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Hi,
I'll bring up my story again and try to make it as short as possible, since I only come on here once a year to update people and hopefully give people who are where I was 5 years ago some hope.
I was 22 when I developed IC, being a guy it was probably even harder to get a correct diagnosis since it's primarily a "women's disease"...now wether that is true or not I don't know, since alot of men get misdiagnosed with prostatitis.
Anyway,
I went from being the happiest guy ever with a near perfect life to utter missery.
I struggled and suffered, tried everything and no matter what, I couldn't get rid of my discomforts.
It was literally driving me insane.
I had a very supportive family and wife who helped me as best they could, I wouldn't be here if it was not for them.
I didn't get a diagnosis for a long time, I went to 15 urologists and nothing.
Cystoscopies, bladder scans, everything...tried lots of meds but nothing helped.
I honestly thought this illness would be the end of me.
I learned that most doctos are jerks unfortunatley...one even went so far as to state that there was nothing physically wrong with me, but it was all in my head...and sent me to a psychiatrist...for this very physicall ailment (later we took legal action against this doctor who lost her license).
I finally got diagnosed by a professor who is one of the leading authorites on IC and said it was a textbook case.
After that I saw more urologists and noone could help..until I found the most wonderful and kind one ever.
He sat and just LISTENED to me and my story for two hours.
He realized what pain it had brought and how it had devastated me.
I couldn't drink anything without pain..even water irritated it, coffee, coke, juice and I was in agony for days.
I told me that there is one more thing that can be done...bladder surgery.
Not bladder removal mind you, but where they leave your old bladder, and just make a new one (Kochs bladder) out of the small intestine and connect the kidneys to that, thereby bypassing the old bladder.
You get a small quartersized opening in your stomache which you cover with a special skincoloured bandaid.
He said this is the last option we have..first I had to try instillations with Uracyst for 2 months...then if that failed (which it did) surgery.
I had the surgery now a little more then 4 years ago, and from the minute I woke up after the 8 hour procedure I had my life back.
Recovery took a few months for me to get back to full strenght, but it was nothing compared to what I had to go through before.
Nowadays I lead a perfectly normal life.
I work alot, have my own company which is doing great.
Just bought a new house and I now have a three year old son and of course my wonderful wife.
I workout and play sports 4-5 times a week.
We travel alot, last year we went to Venice, Rome, London, Paris, China, Greece and Australia.
The most wonderful thing is to be able to eat and drink whatever I want again without worrying about it.
I drink a couple of cups of coffee everyday, I can go out and grab a beer with my friends or share a bottle of wine with my wife again.
There is hope, there is always hope.
I was a down as one could be, I was so angry at everyone (even people on this board who tried to help me..).
It really pains me when I read about people who sit awake at night typing cause they can't sleep cause of this horrible illness, just like I did countless nights.
I just want to say, don't ever give up because there is hope.
I'm not saying surgery is the solution to everyones' IC, but it was for me.
The good thing with leaving the old bladder, is that the surgery is completely reversible.
They can reconnect the old bladder quite easily if there is ever a cure or if something happens.
Don't give up trying to find that ONE good doctor who can help you.
They are few and far apart but they are out there.
Don't let any doctor tell you that you are FINE if you are not. You would know.
I hope everyone is doing well, and that you will find what's right for YOU
One last thing;
Don't underestimate the impact this illness has on your family.
Only after recovering I realized how deeply me being sick had affected my wife, and how helpless she had felt seeing me wither away.
I'll bring up my story again and try to make it as short as possible, since I only come on here once a year to update people and hopefully give people who are where I was 5 years ago some hope.
I was 22 when I developed IC, being a guy it was probably even harder to get a correct diagnosis since it's primarily a "women's disease"...now wether that is true or not I don't know, since alot of men get misdiagnosed with prostatitis.
Anyway,
I went from being the happiest guy ever with a near perfect life to utter missery.
I struggled and suffered, tried everything and no matter what, I couldn't get rid of my discomforts.
It was literally driving me insane.
I had a very supportive family and wife who helped me as best they could, I wouldn't be here if it was not for them.
I didn't get a diagnosis for a long time, I went to 15 urologists and nothing.
Cystoscopies, bladder scans, everything...tried lots of meds but nothing helped.
I honestly thought this illness would be the end of me.
I learned that most doctos are jerks unfortunatley...one even went so far as to state that there was nothing physically wrong with me, but it was all in my head...and sent me to a psychiatrist...for this very physicall ailment (later we took legal action against this doctor who lost her license).
I finally got diagnosed by a professor who is one of the leading authorites on IC and said it was a textbook case.
After that I saw more urologists and noone could help..until I found the most wonderful and kind one ever.
He sat and just LISTENED to me and my story for two hours.
He realized what pain it had brought and how it had devastated me.
I couldn't drink anything without pain..even water irritated it, coffee, coke, juice and I was in agony for days.
I told me that there is one more thing that can be done...bladder surgery.
Not bladder removal mind you, but where they leave your old bladder, and just make a new one (Kochs bladder) out of the small intestine and connect the kidneys to that, thereby bypassing the old bladder.
You get a small quartersized opening in your stomache which you cover with a special skincoloured bandaid.
He said this is the last option we have..first I had to try instillations with Uracyst for 2 months...then if that failed (which it did) surgery.
I had the surgery now a little more then 4 years ago, and from the minute I woke up after the 8 hour procedure I had my life back.
Recovery took a few months for me to get back to full strenght, but it was nothing compared to what I had to go through before.
Nowadays I lead a perfectly normal life.
I work alot, have my own company which is doing great.
Just bought a new house and I now have a three year old son and of course my wonderful wife.
I workout and play sports 4-5 times a week.
We travel alot, last year we went to Venice, Rome, London, Paris, China, Greece and Australia.
The most wonderful thing is to be able to eat and drink whatever I want again without worrying about it.
I drink a couple of cups of coffee everyday, I can go out and grab a beer with my friends or share a bottle of wine with my wife again.
There is hope, there is always hope.
I was a down as one could be, I was so angry at everyone (even people on this board who tried to help me..).
It really pains me when I read about people who sit awake at night typing cause they can't sleep cause of this horrible illness, just like I did countless nights.
I just want to say, don't ever give up because there is hope.
I'm not saying surgery is the solution to everyones' IC, but it was for me.
The good thing with leaving the old bladder, is that the surgery is completely reversible.
They can reconnect the old bladder quite easily if there is ever a cure or if something happens.
Don't give up trying to find that ONE good doctor who can help you.
They are few and far apart but they are out there.
Don't let any doctor tell you that you are FINE if you are not. You would know.
I hope everyone is doing well, and that you will find what's right for YOU
One last thing;
Don't underestimate the impact this illness has on your family.
Only after recovering I realized how deeply me being sick had affected my wife, and how helpless she had felt seeing me wither away.
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