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.

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...

Another New Chapter Begins

On Tuesday, May 3rd I will get my first Remicade infusion. I've spoken with three different patients or someone related to the patient with Crohn's disease that have taken Remicade, so I pretty much know what to expect. One patient was on Remicade for 5 years, one was on Remicade for 7 years, and one was only on Remicade for 3 weeks.  Clearly, everyone's body takes a different period of time before building antibodies and rejecting the medication.  At the very least, my wish is that Remicade will work for a minimum of eight months so that I can get through the NYC Marathon with very few issues. I'm not nervous, I'm just curious to see what kind of results and/or side effects I'll experience while on Remicade. I also had a great follow-up appointment with my colorectal on Friday. She cleared me to start running again. According to the surgery report I have "significant perianal Crohn's disease..." Usually the scale is moderate to severe, so I'm not sure where "significant" is located on the scale. 

I'm seriously considering joining the running group MarathonFest. In fact, I plan to attend an information session this Saturday to learn more about the program to make sure it will fit my training needs. I've even convinced a running friend to come to the info session with me to see if we will be interested in the same pace group within MarathonFest. If we decide to sign up, group runs start the beginning of June. Since I'm training for the NYC Marathon, the first run on the schedule is a 10 miler. Even though I'm a little intimidated by that, I already had a 10 miler scheduled that same weekend anyway on the schedule I made for myself. I'm going to challenge myself in the month of May to work on maintaining speed as I increase mileage so that I'll be able to get into the pace group I want, 11:30 - 12:45, which would give me between a 5:10 - 5:30 marathon time. I know I can maintain that pace for 4 miles, but I'll have to work hard to be able to maintain that pace for 10 miles. Oh, by the way, if I can maintain that pace on race day, I will PR!!! I think I owe it to myself to get a good support system that will encourage me along this journey. Plus, I'm hoping to meet other local runners that will be going to the NYC Marathon.  At least I have a month to improve my time.

Insurance and Medical Bills

Have I told you lately that I strongly dislike adult responsibilities? My new insurance plan year started over on April 1st. That means I had no money toward my deductible before my surgery. I'm looking at a $4,550 bill, which covers the anesthesia fee, facility fee, and the doctor fee. It's so frustrating to work hard to save money only to blow it on health care shit.  I could travel the world or move out of my parents house (opportunity costs), but things like this make me apprehensive to spend money. The surgery was minor in the realm of Crohn's disease. Imagine if it was seriously a major surgery. Folks my age spend money on weddings, children, spouses, relationships, happiness, and independence while I spend my chunk on wellness. It hurts my financial heart to spend money for Crohn's crap.

I did manage to get refunded for my MRI, so I'm going to try to work my magic to hopefully at least get partially refunded for the surgery.

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.

Thanks, Universe, for Your Impeccable Timing

I ran the IOA Corporate 5K today with Wharton-Smith. Most of the employees got to our tent area pretty early so that we could find parking. It was great running into friends and meeting other employees. I got to talking to one of the guys from work. I've never had the friendly back and forth banter with a stranger like I had with this guy.  He told me a short story about his name and I told him a shorter story about my name. He made a funny comment about something and I said, "Whatever floats your swan boat." You should have seen him laugh. (We were at Lake Eola, so the swan boat comment wasn't quite as cheesy as it sounds... or maybe it was. haha)  This banter went on for a while until I said I was going to make my way to the start line and he followed me. As the race started he shrieked with excitement and I joined in with a high pitched "WHOO!" In that moment, his gaze was captivating.  I lost the witty co-worker in the crowd of 20K people once the race started. It's hard to explain. His excitement for the race was contagious.  It was innocent and fun. However, afterward I thought: The universe's impeccable timing decided a week before I get ass surgery is the time to meet a guy. STUPID!

I ran a decent 5K considering the week I've had. I finished in 34.12 and my company gave all of their employees that finished a Fitbit. I wish I felt better to stick around for the after party, but the antibiotics I'm taking had me feeling nauseous. After getting my Fitbit, I went back to the finish line for a little while before leaving. Finish lines are so inspiring!

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.