Hi, my name is Georgette. I was diagnosed back in 2001, after five years of experimentation of what it is I had. I was not your poster child, I presented with a bartholin gland infection with constipation. The bartholin gland ruptured and I was now having fistula tracts in this area. it hurt to sit, stand, cough or laugh. I had three surgeries to try and close them or fix them to no avail. I was changing my underwear three times a day due to drainage and then finally went to just wearing a pad all the time.
Neither of my doctors understood what was going on. First they thought PID, then an STD( that was fun):thumbdown:. then one day my new OB/GYN after the third surgery said "hey, I had a patient like this 5 years ago. All this stuff was just masking Crohn's disease." Well, that was it. Gastro did the colonoscopy and sure enough.. my small intestine was not happy.
I was excited! I can get rid of these fistulas!!! Nope! They are with me forever! cry cry cry! Medicine 6mp I was on for two years, gave me adult on set Leukemia... so got off that and all better now! Apparently I am missing my p7 q22 gene. (so, I have cancer gene). Bone marrow aspirations are no fun by the way.
Had anaphylactic shock with remicade. So, now I was out of medicine options. 2007 bad year in and out of hospital, finally got my doctor to do surgery. I was pain free for about five years. Then I started having what I considered normal crohn's symptoms. rushing to the bathroom, diarrhea, stomach upset. Didn't have insurance so just had to push on. New fistula tracts formed.
Now, here I am 2014 and ob/gyn who is a vulvar specialist, recommends a surgeon (colorectal). Surgeon gives me news that rectal area not looking good Does a flexible sigmoiod oscopy and she says about six inches of rectal area had fistula tracts and unsure where thy start.
Looking at diversion surgery, to completely get rid of rectum. out of work for three months,and no heavy liffing for remained rest of my life-
Neither of my doctors understood what was going on. First they thought PID, then an STD( that was fun):thumbdown:. then one day my new OB/GYN after the third surgery said "hey, I had a patient like this 5 years ago. All this stuff was just masking Crohn's disease." Well, that was it. Gastro did the colonoscopy and sure enough.. my small intestine was not happy.
I was excited! I can get rid of these fistulas!!! Nope! They are with me forever! cry cry cry! Medicine 6mp I was on for two years, gave me adult on set Leukemia... so got off that and all better now! Apparently I am missing my p7 q22 gene. (so, I have cancer gene). Bone marrow aspirations are no fun by the way.
Had anaphylactic shock with remicade. So, now I was out of medicine options. 2007 bad year in and out of hospital, finally got my doctor to do surgery. I was pain free for about five years. Then I started having what I considered normal crohn's symptoms. rushing to the bathroom, diarrhea, stomach upset. Didn't have insurance so just had to push on. New fistula tracts formed.
Now, here I am 2014 and ob/gyn who is a vulvar specialist, recommends a surgeon (colorectal). Surgeon gives me news that rectal area not looking good Does a flexible sigmoiod oscopy and she says about six inches of rectal area had fistula tracts and unsure where thy start.
Looking at diversion surgery, to completely get rid of rectum. out of work for three months,and no heavy liffing for remained rest of my life-
