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. 

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!

T-Minus Three Weeks!!

I'm still processing my cystoscopy experience this morning, so I'm going to save that post for next time and post about running and recovery instead. I plan to run four more times before surgery (November 11th, 18th, 21st and 26th). These last few runs will be treasured. I will take note of the strength my body possesses to power forward. My opportunities to run before surgery are numbered and the inevitable break-up is fast approaching. Surgery is three weeks away!

Despite all of my excuses, running charms me and casts a magical spell over my mentality. I think the fact that I keep showing up to run while I'm facing bowel resection explains it well. One of the benefits of the spell is having the fortitude necessary to handle this shit storm better than I thought I would. I will not take these last few runs before surgery for granted. I will let each run remind me that I am more incredible than I give myself credit for.

The thought of recovery being hellish scares me. If I struggle during recovery, I am going to read this paragraph. I am determined to recover successfully! In order to have a successful recovery, I will follow the doctor's orders as reasonably required, fight through the pain, take naps, and accept the results of the surgery as my new "normal" no matter what.  I will allow myself a healthy amount of time to mourn my old "normal". I will ask for help when I need it. I will not give up. I will attempt to get other aspects of my life back to the state they were in during the months before surgery. I will not intentionally shut people out. I will be brave enough to be somebody's role model. How's that for commitment for you?

Humor, Medicine, Running, and SeaWorld

When I entered the family room, I nodded my head and raised my hand with anticipation of praise as I announced, "Thank you, thank you! I trimmed my own toenails." My dad smiled wide with pride and told me to get a sticker for my sticker book. Being an adult is hard.

In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing?  When did a biological medicine being infused into my vein become the best choice?  According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health.  I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off.  Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.

My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.

My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!

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.

The MRI

I know this post is super delayed, but I have been busy surviving.

Once I checked in at the imaging place on Friday morning, I had to drink three bottles of barium. It tasted like cold, chalky fake-grape liquid. Thankfully, it didn't make me gag and I was able to finish each bottle in the time limit I was given, 15 minutes for each bottle. By the time I was on my third bottle there were about 15 other people in the waiting room and I was the only one that had to drink the barium.

The nice MRI Tech, Lisa, called me back. On our walk to the room she said this is the most complicated MRI. She asked if I had anything metal on and I didn't, so I was able to wear my clothes. When we got to the room, she asked me to climb onto the table. She then had me lay down and slide to a certain point on the table. Lisa strapped some kind of foam thing with holes in it that was attached to the table over my abdomen. She tried for an IV in my right arm, but my vein collapsed. Thankfully, it didn't hurt or bruise. She was able to get the IV going in my left arm. Finally, she injected something that slowed my bowels down for 30 minutes. She let me know this injection is the reason we have to work fast through the breath holds and get started quickly. She gave me a "help-ball" to hold onto to squeeze if I needed anything. She left the room and my table began to slide into the MRI tube. Once in the tube I got a sudden urge to pee, so I squeezed the help-ball to tell Lisa. She was nice and came rushing in to unstrap me from the table, but told me to run and hurry because we are on a time crunch.  I peed so much! Oh all the while I'm holding my IV up with one arm. How did all that liquid get inside me? I awkwardly washed my one hand and I went running back to the MRI room where Lisa quickly strapped me back in. Although I did peek a few times I was more comfortable keeping my eyes closed. The whole MRI was a series of breath holds. I would hear Lisa in my head phones, "Take a deep breath and hold your breath." Then a bunch of racket would go on for 30 seconds and I would hear Lisa say, "Breathe."

Toward the end with only three breath holds left I squeezed the help ball again because I really, really had to pee... again. Lisa told me through the head phones that we were almost done and there wasn't any time to let me out to pee. I wasn't even embarrassed when I peed myself a little during the next breath hold. I squeezed the help ball to tell Lisa and she told me it was okay. I mean it was kind of her fault because she didn't let me out after I warned her. After the MRI was over, she quickly came in the room to unstrap me from the table and to take out my IV. Lisa hinted that I might have some bladder issues going on. As soon as she said I was free to go I rushed to the bathroom. I peed and peed and just when I thought I was still peeing I realized I was also shitting very liquid diarrhea that sounded like peeing.

It's been a week since the MRI and I feel like I am still recovering from the MRI. This weekend, I'll blog about the after effects of that damn barium that I had to drink and the MRI results. You know the results aren't good when the doctor personally calls you to discuss them.