So my story starts in 2006 actually.
At age 16 I noticed cramps in my legs, abdominal and pelvic pain. After many inconclusive test my doc said I probably had a UTI. 1 wk later my abdomen developed odd red bruises, I had a large amount of blood in my stool, and my leg cramps and abdominal pain was worse...something was wrong.
Went to the doc and I was a direct admit, I was having palpitations and was so pale. They determined I had a large DVT but they still couldn't explain the abdominal bruising and the other sx. I had a cystoscopy and a colonoscopy and ultrasounds and they found a large amounth of hematomas and blood on the outer wall of my bladder and inflammation in my colon. I was a mystery and getting worse by the hour.
I had a bad episode of palpitations and couldn't breathe, they but me on O2 and did a chest XR and found my DVT had moved to the upper part of my lung. The doctors were very concerned about me at the point because despite the bleed going on in my colon and bladder, they had to put me on IV heparin to dissolve the clot. This was very risky and they were not sure if I would make it. AFter 7 days in ICU and 10 days at a University, they still didn't know what caused my massive bleed. They speculated that maybe the BCP I was on had a role, and I also had an elevated Factor 8 which eventually went back into range.
So after 4 yrs of coumadin therapy and 2 yrs of a maintanance dose of Asacol to bring down the inflammation in my colon, I was stable. I had no flares and they said I was good as new. My GI doc said my colo and other labs were inconclusive and that this was probably an isolated event....I thought it was over, I was wrong....
Oct 2011 I had foot surgery and was put on a 6 wk course of coumadin to prevent a recurring DVT. For months after I had a hard recovery and didn't feel well. Then I began noticing abdominal pain that was progressively getting worse. It became so severe I was nauseous and couldn't work. Went to the doc and he was worried I had appendicitis, but my labs were perfect. 2 days late I freaked out because I had blood in my stool. I was so scared I cried and feared the worse. I was put back on Asacol to see if that would help and was referred to my GI.
After a colonoscopy there were several large lesions, bleeding and inflammation which to him looked more like Crohn's. But the biopsies just showed inflammation, not specifically crohn's. I had lots of labs and the stupid IBD 7 test which was also inconclusive.
After all that he is almost sure it is crohn's. I did a 6 wk course of high dose steroids...1/2 way through I almost just wanted to be in pain w/ o the med because I felt so manic, crazy, depressed, hungry, I had graphic nightmares, became compulsive, my ****s lost their shape and all I could think about was food.
At this point I am still having a hard time dealing w/ the constant discomfort and trying to find a med that works. At this point I am very discouraged not knowing exactly what is happening to my body and knowing I might have to be put on a stronger med. Also w/ my clotting history and crohn's, pregancy is dangerous and discouraged. This is so sad to me because I really want kids and I don't know what I would do if I couldn't have them.
Anyway....God is good and I will make it through, just trying to get through each day as it comes.
Jamie
At age 16 I noticed cramps in my legs, abdominal and pelvic pain. After many inconclusive test my doc said I probably had a UTI. 1 wk later my abdomen developed odd red bruises, I had a large amount of blood in my stool, and my leg cramps and abdominal pain was worse...something was wrong.
Went to the doc and I was a direct admit, I was having palpitations and was so pale. They determined I had a large DVT but they still couldn't explain the abdominal bruising and the other sx. I had a cystoscopy and a colonoscopy and ultrasounds and they found a large amounth of hematomas and blood on the outer wall of my bladder and inflammation in my colon. I was a mystery and getting worse by the hour.
I had a bad episode of palpitations and couldn't breathe, they but me on O2 and did a chest XR and found my DVT had moved to the upper part of my lung. The doctors were very concerned about me at the point because despite the bleed going on in my colon and bladder, they had to put me on IV heparin to dissolve the clot. This was very risky and they were not sure if I would make it. AFter 7 days in ICU and 10 days at a University, they still didn't know what caused my massive bleed. They speculated that maybe the BCP I was on had a role, and I also had an elevated Factor 8 which eventually went back into range.
So after 4 yrs of coumadin therapy and 2 yrs of a maintanance dose of Asacol to bring down the inflammation in my colon, I was stable. I had no flares and they said I was good as new. My GI doc said my colo and other labs were inconclusive and that this was probably an isolated event....I thought it was over, I was wrong....
Oct 2011 I had foot surgery and was put on a 6 wk course of coumadin to prevent a recurring DVT. For months after I had a hard recovery and didn't feel well. Then I began noticing abdominal pain that was progressively getting worse. It became so severe I was nauseous and couldn't work. Went to the doc and he was worried I had appendicitis, but my labs were perfect. 2 days late I freaked out because I had blood in my stool. I was so scared I cried and feared the worse. I was put back on Asacol to see if that would help and was referred to my GI.
After a colonoscopy there were several large lesions, bleeding and inflammation which to him looked more like Crohn's. But the biopsies just showed inflammation, not specifically crohn's. I had lots of labs and the stupid IBD 7 test which was also inconclusive.
After all that he is almost sure it is crohn's. I did a 6 wk course of high dose steroids...1/2 way through I almost just wanted to be in pain w/ o the med because I felt so manic, crazy, depressed, hungry, I had graphic nightmares, became compulsive, my ****s lost their shape and all I could think about was food.
At this point I am still having a hard time dealing w/ the constant discomfort and trying to find a med that works. At this point I am very discouraged not knowing exactly what is happening to my body and knowing I might have to be put on a stronger med. Also w/ my clotting history and crohn's, pregancy is dangerous and discouraged. This is so sad to me because I really want kids and I don't know what I would do if I couldn't have them.
Anyway....God is good and I will make it through, just trying to get through each day as it comes.
Jamie
