Caution: Adulting Ahead

I recently become a certified Construction Risk Insurance Specialist (CRIS).  A few weeks later I received a promotion!  My duties have been slowly changing over the past couple months. I'm training our new Contracts/Risk Specialist on negotiating terms and conditions for our purchase orders and subcontracts. I've been getting more involved in owner and other special agreements. I've also been handling more claims (workers compensation, auto, builder's risk, general liability, as well as bond claims). It's exciting and I'm learning a lot!  

The people I work with are great! The department I am in operates as a strong team without any drama. We have a department meeting next month to discuss the succession plan for when our director retires. I'm confident our culture will remain the same throughout the forthcoming changes. 

So, what's next?  I'm going to keep working hard. In the next month or two, I'm going to start the process of getting approved for a mortgage so that I can weigh my options of renting vs. buying. *gasp* This level of adulting is a bit daunting. I'm working on paying off my medical debt, increasing my savings, and improving my credit score to be strong enough to withstand a few dings when I apply without bringing it below excellent. 

Full of Shit on the Fourth

Inquiring minds want to know how my bowel movements have been, so I decided to write my Shit Horoscope.  My pooping habits haven't been regular lately. Constipation has been ruling my zone with occasional diarrhea increasing the unpleasant atmosphere in my colon. There are either too many poo vibes or not enough. Advice from others is not likely to be helpful, but fresh perspectives could change my outlook. Being full of shit is essential before the moon will allow waves in the bowl.

In all seriousness, constipation has been an issue for the past month or two. I'm shitting once every three to four days. While diarrhea is a huge relief from the constipation it still sucks! Constipation drags me down and diarrhea wipes me out.  Before the surgery, I pooped three to four times a day. When I go one day without taking a crap, my stomach  starts to feel uncomfortable. Each day of constipation adds to the pressure in my gut. I get the sensation of having to poop, and then I sit on the toilet for hours with no success. The feeling wakes me up in the middle of the night. 

On July 4th, I ran a four mile race with Lynn. I had not pooped in four days and being full of all the shit slowed me down. It wasn't until I arrived at the race that I realized how terrible I felt. My stomach didn't feel well. I had the urge to poop, but I knew I wouldn't be able to so I didn't even try. I walked a lot.  It was hard to run with the uneasy feeling. My average pace was 11 minutes per mile, which was slower than my first race back after surgery. I was definitely disappointed in my performance because my training runs leading up to the race were significantly better. 

I can turn off nearly every thought except my thoughts about the state of my bowels. When will I poop again? When will I stop pooping? What if I shit myself at work? Can you tell I'm constipated right now by looking at my face? If I poop before my run, it will be an amazing run! I am bearing down too hard. I'm going to give myself hemorrhoids. What if I have a blockage?  I sweated more sitting on the toilet trying to push out a tiny dip n' dot turd than I did when I ran the four mile race. I just want a beautiful bowel movement every day. I will be grateful for my good shits even though they don't occur as frequently as I would like.

 

Dirty Thirty Birthday Shenanigans

Last weekend Taylor came into town to celebrate my 30th birthday again! She is the best!! This time around I dare to say I was more fun than last time because I don't have to care for the ileostomy anymore (that thing stressed me out). It was much needed Taylor time! My life is finally getting to a healthy chapter and she is about to start a different chapter in hers. It's awesome to see her dreams becoming a reality! Our friendship finds a way to grow through these different chapters of life and I love that.

Dana and I had a belated birthday celebration with some of the MarathonFest ladies while Taylor was in town. We went to dinner downtown and saw a show at Sak Comedy.  Special shout-out to Lynn for celebrating my birthday again!

Taylor started a vlog! Check it out and subscribe to follow along as she begins a new chapter.

This is the video she made during her visit for my birthday:
https://youtu.be/0v7IrOcP91Y

Fart in a Bottle

Kim has been in town for the past week and she leaves to go home tomorrow. I wish we had more time to spend together. At dinner tonight with my family, I reminisced about the meltdown I had the last time she was in town and how far I have come since then. During Kim's last visit, I was just about a month into recovery from my first surgery. When she hugged me before she left to go to the airport, I lost it. I sobbed about how overwhelmed I felt with the stoma and ostomy. I cried because recovery was hard and it sucked. Tears also found my face-cheeks because I knew I was going to miss her. I was a mess. I felt defeated even though surgery went better than expected.

My family was shocked to learn that I had been overwhelmed and emotional about the surgery and ostomy. Is that a testament to my ability to keep things bottled up?  They couldn't have known I struggled coping with my new reality if I didn't tell them. For having uncontrollable bowels at times, I sure know how to keep shit to myself. My instincts were to avoid feelings, bury them, and hope they went away. For the most part, it worked. My emotional maturity is questionable. I don't know what it was about that moment with Kim that cracked the bottle with the things. Once she left, I collected myself and put the things back in the proverbial bottle.

I hugged Kim goodbye tonight and I didn't have a meltdown. There weren't any feelings I was suppressing either. I am a lot stronger emotionally and physically than I was a few months ago. I can't wait to see her in August!!!

I think if I trapped a fart in a bottle and I left it in there long enough, eventually it would not stink when I opened the bottle. I also think if I bottle up feelings long enough, eventually they will lose their potency when/if the bottle gets cracked. I could probably afford to get better at expressing myself. But then again, I think my "fart in a bottle" analogy is pretty fucking expressive. It could also be absolute bullshit.

Sub-Two or Bust

I signed up for the summer/fall season of MarathonFest!

When I joined MarathonFest in the summer/fall of 2016 to train for the NYC Marathon, I was rushed to get to 10 miles after my minor surgery in April of 2016. Desperately trying to feel better, I switched from Cimzia to Remicade during that time as well. I basically had two months to go from being out of shape to being able to run 10 miles in order to keep up with the the NYC training schedule once the season started in 2016.

I want to do it differently this time around. I don't want to be rushed. I plan on sticking with half marathons this season and at the moment I'm only registered for one. Rather than starting when the season starts in June, I currently plan to build most of my running base outside of MarathonFest for the next few months. I want to get faster so that I will be able to join a faster pace group.  I'm aiming to start running with them regularly in September when my mileage increases for half marathon training. My goal for the OUC Half Marathon in December is to finish in under two hours. That means I would need to average a 9:09 pace for 13.1 miles. I can only run one mile at that pace. In fact, my first mile today was a 9:04. (my second mile was a 9:47). I have a little over six months to train hard and build the endurance it will take to maintain the pace during my first mile today for twelve more miles. This seems realistic, right?

When I achieve a sub-two hour half marathon, I will seriously consider committing to train to qualify for the Boston Marathon. I hate commitment, but this kind of excites me!

Hello from the Other Side

I fell a little behind (haha "behind") on blogging. I had my post-op follow-up appointment at the Cleveland Clinic on April 9, 2018. They lifted all of my physical and dietary restrictions and I do not have to go back unless I have major issues! The wound where Scarlett used to be has completely scared over. I finished all three of my Remicade loading doses and I am officially on the eight week schedule. According to my gastro, we no longer have to monitor the stricture I had closest to my rectum because it's not there anymore! That means fewer rectal exams!!! For the most part, I am doing well. Shitty days are to be expected and thankfully they have been few and far between. 

I Can Always Run Two Miles

My journey back to running has been smoother than I thought it would be. Prior to March 18, 2018, my last run had been the Space Coast Half Marathon on November 26, 2017. If you don't know what I went through between that period of time, look at my previous posts. Once again it feels like I'm starting over. Whether it's true or not, I think I can always run two miles. Okay, maybe it's not exactly true. Take a look at my stats below and see how fast my body is capable of bouncing back though.

• The first time I decided to see what it would feel like to run again, I jogged on and off during my walk and logged 2.23 miles in 31:46 on March 18th. Keep in mind that this was just two and a half weeks after my last surgery and it was a week and a half to three and a half weeks before I was technically supposed to do any "strenuous activity". Running isn't strenuous, right?
• Since the trial run felt okay, the second time I laced up I intentionally went on a run and logged 2 miles in 25:05 on March 20th. 
• On my eighth run back, I logged 2 miles in 20:23 on April 4th. 

Running feels a lot different than I remember it feeling before my surgeries. It feels easier somehow even though I'm out of shape.  I'm training for a few 5Ks to ease back into it. Eight runs in the past three weeks have prepared me for the Riverside Dash 5K tomorrow! While I will not be setting a personal record at the race tomorrow, it will be a huge victory for me to cross that finish line.

In general, my running goals are to go at my own pace and listen to my body.  At the end of May, I will re-evaluate more specific running goals to determine realistic pace goals, target races, and training plans. I have long term running goals in the back of my mind, but they seem too crazy to take them seriously right now.  My best running days are ahead of me! 

This is What I Wanted

The ostomy reversal surgery took about an hour and half on Wednesday, February 28, 2018. It went well and I'm glad to finally have it behind me. My mom went down to the Cleveland Clinic with me to help me again. Even though I hate needing her help, I am grateful for her support.  Taylor was there on surgery day and visited me again the day after surgery. She told me about all of her upcoming plans and it was a good escape for me. My Team Challenge friend, Bonnie, stopped by to visit me the day after surgery, too.

I basically just stayed in the hospital until I pooped. I pooped late on Friday, March 2nd and I was discharged Saturday, March 3rd. When I pooped for the first time out of my original asshole after surgery, I cried. Okay, I sobbed like crazy in the hospital room by myself.  It was the most emotional and happiest shit I have ever taken in my life. It may have been the least impressive shit in the history of mankind, but it was beautiful to me.

Recovery is going well for the most part. Things are progressing nicely. I've been experiencing occasional stomach aches, but they haven't been lasting for too long.  I can sit up from my bed without pushing myself up using my arms. I can bend over and tie my own shoes. I've been walking and working out on an elliptical. I even jogged today for the first time in nearly four months! At times my bowel movements are erratic, unpredictable, and uncontrollable. I've shit my pants more times in the past few weeks than I have in the past couple of years. Of course, the struggles fuck with me sometimes. When it's hard, I remind myself that this is what I wanted. I didn't want a permanent ostomy. I want to poop out of my first ass even if that means it's messy and I can't trust my bowels sometimes. Should I wear depends when I leave the house or should I risk shitting my pants in public?  I think about bathrooms, flatulence, and bowel movements all the time.  At first, the pain took my breath away whenever I sat up or stood up and walked. Thankfully, the pain has decreased significantly over the past few weeks and I'm able to move pain free now. I think I experienced more severe pain from the ostomy reversal surgery than I did from the bowel resection surgery. Since pain medicine causes constipation, I avoided pain meds after surgery day because I knew I couldn't be discharged unless I pooped. I chose to be in pain to give myself a better chance to poop and get out of there.

The past few months feel like they were an out of body experience and it feels weird to be on the other side both surgeries. As if I've detached myself from it in a way. I've been waiting for this battle with Crohn's to break me physically, mentally, or otherwise. I've been waiting for it to change who I am. It hasn't really broken me or changed me this time though. I've somehow managed to bounce back quickly whenever the current struggles fuck with me. My battle with Crohn's in 2012 seemed more difficult to deal with and definitely broke and changed me more than this current battle. Hell, even my battle with Crohn's in 2014/2015 seemed to break me and change me more than this one and it's likely because I have felt a lot sicker in the past than I have recently. I knew going into the first surgery that if I had to pick a time in my life for this to happen, this is it. I think being in shape and somewhat healthy leading into it as well as having the support of my family, friends, and employer helped me get through this as well as I have.

I had my first infusion back on Remicade on Thursday, March 15, 2018. They pre-medicated me with Benadryl and steroids because the risk of an allergic reaction is higher since I was off of Remicade for over six months. When the Benadryl hit my veins, I took a nap.  Now that I'm in full recovery mode and back on the magic juice, I'm going to start making my comeback!

One Less Asshole

I have finally been cleared for ostomy reversal surgery at the Cleveland Clinic on Wednesday, February 28, 2018. The colonoscopy and biopsy results came back showing mildly active Crohn's disease in my rectum and throughout my colon.The active inflammation won't keep me from moving forward with surgery though. It sucks to be told Crohn's is active again. I haven't had a dose of Remicade since September 5, 2017.  My gastro thinks it's best to wait to start back on Remicade two weeks to a month after surgery.

At my pre-op clearance appointment with my primary care doctor, I had lab work and a urinary analysis (UA) done.  The UA came back showing a urinary tract infection (UTI). I'm skeptical that it was really an infection because I had zero symptoms.  They prescribed Cipro, an antibiotic, and asked me to come back in to get another UA. The second UA also came back showing a UTI even though I had taken Cipro.They prescribed me a different antibiotic (Sulfamethoxazole-TMP). I can't bring myself to believe that the alleged UTI was really an infection as I had not experienced any symptoms. I considered not taking the second antibiotic at all. However, after I spoke with one of my nurse friends, I decided to only take the second antibiotic for three days instead of the prescribed five days.

Surgery is only three days away! I changed my ostomy appliance for the last time today. I'm still trying to wrap my head around it.  In just a few days, Scarlett will be gone and I will be shitting out of my original asshole again! The world will soon have one less asshole in it. This makes me happy! I went into the first surgery expecting to have an ostomy for the rest of my life. Three months later, I find myself going into the second surgery to reverse the ostomy. It's mind boggling! Recovery will have its challenges, but I am ready to get through another surgery. I can't wait to put this behind me.

Surgery time is to be determined on February 28th. They expect surgery to take about two hours and they expect me to be in the hospital for two to four days.

My Ordinary Reality

If you endure something long enough, it will slowly become your new normal. This post is about my new normal. The forthcoming sentences and pictures have strangely become my ordinary reality during the past few months. It may be disgusting. I can't close my browser to stop being repulsed by my new reality though. I have to deal with this shit no matter how nauseating it is at times. It sucks, but I'm getting better at it.

My preferred way to empty the shit in my pouch into the toilet is to lift the toilet seat and get on my knees to get closer to the water line so that I decrease the amount of splash caused by dumping the shit into the toilet.  This is hard on my knees and troublesome when the floor is wet.  Before I got the ostomy, I would never touch a toilet seat outside of my house. I'm great at squatting and hovering. lol  Now, I find myself touching the toilet seat with my hand in every bathroom I use.  There is nothing neat about dumping the shit into the toilet. Even though I reduce splatter, I do not eliminate it. It is common for shitty toilet water to splash back up onto the toilet rim, my hands, arms, and/or clothes. I use wipes and/or toilet paper to clean the opening of my ostomy before rolling it to close it and sometimes my finger pokes a hole in the wipe/toilet paper causing my finger to make direct contact with shit.

I also come in direct contact with my shit on change days. Scarlett is almost always producing output while I change the ostomy appliance. I inevitably end up getting shit on me during the process. I recorded Scarlett shitting on me this morning, but due to technical difficulties I could not upload the video on here. You'll have to settle for pictures instead.

My stoma is now 7/8", which is just slightly smaller than a quarter.

I set out my ostomy supplies to prepare for change day. 

Oh no, Scarlett is about to blow!

She always thinks it's a good time to shit when she's free. She's a non-stop asshole like that. I'm 30 years old and still shitting myself regularly.  

The feeling of victory when she behaves long enough for me to clean and dry the area, and prepare and apply the adhesive parts of the appliance.

Bring it on, Crohn's Just kidding, please leave me alone.

This photo shows that I am okay. I am making it through this. I am pretty fucking amazing!

Birthday Weekend 2018

I don't know where to start. I felt special and loved this weekend even though it didn't go quite as planned. This past Friday, Taylor came to visit and she arrived at the house before I got home. Without getting into the gritty details, my mom said and did some things that were mean and not hospitable to Taylor. It upset Taylor to the point of tears. When Taylor told me she didn't want to stay at my place on Friday night, I didn't blame her. I was so mad in my car on my way home when I found out what happened that I wanted to cry! Taylor did not deserve to be treated that way. My chest still feels heavy from what happened on Friday. While it annoys me to be having these feelings, it is better than being numb at the moment. 

I drafted a whole post on the bad part about it along with insight on my relationship with my mom, but I can't bring myself to share it in its entirety. I always try to keep my grievances to myself, so I'm going to share a little background on the drama that built these walls around me instead of sharing something that may cause a loss of dignity. Somewhere along the way enough proverbial stones were thrown at me for me to become numb to the pain. I don't care (at least that's what I tell myself) because it isn't worth the fight anymore. Don't get me wrong, I'm not innocent in this drama. At some point though, I realized the drama made me someone I didn't want to be and I closed myself off. I flipped an emotional switch. I stopped playing the game. I built these walls around me and I struggle to let anyone in because of it.

Taylor apologized for not being strong. I apologized for my mom. Taylor doesn't have the walls protecting her that I had. She isn't numb to the pain my mom's words can inflict and my mom's words cut her deeply. It devastated me to see the emotional pain my mom caused Taylor. Suddenly, I was no longer numb to my mom's bullshit. This time, my mom's words cut me. Taylor is stronger than she gives herself credit for. After we had time to talk about what had happened, she told me not to give up on my mom.

Big sister to the rescue! Lynn, didn't hesitate to welcome Taylor and I to stay the night at her place. I was a little terrified to be having my first sleep over since getting the ostomy. It helped that I could make myself at home and use the bathrooms whenever I needed to without feeling embarrassed. We snuggled on the couch and watched T.V. Taylor and I had tequila. It was my first time having alcohol since surgery and other than having a burning sensation around my stoma in the middle of the night, it was okay. A huge shout out to Lynn for taking us in!

Lynn had to leave early in the morning. She was awesome and let us sleep in. Taylor and I had a fun day on Saturday spending time together and catching up!  We went to the Winter Park Farmer's Market where I bought Girl Scout cookies. We strolled around Park Avenue. Taylor had her wedding ring cleaned. We ate lunch at he Cheesecake Factory and our waitress recommended a nail salon close by for pedicures. Taylor treated me to a pedicure. They used a cheese grater to remove all of my dead skin. I don't think my feet have ever been this smooth before. After getting our nails done, we went to the Florida Mall to shop for some ostomy friendly shirts I could wear to work. By this time, my pouch was full and it was easy to tell if the shirts I tried on were loose enough to hide the shit in the bag under the shirt. I got two shirts courtesy of Taylor! Thank you for spending time and money on me, Taylor! I love my feet and I love my new shirts!

When we were done at the mall, we went back to my place. We kept to ourselves and didn't interact with anyone else at the house. The tension in the house was a little awkward. Soon enough Lynn arrived for movie and pizza night in my room. We ordered pizza and watched the first and second Miss Congeniality. I enjoyed our relaxing time together.

Sunday, Taylor and I relaxed as I prepped for my colonoscopy. I was on a clear liquid diet all day. Taylor walked with me while I went rollerblading. We took a three hour nap and we watched Wild Hogs on Netflix. We watched part of the Super Bowl with my family. My mom acted as if nothing had happened. It was stressful and weird. I did an enema before we went to bed around 8:30pm.

I woke up at 4:30am on my birthday to do another enema before Taylor took me to my colonoscopy appointment. I'll blog about that later. After my colonoscopy, we stopped at Wawa and Taylor took me back to my place. We made the most of our time together! I can't wait to celebrate my 30th birthday for real when I'm fully recovered from my next surgery.

Progress

On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.

At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry.  She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.

The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?

At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.

Scarlett

The anticipation of surgery is over. The results are in and it turned out better than expected. It wasn't an open surgery, it was laparoscopic. The ileostomy is not permanent, it's temporary and it will hopefully be taken down by early March. I went back to work on January 3, 2018 after being off for only five weeks. Since being discharged from the hospital, the pain has been manageable without pain meds. Everything seemed to fall into place and the best case scenarios prevailed. Even though things have been going better than expected, it doesn't mean that it's been easy.

It's common among ostomates to name the ostomy, also known as a stoma. After many suggestions and much consideration, I named mine Scarlett. She's my second butt, my front butt. She's an asshole. I love that her name has a double "t" like the word "butt". My stoma is a red-ish color and once it's reversed it will leave a scar. Scarlett is not well behaved. She farts and shits at will. Is it okay that I don't like her?

People told me that an ostomy would give me my life back; however, I don't think my life was far enough gone for me to have the same sentiment. Yes, Scarlett is serving her purpose for me to get back to normal one day. I don't see it happening while she's functioning as my second asshole though. If Scarlett was permanent, how would my future look? Right now, I'm just waiting for her to leave so that I can move on with my life.

I have this unexplained, constant fear.  I bring spare clothes with me to leave in the car wherever I go in case she leaks. I carry spare ostomy supplies with me in my purse and I keep spare supplies at work in case the unimaginable happens. What if she leaks? Will I figure out how to minimize the mess and patch the leak? Or, will I have to change the whole fucking thing while she's still shitting? I am still abiding by the dietary restrictions. The fear of a blockage and subsequent emergency surgery has been instilled in me. Is everyone looking at my stomach? Can they see the bag filling with shit through my shirt? Shut up, Scarlett, we are not making friends today. I don't want to go anywhere. I don't want to do anything.

I change my ostomy appliance every three days. Scarlett is supposed to be less active in the morning, but she shits whenever she wants. The changes are the hardest when Scarlett is constantly shitting during the change. I use adhesive remover to remove the bag and clean off the leftover adhesive residue from my skin around the stoma. I use wet paper towels soaked in baby soap to clean the stoma and surrounding skin and I follow that by wiping it down with wet paper towels to remove any soap left behind.  At first, I would measure my stoma and then cut the barrier opening of the two piece appliance at this point.

Barrier Opening. I cut in between the 1" and 1 1/4". This

is the side that sticks to the barrier ring and my skin.

Barrier Opening. This is the side Scarlett peeks through

on and also the side the two piece drainable pouch

connects to.

Now that I know the size of my stoma is slightly over one inch, I cut the barrier opening before removing the bag because Scarlett is an asshole and she can't be trusted in the open. I use skin protective spray and wipes on my skin around Scarlett and as it dries I make sure the barrier opening is cut to the right size making necessary minor adjustments. Next, I open the ring barrier protector (super sticky ring shaped thing that goes around my stoma first), cut it, and stretch it so that it will fit around my stoma. 

Ring Barrier Protector. This is the first thing that

goes on my skin around my stoma.

Cutting it was not advised by most of my nurses, but it allows me to get a perfect fit around my stoma by overlapping a bit of it. Otherwise, it's easy to overstretch the ring and then it won't fit correctly. I do make sure to overlap it at the top and not the bottom since shit is not immune to gravity. I figured if the overlap crack is at the top it will be less likely to leak.  Once the ring barrier protector is around the stoma, I put the barrier opening of the two piece appliance on top by peeling a few layers to reveal the adhesive and putting Scarlett through the hole I previously cut.

After the barrier opening is in place, I connect the drainable pouch. The plastic ring on the bag (drainable pouch) in the picture to the left connects to the barrier opening. The bottom of the bag is rolled up three times and held in place with Velcro as shown in the photo on the right. Once the bag fills with shit, I use the Velcro opening to empty it into the toilet (more on that in an upcoming post). The bags the hospital provided were clear. I hated being able to see my shit through the bag, so I'm glad my prescription bags are opaque. An ostomy is actually considered to be a prosthetic.

Once the bag is off, it's difficult to keep the area clean and dry while doing all of the steps above at the same time Scarlett is shitting. Some changes are harder than others. I am getting better at handling it each time. I recently discovered that Huggies Wipes are amazing when it comes to keeping it clean during high output change days.

My belly definitely looks different than it did before. It's been tough, but I've been tougher!

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 Eight Day Hospital Stay

If you think this post is long, try staying in the hospital for eight days. After surgery, I was on a clear liquid diet for two days, a GI soft diet for three days, one day of NPO (nothing by mouth), and then regular hospital food thereafter. My appetite was non-existent. The fact that the food and liquids tasted like shit didn't help.

I had a morphine pump for three days after surgery. There was a button I could press whenever I was in pain to activate the morphine through my IV. I could only press it every ten minutes, which wasn't an issue. I only pressed it once and I don't remember when that was. The nurses constantly told me not to be afraid to press the morphine button. I have experienced far more agony than what I felt in the hospital, so it was difficult for me to determine if I needed pain meds or not. I've pushed through much higher pain levels without medication on my own because Crohn's is fucking torture sometimes. In the hospital, I occasionally moaned in pain, but the pain never brought me to tears and the pain didn't feel debilitating. After they unhooked the morphine pump, they offered me Oxycodone for pain. Again, the nurses told me not to be afraid of it. A couple of friends told me not to be a Martyr. Was I really choosing to suffer in pain rather than admit I was in pain and take the meds? I definitely experienced pain in the hospital, but I didn't think it was that bad because I've felt worse before and managed it without any pain meds.  I think I accepted Oxy three different times.

I took my first couple of walks on Thursday, the day after surgery. To make matters more complicated, my period started on Thursday. I needed help to sit up. My abs had no strength.  It was a process to unhook my compression calf sleeves that plug in and inflate and organize all of the IVs, cords, and tubes so I could walk. Taylor walked with me. Standing up felt weird. I don't know how else to describe it. My belly felt different and sore. Actually, my whole body was sore and stiff. They took out my catheter and my mom helped me out of bed whenever I had to pee. One time, I hollered out of the bathroom to the nurse, "Something is coming out of my butt!" To my surprise, the mucus coming out of my old asshole was normal and expected. I later found out that my new asshole, the loop ileostomy, has two holes.  One hole for waste that collects in the ostomy pouch and another hole, which is considered a fistula, to secrete mucus through my lower intestines and out of my old asshole. Yes, I now have two assholes and stuff comes out of both of them. I can't make this shit up. It's a nightmare I didn't know existed. On the positive side, a loop ileostomy is always temporary.

Friday, the doctors realized there was a miscommunication. My catheter should not have been removed, so it needed to be re-inserted. Sure, the nursing student shadowing the nurse can do it. She didn't seem very confident, but she figured it out after asking the nurse to help her. The catheter made one more thing to carry with me on my walks. We tied a glove to the bottom of the IV stand so I could wheel it with me on my walks. Why don't they have a wheeled stand suitable to hold a catheter?  I had three visitors on Friday, Badass Doreen, Sas, and Bonnie. They all happened to show up within minutes of each other around 11am. I felt loved and their well wishes lifted my spirits. Sas and Bonnie stayed about an hour. Badass Doreen was awesome and went to lunch with my mom so that I could take a nap. I woke up in the early afternoon moaning in pain. For my entire stay at the hospital, the nurse techs came by every few hours to take my vitals and empty my JP, catheter, and ileostomy. When the nurse tech took my temperature Friday evening, I had a 103 degree fever! I think they gave me Tylenol. My head hurt worse than my stomach at that point. Thankfully, Doreen was there for me and my mom. I think it took a while for my fever to break, but I don't remember when it did. I do know that Doreen left around 9pm and my mom stayed the night with me.

I don't remember much from Saturday and Sunday (I probably slept 85% of the time at the hospital), except that I had a 102.7 degree fever around 8:30pm on Sunday I think they gave me Tylenol again for the fever. I'm not sure when the fever broke. On Monday, I wasn't allowed to eat or drink anything. The nurses even stopped my IVs and stopped giving me the routine meds I was getting because I couldn't have water to swallow them down.  The reason they gave me for being NPO was so that they could run tests to figure out what was causing the fevers. I found out later that it was likely in case they needed to take me back into surgery based on the results of the tests. Monday was the hardest day in the hospital. There I was trying to recover from surgery. I was already dehydrated and weak and they wouldn't let me eat or drink anything. I pressed my call button multiple times begging for some water or ice. "Bring me some fucking water!" My mouth felt as dry as a desert. My lips are still cracked at the corners from that day. It took them all day to take me to have two tests done and get blood cultures. The blood cultures came back okay. The first test, a cystogram, was done around 5pm. It was pretty easy since I already had a catheter in. Afterwards, the nurses and my mom wanted me to walk. Ha! I was so thirsty that I refused to walk if they couldn't give me water. Asking me to walk was bullshit.  After the cystogram they hooked me up to an IV for antibiotics, but I still wasn't allowed to eat or drink. They took me to get a CT scan with an enema contrast right before midnight. By this point I was pissed, annoyed, thirsty, and hangry. Moving on and off the CT table with only one person helping me was a struggle and it hurt my stomach.  When the tech was inserting the enema tip for the barium contrast, I realized that my stricture closest to my rectum was still there. No wonder the ostomy is temporary! I advised the tech of my stricture and the pain the large tip (lol) was causing in my anus. (Don't worry, I've already accepted that anal will never be for me.) I was happy once the CT was over, but disappointed that I had to wait for the results before they would clear me to eat and drink. When I got back to my hospital room after midnight, I slept until morning. I was completely drained. The blood cultures, cystogram, and CT results all came back okay. We never found out what caused the fevers. I think it was just my body trying to heal and recover. It was on overload. Although looking back, I would be curious to know if the fevers were a result of taking the pain meds. Even though I lost it a couple of times on Monday, I tried to hold it together and I was a lot nicer than I wanted to be. 

By Tuesday, it started to feel like I would never get out of the hospital. It didn't matter that my appetite increased a little because every time a meal came, the nurse tech decided to come in and empty my JP, catheter, and ileostomy and then suddenly I wasn't hungry anymore.  Eventually, I got the bright idea to start asking the nurse tech to wait until I finished eating. Taylor visited me, brought dry shampoo, and did my hair. I love her! I didn't shower the entire time I was in the hospital. They helped me wipe myself down, but that's just not the same as a shower. I walked six times on Tuesday! Yet again, I had another fever Tuesday night. This time it was only 101 degrees and it came down quickly after I took Tylenol.  When my doctor and his team made their rounds early Wednesday morning, they let me know that if I can go 24 hours without a fever they will discharge me on Thursday. I walked six times on Wednesday, too.

Around 4:30am Thursday morning, the nurse tech took my temperature with a reading of 100 degrees. Knowing I wouldn't be discharged if I had a fever, I asked the tech to take my temperature again since I didn't feel like I had a fever. The tech immediately took my temperature again with a reading of 98.4 degrees. I don't understand how the thermometer can give those two different readings in a matter of seconds. We went with the second reading. Around 6am, my doctor and his team let me know that I would be discharged! It's a slow process to get discharged. The pharmacy had to fill my prescription, the ostomy nurse had to change my pouch and give me supplies so that I could change it on my own, and my nurse had to get all of the discharge instructions in order. When it was finally time to ditch the hospital around 1pm, my mom helped me change out of my butt flap gown and she put my socks and shoes on me. I was overwhelmed with emotion as I moved from the hospital bed to the wheelchair. I cried a little as the nurse wheeled me down to the car my dad pulled around. Other than that, I didn't cry in the hospital. I left the hospital with the JP and catheter and I had follow-up appointments the following week to have them removed.

I survived my first hospital stay due to Crohn's disease. I've had some terrible Crohn's days in the past fifteen years and it makes me wonder how I managed to avoid the hospital until surgery. The surgery, hospital stay, and staying in a hotel afterwards were the most difficult two weeks of my life. The results of the surgery were better than I expected going into it. Although I shouldn't be surprised it went so well because I had the best surgeon! The support from my family and friends meant the world to me! They are absolutely amazing! They made sure I knew I wasn't going through this alone.

When I need motivation, I blast this song: https://youtu.be/8hkmuTvkp_s

Surgery Day 11.29.17

I woke up surgery morning feeling overwhelmed and relieved. I was overwhelmed about not knowing exactly what was going to happen during surgery and I was relieved that it was finally surgery day. By the time I showered with special pre-op soap and got dressed, everyone else was just about ready to go. I gave instructions to my mom about the bags of gifts in the hotel room. My running friends gave me gifts and numbered them for me to open one everyday while I was in the hospital. I gave Taylor a bag to hold with shit that I might want or need in my hospital room.

Upon checking in at the Cleveland Clinic, Taylor and my parents received visitor stickers. Cleveland Clinic also gave them a pager that my surgery team would send updates to. The waiting room slowly started to fill up with other patients. A short time later, the one check-in lady called my name along with five other names. I didn't hug anyone and I don't know if I said anything. I stood up and followed the leader to my pre-op staging area leaving Taylor and my parents behind in the waiting room.

Nurse Debbie made me pee in a cup to prove I wasn't pregnant. When Debbie asked how much I weighed, I said, "160-ish". She didn't think that was exact enough, so she asked me to step on the scale. I weighed in at 159.4. I told her, "the negative .6 was the ish". I took off all of my clothes, changed into a hospital gown, and got into the hospital bed. The needle of the IV Debbie hooked me to was so big that she had to give me a numbing shot before inserting the needle for the IV. My doctor and his team of fellows and residents stopped by and confirmed that we don't know what's going to happen in surgery until he gets in there. He also inquired about my ability to control my bowels, which I haven't had any issues with since I started Remicade in May of 2016. I signed my life away, Debbie finished getting me ready, and then she paged my support team to come back to see me.

It felt awkward to have Taylor and my parents there as they prepared me to be rolled away to the operating room. I'm sure we had small talk, but I don't remember what anyone said.  Taylor snapped the photo below.

It's crazy what you can mask by giving two thumbs up and putting a smile on your face. I don't look terrified. I don't look like I'm mourning my quality of life leading up to surgery. I don't look unsure. I don't look hopeless. I don't look like I'm breaking down. In all fairness, I tried not to let myself lose it openly and it seemed to work (no wonder I have a disease to my gut, huh?). Taylor and my parents hugged me and left. Seconds later I was being wheeled to the operating room.

I lost count how many different people asked for my name, date of birth, and to describe what surgery I was there for. The last one seemed like a trick question because there were so many different possibilities of what could happen during surgery, so I told them the best outcome and mumbled the scary possibilities. The operating room was filled with at least ten people. Machines and equipment I've never seen before surrounded me. The room was cold and white. I had to roll onto the operating table from the hospital bed I was in. I remember someone saying they were about to start the IV. A tear may have found my cheek. I don't remember counting down or anything after that while in the operating room.

Surgery took about five hours. It started around 8:30am and finished around 1:30pm. I was in recovery for about two hours before visitors could visit me one at a time for five minutes each. I remember the nurse kept asking me if I was in pain. In my groggy state, I kept saying no. The nurse seemed concerned that I didn't seem to be in pain, so I asked her if they gave me something in surgery for the pain. After looking it up, she confirmed that I did not receive any pain blockers during surgery. I was in and out of it for a while, not conscious enough to be concerned with asking how surgery went or looking at my belly under the blankets and hospital gown. I heard my mom's voice, which woke me up. When she asked if they told me the news, I said no. That's how I found out I had a temporary ileostomy and it will likely be reversed in three months. I think I went back to sleep after she told me. I remember Taylor visiting me, too! She was excited I was in curtained room number 13. I don't remember my dad visiting me, but I'm sure he did. It's all a blur.

I stayed in the curtained recovery room for about 4-5 hours until they finally had a hospital room open up for me. Thankfully, I had a hospital room all to myself and didn't have to share it with another patient. I don't remember much else from that day. I'm still not entirely sure what they did during surgery. This is how my discharge papers describe the operation:

• Laparoscopic sigmoid colectomy with laparoscopic mobilization of splenic flexure, takedown of colovesical fistula, colorectal anastomosis, laparoscopic mobilization of splenic flexure, intraoperative flexible sigmoidoscopy, intraoperative rigid proctoscopy, and laparoscopic ileocolic resection with anastomosis with loop ileostomy.

I haven't yet dissected the meaning of all of the fancy medical words.

This song sums up my message to Crohn's disease!  https://youtu.be/8fEoWA9Vz3A

The Day Before Surgery

I have plenty of time on my hands, so I am going to start from the beginning

My parents and I made our way down to the Cleveland Clinic for my stoma marking appointment at 1pm on Tuesday, November 28, 2017. Little did I know that I would not be alone again for two weeks. One of my Team Challenge friends gave me an ostomy bag to wear on the trip down so that I could have a better idea of where to guide the nurse to make the marks. Before my appointment, we stopped at Chick-fil-a. Even though I was on a clear liquid diet, my parents wanted me to come inside and sit with them as they ate lunch. Since we were just getting started, I didn't want to rock the boat. I sat there and watched them eat while I sipped on some water. Whatever, as long as they are comforted during this difficult time.

I took off the ostomy pouch I was wearing after they ate lunch. Although it felt weird, it was a good reality check for me to literally visualize it on me. Once we arrived at the Cleveland Clinic, my parents took a seat in the waiting room while I checked-in. After checking-in, my mom inquired if I wanted them to come back with me. I shook my head because I wanted to tackle the appointment by myself. Soon, I found myself in a patient room with two ostomy nurses. One nurse typed in notes on the computer as the other nurse placed both thumbs on my hips and both index fingers at a diagonal on both sides of my belly button. These were the spots we marked for the stoma. My left side would be for a possible colostomy (from large intestine) and my right side would be for a possible ileostomy (from small intestine).

My belly does not look like this anymore.

I thought I would get to give more input about the location of the marks, but according to the nurse my belly was a textbook mark since it was flat with no creases. If the marks had interfered with my pant line, we would have had a discussion. Honestly, the one mark was almost exactly where I had placed the practice one on my trip down, so I felt okay about it. The one nurse had me stand in front of the mirror and lift my shirt. She then proceeded to hold an ostomy pouch at one mark and then switched to hold it at the other mark. She didn't know I had already visualized it and she seemed shocked about my calm acceptance of it. The nurses let me know that if I end up with an ostomy, they will be visiting me in the hospital after surgery. Okay, I hope I never see you again.

We checked-in at the hotel and I started my laxative preps. I also tried to take a nap. My mind was racing and the maid was vacuuming what must have been the biggest fucking room next to ours because the vacuum just kept going and going. I couldn't sleep. Taylor arrived at dinner time and my parents went out to eat while she stayed with me. I was in the middle of my second round of laxatives, but we found time to open the gifts she brought me and have a pillow fight! To my surprise, the laxatives actually worked! It was a lot easier than both of the preps I did for my colonoscopy. I was up going to the bathroom multiple times throughout the night. I wanted to lie in bed and cry, but I couldn't cry with my parents and Taylor in the room. I couldn't even bring myself to cry in the bathroom by myself because I knew they were all in the other room. I held it together and that was that.

This chorus:
https://youtu.be/HzTot2OZI0s

Details for the Big Day

By this time next week, the surgery will be complete and I will be in recovery. I am scared of the unknown. We don't know what the results are going to be. I won't know the results until I wake up from surgery. My gut is telling me the results are not going to be the results I want. My gut is a bastard though. The anticipation becomes heavier with each passing day.

I had a pre-op phone call with my nurse at the Cleveland Clinic today to work out all of the details for the big day.  This is what I know:

Tuesday, November 28, 2017

• CLEAR LIQUID DIET ALL DAY
• 1pm: Stoma marking appointment at the Cleveland Clinic.
• While I'm at the Cleveland Clinic for the stoma marking I also have to get blood typing done.
• 2pm: Take the first of two rounds of antibiotics
• 3pm: Take 3 Dulcoax tablets.
• 5pm: Mix 238 grams of Miralax with 64oz. of Gatorade. Drink 8oz. every 15 minutes.
• 10pm: Take last round of antibiotics.
• NOTHING TO EAT OR DRINK AFTER MIDNIGHT

Wednesday, November 29, 2017

• NOTHING TO EAT OR DRINK
• Shower using regular soap.
• Shower using Hibiclens (an antiseptic skin cleanser) from head to toe spending at least five minutes on my torso area before rinsing off.
• 5:30am: Check-in at Cleveland Clinic hospital, unless they call me and reschedule the time.

Surgery is estimated to take about 5 hours. It's going to be a laparoscopic sigmoid colectomy and they will insert a catheter and place ureteral stents during surgery and the stents will be removed before surgery is complete. Possibly sub-total colectomy. Possibly open surgery. Possibly temporary or permanent ileostomy or possibly temporary or permanent colostomy.

• Once surgery is complete they will talk with my posse in the waiting room.
• Expected to be in an intensive recovery room for about an hour and a half after surgery before they move me to the room I'll be staying in for the remainder of stay.
• Estimated to be in the hospital for 5-7 days and the Dr. might advise me to stay in town for a period of time after I'm released before I can travel home.
• The catheter will be removed a few days after surgery.
• I'll have a pain pump to squeeze and control my pain medicine after surgery.
• I'll have to do deep inhalation breathing exercises after surgery.

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.