope. The women (and some guys) on the boards are so generous about sharing their experience, advice, and just giving you sympathy when you need it.

With IC, everyone is a little different, which is why you'll see so many different medicine regimens that people are on, and you'll find people who've had great, long remissions and some who've had to struggle a little more.

Rest assured that there are literally hundreds of other women actively participating on these boards, and dont be afraid to post any question, no matter how weird it may seem.

Reading the Patient Handbook on this site is a great way to start to understand the condition and what you can do about it.

:welcome:

[kimaurk]

First of all, welcome to the board! I am sorry you are having such a rough time right now. I remember feeling the same way a year ago when I was first diagnosed. I was very angry that I'd have to change everything in my life to manage this stupid disease!! I even ignored eating properly because it didn't make that big a difference in my pain, but after a while I finally looked at my diet more seriously. After eliminating everything not recommended with the IC diet, I started to gradually try things. For me, I can drink decaf coffee without problem, also I can eat apples, but if I touch pineapple look out. Another thing I did was refused to take any pain killers....duh!!! I was tired of being a crank to my kids and hubby. They were so understanding and supportive. So I finally talked to my doc and let her know that I needed something and life became manageable again. Unfortunately the two kinds of bladder instillations I did didn't work, plus like you the elmiron and I didn't agree. Then last summer I had such a bad time with pain I ended up on short term disability, which now has turned to long term. this gives me up to 2 years to get things under control if I need it.
the biggest help for me was getting the pain under control. I use hot baths, heating pads are a favorite for me, and pain killers when necessary. also these message boards are a God send. I don't know what I would have done had I not been able to vent to someone who actually has been here and is encouraging you!! Be totally honest with your doc about your symptoms and how you are having a hard time coping. They can't help you if you don't let them know your needs/problems. Yes, I learned this one the hard way.(the pain thing! I didn't tell her how bad it really was for quite a while. I work in the clinic next door to my docs!!! Awkward!!) Some women say ice packs work well for them. And yes, educate yourself. Sometimes just having a better knowledge feels like it gives you a little power/control back. Keep venting, keep looking, Keep your chin up. All the best
Kim

[Sarojini]

:welcome:

So glad you have found us! :)

I'm sorry you were diagnosed with IC, but I'm glad you now have a name for the problem and can face it head on. It is frustrating in the beginning and that feeling is normal, but try to push on through it and insist on the best care possible. If you feel like you have not improved enough symptom-wise, tell your doctor! There are many, many other treatments for IC that you haven't tried yet -- have you looked at the "Treatments" section of our Patient Handbook (link at the top of the page) to check out what's available? If you need to, print out that info and bring it to your doctor. Ask to try some of the meds there. One just may be the answer!!

Remember, most people with IC find a medication or a combination of meds that help keep their symptoms under control and they can then live a nearly normal life. :)

And as boring and frustrating as the diet is, it is good to try it. Everyone is different, so you may be able to tolerate things others here say they cannot eat. Best thing to do is to stick to "safe" foods in the beginning and then keep a notebook -- add foods back one at a time and see how your symptoms are. If it makes you worse, note it. Keep doing that and you'll be able to customize your own IC Diet. Check out our Diet section in the handbook for an idea of what foods to try, or PM "Kadi" or "Julie B" on this site, who I feel are our best diet people -- they have all kinds of tasty recipes that are IC friendly on hand to share. Julie B has also written a book called "Confident Choices" which can help you with your diet customization process - excellent book :)

You can also get "A Taste of the Good Life", which is a cookbook for those with IC. It's sold here on the ICN Shop, but I think Amazon.com also offers it. It is great!! I have made recipes in there for dinner parties, and everyone there loved them :)

Remember, we're here for you, so if you have questions, come on over and ask them... and if you just want to vent your frustrations, you're welcome to do that too. We all need to let it out sometimes and you'll get lots of love and support here :grouphug:

[leelee88]

:welcome: ..
When I was dg in Nov 06 was a very confusing and scary time for me, so I understand..But just keep reading and learning everything you can about IC..Them more information you have the better your chance to find something that will get it under control.. I am not pain free, but I am able to do some things I did before IC, I have good days and bad days..
But I seem to be having more good days than bad..

Also I am conviced stress plays a big role on getting IC under control, so try to keep your stress level low, I know that prob seems crazy right now, because I know you are worried and scared, also the IC diet has been a big help to me.. You are going to be ok:angel: Just keep reading and learning!!!

If you need me just I am here for you!:smile tee

[journalibra]

I just wanted to thank you all that sent me encouraging words. I feel like I'm on some kind of horrible emotional roller coaster. I am really greatful to have an understanding (or as understanding as possible) boyfriend and really greatful to have found this site and forum. Right now I am just trying to settle into a new semester in school. I am a part-time student and part-time bookseller. And I am trying to settle into the reality of the I.C. I will begin some yoga classes to try to help with my stress level in addition to my I.C. diet and current meds. I do not have another follow-up with my doctor for a few more weeks. The Elmiron SOOOO just didn't work for me, so I just want some time to be able to relax and settle into the semester and back into work after the procedure.

[SharonA]

Don't have much to add to all the great advice you have already received. I just wanted to give you a hearty :welcome: to the ICN and to say that you have found a great place to get information and support. :)

[mary124]

Hi and:welcome: !!

You've come to the right place. I can't really offer you any more advice than what everyone else has offered you already. I do know that when I was dx back in 1992, I was scared out of my mind! I didn't know that this board even exsisted- till probably when I signed on in 2003. I wasn't dx for about 5 years, in fact, my doctor had to go to another Uro with my symptoms and even he said I was too young to have IC (I was 32 years old at the time). My doctor didn't know anything out the diet or anything - found that out here.
Since then, I have been to different doctors, tried diffent medications and treatments, the only things that helps to a degree are elmiron (which I take 2 caps 3 times a day) and pain medications; and I also have hydros as needed; usually every 5 months or so.

[glclausing]

bless your heart, I have been living with it for two years now and i have good days and really bad. i have just now excepted that I have to give up some fav foods and get on a diet, I have been in denial for a while. keep the faith, pray.:pray:

[maryla]

Hello and :welcome:,

You have come to the right place. These forums have helped me a great deal. I don't know where I would have been without them!! There will be days when you feel like you could go crazy and then days, that aren't so bad. Myself, I'm going on 3 years and just have started to actually accept, it(the IC )is what it is. I still can get crazy, so allow yourself some grieving time.

I took the Elmiron for 2 years without much progress. And no longer take it orally. Now, I have just started a month ago to give myself instillations of Elmiron, Biocarb, lidocaine, and cytotec. I can do these up to 5x daily.

What I am noticing is a little less frequency(sp) thank God. And the past 2 nights I actually slept for 7 hrs....:woohoo:

So, hang in there! Hopefully you can find something that will work for you, and as the others said, there is no dumb questions here!

God Bless you!

[Justalamp]

I was in denial for a while and then I was mad then I got depressed. I still hate the fact that I have IC and some days I wish I could just rip my bladder out. But then there are the good days. And all of the information on this sight is great and all of the people on this board are amazing. Just hang in there!:)

[glclausing]

it wouldn't be so bad if I didn't have asthema & allergys & raynonds, this just tops the cake if you know what I mean. I get one thing undercontrol and something else flairs up! I have a medican cabinet full of rx's just for me, I hate this kind of life. If I didn't have my kids, I don't know what I would do. my hubby of 19 years doesn't know what to think sometimes.

[journalibra]

I don't know, I feel like I am not as severe as others that are here. I feel bad wanting to complain or vent about what I have to be dealing with when I know many other people have much more severe IC then I have (at least at this point).

I am still going to school (part-time) and working in a bookstore part-time. I am able to be in a car and go places. My flare-ups have no rhyme or reason quite yet most of the time. I tend to notice that I have a lot of trouble at work running around, but I'm not sure if it's a flare from having to be running around the store or from the stress.

It only gets really painful for me if I am stuck somewhere running around and I'm not able to get to a bathroom... that's when I have some serious difficulty. For the most part though it's just that I have annoying frequency and urgency. The pain only comes and goes during horrible flare-ups. I had never imagined before the hydro procedure to be diagnosed that I would ever actually be able to FEEL my bladder... I feel like my IC symptoms have gotten worse since the procedure... is that normal or is it still because my bladder is still healing from the procedure?

I don't know what else to say for now... I'm frustrated that my life has to change because of this... I have come to realize this diet change is pretty permanent, I have a whole stash of Prelief but I'm planning on not needing it unless out with people or at an event that I have no choice in the menu...

[L. Thomas]

:welcome: :welcome:

We are all in the same ballgame here. Some of us pitching, some of us hitting and some of us striking out.
But we are all here
This is a good place to be

[Trying2Cope]

I am a male with IC, and I also went through periods of depression. I felt like nobody, including my family, understood the level of pain I was experiencing. My cat was actually the biggest source of comfort for me, as silly as that sounds. Unfortunately, she passed away due to cancer last year.

After a two year battle with IC, I went into remission after taking supplements recommended for cats with bladder problems (now I sound like a weird cat person). 1000 mg each of glucosamine/msm and quercitin. I haven't taken any IC meds since October, and I am pain-free. It may not work for everybody, but I believe it is responsible for my remission (plus there are no side effects).

[lisalau]

Trying tocope, i dont think thats wierd at all!!! I am so excited to read this!! When i was given my first urodynamic test, the resukts were so unusual that noone had ever seen results like them. The prof who ran the tests is very experienced, having opened uro/gynae wards all over the world. He posted my results on the web and asked his collegues around the world if they had seen anything like this before and the only person to respond was a vet saying he had seen this in cats! When asked what his treatment consisted of (hoping we could adapt it for me) his answer was he put them down, too cruel to allo to live with this condition. Prof did not consider this a viable treatment option for me. Where do you get these supplimentsplease? I would love to rry them
hugs and sincere thanks for sharing
lisa
ps please excuse typing, husband is asleep and computer has little light but i am too sore to sleep

[Trying2Cope]

Trying tocope, i dont think thats wierd at all!!! I am so excited to read this!! When i was given my first urodynamic test, the resukts were so unusual that noone had ever seen results like them. The prof who ran the tests is very experienced, having opened uro/gynae wards all over the world. He posted my results on the web and asked his collegues around the world if they had seen anything like this before and the only person to respond was a vet saying he had seen this in cats! When asked what his treatment consisted of (hoping we could adapt it for me) his answer was he put them down, too cruel to allo to live with this condition. Prof did not consider this a viable treatment option for me. Where do you get these supplimentsplease? I would love to rry them
hugs and sincere thanks for sharing
lisa
ps please excuse typing, husband is asleep and computer has little light but i am too sore to sleep


I buy my supplements at a neighborhood health food store which carries a wide variety of vitamins and supplements. You can also order them online. I get the non-citurs quercitin, and stay away from the glucosamine which also has condroitin in it. Condroitin can cause flares, based upon other posts I have read.

I read some research online (can't remember the web site) that people with severe IC have the same quality of life as somebody with end-stage renal (kidney) failure. If that doesn't tell somebody how painful IC can be, nothing will.

Thankfully, I now live a pain-free life. :bow: