My story starts in 1981 at the tender age of 23. I had just gotten married 3 months before, honeymooned in Cancun, gone through a completely stressful holiday season (both sets of parents were upset at how we were splitting our time - hard feelings over the wedding, etc.) In hindsight, we should have taken the money and eloped!!
It started with me having severe diarrhea and hemorrhaging. My GP put me on ampecillin, thinking I had some kind of bug, which only made me worse. I ended up in the downstairs bathroom passed out in the middle of the night, after bleeding out copious amount of blood. Luckily my husband heard me when I yelled and called the ambulance. I had dropped 15 pounds I could not afford to lose in the 2 weeks prior...
WARNING: Graphic!!
Long stay in the hospital ensued - I got over 30 units of blood, nearly died at one point - I remember my BP was so bad I was on a tilt table which they put my head down to get the blood to my brain. I had a swan ganz in my arm (measures BP internally). First exploratory surgery did not show where the bleeding came from. I'm a little fuzzy on all the details - haha - but I do know I ended up with a diagnosis of Crohns after the 2nd colonoscopy (I remember a barium enema in there also). Many procedures ensued trying to find the source of the bleeding, including a small bowel resection to remove some "funny" looking bowel. Long story short, I was in ICU for 7 weeks with a surgical site left wide open with drains in and 2 fistulas healing from the inside out. I was on TNP and lipids for a total of 12 weeks. They were waiting for the fistulas to heal from the inside out since I was so weakened. I went from a skinny 132 lbs (5'8") to 110 to 150. I looked pregnant due to the swelling and edema from all the prednisone (solumedrol). It was very shocking and scary to say the least.
That was when I knew my husband was a keeper. He spent every possible moment with me, never gave up, supported me when I cried, and continued to work full time. I was lucky not to lose my new job during all this - it was back in the days when companies still cared - lol!
Once one fistula healed they decided the other one wouldn't heal on its own, so I had a fistulaectomy. Total time in hospital -- 99 days. Phew!
Life went on, I worked full time and rode the merry-go-round of prednisone and getting off prednisone. In 1985 we decided to try for kids, but after 6 months, we were quickly fast-tracked into the infertility life. Tests proved my tubes were covered in scar tissue, so we started going the IVF route. Lots of first time procedures (I have been written up in so many journals it's not funny!). After 5 IVF tries, we have 2 healthy kids. I was his first repeat customer - haha.
I had another hemorrhage in 1985, ending up in the hospital for a month that time. Again, never found the source of the bleeding after numerous NEW procedures (nuclear medicine, etc.). Ho hum...
Fast forward to 2009 - after dealing with years of horrible pain, it culminated in an abscess which was drained surgically. I was left with an abdominal fistula just above my pelvis. Again, tried numerous things as far as wound care - different packing, etc. Sooo tired of packing that stupid thing. Tried Humira for 18 months which did nothing. Finally decided to go the surgical route, which is also a risk after my numerous surgeries (forgot to mention my surgery to remove adhesions in 1995). Got recommendations to go to Johns Hopkins and use the medical expertise of the big city (I live in the boonies!).
Surgery was April 12 2011, verrry successful. Removed the fistula, another 18 inches of small bowel where there was inflammation and a stricture, unknotted my twisted bowel but preserved 7 feet so I didn't end up with a bag (YAY!!) and oh yeah - broke up more adhesions. Long convalescence, each surgery gets harder and harder!! I STILL have a small wound which needs packing in the surgical incision. So we are still packing. Thank goodness my husband is not squeamish!
OK WAKE UP!
So if you are still reading, thanks! I included all the details so when you see my posts, I have some credibility - haha.
Looking forward to meeting all of you!
Sudsmom
54YO Crohns since 1981. Psoriasis since I went off Humira in March (YUK!) Current meds: Asacol, narcotic for pain, nexium, probiotic. Numerous creams for psoriasis.
It started with me having severe diarrhea and hemorrhaging. My GP put me on ampecillin, thinking I had some kind of bug, which only made me worse. I ended up in the downstairs bathroom passed out in the middle of the night, after bleeding out copious amount of blood. Luckily my husband heard me when I yelled and called the ambulance. I had dropped 15 pounds I could not afford to lose in the 2 weeks prior...
WARNING: Graphic!!
Long stay in the hospital ensued - I got over 30 units of blood, nearly died at one point - I remember my BP was so bad I was on a tilt table which they put my head down to get the blood to my brain. I had a swan ganz in my arm (measures BP internally). First exploratory surgery did not show where the bleeding came from. I'm a little fuzzy on all the details - haha - but I do know I ended up with a diagnosis of Crohns after the 2nd colonoscopy (I remember a barium enema in there also). Many procedures ensued trying to find the source of the bleeding, including a small bowel resection to remove some "funny" looking bowel. Long story short, I was in ICU for 7 weeks with a surgical site left wide open with drains in and 2 fistulas healing from the inside out. I was on TNP and lipids for a total of 12 weeks. They were waiting for the fistulas to heal from the inside out since I was so weakened. I went from a skinny 132 lbs (5'8") to 110 to 150. I looked pregnant due to the swelling and edema from all the prednisone (solumedrol). It was very shocking and scary to say the least.
That was when I knew my husband was a keeper. He spent every possible moment with me, never gave up, supported me when I cried, and continued to work full time. I was lucky not to lose my new job during all this - it was back in the days when companies still cared - lol!
Once one fistula healed they decided the other one wouldn't heal on its own, so I had a fistulaectomy. Total time in hospital -- 99 days. Phew!
Life went on, I worked full time and rode the merry-go-round of prednisone and getting off prednisone. In 1985 we decided to try for kids, but after 6 months, we were quickly fast-tracked into the infertility life. Tests proved my tubes were covered in scar tissue, so we started going the IVF route. Lots of first time procedures (I have been written up in so many journals it's not funny!). After 5 IVF tries, we have 2 healthy kids. I was his first repeat customer - haha.
I had another hemorrhage in 1985, ending up in the hospital for a month that time. Again, never found the source of the bleeding after numerous NEW procedures (nuclear medicine, etc.). Ho hum...
Fast forward to 2009 - after dealing with years of horrible pain, it culminated in an abscess which was drained surgically. I was left with an abdominal fistula just above my pelvis. Again, tried numerous things as far as wound care - different packing, etc. Sooo tired of packing that stupid thing. Tried Humira for 18 months which did nothing. Finally decided to go the surgical route, which is also a risk after my numerous surgeries (forgot to mention my surgery to remove adhesions in 1995). Got recommendations to go to Johns Hopkins and use the medical expertise of the big city (I live in the boonies!).
Surgery was April 12 2011, verrry successful. Removed the fistula, another 18 inches of small bowel where there was inflammation and a stricture, unknotted my twisted bowel but preserved 7 feet so I didn't end up with a bag (YAY!!) and oh yeah - broke up more adhesions. Long convalescence, each surgery gets harder and harder!! I STILL have a small wound which needs packing in the surgical incision. So we are still packing. Thank goodness my husband is not squeamish!
OK WAKE UP!
So if you are still reading, thanks! I included all the details so when you see my posts, I have some credibility - haha.
Looking forward to meeting all of you!
Sudsmom
54YO Crohns since 1981. Psoriasis since I went off Humira in March (YUK!) Current meds: Asacol, narcotic for pain, nexium, probiotic. Numerous creams for psoriasis.
You sure have been through the mill. Good on you for remaining so positive and cheerful. I really hope your last surgery IS your last.
