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:

• 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

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.

• 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.

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. 

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.

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. 

"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!"

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!

I Tentatively Set a Date

I finally received the results from the drug level and antibody test. My levels were great and no antibodies were detected, which was a huge relief!  Remicade has changed my life and I'm thrilled the results correlated with how well I've felt since I started taking it.

My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.

Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.

The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end.  As December 6th approaches, I'm sure it will get more difficult to accept.  It's already harder to accept today than it was yesterday, but that is likely because I set a date.

I Couldn't Answer It

I have a confession: I may have been a coward today.  Even though I have been expecting a call for 27 days from my colorectal specialist to schedule my bowel resection surgery , I did not have the courage to answer my phone when the scheduling lady called me. When I looked at the caller ID, my heart sank and my hands started to shake. I couldn't answer it.

Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery.  I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.

A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh.  If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.

I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it.   Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.

That Bitch, Irma

By the time I got back into town after Labor Day weekend and went to the store to see what I could get to prepare for that bitch, Irma, the selves where the non-perishables belonged were already empty. One of the few benefits of living with my parents is that they prepared well enough for the hurricane so that all I had to do was basically just show up at their house for shelter. I know it's not very adult of me, but my preparations only included:

• Helping board up my parents house
• Parking my car at my uncle's warehouse
• Packing my duffle in case shit got real
• Charging my phone and back up batteries
• Charging my electric toothbrush
• Putting batteries in flashlights
• Buying bread, green beans, and chips

I probably should have been more concerned than I was, but I did not allow everyone else's stress and worry get to me before the storm. We lost power around 8PM Sunday, September 10th, so we were without power and A/C early on. It didn't take long for the house to get fucking hot!  By 9PM, I was asleep on the tile floor in the kitchen with my pillow, sleep mask, and Beat headphones blaring music. The tile was the coolest spot inside and I couldn't hear the storm with my headphones on. I woke up briefly abound 5:30AM and moved to my bed for about two hours until the heat was too much to bare.  So yeah, I slept through hurricane Irma.

It was still very windy Monday morning, but I helped clean the yard and move debris to the road. Although the neighborhood lost a lot of trees, the houses didn't have any major damage. The lake was up to the fence in the backyard and all of the docks were under water. As soon as our county lifted the curfew at 6PM on Monday, I went to my uncle's warehouse to get my car. We had gotten a generator and everyone claimed a spot in front of the fan without any room for me, so I slept on a patio chair on the porch with the noise of our neighbor's generator on one side and the noise of our generator on the other. Again, I used my sleep mask, and beat headphones to get to REM. 

Tuesday morning I went over to my uncle's house to help him clean up his yard and the mess that was left behind after his sun room roof blew off.  I went into work at 2PM and left around 5PM. At home, we had more fans plugged into the generator on Tuesday night! It was still too fucking hot to get comfortable though and I found myself sleeping on the porch for the second night in a row with the annoying generators.

Irma taught me that I am higher to maintain than I realized.  I need air conditioning! Please, spare me the whole "it could have been worse speech". Plus, it's difficult to get ready in the dark with a flashlight and cold showers are not my cup of tea. I wasn't stressed before the storm, but I was certainly stressed and uncomfortable after the storm. My bowels were proof with irregular BM's and some stomach pain. Thankfully, running friends with power offered to let me stay with them!  I ended up staying two nights (Wednesday and Thursday) with Badass Doreen and her family. Her kindness is overwhelmingly amazing and I owe her big time! It was great getting to know her and her family better.

I went back home after work on Friday because our power came on. Things are slowing getting back to normal...whatever that is.