I have finally been cleared for ostomy reversal surgery at the Cleveland Clinic on Wednesday, February 28, 2018. The colonoscopy and biopsy results came back showing mildly active Crohn's disease in my rectum and throughout my colon.The active inflammation won't keep me from moving forward with surgery though. It sucks to be told Crohn's is active again. I haven't had a dose of Remicade since September 5, 2017. My gastro thinks it's best to wait to start back on Remicade two weeks to a month after surgery.
At my pre-op clearance appointment with my primary care doctor, I had lab work and a urinary analysis (UA) done. The UA came back showing a urinary tract infection (UTI). I'm skeptical that it was really an infection because I had zero symptoms. They prescribed Cipro, an antibiotic, and asked me to come back in to get another UA. The second UA also came back showing a UTI even though I had taken Cipro.They prescribed me a different antibiotic (Sulfamethoxazole-TMP). I can't bring myself to believe that the alleged UTI was really an infection as I had not experienced any symptoms. I considered not taking the second antibiotic at all. However, after I spoke with one of my nurse friends, I decided to only take the second antibiotic for three days instead of the prescribed five days.
Surgery is only three days away! I changed my ostomy appliance for the last time today. I'm still trying to wrap my head around it. In just a few days, Scarlett will be gone and I will be shitting out of my original asshole again! The world will soon have one less asshole in it. This makes me happy! I went into the first surgery expecting to have an ostomy for the rest of my life. Three months later, I find myself going into the second surgery to reverse the ostomy. It's mind boggling! Recovery will have its challenges, but I am ready to get through another surgery. I can't wait to put this behind me.
Surgery time is to be determined on February 28th. They expect surgery to take about two hours and they expect me to be in the hospital for two to four days.
Showing posts with label colonoscopy. Show all posts
Showing posts with label colonoscopy. Show all posts
Sunday, February 25, 2018
Tuesday, February 6, 2018
Birthday Weekend 2018
I don't know where to start. I felt special and loved this weekend even though it didn't go quite as planned. This past Friday, Taylor came to visit and she arrived at the house before I got home. Without getting into the gritty details, my mom said and did some things that were mean and not hospitable to Taylor. It upset Taylor to the point of tears. When Taylor told me she didn't want to stay at my place on Friday night, I didn't blame her. I was so mad in my car on my way home when I found out what happened that I wanted to cry! Taylor did not deserve to be treated that way. My chest still feels heavy from what happened on Friday. While it annoys me to be having these feelings, it is better than being numb at the moment.
I drafted a whole post on the bad part about it along with insight on my relationship with my mom, but I can't bring myself to share it in its entirety. I always try to keep my grievances to myself, so I'm going to share a little background on the drama that built these walls around me instead of sharing something that may cause a loss of dignity. Somewhere along the way enough proverbial stones were thrown at me for me to become numb to the pain. I don't care (at least that's what I tell myself) because it isn't worth the fight anymore. Don't get me wrong, I'm not innocent in this drama. At some point though, I realized the drama made me someone I didn't want to be and I closed myself off. I flipped an emotional switch. I stopped playing the game. I built these walls around me and I struggle to let anyone in because of it.
Taylor apologized for not being strong. I apologized for my mom. Taylor doesn't have the walls protecting her that I had. She isn't numb to the pain my mom's words can inflict and my mom's words cut her deeply. It devastated me to see the emotional pain my mom caused Taylor. Suddenly, I was no longer numb to my mom's bullshit. This time, my mom's words cut me. Taylor is stronger than she gives herself credit for. After we had time to talk about what had happened, she told me not to give up on my mom.
Big sister to the rescue! Lynn, didn't hesitate to welcome Taylor and I to stay the night at her place. I was a little terrified to be having my first sleep over since getting the ostomy. It helped that I could make myself at home and use the bathrooms whenever I needed to without feeling embarrassed. We snuggled on the couch and watched T.V. Taylor and I had tequila. It was my first time having alcohol since surgery and other than having a burning sensation around my stoma in the middle of the night, it was okay. A huge shout out to Lynn for taking us in!
Lynn had to leave early in the morning. She was awesome and let us sleep in. Taylor and I had a fun day on Saturday spending time together and catching up! We went to the Winter Park Farmer's Market where I bought Girl Scout cookies. We strolled around Park Avenue. Taylor had her wedding ring cleaned. We ate lunch at he Cheesecake Factory and our waitress recommended a nail salon close by for pedicures. Taylor treated me to a pedicure. They used a cheese grater to remove all of my dead skin. I don't think my feet have ever been this smooth before. After getting our nails done, we went to the Florida Mall to shop for some ostomy friendly shirts I could wear to work. By this time, my pouch was full and it was easy to tell if the shirts I tried on were loose enough to hide the shit in the bag under the shirt. I got two shirts courtesy of Taylor! Thank you for spending time and money on me, Taylor! I love my feet and I love my new shirts!
When we were done at the mall, we went back to my place. We kept to ourselves and didn't interact with anyone else at the house. The tension in the house was a little awkward. Soon enough Lynn arrived for movie and pizza night in my room. We ordered pizza and watched the first and second Miss Congeniality. I enjoyed our relaxing time together.
Sunday, Taylor and I relaxed as I prepped for my colonoscopy. I was on a clear liquid diet all day. Taylor walked with me while I went rollerblading. We took a three hour nap and we watched Wild Hogs on Netflix. We watched part of the Super Bowl with my family. My mom acted as if nothing had happened. It was stressful and weird. I did an enema before we went to bed around 8:30pm.
I woke up at 4:30am on my birthday to do another enema before Taylor took me to my colonoscopy appointment. I'll blog about that later. After my colonoscopy, we stopped at Wawa and Taylor took me back to my place. We made the most of our time together! I can't wait to celebrate my 30th birthday for real when I'm fully recovered from my next surgery.
Big sister to the rescue! Lynn, didn't hesitate to welcome Taylor and I to stay the night at her place. I was a little terrified to be having my first sleep over since getting the ostomy. It helped that I could make myself at home and use the bathrooms whenever I needed to without feeling embarrassed. We snuggled on the couch and watched T.V. Taylor and I had tequila. It was my first time having alcohol since surgery and other than having a burning sensation around my stoma in the middle of the night, it was okay. A huge shout out to Lynn for taking us in!
Lynn had to leave early in the morning. She was awesome and let us sleep in. Taylor and I had a fun day on Saturday spending time together and catching up! We went to the Winter Park Farmer's Market where I bought Girl Scout cookies. We strolled around Park Avenue. Taylor had her wedding ring cleaned. We ate lunch at he Cheesecake Factory and our waitress recommended a nail salon close by for pedicures. Taylor treated me to a pedicure. They used a cheese grater to remove all of my dead skin. I don't think my feet have ever been this smooth before. After getting our nails done, we went to the Florida Mall to shop for some ostomy friendly shirts I could wear to work. By this time, my pouch was full and it was easy to tell if the shirts I tried on were loose enough to hide the shit in the bag under the shirt. I got two shirts courtesy of Taylor! Thank you for spending time and money on me, Taylor! I love my feet and I love my new shirts!
When we were done at the mall, we went back to my place. We kept to ourselves and didn't interact with anyone else at the house. The tension in the house was a little awkward. Soon enough Lynn arrived for movie and pizza night in my room. We ordered pizza and watched the first and second Miss Congeniality. I enjoyed our relaxing time together.
Sunday, Taylor and I relaxed as I prepped for my colonoscopy. I was on a clear liquid diet all day. Taylor walked with me while I went rollerblading. We took a three hour nap and we watched Wild Hogs on Netflix. We watched part of the Super Bowl with my family. My mom acted as if nothing had happened. It was stressful and weird. I did an enema before we went to bed around 8:30pm.
I woke up at 4:30am on my birthday to do another enema before Taylor took me to my colonoscopy appointment. I'll blog about that later. After my colonoscopy, we stopped at Wawa and Taylor took me back to my place. We made the most of our time together! I can't wait to celebrate my 30th birthday for real when I'm fully recovered from my next surgery.
Sunday, January 28, 2018
Progress
On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
Wednesday, October 25, 2017
A Colonoscopy and a Fistula Sighting!
My colonoscopy was originally scheduled for Tuesday, October 24th. After being on a clear liquid diet and drinking a gallon of prescription laxatives (GoLytely) on the 23rd, my bowels were not cleaned out. I only pooped a handful of times. My doc had me go in to see if they could proceed with the colonoscopy. We couldn't do the colonoscopy, so we rescheduled for today, the 25th. They sent me home with a different laxative (Prepopkit) that I did yesterday, the 24th. The prep still didn't clean me out like it should have, but they decided to proceed with the colonoscopy today anyway.
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
Tuesday, July 11, 2017
Health Care Sucks
Gastro:
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
Sunday, July 2, 2017
Crohn's is Back!
I have not been looking forward to writing this post. I kept postponing it in the hopes symptoms would cease. Crohn's is back! There we go, I said it. While my doctors never said I was in remission, I was doing extremely well and it certainly felt like Crohn's was in remission. For the past few weeks, I've been experiencing blood and mucus in my stool along with going to the bathroom more frequently. Occasional pain, but thankfully the pain has been manageable. Fatigue is showing its ugly head. Tiredness is haunting me. Running is hard.
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
Monday, April 7, 2014
Everything You Never Wanted to Know About My Colonoscopies
Most healthy Americans don't have to get their first colonoscopy until after they turn fifty as a screening for colon cancer. I had two colonoscopies by the time I was twenty-five. Wah, wah no big deal. That's right, it's not a big deal to someone with healthy bowels. The procedure is pretty routine. I'm jealous of how easy it was for my dad and my friend Taylor. I also can't describe how strongly I desire to have their grossly normal results.
Before I get into my first colonoscopy, let me back up and explain how I came about getting there. By the way, I had my first colonoscopy back in 2003. I don't remember exactly how many months I had been experiencing weird and sometimes painful bowel movements before I finally told my parents that I needed to go to the doctor. I suffered in silence for far too long. I had lots of puss, blood and mucus in my bowel movements. Did I mention a lot of BLOOD? I was going to the bathroom at least 10 times a day with diarrhea. I didn't know what was happening to me. I tried to keep quiet about it, but soon my family started noticing that I was in the bathroom a lot. They never questioned it, they just made comments. I was afraid and embarrassed to tell anyone until one day when I gathered the courage and called my mom into the bathroom to look in the toilet. I remember the look of concern in her eyes. I had other symptoms, too. I saw my pediatrician, I saw my OBGYN (the issue was with my butt, so I'm not sure why the dr. had poking and biopsies done in my vagina. I still remember the size of the needle they stuck me with down under. I'm pretty sure I closed my legs on the doctor's head after that), eventually I was finally referred to a pediatric gastroenterologist. The diagnostic testing I underwent included: blood work, upper GI series, barium x-rays, sonogram and lastly the colonoscopy.
I had my first colonoscopy when I was fifteen. FIFTEEN! Damn, I was a strong kid. I wish I could go back in time and give myself a hug. I had to drink a gallon of prep. For those of you that don't know prep is the stuff you drink the day before the colonoscopy to clean you out so that the scope can clearly see your colon. They also make prep taste so bad that if the only source of hydration left on the planet tasted like prep, I would rather die of dehydration than gag it down. Obviously, I was down in the dumps by the time I had to take the prep, which probably makes it harder to endure. To give someone that already has the shits a gallon of prep to drink in order to give them worse shits seems like cruel and unusual punishment. I spent the night crying on toilet. By morning I was extremely dehydrated from everything that came out of me. My mom drove me to the hospital and I don't really remember anything there until I woke up in the recovery room. I was gassy from all the air they shot up me to keep the passage open for the scope to see. My stomach hurt, but I think the pain was from being so empty. The findings of the colonoscopy concluded the diagnosis of Crohn's disease. I had the same question most people have when they first hear about Crohn's. What the hell is that? That's a topic for another post entirely. My mom drove me home and I think I slept most of the day.
I don't remember telling any of my friends about what I was going through. My basketball teammates only knew that I was sick. I'm sure my mom told coach and some of the parents, but as far as telling people about this poop disease... I've come a long way since then. I'm all about creating awareness because I don't want some lost kid to be too afraid to speak up and get help sooner than I did.
My second colonoscopy is fresher in my mind because it was in 2012. By the time I got around to getting an appointment with my gastroenterologist I had very little control of my bowels. I was pooping myself on a regular basis. Experienced pain that's impossible to explain. I lost 17lbs in a couple weeks. It was my first big flare with Crohn's since being diagnosed. I was even further in the dumps than when I had to take my first prep. This time around I told my friends about it and most of them were supportive. I went through a different prep this time around. I took some kind of pills to prep the prep. I also drank a bottle of magnesium citrate two days before the colonoscopy. If you've never tried that glorious prep, you can pick up a bottle at any CVS or the like to try. Just take a sip to taste it. Then, I had to drink 8oz of the prescribed prep every 15 minutes until it was gone. I remember clear liquid coming from my ass by the time I was finished. I failed to mention that I fuss and whine like a baby about how I don't want to prep while I prep. It's miserable.
My mom drove me to get the colonoscopy. The first thing the nurse wanted me to do when she took me back was to pee in a cup to make sure I wasn't pregnant. The problem was that I was so dehydrated that I tried to pee for over an hour and half in that damn cup of hers and I couldn't even get a single drop of urine out of me. Finally, I signed a paper stating I wasn't pregnant. The thing about dehydration is that it makes it difficult to find my veins for the IV. I scolded that nurse for bruising my arm with the needle searching for a vein. When she finally hooked me up, I'm sure she couldn't wait to get me drugged. By this point I had been laying on the bed naked with a butt flap gown and blanket over me for what seemed like forever.
To me, it feels like a lot of time passes between when I get put under the anesthesia and when I wake up. When I woke up this time, I heard my mom talking with the doctor. The operative procedure report from my doctor confirms what I thought I heard:
"A stricture was found in the rectum." "We used a pediatric scope since I don't
believe a regular would pass." "...the stricture was ulcerative." "I did see an
orifice likely a fistula. Colitis was found in the descending colon. We reached
an area with significant ulceration and angulation. I could not go beyond this
level. It may be stricture but I don't know with certainty. The remaining bowel
was fairly normal with some old scarring."
I have colored photos that were taken with the scope of my colon to confirm everything in the report. I'd post them, but I'm sure that would freak you out if you didn't want to see it. It's scary to look at. You'd question how I get poop out through the inflammation and tight passage way. No wonder I was in such pain. I'm surprised that since they couldn't go all the way up due to the stricture that my doctor hasn't ordered another colonoscopy to get a better look beyond it now that I seem to be doing better. I think a colonoscopy would be cake if I could prep while I feel good. Maybe next time, I'll throw a prepping party where my friends can take shots of alcohol while I take shots of the delicious prep.
Before I get into my first colonoscopy, let me back up and explain how I came about getting there. By the way, I had my first colonoscopy back in 2003. I don't remember exactly how many months I had been experiencing weird and sometimes painful bowel movements before I finally told my parents that I needed to go to the doctor. I suffered in silence for far too long. I had lots of puss, blood and mucus in my bowel movements. Did I mention a lot of BLOOD? I was going to the bathroom at least 10 times a day with diarrhea. I didn't know what was happening to me. I tried to keep quiet about it, but soon my family started noticing that I was in the bathroom a lot. They never questioned it, they just made comments. I was afraid and embarrassed to tell anyone until one day when I gathered the courage and called my mom into the bathroom to look in the toilet. I remember the look of concern in her eyes. I had other symptoms, too. I saw my pediatrician, I saw my OBGYN (the issue was with my butt, so I'm not sure why the dr. had poking and biopsies done in my vagina. I still remember the size of the needle they stuck me with down under. I'm pretty sure I closed my legs on the doctor's head after that), eventually I was finally referred to a pediatric gastroenterologist. The diagnostic testing I underwent included: blood work, upper GI series, barium x-rays, sonogram and lastly the colonoscopy.
I had my first colonoscopy when I was fifteen. FIFTEEN! Damn, I was a strong kid. I wish I could go back in time and give myself a hug. I had to drink a gallon of prep. For those of you that don't know prep is the stuff you drink the day before the colonoscopy to clean you out so that the scope can clearly see your colon. They also make prep taste so bad that if the only source of hydration left on the planet tasted like prep, I would rather die of dehydration than gag it down. Obviously, I was down in the dumps by the time I had to take the prep, which probably makes it harder to endure. To give someone that already has the shits a gallon of prep to drink in order to give them worse shits seems like cruel and unusual punishment. I spent the night crying on toilet. By morning I was extremely dehydrated from everything that came out of me. My mom drove me to the hospital and I don't really remember anything there until I woke up in the recovery room. I was gassy from all the air they shot up me to keep the passage open for the scope to see. My stomach hurt, but I think the pain was from being so empty. The findings of the colonoscopy concluded the diagnosis of Crohn's disease. I had the same question most people have when they first hear about Crohn's. What the hell is that? That's a topic for another post entirely. My mom drove me home and I think I slept most of the day.
I don't remember telling any of my friends about what I was going through. My basketball teammates only knew that I was sick. I'm sure my mom told coach and some of the parents, but as far as telling people about this poop disease... I've come a long way since then. I'm all about creating awareness because I don't want some lost kid to be too afraid to speak up and get help sooner than I did.
My second colonoscopy is fresher in my mind because it was in 2012. By the time I got around to getting an appointment with my gastroenterologist I had very little control of my bowels. I was pooping myself on a regular basis. Experienced pain that's impossible to explain. I lost 17lbs in a couple weeks. It was my first big flare with Crohn's since being diagnosed. I was even further in the dumps than when I had to take my first prep. This time around I told my friends about it and most of them were supportive. I went through a different prep this time around. I took some kind of pills to prep the prep. I also drank a bottle of magnesium citrate two days before the colonoscopy. If you've never tried that glorious prep, you can pick up a bottle at any CVS or the like to try. Just take a sip to taste it. Then, I had to drink 8oz of the prescribed prep every 15 minutes until it was gone. I remember clear liquid coming from my ass by the time I was finished. I failed to mention that I fuss and whine like a baby about how I don't want to prep while I prep. It's miserable.
My mom drove me to get the colonoscopy. The first thing the nurse wanted me to do when she took me back was to pee in a cup to make sure I wasn't pregnant. The problem was that I was so dehydrated that I tried to pee for over an hour and half in that damn cup of hers and I couldn't even get a single drop of urine out of me. Finally, I signed a paper stating I wasn't pregnant. The thing about dehydration is that it makes it difficult to find my veins for the IV. I scolded that nurse for bruising my arm with the needle searching for a vein. When she finally hooked me up, I'm sure she couldn't wait to get me drugged. By this point I had been laying on the bed naked with a butt flap gown and blanket over me for what seemed like forever.
To me, it feels like a lot of time passes between when I get put under the anesthesia and when I wake up. When I woke up this time, I heard my mom talking with the doctor. The operative procedure report from my doctor confirms what I thought I heard:
"A stricture was found in the rectum." "We used a pediatric scope since I don't
believe a regular would pass." "...the stricture was ulcerative." "I did see an
orifice likely a fistula. Colitis was found in the descending colon. We reached
an area with significant ulceration and angulation. I could not go beyond this
level. It may be stricture but I don't know with certainty. The remaining bowel
was fairly normal with some old scarring."
I have colored photos that were taken with the scope of my colon to confirm everything in the report. I'd post them, but I'm sure that would freak you out if you didn't want to see it. It's scary to look at. You'd question how I get poop out through the inflammation and tight passage way. No wonder I was in such pain. I'm surprised that since they couldn't go all the way up due to the stricture that my doctor hasn't ordered another colonoscopy to get a better look beyond it now that I seem to be doing better. I think a colonoscopy would be cake if I could prep while I feel good. Maybe next time, I'll throw a prepping party where my friends can take shots of alcohol while I take shots of the delicious prep.
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