- Joined
- Apr 15, 2015
- Messages
- 1
Travel back in time to late 1991. I was a junior in high school on Christmas break. I thought I had a bad stomach flu (because my mom was sick too), but I just couldn't shake it. My parents took me to the doctor who decided I need a lower GI (nothing says fun to a 16 year old like radioactive material up the bum!). We waited several days for the doctor to call with the results (he didn't & my parents had to call his office several times). He told my parents that I didn't have Crohn's or UC and to take Metamucil and I would be fine (no, this is not a joke!). Thankfully, my parents are not idiots and decided I needed to see another doctor. By this point, it was late January 1992 and the best way to describe my day-to-day life is to say that at first, during an hour-long program on TV, I would be in the bathroom at every commercial break, but by late January, I was in the bathroom during each segment as well. The nice (nice being relative) thing was I had a Jack-and-Jill bathroom, so I just pointed the TV toward the bathroom and left the door open so that I could at least have some entertainment while in the bathroom. 
oo:
My parents asked a nurse who went to our church if she could recommend a doctor and we were able to get in to see her a few days later. She took my blood pressure laying down, sitting, and standing and when I was standing, I had no blood pressure. She told my parents that while she didn't know exactly what was wrong with me, she knew at least that I was severely dehydrated. So I was put in a wheelchair and wheeled across the street to the hospital. The next day I had my first colonoscopy and I had ulcers the size of dimes in my colon. Hello, UC! A few days in the hospital, with high doses of prednisone and a few other fun drugs, I was sent home. My mother always says that if you want to learn about something, go to the library and find a book on it (this was pre-internet days after all) and so I checked out a few books on UC and Crohn's. What I learned that stuck with me after all these years was that a lower GI would not show UC until you had had it for at least 7 years. So, I had to undergo an embarrassing and unpleasant test for no good reason. Lesson learned, I am very suspicious of tests to this day.
I had a series of ups and downs through the fall of 1992. I was in such bad shaped that my GI sent me to UCSF Med Center because he was thinking that I would need surgery right away. Well, I didn't have surgery then as they played with dosages of various meds (especially the prednisone) and seems got back to normal (or as normal as things got for me). Because I was so sick, I had to go on Medical Home Schooling for my senior year. Then in January of 1993, I was back in the local hospital and my GI doctor performed another (my last ever) colonoscopy. He did not finish it as he feared he had perforated my colon. Back to UCSF I went. I was referred to a colo-rectal surgeon and at the time, he was one of two doctors in CA who performed the procedure. On February 11, 1993, I had the J-pouch procedure.
Things seemed to be going fine, for a few weeks. In March of 1993, I developed a complication. I went to see my local GI and he said that this was common with the surgery and that it would "heal on its own." (It's been 22 years and it still hasn't healed.) However, things got even worse. I was having terrible pains in my leg and I was sent back to UCSF on April 1, 1993 (some April Fool's joke, huh?!?). I don't remember much of the first week or so of April 1993 as I was so ill, that I almost died. I had to have surgery to drain an abscess that had developed and I had to have a temporary ileostomy (my first surgery was done in one step). I was released from the hospital at the end of April.
I gradually improved and the abscess shrank, so in July 1993, I had surgery to take down the ileostomy. I left with a 4-inch by 4-inch hole that had to be packed with gauze several times a day (trust me, I never needed to see the muscles in by abdomen). I went off to college, packing the wound (I warned my dormmates that I had to do this, just in case they walked in and saw me...what an icebreaker with 3 strangers!), and tapering off the 85 mg of prednisone that I had to take daily. After about a month in school, the first complication I noticed (a fistula) reared its ugly head and I've been dealing with it ever since.
In July 1997, I took a trip and I came back feeling unwell. I made an appointment with a friend's GI near my college, but the office sent me to a different doctor who performed a flexible sigmoidoscopy on my (with his shoulder in a sling) and when I came home, I was experiencing bleeding from the rectum. It stopped in a few hours, but I should have know that it was a sign of bad things to come. In December of 1997, I went back to the hospital with a "infection of unknown origin at the base of my spine." I knew where it came from, but since the hole had closed (after creating the pocket of infection), the doctors at UCLA didn't believe me. I had a horrid experience at UCLA and I wouldn't wish it on my worst enemy. I did recover, eventually.
After my first surgery in 1993, the doctor told me that I should not "just get pregnant" and I decided when I was 22 that I didn't really want children anyway. That made dating unpleasant because most guys want kids and I was not willing to risk my health to have them. I got married for the first time 3 years ago (when I was 36) and my hubby is pretty great (and he doesn't want kids either). We are both teachers, so we get our fill of kids at work.
My fistula over the last year and a half had progressively worsened. Over the years, I would ask various GI doctors if there was any fix for it and I was told no repeatedly. I started Goggling for it a few years ago and I finally found a surgical fix for it. About a month ago, I went to see a colo-rectal surgeon to get the ball rolling. I was thinking positively after meeting with her. I felt comfortable with her (which is very important, as we all know). She had me have a procedure so that she could see the whole situation and as I was coming out of the twilight sleep, she told me that my pouch was seriously inflamed and ulcerated looking (I believe her exact words were "it looked like it had been dragged down the street", YIKES!), so she took a biopsy of it and she wanted me to have the Prometheus panel done to check for Crohn's. She called my about 2 hours ago and told me the biopsy was inconclusive and the numbers in the Prometheus panel could indicate Crohn's.
So now, 23 years from my initial diagnoses, I'm back at the waiting game. I am going to see a GI doctor next week at the Inflammatory Bowel Disease Center at Cedars-Sinai. My family history does not offer much because my mother has been diagnosed with IBS and my father had UC. I have a cousin (on my mother's side) who also has UC and cousins on my father's side have also had intestinal issues, but I don't think they were ever diagnosed with UC or Crohn's.
I envy people who can choose to not use nasty public restrooms; I used to know every reasonably clean restroom in the town where I grew up. I took many rolls of my own toilet paper to Italy (came in handy in Naples where the restroom at the National Archaeological Museum had no toilet seats, so I made my own seat/seat cover). My husband is a good sport about occasionally having to change plans because I'm having issues. I teach in an alternative education program, so I am able to go to the restroom whenever I want. I am pretty flexible with my diet; I've never cut out things like gluten or dairy and I avoid (to the best of my ability) to eat foods that bother me. However, sometimes I do eat something that I know will bother me, because I feel life is short and I deserve to enjoy it. If I avoided all the foods that have bothered me at some point, then I would be down to eating bread and cheese three times a day.
I think I have a pretty good sense of humor about all this (I think those of use with IBD have to have a good sense of humor, otherwise we would never survive!). I was just feeling down after talking with the doctor and so I found this group. I think it is easier to deal with this by talking to people who really understand what it is like. :ysmile:
oo:My parents asked a nurse who went to our church if she could recommend a doctor and we were able to get in to see her a few days later. She took my blood pressure laying down, sitting, and standing and when I was standing, I had no blood pressure. She told my parents that while she didn't know exactly what was wrong with me, she knew at least that I was severely dehydrated. So I was put in a wheelchair and wheeled across the street to the hospital. The next day I had my first colonoscopy and I had ulcers the size of dimes in my colon. Hello, UC! A few days in the hospital, with high doses of prednisone and a few other fun drugs, I was sent home. My mother always says that if you want to learn about something, go to the library and find a book on it (this was pre-internet days after all) and so I checked out a few books on UC and Crohn's. What I learned that stuck with me after all these years was that a lower GI would not show UC until you had had it for at least 7 years. So, I had to undergo an embarrassing and unpleasant test for no good reason. Lesson learned, I am very suspicious of tests to this day.
I had a series of ups and downs through the fall of 1992. I was in such bad shaped that my GI sent me to UCSF Med Center because he was thinking that I would need surgery right away. Well, I didn't have surgery then as they played with dosages of various meds (especially the prednisone) and seems got back to normal (or as normal as things got for me). Because I was so sick, I had to go on Medical Home Schooling for my senior year. Then in January of 1993, I was back in the local hospital and my GI doctor performed another (my last ever) colonoscopy. He did not finish it as he feared he had perforated my colon. Back to UCSF I went. I was referred to a colo-rectal surgeon and at the time, he was one of two doctors in CA who performed the procedure. On February 11, 1993, I had the J-pouch procedure.
Things seemed to be going fine, for a few weeks. In March of 1993, I developed a complication. I went to see my local GI and he said that this was common with the surgery and that it would "heal on its own." (It's been 22 years and it still hasn't healed.) However, things got even worse. I was having terrible pains in my leg and I was sent back to UCSF on April 1, 1993 (some April Fool's joke, huh?!?). I don't remember much of the first week or so of April 1993 as I was so ill, that I almost died. I had to have surgery to drain an abscess that had developed and I had to have a temporary ileostomy (my first surgery was done in one step). I was released from the hospital at the end of April.
I gradually improved and the abscess shrank, so in July 1993, I had surgery to take down the ileostomy. I left with a 4-inch by 4-inch hole that had to be packed with gauze several times a day (trust me, I never needed to see the muscles in by abdomen). I went off to college, packing the wound (I warned my dormmates that I had to do this, just in case they walked in and saw me...what an icebreaker with 3 strangers!), and tapering off the 85 mg of prednisone that I had to take daily. After about a month in school, the first complication I noticed (a fistula) reared its ugly head and I've been dealing with it ever since.
In July 1997, I took a trip and I came back feeling unwell. I made an appointment with a friend's GI near my college, but the office sent me to a different doctor who performed a flexible sigmoidoscopy on my (with his shoulder in a sling) and when I came home, I was experiencing bleeding from the rectum. It stopped in a few hours, but I should have know that it was a sign of bad things to come. In December of 1997, I went back to the hospital with a "infection of unknown origin at the base of my spine." I knew where it came from, but since the hole had closed (after creating the pocket of infection), the doctors at UCLA didn't believe me. I had a horrid experience at UCLA and I wouldn't wish it on my worst enemy. I did recover, eventually.
After my first surgery in 1993, the doctor told me that I should not "just get pregnant" and I decided when I was 22 that I didn't really want children anyway. That made dating unpleasant because most guys want kids and I was not willing to risk my health to have them. I got married for the first time 3 years ago (when I was 36) and my hubby is pretty great (and he doesn't want kids either). We are both teachers, so we get our fill of kids at work.
My fistula over the last year and a half had progressively worsened. Over the years, I would ask various GI doctors if there was any fix for it and I was told no repeatedly. I started Goggling for it a few years ago and I finally found a surgical fix for it. About a month ago, I went to see a colo-rectal surgeon to get the ball rolling. I was thinking positively after meeting with her. I felt comfortable with her (which is very important, as we all know). She had me have a procedure so that she could see the whole situation and as I was coming out of the twilight sleep, she told me that my pouch was seriously inflamed and ulcerated looking (I believe her exact words were "it looked like it had been dragged down the street", YIKES!), so she took a biopsy of it and she wanted me to have the Prometheus panel done to check for Crohn's. She called my about 2 hours ago and told me the biopsy was inconclusive and the numbers in the Prometheus panel could indicate Crohn's.
So now, 23 years from my initial diagnoses, I'm back at the waiting game. I am going to see a GI doctor next week at the Inflammatory Bowel Disease Center at Cedars-Sinai. My family history does not offer much because my mother has been diagnosed with IBS and my father had UC. I have a cousin (on my mother's side) who also has UC and cousins on my father's side have also had intestinal issues, but I don't think they were ever diagnosed with UC or Crohn's.
I envy people who can choose to not use nasty public restrooms; I used to know every reasonably clean restroom in the town where I grew up. I took many rolls of my own toilet paper to Italy (came in handy in Naples where the restroom at the National Archaeological Museum had no toilet seats, so I made my own seat/seat cover). My husband is a good sport about occasionally having to change plans because I'm having issues. I teach in an alternative education program, so I am able to go to the restroom whenever I want. I am pretty flexible with my diet; I've never cut out things like gluten or dairy and I avoid (to the best of my ability) to eat foods that bother me. However, sometimes I do eat something that I know will bother me, because I feel life is short and I deserve to enjoy it. If I avoided all the foods that have bothered me at some point, then I would be down to eating bread and cheese three times a day.
I think I have a pretty good sense of humor about all this (I think those of use with IBD have to have a good sense of humor, otherwise we would never survive!). I was just feeling down after talking with the doctor and so I found this group. I think it is easier to deal with this by talking to people who really understand what it is like. :ysmile:
