My new gastro as well as my new surgeon ordered me to stop Remicade to allow time for the Remicade levels to decrease in my body before surgery. The reason for stopping it is because Remicade weakens my immune system and the doctors said it would slow down the healing process. I was supposed to have my next Remicade infusion on October 31, 2017. Even though I won't likely experience a literal withdraw from missing my regularly scheduled dose, I'm freaking out a little. They have taken away the one thing that helped me have pain free days, formed stool, control of my bottom end pipes, and regular bowel movements. Imagine my concern over the fact that I will not be getting my medicine and my stomach and bowel movements have not gotten back to how they were before my colonoscopy last week. The drug was designed to intentionally weaken my immune system because my immune system is fucked up when left alone. Without Remicade, I'm worried my immune system will fuck up the current state of my health before surgery.
No matter how poorly surgery goes or how many complications I experience due to surgery, I don't think I will regret the decision to have surgery. How could I allow myself to regret the only solution that was presented to me by multiple doctors? The choice I may regret would be the decision to stop Remicade at my new doctors' request. I could make one phone call tomorrow and go back to my old gastro. His nurse would give me Remicade in heartbeat. I would like to maintain my current health for four more weeks, which would just about get me to surgery day. I would also like my body not to build antibodies towards Remicade while I'm off the medication.
Remicade, it's not you, it's my doctors. You gave me better health than I experienced in over a decade. Apparently, we need some time apart though. Thank you for the amazing days you gave me! I really hope you'll wait for me until after surgery because I don't want to say goodbye forever. I just have to say goodbye right now.
Monday, October 30, 2017
Sunday, October 29, 2017
One Month Away
Bowel resection surgery is one month away from today! It's getting harder and harder to stop thinking about it. I am amazed by the support of everyone around me! They have every angle covered! One of my Team Challenge friends is going to give me some supplies so that I can test run the pouch and wafer before surgery in order to prepare for a possible ostomy. My supervisor, co-workers, and HR department have almost eliminated the stress I had about potentially missing up to eight weeks of work. I couldn't ask for a better team at work! My supervisor is extremely understanding and tells me that my health comes before work. My cube neighbor even sat me down to inquire how I was handling it. She let me know that the people around me at work care and she volunteered to carry the weight of my shit if it gets too heavy or if I need a break from acting like everything is okay(Please don't ruin my performance. It's as much for me as it is for you.). My best friend has my back every step of the way and will be taking off work to be with me in the hospital. My Running Divas are with me through this, too. I've only known most of these ladies for about a year and others less, yet they show their incredible support through genuine acts of friendship. They're encouraging and offer valuable insight. One pledged to take the money we are going to be reimbursing her for for making our running costumes and donate it to Crohn's disease research. They offer comedic relief! They have a caring scale that is off the charts. One has taken it upon herself to be my big sister. My Team Challenge friends from south Florida have already asked if they can visit me in the hospital, and I approved. My mom will be with me the whole time and my dad will be with me most of the time, too. Two of my sisters will be with me when I return home after surgery and one of my sisters will fly into town three weeks after my surgery. Other friends and family have voiced their support and let me know they are here for me as well!
How did I get lucky enough to have all of these people in my life? I am overwhelmed by everyone's support! I didn't expect it. Yes, I tend to underestimate relationships. I'm not sure I deserve these awesome people in my life because I'm not sure I'd be that great of a friend if I was in their shoes. I don't like being held accountable for others' expectations, so I try not to put expectations on others. To give my lack of expectation more perspective, I'll tell you what happened today when I expected something. I ran a two miler and five miler today. My mom, dad, and Kelly walked the two miler, but I ran with a Running Diva because I had to finish in time to start the five miler. The five miler started before they finished the two miler. My family rarely goes to my races let alone enters to race. As I was approaching the five mile finish line I searched the crowd for my family. They weren't there. They weren't there because they went back to sit in the car to wait for me when they were done rather than cheer me on. Perhaps it's my fault I was disappointed because I didn't ask them to cheer me on at the finish line. Little things like that are why I try not to have expectations and it's also why the amount of support I'm receiving feels a little strange to me...like I'm not entirely certain what to do with it. I am more grateful for it than I can put into words though!!! One day I'll get better at showing my appreciation. Saying "thank you" doesn't seem like enough!!
How did I get lucky enough to have all of these people in my life? I am overwhelmed by everyone's support! I didn't expect it. Yes, I tend to underestimate relationships. I'm not sure I deserve these awesome people in my life because I'm not sure I'd be that great of a friend if I was in their shoes. I don't like being held accountable for others' expectations, so I try not to put expectations on others. To give my lack of expectation more perspective, I'll tell you what happened today when I expected something. I ran a two miler and five miler today. My mom, dad, and Kelly walked the two miler, but I ran with a Running Diva because I had to finish in time to start the five miler. The five miler started before they finished the two miler. My family rarely goes to my races let alone enters to race. As I was approaching the five mile finish line I searched the crowd for my family. They weren't there. They weren't there because they went back to sit in the car to wait for me when they were done rather than cheer me on. Perhaps it's my fault I was disappointed because I didn't ask them to cheer me on at the finish line. Little things like that are why I try not to have expectations and it's also why the amount of support I'm receiving feels a little strange to me...like I'm not entirely certain what to do with it. I am more grateful for it than I can put into words though!!! One day I'll get better at showing my appreciation. Saying "thank you" doesn't seem like enough!!
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!
Thursday, October 19, 2017
Bowel Resection Surgery Scheduled at the Cleveland Clinic 11.29.2017
I found myself alone in the car with my mom for three and a half hours on Sunday. [The remaining part of this paragraph has been redacted.]
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
Upon climbing the stairs to the second floor of the Cleveland Clinic, we were greeted by the sign above that stood as tall as me. I checked in and we were called back on time. Before Dr. Second Opinion became my new current colorectal, I spoke with three nurses to give them my medical records and talk about my history with Crohn's disease. In the process, I learned that one of the nurses has Crohn's and another nurse's brother has Crohn's. Next, the Fellow, aka Follower, came in the room and reviewed my records and asked more detailed questions about my current symptoms and most recent procedures.
The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
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The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
- Prep for Colonoscopy - Monday, October 23, 2017 (awaiting prep instructions)
- Colonoscopy - Tuesday, October 24, 2017 at 12:30PM (I'm still traumatized from the last one)
- Chest X-ray - Tuesday, November 7, 2017 at 10:30AM
- Pre-op Clearance (ECG, lab work, and other testing) - Tuesday, November 14, 2017 at 8:15AM
- Pre- op Stoma Marking at the Cleveland Clinic - Tuesday, November 28, 2017 at 1PM
- Bowel Resection Surgery at the Cleveland Clinic Hospital - Wednesday, November 29, 2017
Tuesday, October 10, 2017
Playing the Field
Even though I am waiting to see what Dr. Second Opinion has to say, I am still taking steps forward to schedule surgery with my current colorectal. I am playing the field, the medical field. My current colorectal confirmed Wednesday, December 6, 2017 as my surgery date for bowel resection. Now, that date is only tentative on my end because I might cancel it depending on how my appointment goes with Dr. Second Opinion.
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
- 8/22/17 Barium enema and MR enterography reviewed with patient. The BE did not show evidence of a fistulous tract, but the MR enterography did show evidence of a potential fistulous connection. Given the persistent clinical symptoms of enterovesical fistula and the MR findings, surgical options were discussed. She will discuss the findings with her GI physician and will possibly proceed to a laparoscopic, possible open low anterior resection and repair of colovesical fistula. The risks of surgery including a need for an ostomy which might be permanent were discussed. In addition the concern is that as she has a known anal stricture as well as rectal stricture, that her rectum may be diseased enough that an anastomosis may not be feasible.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
- On Wednesday, November 29, 2017 at 1:00pm, I have a pre-op appointment with a urologist.
- On Thursday, November 30, 2017 at 9:45am, I have a pre-op appointment with my current colorectal, which may be followed by testing.
- I am awaiting a call to schedule my "tummy marking". I think it's where they tattoo dots on my belly to guide the doctor to the right spot...or maybe it's like a surgical version of connect the dots.
- On Wednesday, December 6, 2017, I have to arrive at 5am for surgery to start at 7:30am.
Sunday, October 8, 2017
My Upcoming Appointment at the Cleveland Clinic
Next Sunday, I'll be heading down to south Florida to stay the night before my appointment at the Cleveland Clinic on Monday, October 16th. Before I received an appointment reminder in the mail from the Cleveland Clinic, I was just going through the motions. This was just another appointment for me to waste time before actually having to pull the trigger and schedule surgery. Yes, I know I already did that tentatively. I wasn't expecting a different/valuable recommendation. I wasn't expecting to like the Cleveland Clinic better than my current colorectal (I'm sure you can read why in a previous post). However, the doctor listed on my appointment reminder is not the same doctor on the referral order my new gastro gave me. Go ahead, click on the links and be sure to read the first sentence under the About Steven Wexner, MD Section. I now have an appointment with the "Director of the Digestive Disease Center at Cleveland Clinic Florida and Chairman of the Department of Colorectal Surgery"!
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
E. Pluribus Unum
On Friday, I had the opportunity to attend the 2018 FIFA World Cup Qualifier - U.S. Men's National Team v Panama. My employer gave single tickets to select employees and somehow I made the list! I sat with six co-workers. It was an absolutely incredible experience! With all of the shit going on in our county, it was an inspiring event to witness! It gave me hope that we can still be one nation...at least we can be at a soccer match, which could be insignificant in the grand scheme of things.
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| Typically, I would only see something like this on T.V. |
To kick things off, both national anthems played and the crowd around me showed respect to both anthems.
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"This is an optimistic piece for trying times. A celebration of strength in diversity that is
the United States at its best. Both the patterns on the scarves and the players on the team come from
diverse backgrounds but work towards a common ideal. We can succeed if and only if we work
together towards the greater good. E. pluribus Unum! Join or Die! I believe that we will win!"
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USA won 4 to 0. Every goal brought an adrenaline rush and another round of beer! I imagine attending the Olympics would feel something like this! I have a lot of people to thank at work tomorrow for that ticket!
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