Katrina
05-03-2004, 10:10 PM
Believe it or not I have never told this story. I guess I just had so much else to say...lol. Sorry it is so long
My IC Story
My first IC symptoms were when I was 13….shortly after I had my Pouch surgery because my colon had been removed the year before. At age 13 I had a lot of tests done because of that feeling that wouldn’t go away of having to pee...even when I had just gone. None of those tests were diagnostic for IC though. My Mother had just gone through a lot (my surgeries…me almost dieing multiple times the year before) and her fear of what could be wrong with me…along with a friend of her saying “maybe there will be a Christmas miracle” as she talked to my Mom to calm her down….got me to stop complaining about the feeling…as if it had gone away…like a miracle.
Years went by…and I am sure during some of that time I went into remission.
At the same time during those years I often suffered from Pouchitis (inflammation of my Pouch. The same disease my colon had had without the ulcers). Pouchitis gave me the diarrhea and I went to the bathroom a lot…so even I would have some difficulty noticing urine frequency being high. I was already waking up to go for my Pouchitis multiple times.
I did have urinary infections occasionally already as a teen. Not more than one a year though. I remember one that was so bad it had the ER doc quite concerned at first.
Than while in college I started getting a lot worse. I was diagnosed with chronic cystitis. Right away my urologist complained, “You couldn’t possibly be having that many infections…I want you to go to the doctor and get tested for everyone.” He made me feel crazy. I couldn’t possibly go to the doctor for everyone because I was going to college and working and was already disabled (I couldn’t drive because of epilepsy).
I did try to go the doctor for as many as I could…..sometimes there wasn't an infection…sometimes there was. I would always look forward to my period coming because I knew after the first few days after my period…I would get relief. I had one thing giving me an advantage on this not going to the doctor for every time I felt like I had an infection. The medicine for my Pouchitis was antibiotics. Although that was in remission by the end of college I still had some medicine left. It didn’t last me very long though.
I had no idea what was wrong with me. I knew I had a weak immune system. I also knew that without having a colon I had at least 7X more bowl movements a day than a normal person and that was when I was doing well. So I figured I was just that unlucky. I didn’t understand the negative result tests….but figured maybe there was just not enough bacteria to count it ...but enough to bother me.
Than there were the months before my wedding, everything of my health had gotten worse out my planning and nervousness and the fact that Mom was so nervous she was getting hard to live with. Everything of my health included at that time only my Pouchitis, Epilepsy, and those IC symptoms.
I had a Peti Mal Seizure that I stayed conscious for the whole time that was about 45 minutes long. Never having had a seizure like that before while at home my mother had a fit. Even though we didn’t tell her till it was over she insisted I go to ER. To end the argument going on I said I would go; it wouldn’t be a waist we could find out if I had an infection. Well I didn’t have an infection and the docs agreed no reason to go when a seizure is over if you are an epileptic unless you injured yourself.
After my wedding I told my now husband, lets go to the family doc and talk about my urinary infections. That appointment I didn’t have one and doc wanted to know how many other times I hadn’t had one that I thought I did. Husband had a better memory than me and remembered more times than me. I was surprised.
Doc was going to make me an appointment with a urologist. I demanded it be a different doctor than I had seen before. So he made me an appointment but it wasn’t until over 2 months later.
During that time for the first time I got premenstrual pain (I thought) even though I NEVER got premenstrual pain. I didn’t think anything of it. I had been behind developing because of other sicknesses and just felt that I was changing and growing. (I mean other women got premenstrual pain right? It did seem a little odd though. It seemed to begin ahead of time, (but I had been on the pill hormone changes can change the cycle). As it turned out I had had over a weak of premenstrual pain.
Than came the worse period of my life till that point. I was use to some pain during my period. Never like this. I called my Mom who complained about her periods all the time and asked her if she ever had one this bad. “NO”. I was so scared. The pain was killing me, and nothing I had could lesson it. I called a “ask a nurse” who told me pain that bad isn’t normal at anytime.
I headed back to my family doctor without a clue that this pain was connected to my need to pee all the time. Doctor was smarted than me though and said, “Well you do have the urologist appointment coming up.” I wasn’t sure if he was right, but after the pain was still around after my period I started to believe he was right.
Unfortunately I still had to have one more period before my appointment with the urologist. When that one began I was back at my family doc begging for prescription pain meds to get me through till my appointment. He obliged but the meds didn’t help very much.
Somehow I survived to my urologist appointment. He believed right away that I had IC but said he had to schedule a number of tests to rule out other things. Tests didn’t scare me I had already had so many in my life I was ok with it. The after the tests at the hospital I had an office appointment with my doctor. He looked at the results of my tests and said that all looked good.
He than told me that his nurse was going to be putting a catheter in me. It hurt to have the catheter put in and it hurt just being there. They tested how much urine I could hold. Then she did the potassium test on me.
She put water into my bladder and asked me how it felt (I had no idea what she was putting into my bladder at the time). I said well I feel like I have to pee even more than before but that is it. She than put potassium into my bladder and I screamed. “Get that out of me…you are hurting me stop, stop, stop.” Well she took the potassium out. I still didn’t feel great. I felt like I had to go to the bathroom really, really, really bad. She said she would let me go to the bathroom but my bladder is empty, hang on. She than put a solution into it that helped to calm it down.
I was very happy I had taken a whole day off of work because I hurt pretty bad and ended up not getting back to normal till the next day. The doctor told me I had Interstitial Cystitis. I had no clue what that was. He gave me some pamphlets. Said it was incurable, but there was treatment, and that the best they can do is make me comfortable as possible.
He put me on elmiron and told me it took 3 months to work at the least if you are lucky, and normally took six to nine months. I prayed to be lucky. He put me on hydroxyzine which knocked me out. I should have been weaned onto it. The first time I took it my husband couldn’t wake me up and was scarred out of his mind. My Dad couldn’t wake me up either.
He said to stay on what my family doctor had given me for pain. Thankfully prayer works (I had asked everybody to help me pray) and I started getting relief from elmiron in 3 and half months. Those were very hard months because before I got better I continued getting worse. So before elmiron took affect I was in excruciating pain. The worse pain I have ever experienced.
Elmiron brought me out of pain in time, but it never fully got rid of my sensation of having to pee. I am happy I now have better pains like Neurontin and Codeine. Lately my IC is getting worse and I know I need to talk to my urologist about treatment that slows that process down and turns it around again.
I have tried other things as treatment too. Some have helped and some things haven’t. I never want to have to go back to the days after diagnosis before elmiron started helping.
:hi: :hi: Thanks for listening
My IC Story
My first IC symptoms were when I was 13….shortly after I had my Pouch surgery because my colon had been removed the year before. At age 13 I had a lot of tests done because of that feeling that wouldn’t go away of having to pee...even when I had just gone. None of those tests were diagnostic for IC though. My Mother had just gone through a lot (my surgeries…me almost dieing multiple times the year before) and her fear of what could be wrong with me…along with a friend of her saying “maybe there will be a Christmas miracle” as she talked to my Mom to calm her down….got me to stop complaining about the feeling…as if it had gone away…like a miracle.
Years went by…and I am sure during some of that time I went into remission.
At the same time during those years I often suffered from Pouchitis (inflammation of my Pouch. The same disease my colon had had without the ulcers). Pouchitis gave me the diarrhea and I went to the bathroom a lot…so even I would have some difficulty noticing urine frequency being high. I was already waking up to go for my Pouchitis multiple times.
I did have urinary infections occasionally already as a teen. Not more than one a year though. I remember one that was so bad it had the ER doc quite concerned at first.
Than while in college I started getting a lot worse. I was diagnosed with chronic cystitis. Right away my urologist complained, “You couldn’t possibly be having that many infections…I want you to go to the doctor and get tested for everyone.” He made me feel crazy. I couldn’t possibly go to the doctor for everyone because I was going to college and working and was already disabled (I couldn’t drive because of epilepsy).
I did try to go the doctor for as many as I could…..sometimes there wasn't an infection…sometimes there was. I would always look forward to my period coming because I knew after the first few days after my period…I would get relief. I had one thing giving me an advantage on this not going to the doctor for every time I felt like I had an infection. The medicine for my Pouchitis was antibiotics. Although that was in remission by the end of college I still had some medicine left. It didn’t last me very long though.
I had no idea what was wrong with me. I knew I had a weak immune system. I also knew that without having a colon I had at least 7X more bowl movements a day than a normal person and that was when I was doing well. So I figured I was just that unlucky. I didn’t understand the negative result tests….but figured maybe there was just not enough bacteria to count it ...but enough to bother me.
Than there were the months before my wedding, everything of my health had gotten worse out my planning and nervousness and the fact that Mom was so nervous she was getting hard to live with. Everything of my health included at that time only my Pouchitis, Epilepsy, and those IC symptoms.
I had a Peti Mal Seizure that I stayed conscious for the whole time that was about 45 minutes long. Never having had a seizure like that before while at home my mother had a fit. Even though we didn’t tell her till it was over she insisted I go to ER. To end the argument going on I said I would go; it wouldn’t be a waist we could find out if I had an infection. Well I didn’t have an infection and the docs agreed no reason to go when a seizure is over if you are an epileptic unless you injured yourself.
After my wedding I told my now husband, lets go to the family doc and talk about my urinary infections. That appointment I didn’t have one and doc wanted to know how many other times I hadn’t had one that I thought I did. Husband had a better memory than me and remembered more times than me. I was surprised.
Doc was going to make me an appointment with a urologist. I demanded it be a different doctor than I had seen before. So he made me an appointment but it wasn’t until over 2 months later.
During that time for the first time I got premenstrual pain (I thought) even though I NEVER got premenstrual pain. I didn’t think anything of it. I had been behind developing because of other sicknesses and just felt that I was changing and growing. (I mean other women got premenstrual pain right? It did seem a little odd though. It seemed to begin ahead of time, (but I had been on the pill hormone changes can change the cycle). As it turned out I had had over a weak of premenstrual pain.
Than came the worse period of my life till that point. I was use to some pain during my period. Never like this. I called my Mom who complained about her periods all the time and asked her if she ever had one this bad. “NO”. I was so scared. The pain was killing me, and nothing I had could lesson it. I called a “ask a nurse” who told me pain that bad isn’t normal at anytime.
I headed back to my family doctor without a clue that this pain was connected to my need to pee all the time. Doctor was smarted than me though and said, “Well you do have the urologist appointment coming up.” I wasn’t sure if he was right, but after the pain was still around after my period I started to believe he was right.
Unfortunately I still had to have one more period before my appointment with the urologist. When that one began I was back at my family doc begging for prescription pain meds to get me through till my appointment. He obliged but the meds didn’t help very much.
Somehow I survived to my urologist appointment. He believed right away that I had IC but said he had to schedule a number of tests to rule out other things. Tests didn’t scare me I had already had so many in my life I was ok with it. The after the tests at the hospital I had an office appointment with my doctor. He looked at the results of my tests and said that all looked good.
He than told me that his nurse was going to be putting a catheter in me. It hurt to have the catheter put in and it hurt just being there. They tested how much urine I could hold. Then she did the potassium test on me.
She put water into my bladder and asked me how it felt (I had no idea what she was putting into my bladder at the time). I said well I feel like I have to pee even more than before but that is it. She than put potassium into my bladder and I screamed. “Get that out of me…you are hurting me stop, stop, stop.” Well she took the potassium out. I still didn’t feel great. I felt like I had to go to the bathroom really, really, really bad. She said she would let me go to the bathroom but my bladder is empty, hang on. She than put a solution into it that helped to calm it down.
I was very happy I had taken a whole day off of work because I hurt pretty bad and ended up not getting back to normal till the next day. The doctor told me I had Interstitial Cystitis. I had no clue what that was. He gave me some pamphlets. Said it was incurable, but there was treatment, and that the best they can do is make me comfortable as possible.
He put me on elmiron and told me it took 3 months to work at the least if you are lucky, and normally took six to nine months. I prayed to be lucky. He put me on hydroxyzine which knocked me out. I should have been weaned onto it. The first time I took it my husband couldn’t wake me up and was scarred out of his mind. My Dad couldn’t wake me up either.
He said to stay on what my family doctor had given me for pain. Thankfully prayer works (I had asked everybody to help me pray) and I started getting relief from elmiron in 3 and half months. Those were very hard months because before I got better I continued getting worse. So before elmiron took affect I was in excruciating pain. The worse pain I have ever experienced.
Elmiron brought me out of pain in time, but it never fully got rid of my sensation of having to pee. I am happy I now have better pains like Neurontin and Codeine. Lately my IC is getting worse and I know I need to talk to my urologist about treatment that slows that process down and turns it around again.
I have tried other things as treatment too. Some have helped and some things haven’t. I never want to have to go back to the days after diagnosis before elmiron started helping.
:hi: :hi: Thanks for listening