I was happy when I found this forum, I have been reading a lot of the threads most of yesterday and today and have already learned so much. This is going to be long, I'm just copying and pasting most of it as it's a lot to re-type!
I started feeling really ill in the begining of August, I had no desire to eat and was really nausous. Three days later, I had lost nine pounds and started running a fever which got up to 103 degrees. Anytime I took fever reducer, my fever would break but came back within a couple of hours. On August 12, 2011 I decided to head to urgent care since my fever kept coming back, the doctor told me I had a viral illness and advised me to take some ibuprofen for my fever and sent me on my way.
Three days later On Monday, August 15, 2011 I woke up and fed my kids - I felt the same as I had been feeling - achy, fever, tired, upset stomach etc. Suddenly, at 9am, I got the worst abdominal pain I have ever had in my life. I ran to the bathroom ( I felt like I had to throw up) and called my husband at work so he could come home and take care of our young kids and I called my sister so she could take me to the hospital (she's a firefighter/EMT and could explain stuff better to me if I didn't understand). I basically curled up in a ball crying while I was waiting for them because it hurt to move.
My husband and sister got to the house at the same time, they were both shocked to see that I was completely pale and my lips were blue. My husband asked me if I ate a popsicle, I told him I didn't. I had no idea this was going on as I hadn't moved from the couch. My husband carried me to the car and stayed home with the kids while my sister drove me to the hospital. Once I got to triage, they took my blood pressure - which was 80/40 and rushed me to a room because "I didn't look good" . Once I got in the ER, they hooked me up to fluids, ran some blood tests and did a CT scan. They saw that I had a lot going on in my stomach and needed to get a better look so they wanted to do another CT Scan. They gave me a contrast to drink and told me they would do a CT scan after 3 hours. Shortly after drinking the contrast, I realized I hadn't gone pee yet.
I knew I should have had the urge since I had a few bags of fluid and drank the whole contrast . I've had ONE bag of fluid before when I was severely dehydrated and I was in the bathroom shortly after. The doctor came in and I asked him if it was normal that I didn't need to pee and he told me no and left the room. Not much longer after that I was told I was being sent to emergency exploratory surgery and I was septic. They wheeled me into pre-op and told me all of the possible outcomes including a full hysterectomy, removal of both ovaries on top of many other things I can't remember since everything happened so fast. I hugged and kissed my family and babies for what could have been the last time since they didn't know if I would make it out of surgery. I was in surgery for a few hours, during that time, my blood pressure got down to 66/30. My surgeon came out to the waiting room and told my family that they removed my appendix, my right ovary, my right fallopian tube, my cecum, and 1 1/2 ft of my small intestine. My husband said he started off with decent news - they think they got all of the abscesses and everything. Then he went on to say that my kidneys had COMPLETELY shut down (which explains why I wasn't urinating) and there was a 50% chance they would start working again. He also said my lungs and heart were starting to shut down.
The general surgeon told my husband that the type of infection I had had a 60% death rate and if I had arrived at the hospital an hour or two later I would have been dead for sure. Shortly after I was out of surgery, my kidneys started functioning which was awesome news for everyone. I was put in a room in ICU and I was on a ventilator. I had a vertical scar going from above my belly button all the way to the bottom of my stomach. I also had three drains coming out of my stomach, at least 6 IV's in my hands/arms one of them included an arterial line. I also had a central line going into my internal jugular(IJ) vein in my neck - I was receiving TPN through the central line. I had two cart things full of medications including antibiotics, fluid, pain meds etc. After being intubated for two days, they decided to extubate me and while they did that I pulled out my tube out of my nose... oops! But they didn't put it back in so I was happy:ybiggrin: . Four days after being admitted I was stable enough to go to a regular room which means I got to see my babies!! yay! I had another CT scan because of pain I was having and I had another pocket of fluid so I had to have a procedure to have a drain inserted to remove the fluid - thankfully, they didn't have to leave the tube in! August 26th my surgeon came in with the pathology from my biopsy which came back positive for Crohn's disease.
I got my 3 drains removed and after two weeks in the hospital all I was waiting for was my central line removal and my presciption and I was being released! On Sept 7th I saw my GI dr from the hospital. He told me that the pathology dept at my hospital is horrible so he wanted to order me blood work (PROMETHEUS) and get a 2nd opinion results from the hospital. On Sept 27th, I had my follow up apt with my GI dr regarding my bloodwork, he said words I knew he would say but I was so afraid to hear" Your test came back positive for Crohn's disease" . He also told me that not only do I have Crohn's disease but that my Crohn's disease is aggressive . He had a conference call regarding my results, he got THREE opinions on my biopsy and the blood work and they ALL came back positive. I cried and cried and cried. He prescribed me Pentasa ( 2 pills, 4 times a day). A month or so later I ended up on Budesonide which I have since weaned from!
I started feeling really ill in the begining of August, I had no desire to eat and was really nausous. Three days later, I had lost nine pounds and started running a fever which got up to 103 degrees. Anytime I took fever reducer, my fever would break but came back within a couple of hours. On August 12, 2011 I decided to head to urgent care since my fever kept coming back, the doctor told me I had a viral illness and advised me to take some ibuprofen for my fever and sent me on my way.
Three days later On Monday, August 15, 2011 I woke up and fed my kids - I felt the same as I had been feeling - achy, fever, tired, upset stomach etc. Suddenly, at 9am, I got the worst abdominal pain I have ever had in my life. I ran to the bathroom ( I felt like I had to throw up) and called my husband at work so he could come home and take care of our young kids and I called my sister so she could take me to the hospital (she's a firefighter/EMT and could explain stuff better to me if I didn't understand). I basically curled up in a ball crying while I was waiting for them because it hurt to move.
My husband and sister got to the house at the same time, they were both shocked to see that I was completely pale and my lips were blue. My husband asked me if I ate a popsicle, I told him I didn't. I had no idea this was going on as I hadn't moved from the couch. My husband carried me to the car and stayed home with the kids while my sister drove me to the hospital. Once I got to triage, they took my blood pressure - which was 80/40 and rushed me to a room because "I didn't look good" . Once I got in the ER, they hooked me up to fluids, ran some blood tests and did a CT scan. They saw that I had a lot going on in my stomach and needed to get a better look so they wanted to do another CT Scan. They gave me a contrast to drink and told me they would do a CT scan after 3 hours. Shortly after drinking the contrast, I realized I hadn't gone pee yet.
I knew I should have had the urge since I had a few bags of fluid and drank the whole contrast . I've had ONE bag of fluid before when I was severely dehydrated and I was in the bathroom shortly after. The doctor came in and I asked him if it was normal that I didn't need to pee and he told me no and left the room. Not much longer after that I was told I was being sent to emergency exploratory surgery and I was septic. They wheeled me into pre-op and told me all of the possible outcomes including a full hysterectomy, removal of both ovaries on top of many other things I can't remember since everything happened so fast. I hugged and kissed my family and babies for what could have been the last time since they didn't know if I would make it out of surgery. I was in surgery for a few hours, during that time, my blood pressure got down to 66/30. My surgeon came out to the waiting room and told my family that they removed my appendix, my right ovary, my right fallopian tube, my cecum, and 1 1/2 ft of my small intestine. My husband said he started off with decent news - they think they got all of the abscesses and everything. Then he went on to say that my kidneys had COMPLETELY shut down (which explains why I wasn't urinating) and there was a 50% chance they would start working again. He also said my lungs and heart were starting to shut down.
The general surgeon told my husband that the type of infection I had had a 60% death rate and if I had arrived at the hospital an hour or two later I would have been dead for sure. Shortly after I was out of surgery, my kidneys started functioning which was awesome news for everyone. I was put in a room in ICU and I was on a ventilator. I had a vertical scar going from above my belly button all the way to the bottom of my stomach. I also had three drains coming out of my stomach, at least 6 IV's in my hands/arms one of them included an arterial line. I also had a central line going into my internal jugular(IJ) vein in my neck - I was receiving TPN through the central line. I had two cart things full of medications including antibiotics, fluid, pain meds etc. After being intubated for two days, they decided to extubate me and while they did that I pulled out my tube out of my nose... oops! But they didn't put it back in so I was happy:ybiggrin: . Four days after being admitted I was stable enough to go to a regular room which means I got to see my babies!! yay! I had another CT scan because of pain I was having and I had another pocket of fluid so I had to have a procedure to have a drain inserted to remove the fluid - thankfully, they didn't have to leave the tube in! August 26th my surgeon came in with the pathology from my biopsy which came back positive for Crohn's disease.
I got my 3 drains removed and after two weeks in the hospital all I was waiting for was my central line removal and my presciption and I was being released! On Sept 7th I saw my GI dr from the hospital. He told me that the pathology dept at my hospital is horrible so he wanted to order me blood work (PROMETHEUS) and get a 2nd opinion results from the hospital. On Sept 27th, I had my follow up apt with my GI dr regarding my bloodwork, he said words I knew he would say but I was so afraid to hear" Your test came back positive for Crohn's disease" . He also told me that not only do I have Crohn's disease but that my Crohn's disease is aggressive . He had a conference call regarding my results, he got THREE opinions on my biopsy and the blood work and they ALL came back positive. I cried and cried and cried. He prescribed me Pentasa ( 2 pills, 4 times a day). A month or so later I ended up on Budesonide which I have since weaned from!
