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health story
To me, only having an IC story leaves out a lot. Yet what is already on the net isn't really all of this stuff either, so I have chosen to have a post of my health history story. hi
Back ground: I was diagnosed with Chronic Ulcerative Colitis at age 10. Later believed that had for two years prior to that. At age 12 colitis so bad needed colon removed. Day after surgery, first grandmal seizure, they couldn’t stop it, was in a comma for three days. Woke up, severe memory loss, not even remembering my parents. I spent 66 days at Mayo that time. I also had an emergency surgery on my stomach from drugs, and a lot more seizures.
About a year after that, age 13 or so, I complained of feeling like I had to pee all of the time, no infection found, tons of test done on me with no luck. (This freaked out my mom, after all worry of my life she had just done she could handle it) I don’t know if I stopped complaining to help her and answer people prayers or what, but I did.
I had my next surgery called a reversal, where they created my Pouch and no longer had a bag outside of my body around that time.
Not to long after that surgery I had Pouchitis. I was a unique case; my home doctor could not get it to stay under control by himself, and sent back to Mayo.
Then in college, I had UTI after UTI, a few random occasions of not having an infection, but unfortunately for me, always happened at the ER clinic, never at my own doctor.
Pouchitis went into remission.
Still having seizures at this point but they were all Peti Mal or Simple Peti Mal.
Had a VNS in plant put in me in ’99. Vagus Nerve Stimulator, meant to treat my Epilepsy. Then right before my marriage, bad seizure, Pouchitis out of remission, and I thought I had a urinary infection but didn’t.
Than after marriage, went to my family doctor about thinking I had a urinary infection but didn’t. He made an appointment for me to see an Urologist, (I said defiantly not the guy I saw before someone else) I could not get in until 2 months later (grr).
Before I say that doctor I had the worst period of my life. Freaked I went back to see my family doc. He said well you have an appointment to see the urologist coming up. Completely taken back I asked ‘you think these things could be connected’. I had had to pee all the time for years; pain never seemed to associate with it. The pain never ended, I was in pain after the period, all the way until my appointment.
My urologist suspected right away I had IC, but he delimited everything else and diagnosed me through a simple lab test of putting different things into my bladder and watching how I reacted. I screamed when they put the urine like substance in me. “Get it out, get it out, get it out, your hurting me, stop.” She said she got the stuff out but I still hurt.
Finding out then that he would treat me with Elmiron and Elmiron doesn’t start working until at the earliest after 3 months. I was already in constant pain. I was very frustrated, so.. I sought out getting what I mistakenly thought was the place that could help me, Mayo. The Uro there did a cystoscopy, but not under hydro and saw no IC, didn’t help me at all, but told me stop taking Elmiron. Elmiron had just started helping me, I didn’t believe her, and sought out 2nd opinions. Thankfully, they told me I would start all over if I stopped taking Elmiron so I didn’t but wrote a complaint to the doctor at Mayo. She did a great job of ruining my disability suite at the time.
Well as Elmiron helped me more and more, I realized I didn’t only have IC, (and Epilepsy, and Pouchitis) I also had other things causing me pain. I started to sleep 17 hours a day. That left me with about 7 hours wake time a day to try to get doctors to find out what else was wrong with me. That turned out to be a number of things. Every time I had a test done, they would find something, but not something that could explain all of symptoms. I turned out what we were looking for was Endometriosis.
Later we found GERD, and I bouts of Shingles, which I found out only happens to people my age that have weak immune system. (I won my disability suite, but I can’t say I was helper to the fight for IC, since the doctor at Mayo had my judge unsure if I had it.
I don’t think I have pain from IC now unless I flare. Luckily (or unluckily) treatment to Pouchitis is alternating between two antibiotics) so don’t flare too badly too much. With Lupron treating the Endo, I don’t have periods, which also eliminate some flares.
Somewhere in this story there is a time when I had hernia removed. Out of all things that have caused me pain, IC beats them all by a lot. Even Endo that still causes me pain doesn’t compete to that level. I had gotten so close to dieing as a kid, I used to think that it would be unfair and too odd for any more health problems to be put on my plate, and so it wouldn’t happen. Now I keep waiting for what the next thing is going is going to be. This isn’t my IC story, but it is my health story. I want you to know that if someone who has experienced as much as I have thinks IC is the worst pain she has ever dealt with, then you aren’t over reacting when you say you are suffering. It isn’t something to ignore. Granted, other things got closer to killing me, (stomach, Colitis, Seizures) but nothing made me feel like physical pain alone was going make me pass out but IC.
One other thing, with all that I have been diagnosed with; this message board is my favorite place for support. We can defiantly be proud, that we do so much for each other.
NOTE: I have: 1Endometriosis, 2Rapid Heart Beat, 3Low blood pressure, 4Intersticial Cystitis, 5Pouchitis, 6Epilepsy, 7Yiest Infections, 8Reaccuring Shingles, 9Allergies, 10Rapid leg movement, 11Gerd, 12reacurring Gastritis, 13Gall Stones, 14Tendonitis,15 PFD, 16IBS, 17 migraines and the undiagnosed symptoms as well. I wonder how I still am alive with all that is wrong w/ my body or has been wrong in the past. I have had 11 surgeries and I am 28 years old. Docs call me multi diseased.
Back ground: I was diagnosed with Chronic Ulcerative Colitis at age 10. Later believed that had for two years prior to that. At age 12 colitis so bad needed colon removed. Day after surgery, first grandmal seizure, they couldn’t stop it, was in a comma for three days. Woke up, severe memory loss, not even remembering my parents. I spent 66 days at Mayo that time. I also had an emergency surgery on my stomach from drugs, and a lot more seizures.
About a year after that, age 13 or so, I complained of feeling like I had to pee all of the time, no infection found, tons of test done on me with no luck. (This freaked out my mom, after all worry of my life she had just done she could handle it) I don’t know if I stopped complaining to help her and answer people prayers or what, but I did.
I had my next surgery called a reversal, where they created my Pouch and no longer had a bag outside of my body around that time.
Not to long after that surgery I had Pouchitis. I was a unique case; my home doctor could not get it to stay under control by himself, and sent back to Mayo.
Then in college, I had UTI after UTI, a few random occasions of not having an infection, but unfortunately for me, always happened at the ER clinic, never at my own doctor.
Pouchitis went into remission.
Still having seizures at this point but they were all Peti Mal or Simple Peti Mal.
Had a VNS in plant put in me in ’99. Vagus Nerve Stimulator, meant to treat my Epilepsy. Then right before my marriage, bad seizure, Pouchitis out of remission, and I thought I had a urinary infection but didn’t.
Than after marriage, went to my family doctor about thinking I had a urinary infection but didn’t. He made an appointment for me to see an Urologist, (I said defiantly not the guy I saw before someone else) I could not get in until 2 months later (grr).
Before I say that doctor I had the worst period of my life. Freaked I went back to see my family doc. He said well you have an appointment to see the urologist coming up. Completely taken back I asked ‘you think these things could be connected’. I had had to pee all the time for years; pain never seemed to associate with it. The pain never ended, I was in pain after the period, all the way until my appointment.
My urologist suspected right away I had IC, but he delimited everything else and diagnosed me through a simple lab test of putting different things into my bladder and watching how I reacted. I screamed when they put the urine like substance in me. “Get it out, get it out, get it out, your hurting me, stop.” She said she got the stuff out but I still hurt.
Finding out then that he would treat me with Elmiron and Elmiron doesn’t start working until at the earliest after 3 months. I was already in constant pain. I was very frustrated, so.. I sought out getting what I mistakenly thought was the place that could help me, Mayo. The Uro there did a cystoscopy, but not under hydro and saw no IC, didn’t help me at all, but told me stop taking Elmiron. Elmiron had just started helping me, I didn’t believe her, and sought out 2nd opinions. Thankfully, they told me I would start all over if I stopped taking Elmiron so I didn’t but wrote a complaint to the doctor at Mayo. She did a great job of ruining my disability suite at the time.
Well as Elmiron helped me more and more, I realized I didn’t only have IC, (and Epilepsy, and Pouchitis) I also had other things causing me pain. I started to sleep 17 hours a day. That left me with about 7 hours wake time a day to try to get doctors to find out what else was wrong with me. That turned out to be a number of things. Every time I had a test done, they would find something, but not something that could explain all of symptoms. I turned out what we were looking for was Endometriosis.
Later we found GERD, and I bouts of Shingles, which I found out only happens to people my age that have weak immune system. (I won my disability suite, but I can’t say I was helper to the fight for IC, since the doctor at Mayo had my judge unsure if I had it.
I don’t think I have pain from IC now unless I flare. Luckily (or unluckily) treatment to Pouchitis is alternating between two antibiotics) so don’t flare too badly too much. With Lupron treating the Endo, I don’t have periods, which also eliminate some flares.
Somewhere in this story there is a time when I had hernia removed. Out of all things that have caused me pain, IC beats them all by a lot. Even Endo that still causes me pain doesn’t compete to that level. I had gotten so close to dieing as a kid, I used to think that it would be unfair and too odd for any more health problems to be put on my plate, and so it wouldn’t happen. Now I keep waiting for what the next thing is going is going to be. This isn’t my IC story, but it is my health story. I want you to know that if someone who has experienced as much as I have thinks IC is the worst pain she has ever dealt with, then you aren’t over reacting when you say you are suffering. It isn’t something to ignore. Granted, other things got closer to killing me, (stomach, Colitis, Seizures) but nothing made me feel like physical pain alone was going make me pass out but IC.
One other thing, with all that I have been diagnosed with; this message board is my favorite place for support. We can defiantly be proud, that we do so much for each other.
NOTE: I have: 1Endometriosis, 2Rapid Heart Beat, 3Low blood pressure, 4Intersticial Cystitis, 5Pouchitis, 6Epilepsy, 7Yiest Infections, 8Reaccuring Shingles, 9Allergies, 10Rapid leg movement, 11Gerd, 12reacurring Gastritis, 13Gall Stones, 14Tendonitis,15 PFD, 16IBS, 17 migraines and the undiagnosed symptoms as well. I wonder how I still am alive with all that is wrong w/ my body or has been wrong in the past. I have had 11 surgeries and I am 28 years old. Docs call me multi diseased.
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