Anyone out there?

[jthmdepp]

Hi, I'm Jacci and I'm currently going through the road of hell aka the long confusing process of being diagnosed. I'm 18. . . and just wondering (and hoping) that there are some other people my age out there who spend most of their day in the dorm room bathrooms hoping all the other girls wont realize how many times you've been there. As of late I've always been alone in my tiny room with crappy TV reception while all my friends go out at night to get rip roaring drunk. I get very lonely and very upset when I'm alone. . . so it would be nice to have someone to talk to. . . and relate to. None of my friends understand me. :shake:

[jthmdepp]

Duur. . . I just realized I put this under HS and IC. . . HS. . . College. . . who cares! I wish I were still in High school, when everything was okay and I didn't have this problem, does that count? :confused:

[Cheries]

Oh, I hate it that you are going through this so young!! Are you in treatment yet? Can't they begin trying some treatments so you can get your quality of life back? I know it seems like this will be going on forever, but most people with IC are able to get fairly adequate treatment. We still have flares we have to deal with at times. Hopefully all the research on APF factor will translate into a treatment for us. I truly believe that we will have a cure for this soon. Hang in there and don't let yourself fall too much into a depressed mode (which I know isn't easy:) You WILL get better!!

[em99]

I wasn't diagnosed until a year after college graduation. During my years at college, I always was in the bathroom. I went there right before class, right after class, and every time I had a chance. I was much worse being in my dorm room as it was easier for me to go all the time.

Even though I did know I had IC when I was in college, I know what you are going through.

[Vampireness]

I'm sorry about what your going through. I have not completed my high school because of this, my symptoms started in June 2001. But I am turning 21 soon, and still have not graduated. I did try to go to school two years ago, but I kept going to pee and I couldn't concentrate on anything with the constant urge. I then started experiencing extreme pain and my kidneys started hurting and I could not concentrate on my work. My mom is not understanding either, so I can see what you mean by your friends don't get it. None of my friends did, heck even doctors don't!!! They are normal so what do they care?!?!

I am always at home right now, and having to pee quite abit and worse doing my flare ups, I can relate to being alone and missing out on everything. I am really so sorry about what your going through, times like these I just wanna be left alone. But, your not alone hun. *hugz*

[fje90]

Yeah, I can relate...I'm 16 and have had IC symptoms for at least 3 years. Hopefully you'll figure out a way to get rid of your symptoms soon :)

[TaliaJ]

Hey! I can relate sooo much to what you are going through. I'm 18 too, but not yet in college. I don't think I could handle college right now with my IC as bad as it is. Right now I am a senior in high school, but do not go to school anymore. I left school this Febuary to be homeschooled since the IC was becoming too severe. For me, the bladder issues crept up over the years, until the pain got so bad that I new something was seriously wrong with me. I have probably had IC for two or three years, but was only diagnosed 6 months ago. My IC has gotten so bad that before I left school, I spent all the time in between classes in the bathroom and then when I went to class, I still felt like I had to go. It was a nightmare. Right now, I am extremely lonely and have been quite depressed. I got into Cornell U. in december and I was so excited about going next year, but now I am having doubts that I can handle going away at this point. I would love to talk to you about how college is and I want you to know that you are not alone! (You are helping me feel less alone too).

I think its so awesome to be able to read about you and the others here since it has made me feel like less like an anomaly in a world of people who don't suffer from this. I have been reading the messages posted on the IC forum for probably a month without posting, so here's to my first post!

[Vampireness]

Wow TaliaJ,

I can relate to what happened to you as well, I found myself in the restroom more than in the classroom. Your right, it was a nightmare.

This part you wrote "I new something was seriously wrong with me. I have probably had IC for two or three years, but was only diagnosed 6 months ago."

I was really scared to find a site about my problem and wouldn't dare to read about and understand it better. I didn't wanna join a forum and talk to people who got IC. I was in so much denial thinking, I'm so different and I can't have this IC and whats a forum gonna do any good???

But before I joined I found myself reading and relating to so many experiences and finding comfort and coming back here, and I can't say how much I LOVE THIS FORUM and thanks to Jill for creating this, you really put alots of work into this. I would be so lost without this forum. Also thanks to everyone else whose here to help each other out. It's good to know I'm not the only abnormal one in the world.

[green_the_fish]

Hey everyone, just wanted to drop by and mention that I'm also a teen with IC. I'm 17 years old and a junior in high school.

Yeah, some girls do notice how often I'm in the bathroom, but I always just laugh it off. I have a friend who is also in the bathroom a lot (mostly because she is touching up her makeup), and we have nicknamed ourselves the "bathroom whores" :lmao:
It's pretty true, though. I literally go to the bathroom between every class period. At my school, that's every 41 minutes! I don't always end up urinating much, but I always go anyway, because I'm afraid that I will experience sudden urgency during class if I don't. I want to keep my bladder really empty during school, just to be on the safe side.

[TaliaJ]

That's a really great attitude, green_the_fish! I think laughing it off is the best thing you can do. And nice to hear about you. It's soo nice to hear of other teens who must face this demon.

I also have a question about symptoms for you guys. My IC gets worse at night. Does that happen to any of you?

[Vampireness]

Hey everyone, just wanted to drop by and mention that I'm also a teen with IC. I'm 17 years old and a junior in high school.

Yeah, some girls do notice how often I'm in the bathroom, but I always just laugh it off. I have a friend who is also in the bathroom a lot (mostly because she is touching up her makeup), and we have nicknamed ourselves the "bathroom whores" :lmao:
It's pretty true, though. I literally go to the bathroom between every class period. At my school, that's every 41 minutes! I don't always end up urinating much, but I always go anyway, because I'm afraid that I will experience sudden urgency during class if I don't. I want to keep my bladder really empty during school, just to be on the safe side.

nice attitude you got there....but I can't laugh this off, its taken over me. Though I try to keep my mind off this, with other stuff.

BUT bathroom whores???? LMFAOOOOOOOOOOOOOOOOO thats hilarious LOLOL and your friends there to do her makeup hahahahha well atleast ya both got somethin in common lol

What kinda medication are you on?

[Vampireness]

That's a really great attitude, green_the_fish! I think laughing it off is the best thing you can do. And nice to hear about you. It's soo nice to hear of other teens who must face this demon.

I also have a question about symptoms for you guys. My IC gets worse at night. Does that happen to any of you?


Yes TaliaJ, my symptoms get really bad at night I have to pee sooooo many times close to 7 I think....rarely do I get three times but thats if I decide not to go back to sleep since I keep loosing my sleep.

Anyone else able to go to sleep??? What do you take?

[green_the_fish]

Hey Vampireness. My meds are in my sig. If you click on the linked ones, they take you the remedyfind.com pages that go with them. I really love remedyfind!

[Vampireness]

Hey Vampireness. My meds are in my sig. If you click on the linked ones, they take you the remedyfind.com pages that go with them. I really love remedyfind!

Thank you green....I saw couple of the medications but not sure which will help with sleeping throughout the night. That site is helpful but I though it's a site to buy drugs lol. Right now I'm on pyridium and I'm not sure if it's supposed to start working immed...because I still start feeling pain. I have taken one pill so far.....

[green_the_fish]

Personally, I never have to worry about sleeping at night anymore because of Seroquel. Seroquel is an antipsychotic given for the treatment of bipolar disorder. I have tried many things throughout my life to help me get to sleep, and Seroquel is by far the best.
However, I don't think you could (or should) take an antipsychotic unless you really need it.

As far as IC med go, there are a few that are said to help with sleep:

One of these meds is the antihistamine Hydroxyzine (Atarax). Because antihistamines tend to have sedative side effects, Hydroxyzine can often help IC patients sleep at night. I haven't experienced this side effect from Hydroxyzine myself, but that doesn't really surprise me, since it takes quite a lot to knock out a bipolar person.
I think Hydroxyzine is a good med overall, and I would definetely recommend it.

Another med that can help with sleep is the tricyclic antidepressant Amitriptyline (Elavil). Sedation is a common side of Elavil, which can prove useful to an IC patient who has trouble sleeping. If you check out the RemedyFind page that discusses it as an IC treatement (linked in my sig), you find that most patients who commented said that it helped them with sleep.
Personally, my experience with Elavil was not good. It really jacked me up mentally, and didn't help with my pain. However, I have since found out that bipolar patients often have negative reactions when placed on tricyclic antidepressants, and are usually put on a mood stablizer or other psych. med to balance those effects out. If they are not, then they should be carefully monitored. So, it might just have been bad for me because I'm bipolar.

Basically, those are the two meds I would recommend for sleep: Hydroxyzine and Elavil. That's assuming you're not bipolar.

Now, Pyridium is supposed to start helping right away, as soon as it gets into your bladder. It's not a pain med, though, so you shouldn't expect total pain relief from it. It's just supposed to make you a little bit more comfortable in the shoty-term.
However, it is not a good medicine to take long term. Your body could have a hard time filtering it out after a while. It is also known for causing nasty side effects long-term. There are studies in which rats took Pyridium long-term and developed cancerous tumors. I don't mean to scare you, lots of people with IC take Pyridium now and then and don't have any problems. I'm just saying that this is not a med that you want to take every day for several years. It is usually recommended just for flare-ups.

I hope you can get some treatment soon. Is it generally hard to get meds in Singapore?