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.

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.

My Nightmare

"You can't wake up / This is not a dream" - Halsey

My colorectal specialist confirmed that I do indeed have a fistula. According to her, the MRI results showed a lot of inflammation around one of my strictures which made it difficult to pinpoint the exact location of the fistula, but it's around the area I've had a stricture in ever since I can remember. That area just so happens to be located near my bladder.

As she recommended surgery "soon" (within two months) she used a chart and pointed to the diseased, strictured part of my bowel that she wants to remove and replace with tissue from a healthy part of my bowel. She went on to explain that she would stitch up the fistula in the bladder and the stitches would dissolve. I asked, "So, you want to do a resection?"

My colorectal specialist looked me in the eyes, nodded her head, and replied, "Yes."

Before I schedule bowel resection surgery, I am getting a stool test and lab work that my gastro ordered as well as making a follow-up appointment with my gastro. The lab work is going to measure Remicade levels in my system to help us determine if the medicine is being effective. My colorectal specialist advised me to consult with my gastro about medication options. Am I going to stay on Remicade? Are there other medicines out there that could get Crohn's under control and heal the fistula without surgery?  I'll blog about this in another post. 

Now, back to my nightmare. Resection would put me in the hospital for 4-7 days. Recovery would be 4-6 weeks and it could take up to 6-8 weeks to return to "normal activities". My colorectal specialist said she wouldn't know until we are in the operating room whether or not I would require a permanent stoma.  This scares the shit out of me. This is more terrifying than going head first into that fucking MRI machine. If this happens, there will be no turning back. I was kind of expecting it, but that doesn't mean I'm not in denial about it. I've been ugly crying intermittently. Even though my ass is fucked up, I do not want to have to poop in a bag for the rest of my life. I'm not even thirty years old yet.

My Fear of Failing Has Disappeared

When I first registered for College and began taking my first classes in the spring of 2009, I had a huge fear of failing. I thought: What if I'm not smart enough? What if I don't pass? What if I don't do well? Looking back it was an irrational fear to have and I'm glad it didn't stop me from trying. Throughout my college education I've consistently been at the top of my classes. Early on I had a very wise professor explain that the only way you can fail college is to quit and stop trying.  Somewhere along the way my fear of failing turned into a fear of getting less than an A on an assignment or in the course overall. Suddenly, I not only did not want to fail, but I also didn't want to get anything less than the very best possible grades. I put wicked pressure on myself to work hard and be the best.

I try to be a role model for the people in my life. Recently I've noticed that other people in my life have their own fears. With my graduation from UCF imminent, I've been reflecting on how much I've grown during my college education. I don't know that I am smarter. However, I certainly know that I am better prepared to take on the world. My fear of failure has been replaced with a fear of not trying. Now, I think: What if I don't try? What if  I don't seek new opportunities? If I don't try and if I don't seek new opportunities, I'm afraid my college education will go to waste.

I'll be graduating with more confidence than when I started. I'll be graduating with a sense of hunger to seek opportunities. Fear will not hold me back because I no longer have a fear of failing. I know I will not quit and I will not stop trying. If I can make it through this whole higher education circuit, then I feel anyone can. I don't have a super brain. I just work hard.

Parasailing

I went parasailing with my sister, Kim, today!  I don't know what I expected, but it definitely beat my expectations. It seriously felt like we were flying! We flew higher than the birds. I live for little adventures like this. Kim and I even faced our irrational fears of the ocean and let the captain of the boat dip our feet in the water as we made our decent back to the boat.

 

 

I'm so happy we got to tandem because it gave us more time in the air and I think we had more fun enjoying the experience in the air together than we would have had separately.

 

If you ever have the opportunity to parasail, go! You'll feel liberated and you won't regret it! I'll totally go again.  



A Girl's Worst Nightmare

          Over the weekend, a girl’s worst nightmare happened to me. In the shower Sunday night, I felt flakey skin on my scalp while I was washing my hair. When I got out of the shower, I pulled on the flakey part of my scalp off and to my surprise a HUGE clump of hair came with it. It didn’t hurt and it didn’t itch. In an instant I had bald spot the size of my fist on the left side of my head. I’ve been through a lot health wise, so I didn’t freak out. I just went to bed because I had a big interview the next day and I wanted my rest.

          Monday morning, I took a look at my scalp in the mirror. I’ve already got my share of gray hair. What I found was a scary sized bald spot to go with it. I’m 26 years old.  In my grandma’s words, “You’re too young to have bald spots.” I went to the doctor today and he said the condition is known as Alopecia Areata. It’s a hair loss condition characterized by the rapid onset of hair loss in a sharply defined area. The cause is uncertain, but it’s an autoimmune condition where the immune system attacks the hair follicles. I don’t have any answers right now. I have to make an appointment with a dermatologist to get treatment. The dermatologist will likely take a biopsy of my scalp to confirm the condition. Treatment will likely require steroid injections in the affected area of my scalp (OUCH) to help promote growth. What I’ve read so far is that treatment outcomes are unpredictable as far as growth is concerned.

          Right now, I’m kind of in shock. I’m not in love with my hair, but I sure don’t want to go bald. I’ll be looking into buying a wig so that I won’t have to worry about covering the bald spot with what hair I have left. I’m emotional, I’m freaked out and I’m annoyed with my body. I’ll blog more about it once I get in to see a dermatologist.