Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Friday, August 30, 2013
Doctor is FINALLY making changes
Early this morning I had a Doctor appointment. I have been looking forward to this appointment for 2 weeks. See 2 weeks ago I had a terrible flare up, fever (102.7), mouth sores, abdominal cramping, diarrhea. Fellow chronies you know this is a typical flare up. My problem is I had 3 great months (April, May &June). I didn't wake up sick once & now it seems like I'm right back into my old habits. Feel good for a week then I'm sick for 10 days & it's a terribly vicious cycle. So July flare ups weren't this bad, but now they are back and I hate every moment of them. I also started a new job & I can't take off but I am not productive & I feel awful on a daily basis so I'm struggling. So today I went to my doctor and made him well aware that everything is no longer good, I'm fearful of my disease and the fact that we haven't controlled it yet. I made him aware of my new job & the symptoms I have, along with the number of accidents I've had post surgery, which I still find to be so embarrassing. I feel like with my doctor you have to become stern if you want results otherwise he doesn't take me seriously. So today I was stern & shocker he decided that we need to reevaluate my medicines. So I was ordered a stool test, a MR enterography, a specific blood test (test Remicade effectiveness),added an all natural iron vitamin, & added Ciproflaxcin to my list of current medicine. I go back on September 10 for results and the new plan. Lets hope we have answers as to why I'm having these flares up & a new method to fight my disease. I am just so sick of being sick. Those 3 months were amazing & I will hold onto those moments as long as possible. However, being so sick again is making those great months seem like such a distant memory, almost like it was all just a dream. Crohn's Casualties please give me your suggestions on how to handle the day to day activities while battling a flare up...I've added Imodium as needed to help make it so I have less accidents when I know I can't make it to a bathroom for a period of time as per my doctors instructions. We all know curling up on the curling up on the couch to indulge in a good memory is preferable solution, but I do not have this option with work. Thank you for any suggestions in advance. I and my bowels appreciate it. I hope everyone enjoys their Labor Day weekend. Take Care
Thursday, April 11, 2013
Being my doctor's first ;)
Sorry I haven't written in a few days. I meant to write every other day, but work has been crazy busy and by time I get home I just want to make dinner and then relax on the couch with my boyfriend until bedtime. Plus these last 3 days my neck has been so stiff and tight I can't even turn my head, and I've called 3 license massage therapists and none of them can help me...TALK ABOUT FRUSTRATING!!
So now...back to my trip to the ER. I had been sent down for a CT scan, and the techs started the scan and immediately found 2 pockets of fluid in my abdominal area. The fluid had been coming out of my surgery site. I had an adhesion leak after surgery.
Side note about this. At my pre-op my surgeon had been very confident in his ability to resection my intestine and not have any issues. He also had never had an adhesion leak in any of his previous surgeries. WELL, dun dun dun surprise Annika's body has to be difficult. I was his very first adhesion leak. See my surgery went as planned, and I seemed to be healing properly when they released me from the hospital. But like I just said, my body had to be difficult, so my intestines although stitched together decided that they wouldn't grow back together which left an opening that allowed fluids & digested food to leak into my body. That became infected because it's waste that is inside your body pushing against organs, and the pain was immense.
The doctors had to relieve the pressure that was on my organs caused by the pooling fluids, and also remove the fluids from my body since they are toxic to my system. So 2 tubes would have to inserted and the pool would have to be puncture and most sucked out, and then the tubes would remain until the pooling level was less than 10cc. So I was given another diluadid and sent to a CT operating room area where they could use the scan to see the needle placement, and make sure they were puncturing the fluids. The doctors decided they would try for the one in my back first, and I thought they were crazy. Here I am a girl in terrible stomach pain and they need me to lay on my stomach, but I should of known how well the diluadid worked...I rolled over slowly still hesitant, but felt no pain at all until they got the needle close to the fluid sac. The needle and tubing didn't hurt at all, until they were unable to penetrate (Hate that word) the pooling. I remember screaming out in pain, crying, and pleading with the technician there to stop. After 3-4 times of them trying to poke through they finally were able to, and what came out was the most disgusting fluid that was brown and had small floaty things in it, and yeah it was just nasty. I couldn't keep my eyes off of the cylinder they were filling though, and the doctors removed 600cc from my back, and with that tubing in place were now ready to start on the front pouch. I don't remember the needle placement in my stomach because the drugs make you loopy, and they had no issue with poking the front fluid pouch so I can recall any pain. The doctors had extracted 600cc from my front pouch as well, and with all tubes in place each tube was then attached to their own bag.
I was instructed that I would remain in the hospital until my fluid leakage levels were under 100cc, and I would not be allowed to eat because I needed to be on COMPLETE bowel rest so I had a Hickman placed. A Hickman is a port that goes in just below the collar bone, and the line runs right into the artery that enters the right atrium. Outside the port are 2 lines, 1 is used for feeding (TPN) and 2 is used for administering medicine. The lines have to be cleaned out every morning and every night with saline.
There I was stuck in the same hospital room where I was right after surgery....I was even in the same bed, the nurses thought they were doing me a favor. I was not allowed to eat or drink anything. I was given a swab and a cup of ice water to keep my mouth from drying out. I would be "fed" TPN, which is a large bag of your body's daily nutrient requirement, and calories to maintain weight. Since the liquid is going straight to your heart then there is no need for any digestion, and the heart mixes the liquid with blood then sends it to its appropriate places.
So I was unable to eat, and now had 3 tubes just hanging out around me on my bed. I spent my days watching Food Network because I'm a glutton for punishment, and my boyfriend was there every day before he had to work and would allow me to smell his food. What a loving man :) I know it sounds weird to say I smelled food, but not allowed to eat it. I missed it so I just sniffed it and thought about how good it would taste if I could eat, and imagined I was full. I was never full, and always felt hungry even with my TPN. Finally after 5 days my leakage had decreased to about 110cc a day in each bag, and my surgeon felt that I may be able to go home in the next day. Best news ever for anyone whose ever been stuck in a hospital bed. Needless to say I was ecstatic to bust out of that Popsicle stand, but once again my body had to be difficult.
I'm going to end here for the day sorry for the cliffhanger again, but not really sorry because it means you have to return to find out what happened. Take care of yourself!
So now...back to my trip to the ER. I had been sent down for a CT scan, and the techs started the scan and immediately found 2 pockets of fluid in my abdominal area. The fluid had been coming out of my surgery site. I had an adhesion leak after surgery.
Side note about this. At my pre-op my surgeon had been very confident in his ability to resection my intestine and not have any issues. He also had never had an adhesion leak in any of his previous surgeries. WELL, dun dun dun surprise Annika's body has to be difficult. I was his very first adhesion leak. See my surgery went as planned, and I seemed to be healing properly when they released me from the hospital. But like I just said, my body had to be difficult, so my intestines although stitched together decided that they wouldn't grow back together which left an opening that allowed fluids & digested food to leak into my body. That became infected because it's waste that is inside your body pushing against organs, and the pain was immense.
The doctors had to relieve the pressure that was on my organs caused by the pooling fluids, and also remove the fluids from my body since they are toxic to my system. So 2 tubes would have to inserted and the pool would have to be puncture and most sucked out, and then the tubes would remain until the pooling level was less than 10cc. So I was given another diluadid and sent to a CT operating room area where they could use the scan to see the needle placement, and make sure they were puncturing the fluids. The doctors decided they would try for the one in my back first, and I thought they were crazy. Here I am a girl in terrible stomach pain and they need me to lay on my stomach, but I should of known how well the diluadid worked...I rolled over slowly still hesitant, but felt no pain at all until they got the needle close to the fluid sac. The needle and tubing didn't hurt at all, until they were unable to penetrate (Hate that word) the pooling. I remember screaming out in pain, crying, and pleading with the technician there to stop. After 3-4 times of them trying to poke through they finally were able to, and what came out was the most disgusting fluid that was brown and had small floaty things in it, and yeah it was just nasty. I couldn't keep my eyes off of the cylinder they were filling though, and the doctors removed 600cc from my back, and with that tubing in place were now ready to start on the front pouch. I don't remember the needle placement in my stomach because the drugs make you loopy, and they had no issue with poking the front fluid pouch so I can recall any pain. The doctors had extracted 600cc from my front pouch as well, and with all tubes in place each tube was then attached to their own bag.
I was instructed that I would remain in the hospital until my fluid leakage levels were under 100cc, and I would not be allowed to eat because I needed to be on COMPLETE bowel rest so I had a Hickman placed. A Hickman is a port that goes in just below the collar bone, and the line runs right into the artery that enters the right atrium. Outside the port are 2 lines, 1 is used for feeding (TPN) and 2 is used for administering medicine. The lines have to be cleaned out every morning and every night with saline.
There I was stuck in the same hospital room where I was right after surgery....I was even in the same bed, the nurses thought they were doing me a favor. I was not allowed to eat or drink anything. I was given a swab and a cup of ice water to keep my mouth from drying out. I would be "fed" TPN, which is a large bag of your body's daily nutrient requirement, and calories to maintain weight. Since the liquid is going straight to your heart then there is no need for any digestion, and the heart mixes the liquid with blood then sends it to its appropriate places.
So I was unable to eat, and now had 3 tubes just hanging out around me on my bed. I spent my days watching Food Network because I'm a glutton for punishment, and my boyfriend was there every day before he had to work and would allow me to smell his food. What a loving man :) I know it sounds weird to say I smelled food, but not allowed to eat it. I missed it so I just sniffed it and thought about how good it would taste if I could eat, and imagined I was full. I was never full, and always felt hungry even with my TPN. Finally after 5 days my leakage had decreased to about 110cc a day in each bag, and my surgeon felt that I may be able to go home in the next day. Best news ever for anyone whose ever been stuck in a hospital bed. Needless to say I was ecstatic to bust out of that Popsicle stand, but once again my body had to be difficult.
I'm going to end here for the day sorry for the cliffhanger again, but not really sorry because it means you have to return to find out what happened. Take care of yourself!
Saturday, April 6, 2013
Surgery and the beginning of what followed
So on June 26, 2012 I was scheduled for my resection surgery. We called the night before and were told to arrive at 7:30 am. We'd be the 1st surgery of the day, which I thought would be best. My mom, boyfriend, and step-dad went to the hospital with me, and we waited in a waiting room for what seemed like forever. This absolutely did not help my nerves. I was a 23 year old who had never had a hospital stay before or any type of surgery. I'd only ever broken my pinkie toe and cracked a rib before; both of which can not be fixed by visiting a doctor so I had let them heal on there own. Finally they take you into a bed and waiting chair room area that is separated by shower curtains. I changed into the dress that doesn't have a back, and man did I wear that gown well :) I was the best dressed patient there! I make jokes when I'm uncomfortable, similar to Chandler from Friends, and that's all I could do until they wheeled towards surgery. My surgeon came in to make sure I was holding up well, and I responded with "Well how did you sleep?, Are you well rested?, Did you eat so you're not hungry?, & Are you in a good mood?" Once he responded with appropriate answers I told him OK I'm ready. Then I don't remember anything.
After surgery, I was drugged pretty good, but some family stopped by to make sure I was holding up. I was advised to not do much moving as my abdominal muscles had been torn and needed to heal. I was informed that I had 2 other areas that were infected, but not as badly as the portion that had been removed. So I spent 3 days in the hospital and then I released. The worse car ride I ever had was on the way home from the hospital. It was awful, I was still drugged, dazed, and every bump made me sick. I returned home, and my boyfriend and friend Tori were there waiting for me. She had driven from Oneonta to spend my 1st week home with me. She was the best nurse....she helped tremendously, and always made sure I took my medicine. I had some abdominal pain, but I assumed it was just from me pulling myself up on the couch. When your abdominal muscles are torn you learn real quick that every movement requires abdominal muscles, and it takes a few minutes to move at all. So I was slow at getting up, and spent the week pretty much confined to the couch, and watched a lot of Netflix. Other down side is when everyone tries to make you smile, and you end up laughing...it hurt to laugh. My abdominal pain seem to be getting worse not better, but I didn't think much of it, and Tori returned back home. My boyfriend would spend every day with me until he had to go to work (at the time he worked 2nd & 3rd shift), and by time he left usually my mom was home.
So about 2 1/2 weeks after surgery I awoke one morning in the most excruciating pain. I was unable to lift myself from my bed. So I laid there screaming for my mom, but the fans were on since it was summer so I was drowned out. I had tried calling her from my cell phone, but that didn't work either. So I had no other choice but to try and get myself out of bed. It took me 45 minutes to get out of bed. I can not explain how bad I hurt, I was crying because every move, turn, motion, even breathing hurt, and I've always thought myself to have a pretty high tolerance for pain. I woke my mom, and she preceded to call my surgeon's office for the on call doctor. He called back right away and instructed us to go directly to E.R., which we were planning on anyway but he had notified them of my arrival. Once we arrived in E.R. they have to ask all the typical questions, and in between my sobbing I did my best to answer. I described my pain, told them my height, weight, that I just had surgery, and when they asked me to rate my pain I just looked at the nurse as tears rolled down my face, and she goes I'm guessing a 10 and I nodded. To this day (although it's only been approx. a year later) I have never felt such a pain. I was given a bed and room in E.R., and at this time my boyfriend was training in Ohio so he couldn't be with me. I'm sure he felt terrible about not being there.
A nurse came in and asked if I'd like some Dilaudid, and I declined.... I'm not big on drugs, but he wrote the order in so it could be filled if I wanted. The gastro dr. that was on call came in, and started pushing on my stomach, and I winced and nearly jumped out of my own skin. He suggested I take the dilaudid because he would be doing more poking and prodding of my stomach. I accepted, and then he poked some more before I even had the medicine and I just cried and screamed in pain. It took the nurse an additional 45 minutes before I received my dilaudid, which helped tremendously and I was able to nap. Mostly because dilaudid kicked my butt.
They had scheduled to send me for a CT to find out what exactly was going on, but I will write about what sent me to the hospital next time. If you have Crohn's or a relative who does please feel free to share your story. Any questions, insight, tid-bits please leave me a comment. Thanks for reading, and have a happy weekend :)
After surgery, I was drugged pretty good, but some family stopped by to make sure I was holding up. I was advised to not do much moving as my abdominal muscles had been torn and needed to heal. I was informed that I had 2 other areas that were infected, but not as badly as the portion that had been removed. So I spent 3 days in the hospital and then I released. The worse car ride I ever had was on the way home from the hospital. It was awful, I was still drugged, dazed, and every bump made me sick. I returned home, and my boyfriend and friend Tori were there waiting for me. She had driven from Oneonta to spend my 1st week home with me. She was the best nurse....she helped tremendously, and always made sure I took my medicine. I had some abdominal pain, but I assumed it was just from me pulling myself up on the couch. When your abdominal muscles are torn you learn real quick that every movement requires abdominal muscles, and it takes a few minutes to move at all. So I was slow at getting up, and spent the week pretty much confined to the couch, and watched a lot of Netflix. Other down side is when everyone tries to make you smile, and you end up laughing...it hurt to laugh. My abdominal pain seem to be getting worse not better, but I didn't think much of it, and Tori returned back home. My boyfriend would spend every day with me until he had to go to work (at the time he worked 2nd & 3rd shift), and by time he left usually my mom was home.
So about 2 1/2 weeks after surgery I awoke one morning in the most excruciating pain. I was unable to lift myself from my bed. So I laid there screaming for my mom, but the fans were on since it was summer so I was drowned out. I had tried calling her from my cell phone, but that didn't work either. So I had no other choice but to try and get myself out of bed. It took me 45 minutes to get out of bed. I can not explain how bad I hurt, I was crying because every move, turn, motion, even breathing hurt, and I've always thought myself to have a pretty high tolerance for pain. I woke my mom, and she preceded to call my surgeon's office for the on call doctor. He called back right away and instructed us to go directly to E.R., which we were planning on anyway but he had notified them of my arrival. Once we arrived in E.R. they have to ask all the typical questions, and in between my sobbing I did my best to answer. I described my pain, told them my height, weight, that I just had surgery, and when they asked me to rate my pain I just looked at the nurse as tears rolled down my face, and she goes I'm guessing a 10 and I nodded. To this day (although it's only been approx. a year later) I have never felt such a pain. I was given a bed and room in E.R., and at this time my boyfriend was training in Ohio so he couldn't be with me. I'm sure he felt terrible about not being there.
A nurse came in and asked if I'd like some Dilaudid, and I declined.... I'm not big on drugs, but he wrote the order in so it could be filled if I wanted. The gastro dr. that was on call came in, and started pushing on my stomach, and I winced and nearly jumped out of my own skin. He suggested I take the dilaudid because he would be doing more poking and prodding of my stomach. I accepted, and then he poked some more before I even had the medicine and I just cried and screamed in pain. It took the nurse an additional 45 minutes before I received my dilaudid, which helped tremendously and I was able to nap. Mostly because dilaudid kicked my butt.
They had scheduled to send me for a CT to find out what exactly was going on, but I will write about what sent me to the hospital next time. If you have Crohn's or a relative who does please feel free to share your story. Any questions, insight, tid-bits please leave me a comment. Thanks for reading, and have a happy weekend :)
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