IC Survey for 20 somethings/college students

[Roshyk]

Hey everyone! I just started my internship with Jill and the IC Network! I am working on an article for the IC Optimist on living with IC as a college student and a 20 something.

I want to hear your stories. How did and does IC affect your studies,social and love life? What obstacles did you overcome? How does having IC affect your life as a 20 something more than the older IC sufferer?

I want to hear your success stories, afterall The IC Optimist is about optimism and positive thinking. I look forward to reading your responses.

[Pink26]

Well I started having symptoms in May after a bad UTI and might I add one and only my whole life although now looking back I always had frequency and just thought it was normal boy was I wrong!Anyways I am 26 and this is by far the hardest thing I have ever had to deal with my entire life!It effects litteraly every aspect of my life.My life has changed dramatically,I wake up every day not knowing what to expect and unfourtunatly evryday is bad for me I have 24/7 urgency although I have at least got the pain under control for the most part but the feeling of having to go and irritation is by far the worst thing ever I just want it to go away.I am on the diet and taking all the "normal" meds for IC.So Im not quite a sucess story yet but hopefully one day i will be.I think its hard for anyone to deal with this horrible disease at any age but especially when your young this is the time when you are supposed to be healthy and at your best.I cant do anything I use to do...I have become very anti social as I can not go out and do much..School forget aboout that and I use to have 2 jobs and was forced to quit one.I am having to move back home as well. Also forget about dating and sex right now I wouldnt want to drag anyone into this living hell right now its just not fair to them.I could go on and on about how depressing my life is but I wont I just try to stay as positive as possible and pray that one day it will get better..It has to!!!

[SharonA]

:welcome: :):):)

[squirrel]

Hi there

I started having symptoms (urgency, frequency) at the age of eleven (a few months before I had my period for the first time)...
I was diagnosed four years ago (I am 26 now). For the last 4 years (especially after hydrodistension) my IC has become worse and worse, involving lots of pain, frequency, urgency, nocturia (God, I would LOVE to sleep!!!), frequent UTIs etc..
I am preparing for the bar exam (which I will be taking in a few months) and exams etc are usually interrupted and disturbed by bathroom breaks.
My mother has trouble accepting that I have to take pain medication such as Tramadol and my relatives have tried to get me off of them...
IC effects my whole life...I can't eat what I want, sex requires soooooooo many precautions, sometimes I can't bear my fiancee hugging me at night because my back and bladder hurt so much.
...oh yes and FORGET about those tight jeans that squeeeeeeze
But there's one positive thing: exerciiiiise, because it reduces my symptoms...pilates and walking really pay off :) (but then again I want to wear those jeans! :evilsmile).
I guess...IC has also made me patient and more tolerant...you sort of set priorities...

There's one ore thing I need to mention:

I have the most supportive, patient and sweet fiancee on earth! He drives me to my doc appointments, rubs my back, gives me a back massage and even refuses candy when I have difficulties sticking to my diet.
My mom is the best, too! She does half of my IC internet research and helps me soooo much.

I hope I didn't offend anyone. I guess everyone thinks that his/her family and fiancee are the best, hihi

[ICstudent]

Hi there

I am preparing for the bar exam i

Wowser, you're a law student with IC? How did you cope with the symptoms? I'm a medical student and I'm already struggling to cope.

[squirrel]

I really don't know...
I guess my meds enable me to studyyyyy...if I had been living back in the 19th century, I probably would have killed myself...
but then again I wouldn't have gone to college back then

How are you coping with IC and college? (specilializing in urology??? :bow::smile tee)

[ICstudent]

I really don't know...
How are you coping with IC and college? (specilializing in urology??? :bow::smile tee)

lol, badly.

I'm a 20 y.o male. Started having symptoms two months ago (frequency + irritated bladder + nocturia) and all tests so far came back negative. (urinalysis x2, CT, ultrasound etc).

I'm still at that stage where family and friends refuses to accept that I've got this. I suppose I'm kind of in denial, too... I guess things are made worse by the fact that I AM a medical student (known to be hypochondriacs), a man(shouldn't get IC + just suck it up) and the fact all urine tests came back normal(it's just in your head).

Currently I'm on medications that are meant to provide symptomatic relief but I've had to hide them all and take them behind my parents' back. Whenever I accidentally show some sort of distress, they tell me how disappointed they are at having me for a son. They think if I worked hard enough it'll be all gone. So I study myself to death during the day (I can hardly concentrate now like I used to) and still have to wake up at night to go :toilet: it's a vicious cycle. But anything I say now is dismissed as all in my head.

I hope my symptoms don't get worse but the only way to convince my parents that I have a problem would be if it did get worse and I started urinating blood or something :(

I dream of becoming an oncologist but i just don't see how atm...It's made worse by the fact that I've got no support from family. i just don't see where my future lies anymore.

No wait, isn't this a thread for the optimists? :p///

[squirrel]

Oh dear,

that must be so frustrating...it sounds so familiar to what I have experienced with a few ...let's say ...ex-relatives (don't worry...there were other issues leading to the ex-status :bonk:)

I know how hard it is...dealing with IC while studying so much you think your brain is going to explode.
Prior to diagnosis I was writing my exams with blood in my urine from constant additional bacterial infections, 13 different antibiotics a year and with as much sleep as you can get when you have to visit the bathroom for at least 10 times a night :toilet:

At least now (though my IC seems to be progressing), pain killers and ...thanks to the pharmacy industry for developing ELMIRON!!!...I am able to get some rest and concentrate on my exams...

I know what the taking meds behind their back issue is like...my mom is freaking out because I am taking Tramadol (and a little bit because of the Elmiron)...She is constantly asking me how I am supposed to concentrate while taking so many pain killers....the thing is...she doesn't get that it is those pain killers that enable me to concentrate...
Sometimes taking your time and patiently explaining things help...sometimes even that doesn't....but often a diagnosis does.
:confused:

My question is:
Have you been diagnosed with IC?
Urine analysis usually comes back normal ...with the exception of leukocytes and ocassionally blood....
I had a freaking doc who did a CT...though I am not sure it is a diagnostic tool for IC specifically....maybe for determining if there are other medical issues...
It showed nothing...though I looked pretty funny when my throat started swelling due to an allergic reaction to the constrat agent :evilsmile
The potassiums sensitivity test at my new docs was positive, hydrodistension showed reduced bladder capacity and lots of glomerulations (must have been bleeding on the table).

If urgency/frequency/nocturia is so bad, you might wanna give Elavil a shot...unfortunately it can have a lot of side effects...but I must admit that it really helped with frequency/nocturia etc....:toilet::bow:

Are you already on the IC diet ? Have you tried acid reducers already?

I hope you get better very, very soon...:pray:

Hundreds of close hugs :hi:

[ICstudent]

sorry for hijacking the thread..:p

My diagnosis has pretty much a process of elimination. Basically where I live doctors are in shortage, the urologist is pretty much booked out. So the formal diagnosis can't really come for at least another month. :mad:

So given my age, my o.k urinary flow, my bladder pain, lack of prostate pain, the fact that concentrated urine makes pain worse, it's unlikely to be prostatitis. (even if it IS prostatitis it's not much more of a comfort)
I've basically been trying to find the diet that suits me but to no avail. Only thing so far that I learnt to avoid is green tea and I have to dilute my urine.
I'm currently not on tricyclics (elavil) because the side effects are worse for my exam performance but I plan to go on it asap.

[baaaby11]

I'm a graphic design student and while it's not as demanding as either medical or law, it is one of the more time consuming majors. I spend literally hours outside of class doing projects and homework.

ICstudent, it's actually REALLY hard to identify triggers with diet at first. When I first starting having symptoms, I didn't think I was very affected by diet. However, I followed a pretty strict diet and once things calmed down a little bit, it then became easier to see that I was affected by diet. My suggestion is to put yourself on a strict diet for a while. That way, if you can get your symptoms to decrease a little bit, it becomes easier to see what you're actually affected by. You could also try a food diary. Write down what you eat and how you feel throughout the day and you might be able to start making some connections.

[squirrel]

whoaaa...sorry for being so late in answering (oh Sinatra, Night and Day gets an entirely different meaning when you're studying...:evilsmile)

baby 11: I really agree with the diet thing....I tried the diet for a while...but I have to admit I found it very hard to stay on...since I love tomatoes and coffee....hmmmmmmmmmm...trying to persuade myself it wouldn't be that bad if I cheated a little...:evilsmile...
Unfortunately I still have so much problems sticking to it...:confused:
But it's definetely worth trying...

ICstudent: Please write me when you have consulted your doc...I can totally understand the Elavil thoughts...I was running around like a zombie for a while...:smile tee

baby 11:One more thing: College is always hard when you're facing IC etc...Graphic design ...my God...you have to be talented...they probably wouldn't even accept me if I applied...I am the most untalented person in the world when it comes to such things...besides, being outside the whole time is probably more demanding than sitting in the comfort of a warm library...(not that I wanted to compare it to a sleeping room :angel:)

I wish everybody a wonderful, symptom-free day :hi:

[wren]

Whoa. I'm kinda late. But.. I like surveys..

I'm 22, almost. Was diagonosed for IC the first time based on symptoms around the age of 15. Symptoms are frequency, urgency and sometimes urethral burning and bladder pressure/tenderness. Got lucky and went in to remission for two and a bit years, and I thought "Oh my god I got so lucky, it went away!" Then it came back three months ago. I didn't know remission was a thing it did until about a month ago.
When I was 15-19 with my first major 'bout of this problem. Everyone told me it was all in my head. Everyone being my doctors and my mom.. I doctor hopped, as most IC patients do. My mom told me I wasn't allowed to mention it to anyone and was very reluctant to assist me in finding any methods to cope. This time around.. In October of this year, I was bawling my eyes out when it just wouldn't go away again, I thought maybe it was stress related. So I'm on Stressentials and Adrenal tissue and I take Magnesium Citrate at night. I think the Adrenal tissue helps me cope a little but I'd like it to be better (as I'm sure we all would). When I was at my parents house in October, crying because it's happening all over again, my dad came in and asked what was wrong. (I was cutting up antidepressant pills that a walk-in clinic handed me 20 minutes previous) and I told him what was happening and he admitted he gets it too. But not as bad or for as long.
I'm currently waiting on and order of DH Aloe and Bladder-Q to arrive in the mail. I REALLY hope they work.
I'm not in college.. But I work full time as a delivery driver, and on my worse days it's really hard not being able to go to the washroom because I'm driving. I am however.. Slightly managing the frequency by just forcing myself to hold it as long as I feel like I can.. Which is hard.. And rather painful.. But it's never even a full bladder when I do go.
I tried the No-sodium diet that claimed to be a "cure" but it almost killed me.. I was underweight to begin with, now I'm under a hundred pounds.

[ICstudent]

seems to me that after a long vacation/conference in Shanghai my doctor has changed his opinion and now thinks I have an "atypical" presentation of prostatitis. Pretty much told me to put up with it because it won't kill me.

Gave me doxycycline to take for a month.

I just started but personally I'm very sceptical of the antibiotics.

I've also got vesicare to treat the urinary symptoms.
Will get back in a month's time to check if i've been in the wrong forum...

[wren]

I hope everything works out for you. I really do.
Doctors can be so cold..

[squirrel]

I am so sorry that you have to deal with this ....especially working full-time
Doesn't the Magnesium Citrate actually worsen your symptoms?
There is a thread where different types of citrates are being discussed:

http://www.ic-network.com/forum/showthread.php?t=39421

I didn't know the no-sodium diet was effective concerning bladder-problems...
How exactly does it work?

I hope you feel better very soon...try eating healthy...I can relate with the weight loss issue....it drives your immune system nuts...
Speaking of....if you want to alkalize your body and/or put on a few pounds you might try almonds...apparently some IC patients react to it....but it actually lessens my symptoms...

All the best

[wren]

I didn't know Citrate had negative effects.. Huh, that is so odd because my boyfriend JUST asked me if I thought that might be a part of it. lol
That's kinda funny.. So far it doesn't seem to be bothering me, as far as I can tell.. I missed it one night and I THINK I felt worse the next day.. But it's so hard to tell if it's that or maybe just a worse day anyway.

The no-sodium diet certainly didn't help me.. But it MIGHT help someone. ICNDonna said she was on a low-sodium diet and it did nothing for her IC. I suppose it's cause it's caused by different things for everyone.|
I really think mine's cause by PFD. It makes just too much sense to be a simple coincidence all three times this has happened to me since I was 15.
Thanks for the almonds suggestion though. I'll try that ^_^

[OllieR]

I am a college kid and have IC. I also work part time teaching science labs at my school to earn some spending money. So, I have been realizing how blessed I am. I have learned to cope with IC and have pretty much completely changed my life so that I can work and do school and the things I love without being hampered. Well, people notice. I am very active in my church and it was very touching last semester when one of the leaders approached me to tell me others looked up to my work ethic and optimistic disposition in spite of my difficulties (most people know I have IC because I tell them about it, or the diet comes up, etc.). Life is by no means easy. My IC is extremely painful. A year ago I would stay up for 22 hours at a time until I was so exhausted I could sleep uninterrupted for an hour or two. Now things are better because after seeing my poor state my doctor finally referred me to a pain clinic.

One of the greatest joys is seeing people come alive when they find out you are ill. Many of my peers are genuinely curious and want to ask me lots of questions. They make me feel unique and special in a good way. They love finding out about how another person lives so differently than them. And, if I am open about my illness I find others are open as well and I get to glimpse into their life in a way that I never would have. I also noticed I am blessed in how easily I am content. Sleeping a couple hours at a time makes me praise God with so much gratitude. Simply being able to get out of bed is miraculous to me. I have never been happier in all my life. That is something others notice about me and it makes me even more happy. Before IC, I had a very hard time. I always thought I was missing out. Nothing was ever good enough for me. But now everything is.

The hardest thing in school is actually my professors. Despite dealing with IC, I like to work very hard in school. In fact, I am the type of person who works hard on anything asked of them because I believe others deserve that respect. I am not so much obsessed with grades, but teachers being very disrespectful. When I take the time to invest in their class and their lives, but they choose not to grade or read students' papers, or to invest in their lives, or slap a C on a paper because they feel like it; that is harder with IC. I know now that time is precious. I hope after school I do not have to spend as much of it on people who don't care about what I am doing. One day I am fine, the next I am debilitated unable to get out of bed. Now that God has given me the gift of mobility and more strength I want to use it to build up His kingdom. Now this is a blessing too. While I watch my peers struggle with drunkenness, drugs, caffeine, and procrastination it comes so easily to value myself, my body, my health, and my time. Each second is God's gift. Remember that... even on the most painful days!

[pennstate71]

Hey everyone - I'm actually 26 and was "officially" diagnosed with IC right after I graduated with my undergrad, but during my time as a graduate student. I had a lot of medical problems as an undergrad with UTI's and Kidney infections which turned out to be a huge tumor of the adrenal glad that was somewhat crushing my kidney (maybe that's where some of this came from!) Luckily I had some great professors (one especially dealing with chronic pain that was just awesome to talk to).

The worst was graduate shool as I got a full time job right after I graduated in 2006 and went back to school for my MBA in the fall so usually 2-3 days a week I was sitting from 8 am to 9 at night. I graduated in December of 2008 ( I think I pushed so hard because I couldn't take that schedule that much more). I have IC, pfd, vulvar vestibulitis/vulvodynia and a bunch of other stuff...but needless to say all that sitting effected the PFD the worst...this led to flares which led to lots of pain. It was very hard to try to spend all of my spare time sitting (or laying) trying to study and complete work. I feel for all of the students out there because it's not an easy (or comfortable) thing to explain. I still struggle in my job being able to relay to my male boss all of the problems I have down there without him feeling like I'm full of excuses.

I'm a very determined woman, but deal with a lot of guilt over not being able to do my best so that was the hardest part for me...feeling like they didn't understand and chucked it up to me being lazy or coming up with excuses. It's very frustrating but the only suggestion I can give is that you make sure you take time to rest...because our immune systems are already devoted to fighting pain and inflamation it's very easy to get sick (I got a doozy after I got run down both in undergrad and grad school) so try to take care of yourselves.

Another problem is alcohol. I admit that I pick and choose partying it up with my friends and family every so often...I pick the things that don't bother me quite as much but I do it very well knowing its going to flare me for a few days....so I guess some could call me a hypocrite sometimes, but I can't give up my whole life. I guess it just depends...good luck to all of you and I hope you can find someone who goes through what you are who you can talk to. It really makes things a lot easier even if you have understanding families/friends/significant others. Actually communicating with someone who's going through it can make all the difference so that's my biggest suggestion.