CONTACT INFO:
YouTube Channel: https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos
Facebook- https://www.facebook.com/meandmystoma
Email- MeandMyOstomy@yahoo.com
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Friday, January 31, 2014
SURGERY (END-LOOP ILEOSTOMY, HERNIA REPAIR, RESECTION RECTOPEXY), JP DRAIN, PICC LINE, TPN...
On October 2nd, I woke up from surgery in the absolute worst pain of my life! I was freezing, shaking uncontrollably, and felt like none of the pain meds were even making a dent in the pain that was taking over me! I woke up with a new stoma, sore bottom, and a Jackson-Pratt (JP) drain to remove the fluid in my abdomen. I was in the hospital for 12 long days, but fortunately I had very supportive family and friends by my side through everything! After not eating for more than a week, the drs had me try to sip at hot tea (to wake up the bowel), but I threw it up every single time. Let me tell you, throwing up after just having major abdominal surgery feels AWFUL!!! Eventually they put in a Peripherally Inserted Central Catheter (PICC line) and started me on total parenteral nutrition (TPN) which basically fed me through the PICC line and gave me all the nutrients I was lacking. With Halloween being one of my favorite times of the year, my family decorated my room and brought me a pumpkin to decorate while I was in the hospital. A few therapy dogs came to visit while I was there, but it was hard to enjoy their company when I was in so much pain. After 10 days of being stuck in my hospital room, my best friend came to visit me from college and took me outside! The fresh air felt amazing and motivated me to get out of there even more! A couple of days later, I discontinued using the pain pump, my JP drain was removed (another very painful process), I began eating a little and went home!!! I kept the PICC line in for the next 5 weeks and due to my extremely high liquid output (1200-1400 cc/day) I ended up putting IV fluid through the PICC line everyday. I actually made 2 review videos on my YouTube channel "Ostomy Product Review: Hollister 2-piece System" & "Ostomy Product Review: Coloplast 2-piece System (https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos) when I still had the PICC line in! It is extremely important to keep PICC lines clean and dry, since it provides direct access to your heart, but the only inconvenience was showering really. Removing the PICC line was a really weird, but completely painless procedure and only took a few minutes to do. I was recovering from surgery pretty well for a few weeks, until a few more issues were added to my plate! I will explain more in my next post! Feel free to contact me with ANY questions or comments! Thanks :)
CONTACT INFO:
YouTube Channel: https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos
Facebook- https://www.facebook.com/meandmystoma
Email- MeandMyOstomy@yahoo.com
CONTACT INFO:
YouTube Channel: https://www.youtube.com/channel/UCXLRnq6DSjydCHpiTM2ciMg/videos
Facebook- https://www.facebook.com/meandmystoma
Email- MeandMyOstomy@yahoo.com
STOMA PROLAPSE!!!
Hi again! I apologize for the delay in posts! My goal was to keep up with this blog, but I got a little sidetracked. Anyways....there has been A LOT going on in the past few months that I want to share, so I am going to start playing catch-up right now!
On August 8th, 2013 my day started out like any other "normal" day since surgery. I picked up a new hernia belt in the morning, had a smoothie on my way home and by night-time I noticed that my stoma looked like it was sticking out more than usual. Knowing what a prolapse looks like, from experiencing rectal prolapse a few months back, I broke down into tears fearing this was just the beginning of a very long road, yet again! To make matters worse, my 20th birthday was the next day and I was SO excited to start a new chapter of my life as a HEALTHY college student. Unfortunately the prolapse continued to rapidly worsen and I spent the whole night Aug. 8th and the whole day of Aug. 9th (my birthday) on bed rest, in excruciating pain! Any time I even switched positions or stood up to use the bathroom, my stoma would continue to prolapse! I was given Valium as an attempt to ease my stoma back in and calm me down, but unfortunately it didn't do much. The prolapse was getting so bad (8 inches), swollen, and painful that I ended up in the hospital later that night! After 4-5 failed attempts to push my stoma back inside in the ER, I was finally taken to the OR where the surgeon was able to get my stoma back in without causing me pain. I spent the next couple of days in the hospital and then returned home (after visiting with the therapy dog at the hospital- pic below). I was given instructions to follow-up with my colorectal surgeon to discuss further surgical options to fix the prolapse. Although the ER surgeon was able to get it back in, she said there is a very good change it will continue to prolapse. Unfortunatley, the colorectal surgeon who formed my ileostomy (@Mayo) did not know what else to do for me, so she referred me to a local colorectal surgeon. At the time, I was extremely upset and disappointed that she just left me with such an issue and had no solution, but the switch to a new surgeon ended up being a REALLY good decision! I will discuss that experience in my next post...
On August 8th, 2013 my day started out like any other "normal" day since surgery. I picked up a new hernia belt in the morning, had a smoothie on my way home and by night-time I noticed that my stoma looked like it was sticking out more than usual. Knowing what a prolapse looks like, from experiencing rectal prolapse a few months back, I broke down into tears fearing this was just the beginning of a very long road, yet again! To make matters worse, my 20th birthday was the next day and I was SO excited to start a new chapter of my life as a HEALTHY college student. Unfortunately the prolapse continued to rapidly worsen and I spent the whole night Aug. 8th and the whole day of Aug. 9th (my birthday) on bed rest, in excruciating pain! Any time I even switched positions or stood up to use the bathroom, my stoma would continue to prolapse! I was given Valium as an attempt to ease my stoma back in and calm me down, but unfortunately it didn't do much. The prolapse was getting so bad (8 inches), swollen, and painful that I ended up in the hospital later that night! After 4-5 failed attempts to push my stoma back inside in the ER, I was finally taken to the OR where the surgeon was able to get my stoma back in without causing me pain. I spent the next couple of days in the hospital and then returned home (after visiting with the therapy dog at the hospital- pic below). I was given instructions to follow-up with my colorectal surgeon to discuss further surgical options to fix the prolapse. Although the ER surgeon was able to get it back in, she said there is a very good change it will continue to prolapse. Unfortunatley, the colorectal surgeon who formed my ileostomy (@Mayo) did not know what else to do for me, so she referred me to a local colorectal surgeon. At the time, I was extremely upset and disappointed that she just left me with such an issue and had no solution, but the switch to a new surgeon ended up being a REALLY good decision! I will discuss that experience in my next post...
Wednesday, May 8, 2013
My Story
My name is Nicole and I was diagnosed with Ehlers-Danlos Syndrome in November 2012, at 19 years old.
Since the diagnosis, my life has changed tremendously in ways I could have never imagined.
Throughout my life I have struggled with many random health problems that seemed to have no explanation, but in November 2012, just before undergoing surgery for Endometriosis, I discovered that I had full-thickness rectal prolapse. To actually see and feel my the end of my large intestine (rectum) outside my body was a scary moment in itself, but when I could not get it back in, I began to panic. During surgery the next day, my gynecologist brought in a general surgeon to look into the cause and severity of the issue while under anesthesia. Upon waking up, the surgeon came in to say that I appeared to have a weak, lax pelvic floor. He said it looked more like that of a much older woman who has experienced childbirth, not that of a normal 19 year old. Seeing as my 16 year old sister was already diagnosed with EDS hypermobility type, both surgeons were highly suspicious that I too had EDS. Later in November I was diagnosed with EDS as well, but I seemed to display characteristics of both hypermobility type and classic. A few days later I saw a colorectal surgeon that confirmed the diagnosis of rectal prolapse and planned to operate in the upcoming weeks. On December 13,2012 I underwent surgery to repair the prolapse. My surgeon decided to do a hand-assisted anterior resection rectopexy, saying it would produce the best outcome for both prolapse and constipation. Recovery was rough and I stayed in the hospital for 7 days following surgery. Once I returned home, my pain level slowly decreased but constipation quickly became an issue again, only weeks after undergoing a surgery that should have helped the problem.
In January 2013, while already experiencing a great deal of abdominal pain and discomfort, I got into a car accident that totaled my car. Being only 4 weeks out of surgery, I was taken to the ER where tests revealed severe impaction, a fluid collection around my colon (near anastomosis site) and a pericardial effusion. Doctors decided not to drain either fluid collection immediately, but to wait and follow-up with my doctor later in the week. After a long follow-up cardiologist, I was admitted to the hospital to discover the cause of the pericardial effusion and decide whether or not it needed to be drained (pericardiocentesis). Doctors were not able to find a cause after 2 days in the hospital and since I was not experiencing any immediate symptoms, the effusion was not drained and I was sent home with instructions to follow-up periodically. As for my constipation issues, I began taking many different combinations of medications and vitamins such as Amitiza, Linzess, Colace, Dulcolax, Magnesium Citrate, Magnesium, Vitamin D, Fibrecon, Metamucil, Culturelle, etc. Ultimately, the combinations of these medicines (at different times and dosages) only increased my pain and constipation. I got to the point where warm water enemas became the only way I was able to have any kind of bowel movement.
In the beginning of February 2013, I went to the ER again with severe lower right abdominal pain. Tests revealed a large ovarian cyst and I was kept overnight on Morphine to control the pain. Later the next day my pain decreased enough to be sent home with a prescription for 10/325 mg of Norco. A few days later, while in the bathroom I was devastated when I noticed my rectal prolapse had returned. At a follow-up appointment with my colorectal surgeon, he agreed that the prolapse indeed appeared to be back, but it was only mucosal (partial) at the time, not full like it was pre-surgery. He said that the recurrence rate was very low for the surgery I had and EDS may have played a larger role than he initially thought. He also said there was nothing else he could do to help relieve my pain or any explanation for the rapid decline in pelvic function after surgery.
From February til now, my GI symptoms progressively worsened. I started pelvic floor physical therapy in late February which included two 45 minute sessions a week, but unfortunately it did not seem to improve anything. At the end of April I finally went up to Mayo Clinic in search of some answers and solutions to my problems. I had appointments with both GI and colorectal surgeon as well as an Anorectal Manometry test and MR Proctogram. Both Mayo doctors suspected Pelvic Floor Dysfunction from the beginning and the testing just confirmed their suspicion. They recommended that I come back to Mayo for their 2-week intensive biofeedback program with the hope that I would regain control of my pelvic muscles and essentially improve my symptoms.
This past year has been a difficult journey both physically and emotionally, but I slowly learned to cope and accept my situation along the way. In the beginning, I was extremely embarrassed and reserved and did not want ANYONE to know what I was going through. I kept thinking my problems would just go away one day and I would get to live like any other normal college student, but the past few months have tested my strength many times. Due to the daily pain, discomfort, and fatigue I experience, I have become very withdrawn from the things I once loved. I had a type A personality that kept me on-the-go 24/7 and although it took a lot of work and energy, I enjoyed working 2 jobs while going to school full time. I am slowly learning to adapt some type B traits along the way, but it is definitely a process.
I started this blog for a few reasons but my main goal is to reach out to others who may share similar experiences. Living with any illness is hard and a strong support system, especially one that understands your struggles, is really important! My journey is far from over and as I grow more comfortable discussing GI/bowel issues, I hope to connect with others. My greatest fear right now is the possibility of losing my colon and living with an ostomy. I don't know what God has in store for me, but I know that whatever happens has a reason. I know it may feel lonely at times, but we are in this together!
Since the diagnosis, my life has changed tremendously in ways I could have never imagined.
Throughout my life I have struggled with many random health problems that seemed to have no explanation, but in November 2012, just before undergoing surgery for Endometriosis, I discovered that I had full-thickness rectal prolapse. To actually see and feel my the end of my large intestine (rectum) outside my body was a scary moment in itself, but when I could not get it back in, I began to panic. During surgery the next day, my gynecologist brought in a general surgeon to look into the cause and severity of the issue while under anesthesia. Upon waking up, the surgeon came in to say that I appeared to have a weak, lax pelvic floor. He said it looked more like that of a much older woman who has experienced childbirth, not that of a normal 19 year old. Seeing as my 16 year old sister was already diagnosed with EDS hypermobility type, both surgeons were highly suspicious that I too had EDS. Later in November I was diagnosed with EDS as well, but I seemed to display characteristics of both hypermobility type and classic. A few days later I saw a colorectal surgeon that confirmed the diagnosis of rectal prolapse and planned to operate in the upcoming weeks. On December 13,2012 I underwent surgery to repair the prolapse. My surgeon decided to do a hand-assisted anterior resection rectopexy, saying it would produce the best outcome for both prolapse and constipation. Recovery was rough and I stayed in the hospital for 7 days following surgery. Once I returned home, my pain level slowly decreased but constipation quickly became an issue again, only weeks after undergoing a surgery that should have helped the problem.
In January 2013, while already experiencing a great deal of abdominal pain and discomfort, I got into a car accident that totaled my car. Being only 4 weeks out of surgery, I was taken to the ER where tests revealed severe impaction, a fluid collection around my colon (near anastomosis site) and a pericardial effusion. Doctors decided not to drain either fluid collection immediately, but to wait and follow-up with my doctor later in the week. After a long follow-up cardiologist, I was admitted to the hospital to discover the cause of the pericardial effusion and decide whether or not it needed to be drained (pericardiocentesis). Doctors were not able to find a cause after 2 days in the hospital and since I was not experiencing any immediate symptoms, the effusion was not drained and I was sent home with instructions to follow-up periodically. As for my constipation issues, I began taking many different combinations of medications and vitamins such as Amitiza, Linzess, Colace, Dulcolax, Magnesium Citrate, Magnesium, Vitamin D, Fibrecon, Metamucil, Culturelle, etc. Ultimately, the combinations of these medicines (at different times and dosages) only increased my pain and constipation. I got to the point where warm water enemas became the only way I was able to have any kind of bowel movement.
In the beginning of February 2013, I went to the ER again with severe lower right abdominal pain. Tests revealed a large ovarian cyst and I was kept overnight on Morphine to control the pain. Later the next day my pain decreased enough to be sent home with a prescription for 10/325 mg of Norco. A few days later, while in the bathroom I was devastated when I noticed my rectal prolapse had returned. At a follow-up appointment with my colorectal surgeon, he agreed that the prolapse indeed appeared to be back, but it was only mucosal (partial) at the time, not full like it was pre-surgery. He said that the recurrence rate was very low for the surgery I had and EDS may have played a larger role than he initially thought. He also said there was nothing else he could do to help relieve my pain or any explanation for the rapid decline in pelvic function after surgery.
From February til now, my GI symptoms progressively worsened. I started pelvic floor physical therapy in late February which included two 45 minute sessions a week, but unfortunately it did not seem to improve anything. At the end of April I finally went up to Mayo Clinic in search of some answers and solutions to my problems. I had appointments with both GI and colorectal surgeon as well as an Anorectal Manometry test and MR Proctogram. Both Mayo doctors suspected Pelvic Floor Dysfunction from the beginning and the testing just confirmed their suspicion. They recommended that I come back to Mayo for their 2-week intensive biofeedback program with the hope that I would regain control of my pelvic muscles and essentially improve my symptoms.
This past year has been a difficult journey both physically and emotionally, but I slowly learned to cope and accept my situation along the way. In the beginning, I was extremely embarrassed and reserved and did not want ANYONE to know what I was going through. I kept thinking my problems would just go away one day and I would get to live like any other normal college student, but the past few months have tested my strength many times. Due to the daily pain, discomfort, and fatigue I experience, I have become very withdrawn from the things I once loved. I had a type A personality that kept me on-the-go 24/7 and although it took a lot of work and energy, I enjoyed working 2 jobs while going to school full time. I am slowly learning to adapt some type B traits along the way, but it is definitely a process.
I started this blog for a few reasons but my main goal is to reach out to others who may share similar experiences. Living with any illness is hard and a strong support system, especially one that understands your struggles, is really important! My journey is far from over and as I grow more comfortable discussing GI/bowel issues, I hope to connect with others. My greatest fear right now is the possibility of losing my colon and living with an ostomy. I don't know what God has in store for me, but I know that whatever happens has a reason. I know it may feel lonely at times, but we are in this together!
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