Recovery in the Hotel

After I was discharged from the hospital, my parents took me to our hotel nearby. The ten minute car ride to the hotel was uncomfortable. Every turn, bump, acceleration and stop was a little painful. I wore a nightgown with sneakers and I had a travel catheter strapped to my leg.  They dropped me off at the side entrance of the hotel. The walk to the elevator and then to our room felt like the longest walk of my life. The nurse did not strap the catheter properly on my leg. Both catheter straps fell off my leg while I was walking. My mom helped me get to the room. I was exhausted when we finally made it to the room. I had been awake all morning waiting to be discharged and I desperately wanted a nap.  My mom switched the travel catheter with one that did not strap to me. Since the catheter had to stay lower than my bladder, we hooked it to a suitcase with wheels. Whenever I got up, my mom rolled the suitcase behind me. My bladder was leashed to the suitcase!  It made it difficult to move around, so I didn't walk near as much as I should have walked.

I was almost fully dependent on my mom and dad while we were in the hotel (Thursday-Tuesday). My dad left to go back home on Saturday (12.09.17). I wasn't strong enough to get up without assistance. The suitcase holding the catheter was too heavy for me to pull. I didn't have enough hands to empty my ostomy pouch into a measuring cup to track my output before dumping it down the toilet. We had to measure it for my follow-up appointments. I couldn't bend over to empty my catheter nor could I bend over to put on socks and shoes. I could empty the JP on my own, but I couldn't hold it and shower at the same time.  My parents didn't make me leave the hotel, which I appreciated. They went out and brought me back food for each meal. They stepped up to take care of me and I'm thankful for that...even if I am a little worried how my mom will try to hold her good deeds over my head in the future. Throughout my hospital stay and hotel stay, I consistently thanked my mom and dad for everything they were doing for me. No matter how frustrated I got with the nurses, hospital, fevers, my delayed discharge, and comments my mom made, I didn't snap at my mom (or anyone except for the nurse that day in the hospital they wouldn't let me eat or drink when I demanded the nurse to bring me some fucking water). I didn't complain to my mom about any of it. Instead, I slept off my frustrations and I know that even annoyed her at times. I did the best I could and I think she did as well!

The hospital beds were adjustable and I didn't lay flat while in the hospital. The flat hotel beds were hard to get comfortable in. I could only lay on my back because it hurt to lay on my sides. I slept my life away as much as I could with my loud roommates (my parents), the construction in the next room, and the maids. The days kind of all blur together. While I was glad to be out of the hospital, it didn't seem like I made much progress while I was in the hotel. Pretty much all I did was sleep, eat, go to the bathroom, and talk on the phone. Almost every time big sister Lynn called, the maids were vacuuming (lol). I managed to avoid visitors at the hotel. I just didn't have the energy for it. I slept a lot, but I never felt rested.

Around 5am on Sunday morning (12.10.17) the urge to urinate woke me up. I woke my mom up and she helped me out of bed. She wheeled my catheter behind me on the suitcase to the bathroom.  I sat on the toilet and peed into the toilet!!! Apparently, I peed around the balloon inside my bladder that was keeping the catheter in place. I freaked out! I messaged my nurse friends to get their input and I called the Cleveland Clinic. At the advice of Cleveland Clinic, I found myself in the ER. My mom was on top of her care giving game because she helped me get ready and get to the ER in a hurry. I was in the ER for two hours. All they did was flush the catheter line. Basically, they injected saline or something into my catheter tube to fill my bladder, which felt absolutely terrible. It really made feel like I had to pee. Somehow the catheter bag started collecting urine again and the feeling to urinate faded, so I guess it worked. The ER nurse gave me additional syringes to flush the line on my own, if needed, and discharged me.  Not even 30 minutes after we got back to the hotel, I had the urge to pee again. I peed in the toilet again. I was determined not to go back to the ER. Flushing the line didn't seem to work, so I wasn't going to use the syringes the ER nurse gave me. I peed around the balloon inside my bladder that kept the catheter in place throughout the day on Sunday. It wasn't pleasant. I told myself that I only had to make it one more day with the catheter, so I suffered through it.

On Monday (12.11.17), I had a follow-up appointment for a CT Cystogram. I was excited when the results came back okay because that meant they could remove the catheter. I knew having the catheter was difficult to tolerate; however, it wasn't until it was removed that realized just how awful it was. The nurse told me that I had 6 hours to pee. Little did she know that I was peeing in the toilet throughout the day the day before.  I peed soon after getting back to the hotel. It was a lot easier to move around without the damn catheter. I was no longer leashed to the suitcase! On Monday night, I changed my ostomy for the first time by myself. It actually went well!

Tuesday (12.12.17) was my last round of follow-up appointments before I could finally go home. I had the JP drain removed. Perhaps the most pain I experienced during this whole adventure was when the nurse cut one of the stitches holding the JP to my skin. It felt like she sliced my skin. I saw stars! The nurse pulled...and pulled...and pulled the tubing out of my body. The tubing inside me was over a foot long! As the nurse put a bandage over the opening she explained that it's normal to be able to see down into the hole in my body where the drain was until it starts to heal. I was instructed not to put anything into the hole (lol). After the I left the JP nurse, I went to see my ostomy nurses. They examined the pouch I changed myself and said I did a great job. Before I knew, one of the nurses had removed my ostomy (she made it look so much easier than when I did it the night before) and the nurse confirmed that my stoma and surrounding skin looked healthy. The ostomy nurses talked, but I zoned out. I don't know what they said. At this point I was ready to go home. They put a new ostomy pouch on me, asked if I had any questions, and then sent me on my way. After two weeks away, I was finally going home!

My mom drove me home. The three and half hour car ride home didn't pass fast enough. I went straight to my bedroom to put down some stuff and take off my shoes. I had a hat on and must have been looking down because I didn't notice the welcome home decorations, cards, and gifts until I went back into my room after going to the bathroom. A huge shout out to everyone that's supported me through this, thank you! Your phone calls, text messages, sweet cards, well wishes and prayers, gifts, flowers, and donations were more than I could have ever asked for. You guys are all amazing!!! You definitely helped make it easier for me to get through this.

Here's the link to the GoFundMe page my best friend set up: https://www.gofundme.com/laurenfightsback My surgery and hospital stay has been billed at over $100,000! I'm still waiting for that amount to be adjusted for my insurance plan discounts and amounts paid by my plan, but the thought of receiving these bills in the mail is intimidating. Any help would mean the world to me!

I hope my family and friends can count on me, too: https://youtu.be/Yc6T9iY9SOU

My Unscarred Belly's Reflection

I find myself lifting up my shirt more frequently when I'm standing in front of the bathroom mirror to look at my unscarred belly's reflection. When I get dressed and undressed, I glance down and stare at my bare stomach. How can it appear deceivingly healthy on the outside when it is a  disastrous mess on the inside? Suddenly, I have this weird fascination with constantly stealing glimpses of my gut.

I took this when I woke up from my nap yesterday.

 It likely won't look like this for much longer. 

When I'm in bed, I place my hands on my abdomen to feel my belly. It's smooth and it doesn't hurt to touch. I don't feel foreign material, scar tissue, or tenderness. Sometime last week, I started looking at my belly whenever I wake up... envisioning and preparing for the worst case scenario when I first wake up from surgery. My eyes flutter open and then close. As I take a breath I slide the blanket off and lift my shirt to reveal my stomach. I tilt my head down and as I let the breath out I open my eyes. I cry every time I open my eyes. I imagine a lengthy incision held together with ugly staples. I picture a shit bag attached to a new asshole. I hear the sobs of my mom and Taylor only to realize the sound is coming from me, not them.

Despite the fun and distractions I have thanks to my friends, it's getting more difficult to stop thinking about the surgery, the outcome, and the recovery that awaits me. I look at the photo above and I think that's not me, that's not the me I'm going to be in a couple of weeks at least. And so it goes, another day passes, another tear falls.

My Ass Cannot Catch a Break

Last week, I had a chest x-ray scheduled on Tuesday. When the nurse checked my vitals, she informed me that my doc was going to be sending me to an imaging center to get my chest x-rayed so that a radiologist could view the images and conclude the findings. We decided to do the other pre-op clearance stuff instead. I had eaten prior to my appointment that morning, so we couldn't do the required pre-op lab work. At least we were able to do the EKG. For the EKG, my pants stayed on! It was a nice change from most appointments.  My doc couldn't retrieve the EKG results while I was there because their system was down. According to my doc, my blood pressure is equivalent to blood pressure of fourteen year olds (amazing!). He also raved about how happy he is to see me weigh in at 160lbs!  160lbs feels awesome to me, too! Of the many things I'm worried about post-surgery, weight loss is one of them. Right now, I feel strong physically as well as mentally. In the past, losing weight had a way of fucking up that strength for me.

On Wednesday, I met my friend, Brittany, for breakfast in Clermont prior to my cystoscopy appointment with my urologist. I stand corrected, Clermont is neither podunk, nor bumfuck (lol that correction is for you, Britt). It was great to catch up with her at breakfast and be distracted from my forthcoming doctor appointment.  We arrived at my appointment at 9:30am so that I could get a shot of antibiotics an hour before the procedure at 10:30am. Britt waited in the waiting room while I went in the back.  As my nurse mixed the antibiotics in a syringe with some kind of numbing agent, I let her know that my friend would be coming back with me for the procedure. My nurse seemed concerned and wanted me to make sure my friend knew that I would be exposed (umm, how else are you going to stick a scope up my urethra?) Once she was done shaking the syringe, I rolled up my shirt sleeve. To my surprise, she said, "I have to give this to you in your buttock". So, I dropped my pants and underwear. Apparently, it's painful and the butt check offers the biggest muscle to inject it into. I smiled and laughed to myself as I walked back out to the waiting room to join Brittany. I let her know what happened. My ass cannot catch a break!

Before I got into position, the nurse said it won't hurt and would only take two minutes. Soon enough, I found myself sitting on the exam table with my feet in the stirrups and nothing but a modesty paper covering me below the waist.  The nurse rubbed me with something to numb the subject area. I can only describe what I felt next as a shot in my pee hole! WHAT THE FUCK! I do not know what caused that pain (was it a needle to numb me further or something else like a clamp to hold my urethra in position?). I didn't ask either. Just thinking about it again makes me short of breath. Brittany let me hold her hand and I know her presence helped me endure the craziness of a cystoscopy. The nurse told me not to get off the table while she went to get the doctor (haha). Once the doctor put the scope in me, we were able to see my bladder on the screen. They pumped sterile water into my bladder. There was notable abnormal inflammation and lines he said indicate that I strain to urinate (I don't think I do).  We did not find the fistula. The scope was super uncomfortable and he let it drop out when they stopped pumping the water, so then he re-inserted it back in which seemed awkward. Normally, I don't seek company at my appointments, but this is one I am fortunate Brittany was there to help me through it! Thank you, Britt!!!

This week I will finish all of my pre-op testing on Tuesday by getting lab work, a chest x-ray and a cystogram. Hopefully, a cystogram will be nothing compared to a cystoscopy. After that, the only appointments left before surgery are my call with a Cleveland Clinic pre-op nurse on November 22nd and my stoma marking appointment at the Cleveland Clinic on November 28th.

A Seemingly Qualified Urologist

I had my new patient appointment with a urologist today. When the nice nurse lady asked why I was there, I explained I was there to schedule pre-op tests ordered by my colorectal surgeon. The doctor didn't try to offer a different course of treatment, he accepted the pre-determined course and asked if he could call my surgeon to verify exactly what images/results we are looking to take away from the tests. My urologist used his cell phone to call my surgeon on the spot. After he left a message for my surgeon, he explained that he prefers calling to get answers rather than e-mailing or writing letters. I went into the appointment thinking I was going to some podunk urologist in Clermont, but at this point I was seriously impressed and thrilled to have found a seemingly qualified urologist.

We discussed the two tests (cystoscopy and cystogram) I was there to schedule. Both tests put me at risk of getting blood infections due to the colovesical fistula. He mentioned that he and every urologist in the country would not perform the tests without putting me on antibiotics to reduce the risk of infection. I voiced my uncertainty about being allowed to take antibiotics this close to surgery. I countered that if the risks are pretty high, should we even consider moving forward with the tests. Blood infections are nothing to take lightly. Once my uncle got a blood infection, it ruined his chances at surviving what ailed him before getting the infection (he died). My doc assertively recalled that I work in risk management, and said the risk should be analyzed.  Without antibiotics, the risk of getting a blood infection is about 40%; whereas with antibiotics, the risk is only about 5%.  When my surgeon calls him back, he will confirm that it's okay for me to be on antibiotics. I also called the Cleveland Clinic and they confirmed that I can take the antibiotics my urologist prescribes.

• My cystoscopy is scheduled for Wednesday, November 8th. I have to arrive at 9:30am to receive a shot of antibiotics and the procedure will start at 10:30am.
  
• I have to call SimonMed or an Orlando Health radiology facility to schedule my cystogram. I've already picked up antibiotics from the pharmacy and will take them the day before, the day of, and the day after my procedure.

Before I left, my urologist asked me how I found his practice. I told him that I called numerous urology groups and his offered the soonest new patient appointment.  Perhaps he was disappointed I didn't select him for his reputation or qualifications.

The best part about the whole appointment was that I only had to drop my pants to pee in a cup!  It made me wonder why gastros and colorectals don't collect stool samples at every visit.

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!

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. 

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.

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.

Questions for Doc and Taylor Eating Salad

I'm supposed to write a list of questions to ask my colorectal specialist on Tuesday. I looked up to find when my previous MRI was. It was November 13, 2015. I looked up an old blog post where I stated the November 13th MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Since I do not remember the conclusion of the "possible fistula" and whether or not we did anything about it, I'm going ask my colorectal specialist if she can pull up those results or look in my file to see what we did to address it.  I have numerous questions based on what the gastro nurse told me. Basically, I want to know what exactly is wrong with me and what options I have to fix it?

Questions regarding current MRI results:

• What are the results of my MRI?
• What do the results mean?
• 
  
• If she gives me the same results as my gastro nurse, who determined that the MRI showed significant inflammatory changes? SimonMed, Gastro, Colorectal?
• Inflammatory changes compared to what? What did the inflammation change from?
• Where did the MRI show inflammation?
• What does "probable fistula to the bladder" mean?
• Can you provide a probability rate?
• 
  
• If she concludes there is indeed a fistula to the bladder, how do we fix it?
• Medication, surgery, or a combination of both?
• Are additional tests required?
• 
  
• If surgery is recommended, can I postpone until the beginning of the year?
• What does surgery entail? 
• How long is recovery?
• What's the probability that surgery will work?
• What's the probability of getting additional fistulas?
• If we manage with medications, how does that interact with Remicade?
• 
  
• What are the risks of having a fistula to the bladder?
• If we can postpone surgery, what's the plan to monitor urinary tract infections?

Questions regarding previous MRI results:

• I had an MRI back on November 13, 2015, and I found personal notes that the results showed a possible fistula.
• Can you look up those results?
• Do you know what we did to address it?
• Was it possibly showing the same fistula that's probable now?

Taylor face timed me while I was writing this post. lol

"Probable Fistula to the Bladder"

A week ago, I had the MRI for "additional views". I fasted all day and drank three more cups of barium. It took them five tries to get an IV hooked up. Ouch! The last of the bruises are still healing. Thankfully, they put me in FEET FIRST on my belly, so my head stayed out of the machine! I was in the machine for about the same amount of time as my MRI earlier that week. They didn't charge me for it though. I got two MRIs for the price of one!

The nurse from my gastro's office called me Tuesday morning to let me know my MRI "showed significant inflammatory changes and probable fistula to the bladder." She didn't go into detail and just confirmed that I had a follow-up appointment with my colorectal specialist to discuss the results. I shared the "results" with some friends and a few asked me what it means. Honestly, I have no idea. Your guess is as good as mine. "Inflammatory changes" compared to what? Did SimonMed send these "results" or did my gastro determine this himself?  If a fistula to the bladder is "probable", I want to know the exact probability. The symptoms lead me to believe the probability is 100% because how else would stool get into my urine.  I spent all that money and endured those tests for them to diagnose me with the same thing I had diagnosed myself with a month and a half ago. The field of medicine blows my mind.

On Tuesday, August 22nd, I have an appointment with my colorectal specialist to discuss the results of the MRI(s). My running friend, Doreen, is going to go with me. I'm really happy she agreed to go with me when I asked her. Doreen is the absolute nicest person I've ever met! She's badass and super smart! I'm hoping with her help, we will ask my doctor the right questions to better enable me to make an educated decision on how I want to move forward.

Side note: Lisa (MRI Tech), Michelle (nurse), Juan (nurse).

Barium Enema and MR Entorography, Oh My!

July 31, 2017 - Barium Enema:
Surprisingly, the prep (clear liquid diet the day before along with two bottles of magnesium citrate and two dulcolax pills) didn't put me in the bathroom that much. In fact, I had some formed stool in the morning before my appointment.  It still make my stomach hurt though.

They took an initial x-ray to make sure my bowels were clean enough for my procedure. I had a lot of stool in my bowels, so the tech had to get the PA. Thankfully, the PA also has Crohn's disease and didn't want to make me reschedule and reprep unless it was absolutely necessary. He talked with me to determine why I was there and what we're looking for. He consulted with his supervisor, the practicing physician, and they decided to remix the barium into a thinner consistency to give it a better chance of finding any abnormal pathways.

Typically the tech would insert the enema tip, but because I have a stricture and considered to be a "special" case, the MD wanted to do it (she was in dress clothes, not scrubs, so I don't think she usually has to do barium enemas). Since my bowels weren't empty, they didn't use air like they usually would.

The barium enema was very uncomfortable and it felt like I was going to shit all over them. The barium leaked a little, but the PA assured me that it was nothing to be embarrassed about. They have 90 year old men that shit the table all the time.  The whole thing was a traumatizing and felt somewhat like an out-of-body experience.

 After the MD signed off on the images and said I was done, the PA (the one with Crohn's) came into the room and let me know he isn't supposed to say anything, but he wanted me to know they didn't see any abnormal pathways. Seriously, I've never felt as well cared for as the team at SimonMed made me feel. While this seems like good news, it does not provide answers to my symptoms.

July 31, 2017 - Gastro Office Appointment:
I got the official results of the barium enema, which did not show any abnormal pathways. How the heck are feces getting into my urinary tract??  The Doc gave me a list of shit I have to get done. More on that later.

August 7, 2007 - MR Entorography (MRI of Small Bowel)
Since the Barium Enema only looks at the large intestine, my gastro ordered an MRI to look at the small intestine to see if maybe that's where the issue is coming from. I had this done a few years ago; however, it was a lot different this time around. I had to drink three 16oz. of barium (1 of 15 minutes) before the exam. The barium was new and improved from last time. It tasted better and was easier to get down than I remember, but it still made me nauseous.

Once the nurse (Juan) called me back to get my IV hooked up as I finished my last glass of barium, he complimented me on finishing the barium and mentioned that most patients can't drink them all. Hell, I didn't want to drink them all, I thought I had to. Had I known I could cheat on drinking all the barium, that would have been tempting.

The last time I had this done, they made me lay on my back on put me in the MRI machine feet first so that my head didn't go in the machine.  This time around, they made me lay on my stomach (the radiologist explained that we want the bowels to move as little as possible and it helps to lay on them to minimize movement) and put me in *GASP* HEAD FIRST!!!! It was fucking terrifying!!!

I put in earplugs. They put some kind of temporary gastro paralysis in my IV that lasts for 30-45 minutes to slow the bowels. There was a huge strap the size of my back that hooked on each side of the table to secure me in tightly. The radiologist put the emergency ball in my hand (to squeeze if I need help or freak out) and started moving the table... which made me go head first into the fucking MRI machine. I can't remember the last time I was that afraid. At first I kept my eyes closed. My chest was tight, it was hard to breathe, and I felt like I was gasping for air. I was tempted to squeeze emergency ball, but somehow I found the strength not to. In that moment, I told myself that I wanted the chance to get answers more than I wanted safety (outside the MRI machine in an open room).

Tears slipped onto my check when I decided to open my eyes. I was somewhat relieved to find that the back of the MRI machine has a hole in it, so I could see the wall and a light in the distance. Still freaky, but better than it would have been had it been completely enclosed. It took about 45 minutes to go through a series of breath holds. Holding your breath as they take images also minimized movement. Afterward, the radiologist complimented me on how well I followed instructions and that made her job easy.

Before I left SimonMed, I went to the bathroom. I had very obvious symptoms of fecal matter in my urine and I passed gas out of my urethra. I'm hopeful the barium passed through whatever pathway it needed to in order to show up on the images.

I got a call today (08.09.17) from SimonMed asking me to come back in for "additional views". I'm going back on Friday the 11th. They couldn't tell me specifics because they are not allowed to allude to any diagnosis, but the lady did say they want to image lower into the pelvic region. Since it sounds like they didn't take images of that region before, the reason for additional views cannot be because of poor images from the first appointment. Perhaps they saw something and want narrow in on it...but that still doesn't make sense if they didn't take images of that region before. My mind is racing wondering if they found something, anything that might help explain my symptoms.

The bad news is that I have to conquer that damn MRI machine again. What's worse, a barium enema or a MRI where you go in head first? I don't know if I can answer that as they both seem like the same level of hell to me.

Rescheduled Barium Enema

SimonMed called me this morning to reschedule my barium enema appointment because their imaging machine was not working. Thankfully, they called before I started taking laxatives for the prep. They wanted to reschedule for the end of this week, but with work, the charity event, and Taylor coming into town, I rescheduled it for Monday, July 31st instead.

A huge sense of relief came over me after I rescheduled my appointment. I could breathe a little deeper...until anxiety hit me again. My nerves are on edge. I have that weighted feeling in my chest and gut that won't go away. I think it's fear. I'm afraid my self diagnosis is correct. I'm terrified the solution is going to require surgery. I'm worried surgery/recovery is going to interfere with my running schedule. I just can't shake the feeling that I'm going to have to say goodbye to the good(ish) days far sooner than I had hoped. I am mentally preparing for the worst and it's freaking me out.

I've started rationalizing the idea that I could postpone surgery, if surgery is required, until January after all of my races. This would also give more time to reach my out of pocket max and I get five more sick PTO days at work at the beginning of the year. So far, my doctors don't seem to be in any hurry to figure this shit out. If they can take their sweet time in figuring out what's going on, it must not be that serious. By the time I get "answers", it's going to be mid August. I know it's naïve to think I am actually going to get answers. With chronic illness, most of the time I think the doctors are guessing just as much as I am. 

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...

An Exciting Crack-Patch Adventure

I woke up Tuesday morning pumped and ready to do my fleet enema to finish prepping for surgery. Once I was done washing my disastrous crack, I flexed my muscles in the mirror to remind myself to be strong before I got dressed in some comfortable clothes, and then my mom drove me to the surgery center. Upon arriving I didn't even hesitate to jump out of the car and make my way toward this exciting crack-patch adventure. It took thirty minutes to fill out paperwork, sign my life away, and charge such a ridiculous amount for the procedure on my shiny credit card that it brought a tear to my eye.  They let my mom come back with me where we were placed in a curtained off room and I was immediately told to strip. Normally, I would at least expect a conversation first or to be wined and dined, but since I was fasting for the procedure I can understand why they rushed right into getting me naked.  They can't get enough of me... they keep scheduling me for more appointments so that I can take off my clothes.

While I could hear my doctor/surgeon making her rounds with other patients a nurse came in and asked if I wanted to do a urine sample or sign a paper stating I'm not pregnant. By some miracle I actually had to pee, so I climbed out of the hospital bed in my butt-flap gown and "poop" socks with turd emojis all over them and proudly offered to give her a sample of my urine.   She tried to hook me up to the IV, but after rolling the needle a few times with no success, she called in the anesthesia specialist in to help her. I didn't yell at anyone because I know one of my callings is to be a pin cushion.  Gosh darn it, I was the best damn pin cushion I could be. A little while later I was informed I wasn't pregnant. Someone throw me a party to celebrate not being pregnant!!! My doctor came in to give us the break down of what she planed to do. She said it's common for the rubber seton she'll place in the fistula to have to stay for up to 20 weeks for Crohn's patients to completely heal. blah, blah, yeah, do whatever you think is best. I trust my ass in your small, cold hands.

Someone injected something special into my IV line and I started feeling dazed as they rolled me to a different room. I remember thinking this is a very cluttered operating room before they had me roll onto a different table onto my belly with my arms above my head... and that's the last thing I remember before waking up to my mom and a nurse rushing me to wake up to get dressed. My doctor came in wearing her surgeon outfit. Great news: she searched for the fistula she saw last week, but there was no sign of it. No drainage seton was needed! She finally removed a skin tag that had been bugging her for two years. She flexed a stricture for the sigmoidoscopy and found another stricture further up with active disease. Since there wasn't a fistula, I think recovery will be easy. I'm just sore from the flex and bleeding from where the skin tag was removed. I'm on orders to limit activity for two weeks until my follow up appointment on the 29th.

I shouldn't be shocked, but I am. I'm just not accustomed to getting good news regarding these kinds of things.

P.S. I completely lost my voice afterwards.

Fake It Until You Make It

I've been getting tons of good vibes from family and friends. It's great to know that people care. It's interesting to hear people's different thoughts about the procedure I'll be getting done on Tuesday. The common theme seems to be positivity. I'm constantly reminded that "it could be worse." From my point of view, I think, it could also be better.

Am I worried about Tuesday? No, I've always wanted an operation done on my ass. It's a dream come true, really.  That's sarcastic positivity at it's finest.

My mentality has improved since the beginning of the year. However, one of my concerns, going into surgery, is that my mental strength will slip away. I've worked hard to find happiness again. I'm anxious about the possibility of becoming depressed. I expect to struggle with it, but I know if recovery keeps me from training for too long, it will be difficult to fake positivity. Yes, some of my positivity is fake. See my sarcastic positivity above. Get over it. I fake smiles and I fake feeling well, so this shouldn't be a huge shock.   I fake it to make people feel more comfortable and to prevent my negativity from shading positive vibes. I fake it for myself, too. I will fake it until I make it genuine.

It all goes down at the Surgery Center when I check-in at noon on Tuesday, April 12, 2016.

Crohn's Sucks

Excuse me while I wallow in self pity. I went to my colorectal specialist today. The pain from my abscess is pretty much non-existent. It's only tender to touch directly.  I dropped my pants and my doctor poked around with her finger finding the abscess. The abscess was tender to her touch, but I didn't feel the pain I felt on Thursday when my gastro touched it. The colorectal moved her finger to another spot that I didn't realize was tender as well. She pointed out that it was a fistula.  She asked a few questions about possible side effects, which I hadn't experienced. That's when she said something like: For your bottom being such a disaster, you sure don't show a lot of symptoms. Even my doctor thinks my ass is a disaster. lol

According to the American Society of Colon and Rectal Surgeons, "An anal fistula (also commonly called fistula-in-ano) is frequently the result of a previous or current anal abscess. This occurs in up to 50% of patients with abscesses."

Apparently, even though the antibiotics are healing the abscess, the fistula makes it extremely likely for the abscess to return after my round of antibiotics are complete. My colorectal doctor was very concerned and recommended that I schedule surgery for next week. Next week, I will have my first Crohn's related surgery. She will be opening up the fistula and possibly the abscess to put a drainage seton in place to open it up so that it can drain and heal. She will also be flexing my stricture in hopes to being able to perform a sigmoidoscopy and she will be surgically removing a skin tag by my anus. She said recovery is one to two weeks. I'm so thankful that my supervisor at work has been understanding throughout all of this and told me today that "my health comes first" when I apologized for having to take off four days next week.

I feel like this song 'We Don't Have to Dance' by Andy, the lead singer of the Black Veil Brides band was written about my relationship with Crohn's.

After the MRI...

After the MRI on Friday, November 13th, it didn't take long for me to start feeling negative side effects from the three bottles of barium I drank as prep. My stomach turned to knots of pain and I found myself rushing to the bathroom every hour or two. I desperately wanted to sleep, but it seemed just as I cried myself to sleep I would get another urgent urge to go to the bathroom again. The urges felt like I had to pee, and even though I peed every time I went I also pooped black diarrhea every time, too. This went on Friday, Saturday, and even Sunday. I did not rest well. I lost eight pounds. I'm sure I was dehydrated. In the middle of the night, when everyone was in bed, I found myself sleeping on the bathroom floor to make for a shorter trip the next time the urge struck. One night, my dad slept in my bed so that I could sleep in my parents' bed with my mom close to their bathroom. My groans from being in pain woke my mom up a few times in the middle of the night, but she was a trooper. I felt physically and mentally fucked up, yet I'm still convinced the MRI was better than a colonoscopy.

I messaged my doctor to let him know how horribly I had been doing since the MRI and he let me know that it was typical for the barium to worsen symptoms, but that it should only last for a few days. Well, that would have been nice to know before I went into the MRI. It also makes me question the results of the MRI. Did the barium cause for bad or worse results?

I almost called in sick to work, but I hated to waste a sick day. I want to save my sick days for hospital visits if it has to come to that. Thankfully, I started feeling better on Monday. Yes, I was still experiencing pain, but I was experiencing less trips to the bathroom. My doctor called right at 5pm as I was signing off my computer at work, so I answered it even though my supervisor Kim was right in the office next to me. I would have walked into the stair well for privacy, but I didn't want my phone to drop the call. My doc asked about how my visit with my colorectal went, so I told him, "It was too tight to do the sigmoidoscopy, so she just flexed it with her finger and I go back in three months." Geez, I can't imagine what my supervisor is thinking of this conversation. My doc then went on to give me my MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Obviously, this means there is active disease, which makes us question if the medication, Cimzia, is working. My doc gave me two options: bump the dose of Cimzia to every three weeks instead of every four or switch to Humira or Remicade. I decided that I want to be sure Cimzia is not working before I switch to a different biologic, so I chose to bump the dose. I'll get lab work done in a few months to see if my inflammation levels have gone down and that's how we are going to tell if Cimzia is still working or not.

I was crying during my drive home from work, which has been happening more often than I care to admit lately. I had my car read me my messages for the day and Brittany came to my rescue again to turn my day around. Her and her family got me a get well gift, so I called her to thank her and filled her in about the results.  I don't know how she does it, but she should write a book on how to be a friend to someone with a chronic illness because she is an absolute beast at it. She rocks my world when it needs rocking. Thank you, Brittany, for being an angel disguised as my friend. I know we don't talk that much, but I hope you know your heart is amazing and I love you!

I made it to work for the rest of the week, but I have been unfathomably exhausted. I did my Cimzia injections on Thursday, November 19th.  Throughout the week I experienced occasional stomach pain. Mainly after a BM, but sometimes the pain just hit like a Mack Truck. I've been going to the bathroom more often than I'd like, but I've had worse so I'm happy it's not worse. Sleep has been difficult because I'm either waking up to go to the bathroom every few hours or I'm awake because I can't sleep through the pain.

I was supposed to visit Taylor this weekend, but I cancelled on her to stay home and recover from the week I've had. I promise it wasn't to stay home to binge watch House of Cards on Netflix. Thankfully, she understands I'm not always a flake. She's been a great ear for me to vent to. I don't complain verbally, out loud, but she is one person that will listen and I won't feel guilty when I need to get it off my chest. I know I complain on this blog (even though I think I'm just explaining the facts of what I'm going through mostly), but I think that's different. The minute you don't want to read it you can close my page, but mentally it helps me to let it out sometimes.  She encourages me to call her at 3am when I'm in pain and can't sleep. Thank you, Taylor, for always being there to listen about my crazy shit. Thanks for always checking in and sending me funny memes. My love for you runs deeper than the sewers. I love you, Stinkbrain!

I even had to turn down an offer to go to the Gator game. It was the right decision because I feel like the rest I got today did me well. I've only had pain once today and I've only been going to the bathroom about every three to four hours, so I'm super happy I seem to be on the right track.  I have more to say, but I'll blog again tomorrow since this post is already long