Looking for a friend

[bluetart]

Hi, I am 20 and was diagnosed with IC fairly recentily, I knew that I had a problem for atleast a year and than new I had IC since last thanksgiving. Of course I am sure most of you know how long it takes to get diagnosed. I have been looking for people to talk to about this condition. I live in an isolated area, where the care from doctors is poor. I havn't had any treatments, except for takeing elmeron, which has been helping. I am not sure where to start with treatments. I am also not sure whether I have moderate or severe IC. I don't think I have mild. I was told I have many ulcers and my bladder is in the worst condtion he has ever seen for my age. I have alot of pain. I was peeing around 30-40 times a day before I was diagnosed, but now I am down to 10-15, and usualy no more than 4 times at work, durring and 8 hour period, somtimes only twice :woohoo:. I pee alot when I am tying to strech my bladder out I try and chug 2 litters a night and hold as much as I can for as long as I can when I can, will this help, or make it worse, in the long run.
Where I work I do alot of physical labor, it helps to not be sitting and focusing on my pain and instead working my ** off. I had made alot of improvements over the very few months that I have been diagnosed. I thnk the hydrodistension realy helped out alot. Is it normal for things to get alot better after diagnosis? What can I do to get rid of these ulcers and or coat my bladder even more? I had a lot of plans for my life, very ambitious ones. I still want to do it all, even though my doctor told me to go get married and find someone to take care of me for the rest of my life. I became a wildland fire fighter this summer, worked in a very hard job, where there are no bathrooms. I have to go outside. My mom says I do to much and I need to slow down, take care of myself, but when I am doing nothing I am peeing every 45 min and in pain. I know this post is all over the place. I have never talking to anyone with IC before. I have some many unaswered question and almost no support. I hope to find a IC buddy, a friend I could travel this disease with through my life.

[mlzippy7]

:welcome: You can talk to me anytime!
We are here to help each other cope with IC and other conditions!
Hang in there!!

[crkshnks79]

Hi and :welcome: You have found the right place for friends and advice !!! Ill try to ans soe of your questions , but others have alot more knowledge then me lol Elmiron is a good start but you should also check out the diet on this website , it can do wonders knowing what seems to aggravate your bladder !!! Im not quite sure about the stretching your bladder ques ? maybe someone else has the ans to that one ? One thing about IC , where many of us have similarities w this disease , everyone remains different in what helps them or what doesnt . I take elmiron , elavil ( and anti depressant that helps w the pain ) , and get bladder rescue instillations ( where they catheterize you and put a medicine solution right into your bladder ) I also have pain meds to help when I cant hack it . I think its awesome that your a firefighter !!! I was a volunteer FF and EMT for awhile , its a hard job but exciting and worth while :) I am sorry you in such bad shape right now , IC is not an easy battle , but having a diagnosis def helps and having people who go through it everyday is a life saver !!! Anytime you want to talk feel free to private message me and again welcome !!!

[shell]

It's not odd to feel better after a diagnosis - now you know exactly what you're dealing with and you've begun treatment. As mentioned above, we're all different in the treatments we respond to and there are many options, from various diet modifications to a wide assortment or combination of medications. I've been most successful with diet modifications. It was at times frustrating to go through the trial-and-error of finding what my bladder could and couldn't tolerate for food and drink, but well worth the effort to now feel I have some control over my symptoms instead of the other way around.

As for stretching your bladder, that sounds like the bladder retraining program I've read about in several places, including the ICA website at http://www.ichelp.org/Default.aspx?tabid=316. Like all other treatments, each individual responds differently.

I think it's great that you're not letting IC interfere too much with your plans. It's important to take care of yourself, but there's also no reason to put your plans on hold if you don't have to - it's possible to achieve a balance between the two.

I find it interesting that your symptoms seem worse when you have nothing to do. I find mine are worse when I'm away from a bathroom - like a long car trip (long being anything more than 15 minutes!). I think that when I know I don't have easy access to a bathroom, then that's all I can think about, so then I concentrate on how my bladder feels, then I feel that I need to empty my bladder, but I know there isn't one near by... A vicious cycle... So keeping busy certainly helps keep the mind on other things than the bladder.

You'll find some great information and support on this website and these forums.

[bluetart]

Hey thanx for your responces. It feels good to here from someone with IC. I actualy did try the IC diet before I was diagnosed. I tried it very strickly for 2 weeks and lost five pounds. Not being able to eat anything I liked, kept me from eating. I love spicy food, not a fan of blan things. I have made some diet modifications though. What I did find it that I will never be able to drink coffee again, which is very sad and things that have food coloring in it. Like cool aid and sour candies don't work for me either. Things with alot of artificail stuff in it makes me have to pee alot. I take preleif when ever I am going to eat somthing super spicy or acidic.

Yes I do get nervious when I know I am not around a bathroom, but when your in the woods the bathroom is right behind any tree, so it dosn't bother me. So working outside is ideal for me. I do agree about when I am in a car or something, I get nervious that all have to ask everyone to stop becasue I got to go, even though I just went. I don't mind it when I am with my bf in the car because he already knows and is always thinking where the the next avaible bathroom break will be so I can go, but when I am with people I work with I get nervious.

[SharonA]

bluetart... :welcome: to the ICN...

I wish I could come through the screen and give you a great big hug. But since I can't, I hope this helps. (((Hug)))

You have a great outlook and are a very brave young woman. I am really glad you found us. I think you will make lots of friends. We are all here to help and give you support. :)

[Tinkerbell23]

hey i am sorry to hear that!! i am 25 and have had ic for 3 years prob longer...feel free to PM me any time you need to talk...

[petrie86]

Hi Bluetart, I'm 22 and have been dxd with IC for ummm almost 3 years now. Geez time flies by so fast! But anywho i know how hard it can be to be so young have have ic. I'm glad you have a supportive bf and family, thats a great start! I didnt have that so its great that you do.
Elmiron is a great med, helped me alot! does ur dr have you on any pain meds? Dealing with ic you have to be very patient bc it takes a long time before you find what works for your body, i finally am at my normal well somewhat normal life again. So i wish you the best of luck... if u ever want to talk to someone the same age pm me!!!!

Hugs,
Rach

[bluetart]

Hey, thanx for your guys support. Yes I am on pain meds. I only take them at night though. I can't drive, or function at work with them. I also like to be asleep when they are kicking in so I don't feel high, and than I can't stay asleep. Does anyone know anything about stopping bladder retention. Is there a med for that?
I have been doing better since this post. My Ic has improved from the 40+ times a day trips to the bathroom, not being able to get in a car or fall asleep without aid, to now working, pain meds not every night, and frequency 8-20. Of course I am defentily not pain free but keeping myself busey helps.

[NewLife]

Hi! It's great that you don't let IC affect your life but remember that you need to help yourself first before you can help others. Sometimes it makes sense to slow down so that you can get better and then do all the things that you want to do. I also have ulcers and also had to put some things on hold. I had started a business in addition to my day job and had ambitious plans for it when I had to give it up because it was too stressful and made me flare. I actually feel relieved because I know I'm doing the right thing right now by taking care of myself. I had a Japanese kanji that translates as 'heal' and two flowers representing my ulcers tattooed on my stomach last Saturday to remind me of my new priorities. It was a very empovering experience. Life is not over because of IC and I am discovering a new sense of balance in life now that I have to slow down. I hope you can find joy in your life with IC, too. It is definitely possible.

Some ideas for other supplements to try for ulcers are listed in my signature. I think all of them are definitely working.

If you ever need to talk, PM me :)

[Millicent]

Hi! I am Millie and I was diagnosed about 2 weeks ago but this has been going on for about a year. I am 20 and married. I only watch what I eat. I take no medication at all except a Prosed pill once or twice a month. Its frustrating bc I'm somewhat clueless and I love this forum bc its all helpful and useful information and no drama! You can PM me anytime!