So before I get too carried away with post relies, I guess I'd better tell my story.
Side-note. For those that are reading this and are relatively new to Crohn's, don't forget...I didn't have internet 19yrs back to get info. Crohn's wasn't as common as it is now.
Back in April 1993 (I was 19yrs) I had a beautiful baby girl. I had always had blacking out episodes since I was little so my doc decided to take her by C-sect. lol, I was fine with that!
So things were good, tummy was healing great then I got my first "flu" this went on for about 6 months. From my family doc to the ER, everyone kept saying I had the "Flu" go home and let it run it's course. Okay, now I'm down to 73lbs (was 175 after baby) Mom was force feeding me ice, dad was carrying me to toilet and mom was cleaning my bum...nice, I was 19!! my dad had enuff, carried my to the truck and took me back to the ER. Nurse took one look at me and rushed me in to a room without even registering me in. I was one day away from death, one more day and I would have been carried into the morgue.
My first doc was a moron! Diagnosed me with Hodgkins disease and or possibly Parkinson's disease...his bedside manors were terrible as well. My last words to him were not purdy lol
months in and out of the hospital, I finally got a doc that diagnosed me with severe Crohn's and Ulcerative Colitis..yeah, double the fun!
I was put on the beginning Crohn's meds (Sulfa based) with no relief, so he put me on 100mg of prednisone/day and this helped. I went into remission for about 1 year and landed back in the hospital. This doc was prednisone happy and wanted me to continue with that treatment. It wasn't working, so why bother?!
I also developed severe RH, my whole body was affected and lots of bone pain! It was so bad, I was told I'd be in a wheelchair soon and they were talking hip replacements and rib cracking. My ribs were curling into my lungs, bone doc wanted to wait and see before she did surgery on this.
New doc in 1998....A few more meds were tried, a few more meds that didn't work! This doc ran down the list from mild to potent drugs, my body kept rejecting the meds and I was getting worse. She was baffled, I was getting side effects that were not even listed. I was then approved for Remicade treatment around 1998/1999. This was fantastic, I could eat and I could walk!! For about 4months, then my body rejected that too. I was very sick from it.
With loss for treatment, I gave up and just let my Crohn's and UC do it's thing...until I got extremely sick in 2002, scope was done and so were my intestines. Worse case my doc had ever seen and dealt with. My intestines were black and dying, surgery time. I had my bowel resect done in January of 2003. I lost 3/4's of my large and 1/3 of my small and landed in the ICU for 2weeks cause the surgery went wrong!! The staples didn't hold and I was bleeding internally. I was passing large amounts of black blood and passed a clot the size of an apple. I was in Hospital for 5 weeks with a surgery that only required up to 1week stay.
The surgery wasn't a success and I was back to dealing with my Crohn's and UC on top of the extreme bone pain. I was then put on Imuran and this was not good. I was admitting into the hospital yet again. The Imuran attacked my pancreas, man, I felt like death!!
So, I dealt with this on my own for a few years with the help of small doses of prednisone from my family doc.
In 2005, I purchased a horse, she was my lifeline and kept me out of the hospital. I now had something that relied on me to feed and clean, I had no choice but to have to get up and go. This was the best thing I did for myself! I felt great, she saved me from the wheelchair. She passed away in 2009
In 2008, I got really sick with some horrible Flu (yes was really a flu this time) It was at this time I developed the fistulas...talk about PAIN!! WOW! This fistula mad it's way from butt to vag and blew open there..friggin' painful I tell ya. II was sent for a MRI and I actually had a few. 2-rectal, 2-uterus, 1-bladder and 1-external.
My GI doc then sent me to another doc in 2009, that only specialized in medicine. By 2010 I was approved for Humira. It will be 2 years this October that I have been on this with much relief of bone pain but Crohn's and UC are still present but bearable. The fistulas didn't heal either at 1week injection intervals, so I'm waiting on the referral to another GI doc to fix this by surgery.
Through the 19 years of dealing with this, I have also suffered on and off with depression...kinda the ole, Sick of being sick! So many up's and downs!
So that is my story, there is much more but I think I have dragged it out long enuff.
I stumbled across this site by accident while looking up vaginal fistula's. I have to say...It was a good stumble
Side-note. For those that are reading this and are relatively new to Crohn's, don't forget...I didn't have internet 19yrs back to get info. Crohn's wasn't as common as it is now.
Back in April 1993 (I was 19yrs) I had a beautiful baby girl. I had always had blacking out episodes since I was little so my doc decided to take her by C-sect. lol, I was fine with that!
So things were good, tummy was healing great then I got my first "flu" this went on for about 6 months. From my family doc to the ER, everyone kept saying I had the "Flu" go home and let it run it's course. Okay, now I'm down to 73lbs (was 175 after baby) Mom was force feeding me ice, dad was carrying me to toilet and mom was cleaning my bum...nice, I was 19!! my dad had enuff, carried my to the truck and took me back to the ER. Nurse took one look at me and rushed me in to a room without even registering me in. I was one day away from death, one more day and I would have been carried into the morgue.
My first doc was a moron! Diagnosed me with Hodgkins disease and or possibly Parkinson's disease...his bedside manors were terrible as well. My last words to him were not purdy lol
months in and out of the hospital, I finally got a doc that diagnosed me with severe Crohn's and Ulcerative Colitis..yeah, double the fun!
I was put on the beginning Crohn's meds (Sulfa based) with no relief, so he put me on 100mg of prednisone/day and this helped. I went into remission for about 1 year and landed back in the hospital. This doc was prednisone happy and wanted me to continue with that treatment. It wasn't working, so why bother?!
I also developed severe RH, my whole body was affected and lots of bone pain! It was so bad, I was told I'd be in a wheelchair soon and they were talking hip replacements and rib cracking. My ribs were curling into my lungs, bone doc wanted to wait and see before she did surgery on this.
New doc in 1998....A few more meds were tried, a few more meds that didn't work! This doc ran down the list from mild to potent drugs, my body kept rejecting the meds and I was getting worse. She was baffled, I was getting side effects that were not even listed. I was then approved for Remicade treatment around 1998/1999. This was fantastic, I could eat and I could walk!! For about 4months, then my body rejected that too. I was very sick from it.
With loss for treatment, I gave up and just let my Crohn's and UC do it's thing...until I got extremely sick in 2002, scope was done and so were my intestines. Worse case my doc had ever seen and dealt with. My intestines were black and dying, surgery time. I had my bowel resect done in January of 2003. I lost 3/4's of my large and 1/3 of my small and landed in the ICU for 2weeks cause the surgery went wrong!! The staples didn't hold and I was bleeding internally. I was passing large amounts of black blood and passed a clot the size of an apple. I was in Hospital for 5 weeks with a surgery that only required up to 1week stay.
The surgery wasn't a success and I was back to dealing with my Crohn's and UC on top of the extreme bone pain. I was then put on Imuran and this was not good. I was admitting into the hospital yet again. The Imuran attacked my pancreas, man, I felt like death!!
So, I dealt with this on my own for a few years with the help of small doses of prednisone from my family doc.
In 2005, I purchased a horse, she was my lifeline and kept me out of the hospital. I now had something that relied on me to feed and clean, I had no choice but to have to get up and go. This was the best thing I did for myself! I felt great, she saved me from the wheelchair. She passed away in 2009
In 2008, I got really sick with some horrible Flu (yes was really a flu this time) It was at this time I developed the fistulas...talk about PAIN!! WOW! This fistula mad it's way from butt to vag and blew open there..friggin' painful I tell ya. II was sent for a MRI and I actually had a few. 2-rectal, 2-uterus, 1-bladder and 1-external.
My GI doc then sent me to another doc in 2009, that only specialized in medicine. By 2010 I was approved for Humira. It will be 2 years this October that I have been on this with much relief of bone pain but Crohn's and UC are still present but bearable. The fistulas didn't heal either at 1week injection intervals, so I'm waiting on the referral to another GI doc to fix this by surgery.
Through the 19 years of dealing with this, I have also suffered on and off with depression...kinda the ole, Sick of being sick! So many up's and downs!
So that is my story, there is much more but I think I have dragged it out long enuff.
I stumbled across this site by accident while looking up vaginal fistula's. I have to say...It was a good stumble
