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.

2017 Wine and Dine Weekend

I joined three other running divas for a weekend at Disney's Wine and Dine 10k and half marathon (19.3 miles). We met at Epcot around 4AM on Saturday to take a bus to the Magic Kingdom parking lot for the start of the 10K. Badass Doreen made us coordinating costumes for each race. For the 10k, we represented different countries in Epcot (America, Germany, Italy, and Mexico). The 6.2 miles flew by as we chatted, told stories about being drunk, enjoyed the on-course entertainment, and posed for pictures!

After the 10k, we went straight to Animal Kingdom to explore Pandora - The World of Avatar! The Avatar Flight of Passage ride was out of this world! It felt like I was actually riding a Banshee! The effects were super cool. It's like as a futuristic version of Soarin' only you're on a Banshee in Pandora. We rode other rides and took advantage of photo-ops with characters. By 4:45PM we went to get our cars at Epcot before checking into the hotel.

The shower at the hotel was amazing! I started a pillow fight and jumped on all three beds (its my hotel tradition). Two of the divas went on a two hour adventure to pick-up dinner. I took a nap while they were on their adventure. Once they returned, we ate dinner and had a funny conversation about their dinner adventure among other topics that exhausted runners find amusing(basically everything was funny at this point). After dinner, we went to bed.

On Sunday, we caught the bus from our hotel at 4AM to the Magic Kingdom parking lot for the start of the half marathon.  Our costume theme was Beauty and the Beast (Beast, Belle, Gaston, and Lumiere). The fellow runners and volunteers loved our ensemble! I video called my sister, Kim, and we sang "Happy Birthday" to her. I also video called Taylor, which was fun even though I woke her up (sorry, Taylor). I got into character as Gaston and boasted about my charm, beauty, and muscles throughout the race. I was arrogant and narcissistic!  Whenever anyone cheered, I acted as if they only came to the race to cheer me on.  It was a blast! We focused on having fun and stopped for photos along the course. Another running diva was handing out cold towels at the finish line, so we found her and took a selfie together! After her volunteer shift, we all went to lunch.

Most of us took a nap after lunch to rest up for the after party at Epcot Sunday night. We washed our outfits so that we could wear them to the after party. The running divas even made doing laundry fun! Cindy and I explored the hotel. We played ping-pong, went down slides, enjoyed a bedtime story, and learned how to draw Nemo. The after party started at 8PM and ended at 1AM. We entered Epcot around 8:30pm and we left around 1:15PM. We rode rides, ate and drank at the food and wine festival vendors, and took advantage of more photo-ops with characters. In one of the lines, a guy was excited to see Belle (Cindy), until he saw Gaston (me) and then he wanted nothing to do with Belle. He asked me if we could take a picture together and inquired if I could flex for the photo. He handed Belle his phone and before Belle took our picture, he felt my muscle. I told him it was real! lol After taking our picture, Belle proceeded to take a selfie of her and the Beast. It was absolutely hilarious!

By the time we got back to the hotel early Monday morning, it was almost 2AM. Despite not feeling my best, I kept up with the divas all weekend! I experienced stomach pain this weekend. I gave vague answers when I was asked how I was feeling. My plan was not to acknowledge the pain. The pain wasn't constant. However, when it hit me, it took effort not to hunch over, moan from the torment, and wrap my arms around my belly until it went away. Speaking of pain, the bottom of my left foot also hurt. Was it really hurting though, or was it ghost pain?  Whether real or not, pain probably slowed me down a little, but it didn't stop me (story of my life). this weekend was the break from reality I needed! I laughed so much that my face cheeks hurt, too!

Is Remicade Working?

I've had time to grieve the loss of my good health.  It makes me unhappy and I've thrown pity parties for myself. It also confuses me because I don't feel as sick as I'm being told that I am. I still feel significantly better than I did prior to starting Remicade on May 3, 2016.

Am I going to stay on Remicade? I'm going to be getting the stool test and lab work done that I mentioned previously because my doctors don't believe that Remicade is working.  However, Remicade absolutely changed my life by giving me my life back. Even though I still get tired and take naps, I'm not sleeping my life away. My memory isn't perfect and sometimes I'm still forgetful. The brain fog has cleared a lot though. I haven't had much pain while on Remicade that compares to the level of pain I dealt with consistently beforehand.  My bowel movements are incredibly beautiful and picture perfect, for me. I don't feel like I'm going to die from shitting my brains out on the toilet. Sure, I've had a few rough days and weeks here and there, but I am remarkably healthier than I was in my pre-Remicade days. My primary symptoms are feces and gas passing through my urethra as well as fatigue.

My gastro has a patient portal app to communicate with him and my nurse directly. I inquired when I should make my follow-up appointment with him and whether or not treating the fistula with medicine is an alternative to surgery. In his response, he doesn't believe that medical treatment will fix my current problem with the fistula and he believes that I will need surgical correction. I'm extremely skeptical that medicine can fix this, too. I am also getting intel that other gastroenterologists may believe otherwise. I'm in the process of making an appointment with a different gastro to get a second opinion.

I don't yet agree with the idea of dismissing Remicade. In general, I'm afraid of switching medications. It took me far too long to ditch Cimzia when it wasn't benefiting me at all. As medicine goes, nothing is guaranteed. I could switch meds for the chance it could "fix" the fistula. It may or may not work and I can accept that. My concern is that if I change meds, there is a possibility that I will not feel as well as I'm feeling right now and that is more difficult to accept. The switch could leave me tired with brain fog, in wicked pain, and feeling like I'm going to die on the toilet with shitty bowel movements. I owe it to myself to get a second opinion. I'm willing to listen to a doctor with an opinion that medical treatment could fix the fistula.

The report from my MRI on November 13, 2015 stated that a "fistula [is] suspected". I looked at the MRI images to try to compare them to my most recent MRI, but I have no idea what I'm looking at. It seems possible that it could be the same fistula I'm having issues with now. In that case, Remicade is working, it's just not working to fix the fistula. On the other hand, the fistula I have now could be different than the one mentioned before. In that case, perhaps Remicade isn't working. I know what I think, but I'm not a medical expert. I'll likely be making a tough medical decision in the coming months and I do not feel qualified.

A Chronic Diagnosis

This post is about chronic conditions from my perspective. I know one person who was recently diagnosed with a chronic condition and another person who may soon be diagnosed with a chronic condition, so this topic seems really relevant to me. (One of them might read this, the other one will not read this unless I copy and paste this into an e-mail.) As you probably know I've been dealing with a chronic condition since I was 15 years old. Now, I understand I have a different condition from these two people and they have a different condition from each other; however, I think it's important to recognize possible similarities to be better equipped to support one another. 

I remember the scariest thing I learned was the fact that there is no cure. I'm not trying to scare you, I'm just trying to be real to let others know about this aspect of a chronic diagnosis. There isn't a magical pill to fix this. Surgery will not make this permanently go away. Let that sink in for a second.  I recently filled out FMLA paperwork and my condition was described by my healthcare professional as "lifelong".  The prospect of having to manage this for a lifetime can be intimidating.

I want to reassure you that this diagnosis was not your fault. Even though the world wants you to keep your shit together, it's okay to fall apart sometimes. Cry, scream, curse if you must because it's far better to let it out than to hold it inside. You are strong regardless of the tears staining your cheeks. You may be pressured to hide the bad and ugly aspects. I encourage you to seek a family member, a friend, or even a counselor you can talk to without being judged and without being forced to hide what you're truly feeling. I think others mean well when they advise us to be positive. Would they really be positive in your shoes though? I give you permission to air out your negative feelings. In my experience, if suppressed, negative feelings can fester into depression even if you're faking positivity. You will encounter folks that believe dietary changes will be the solution to your problem, but I want to warn you not to get your hopes up.  My ex-boyfriend's sister's goldfish had this same condition and cured it by XYZ. I'm saying be cautious. Ugly cry, write about it, and tell your story because heroes fight different battles. You're a hero and this is your battle! Don't give up, FIGHT!

"Been in Pain Like Me" - Halsey

The last few weeks have been the worst I've felt health wise since starting Remicade. First constipation, and then stomach pain. Wednesday was the most wicked stomach pain I've had in recent memory. It was on and off throughout the day. I felt the pain hit me and then briefly subside only to return with what seemed like a stronger punch to the gut.  At times, I had to remind myself to breathe. I know Kim could tell I was in discomfort at the Halsey concert, but I tried not to let it ruin the experience. It was kind of appropriate, really, being able to scream the lyrics with Halsey. Those same lyrics that helped me through other hard days like Wednesday.  Halsey opened the show with her song 'Gasoline', so the first two lines couldn't have been more fitting: "Are you insane like me / Been in pain like me".

I'm definitely not a tough critic. I thought Halsey put on one hell of a great show, but it wasn't just her that made the show awesome. The arena was nearly sold out. The fans knew every fucking word to every fucking song. We, the fans, energized the arena by singing along with Halsey loud and proud. I've been to quite a few concerts, so believe me when I say that I've never felt the power of an audience like this before. I loved it when Halsey let the audience take the lead to a chorus while she took it all in with a smile and proceeded to sing back up vocals to us. She lived up to her badass image. She threw the word "fuck" in whenever she felt like it, which made the crowd scream in approval. She also used her powerful voice to create new and exciting riffs. After one song, she got a little choked up on raw emotion as she admitted that she had never played to a crowd this big before. She's a relatively new artist, but she didn't let any inexperience show. She owned the stage!  It was a great escape from reality.

An Exciting Crack-Patch Adventure

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

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

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

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

P.S. I completely lost my voice afterwards.

Fake It Until You Make It

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

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

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

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

Crohn's Sucks

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

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

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

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

Stressed Out and Unable to Run

I was doing some research and I found an article on Healthline that stated, "...abscesses occur in about one-fourth of people with Crohn's disease. Abscesses often need to be drained, or surgery may sometimes be suggested." Usually, I avoid doing research like this because the results stress me out. I find myself to be in the one quarter of patients with Crohn's disease that has had an abscess occur. Those aren't good odds.  It feels like I definitely drew the short end of the stick. 

According to CCFA "...up to 75% of people with Crohn's disease will eventually require surgery." I know surgery is a real possibility, but it doesn't change the fact that I'm in denial about that possibility. It freaks me out that an abscess may lead to needing surgery.


I haven't ran since my awesome three mile run last Saturday. The pain from the abscess has had me sidelined.  I know this won't likely be my only roadblock on my journey to the NYC Marathon finish line, so I'm taking it in stride. I listened to my body earlier this week and rested rather than pushing through the pain and going for a run. I'm listening to my Doctors so that I can get better as soon as possible. My motivation is still through the roof! Mentally, I'm feeling stronger than ever, so the abscess and antibiotics are not getting me down. Surprisingly, I feel postitive and I'm determined to get back on track once I feel better.

The Unthinkable Happened

I had been feeling great for a while and it gave me confidence to start announcing how well I was doing... and then Tuesday happened. I started feeling pain between my down below cheeks. By the time I got home and mustered up the courage to grab a mirror to help me see what was going on, I had an unmistakable abscess. I felt more frustrated than concerned because I don't have time to be dealing with this shit. I want to be healthy to run. I want to be healthy to put my best foot forward at work. Hell, I just want to be healthy so that I can live my life pain free.

I tried to get my gastro or colorectal doctors to prescribe me antibiotics, but they guided me to make an appointment with my gastro first. On Wednesday, I knew I had to make an appointment quickly before my absscess got any worse. That meant I also had to request off of work less than two full weeks into my new position. Requesting off of work for health reasons stresses me out because it's often on short notice. I never wanted to have the difficult conversation with my employer describing my condition, Crohn's disease. It wasn't a possibility. I wouldn't even consider it.  I should write another post describing my motives behind my decision not to disclose my health issues with co-workers and supervisors.

Anyway, the unthinkable happened on Wednesday when I requested off for my doctor's appointment today. I told my supervisor that I needed to take some personal time and she was easy going about it. I apologized for the short notice and mentioned that if she needs to know more info, I would tell her. So, being a talkative gal she chimed right in and said, "Well, now you've peaked my interest. What more is there to know?" I pretty much wanted to crawl into hole and swallow my tongue. I closed her office door and proceeded to tell her I have Crohn's disease. I explained what Crohn's is and then she asked a few personal questions, but it was too late to shut up. She was understanding and supportive. The most impressive thing though was that I didn't cry at all during the conversation. I don't know why I usually get emotional when I have to talk about it, but not this time. It was like an out of body experience. When I walked out of her office, I felt like a huge weight had been lifted. Even today, she asked me more questions about it. 

Bring on the antibiotics: Flagyl and Cipro! I'll be feeling like shit for the next ten to fourteen days just so that I can feel better. I will likely poop myself before it's over!!!

Mystery Pain

After I got home from work on Friday, I went to the bathroom to take a crap like usual. I would consider it a fairly decent bowel movement, but for some reason it left me in so much pain that I had trouble standing up from the toilet. The pain was coming from inside my rectum and it felt almost like I had a sharp edged turd begging to be let out. I hobbled my way out of the bathroom and into the family room where my sister, Kelly, sat. She knew by the sound of my footsteps that something was wrong before I even entered the room. Once she took a look at me and saw how much pain I was in, her first response was, "Do we need to get you to the hospital?" Of course, I waived off the suggestion. Kelly helped me to my bed, and then brought me some water and pain meds.

Inside my butt was in extreme discomfort and it was so bad that I thought I felt slight agony towards my vagina, too. Staying still in bed seemed to take the edge off a bit. I was at a loss of what was happening and Kelly simply said, "It's Crohn's." She was right. It was fucking Crohn's disease. The pain finally subsided about two hours later. I am so glad it happened at home and not while I was at work. Episodes like this scare me even though I act as if it doesn't phase me. It makes me question my quest for independence and my ability to fully take care of myself in the future. 75 % of Crohn's patients will require surgery.  With my disease history it's likely I'll be part of that 75% one day, but not today.

I woke up Saturday morning with no signs of the pain I experienced the night before, so I laced up and went for an outstanding two mile run at a 10 minute and 48 second pace per mile! Already attaining that pace only two weeks into training has me pumped!

My Birthday Wish

Update: I finally got Cimzia approved through my insurance... again! Go me!!!

"How are you?" When that question is directed at me, it has got to be the most confusing question that exists in the English language. Family, friends, doctors, nurses, counselors, and co-workers alike inquire about my well being. All at different levels, of course.  Nonetheless, it's up to me to figure out how I am, which is tricky.

How am I? Would "I don't know" be an acceptable answer without leading to more inquisitive questioning?  How am I compared to what exactly? My "normal" seems to constantly be fluctuating. Most days, I'm not sure if my body is telling me the truth or if I am perhaps misinterpreting it all together. I don't trust my body. How can I? The bloody thing attacks itself. Hell, I was so used to constant pain in my stomach for a while that when I burned my hand pulling something out the oven a few weeks ago it didn't even hurt. It felt like a light pinch that went away quickly, but the blistering skin on my palm told another story. Burning your hand should hurt, right?  I just figured the pain the burn caused must have been minimal compared to the other pain I had been experiencing, so my body didn't have a big reaction to it.

How am I? In this very moment, I'm convinced that I'm doing better. What exactly am I doing better than? I think I'm doing better than I was doing over the past three months or so because I have more energy, my bowels have been somewhat okay (there's always room for improvement, but isn't that case with most things in life?), I haven't felt pain in about two weeks, and I actually want to hang out with people. I even went for a run this week and it was beyond amazing. Sure, I'm totally out of shape and I was breathing heavy, but I didn't struggle to breath like I did during my last attempts that made me swear off running for a while. Last month I was certain Cimzia stopped working, but now I'm unsure what to think. I'm supposed to be getting lab work done in February that will tell me how I really am.

How am I? I'm pretty sure I'm still anemic because I stopped taking iron pills. I can't wait for my dr. to lecture me about that. I just couldn't handle being constipated all the time. I'm pretty sure my stricture is still super tight even though I'm hopeful my appointment with my colorectal on February 12th goes better than the last time I saw her. It's to the point where I'm actually wishing the scope for the sigmoidoscopy will fit past my stricture so that we can take a look at the disease on the screen. In order for that to happen, my doctor has to be able to get her finger up my ass, which was an agonizing problem last time even with lube.  Yeah, so that's my birthday wish... being able to get fingered in the ass. Maybe I need to find a special someone that would finger my ass regularly between visits with my doctor to keep my stricture loose. Doesn't that sound like a good blurb to put on a dating website? I would do it myself, but giving myself enemas is nearly impossible as it is. It's traumatizing and I'd much rather someone else torture me than me having to do the horrific thing myself.  I've always said if someone likes it in the ass, that's a sure fire way to tell they don't have Crohn's disease.

Oh, by the way, my sisters say that I must be feeling better because my humor is coming back.

I'm a Prisoner

I like to write and I like to rhyme. Especially, when I'm going through hard times. It helps me cope. Normally, I wouldn't post something like this, but I think this can help others understand what I've been through in the past week.  I titled it: I'm a Prisoner.

My body is my antagonist. It attacks, it fights, and it causes pain. My body is always full of shit. It’s an ass, it lies; it’s a ball and chain. I’m a prisoner; stay over there and love me. I’m a patient; come over here and hug me. I’m not myself; don’t hate me. I am myself; please love me. I’m lying here crying on the bathroom floor with lots of pain I’m trying to ignore. I’m fed up with being fucked up. When it comes to health, I don’t have much luck.

After the MRI...

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

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

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

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

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

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

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

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.

Something's Gotta Give

Last Wednesday, I was overcome with nasty fatigue. I thought maybe it was because I used too many spoons at a pub crawl with work on Tuesday night. However, the fatigue has stuck around like an annoying zit that isn't welcome. Times like these make me glad that I'm not responsible for anyone except myself. I don't even feel like taking care of myself because it feels like a lot of work.

If I'm being honest about it, I probably noticed becoming more easily fatigued a month or so ago. Then I started running a couple of weeks ago.  It's hard. I'm slow as fuck. I find myself gasping for air and my legs screaming at me to stop... to which I tell them to shut up. After a one or two mile run, I feel like I've ran a marathon. I can say that because I know how that feels. I'm exhausted. It doesn't feel right. I totally understand that getting back into shape is hard, but I don't think it's supposed to be this difficult. I'm supposed to be athletic for crying out loud.  I have such little energy that taking a shower tires me out.

When people ask how I am, I tell them I'm doing great. For the most part it's true and I want it to be true, but it's not completely true. Fatigue is part of the invisible side of Crohn's.  I look normal and healthy, but really I'm struggling with energy.  Can't someone pay me to just sleep and poop?

I finished a 5k on Saturday and it was ugly... 40 minutes of ugliness. Typically, I would say 5k's are easy, but not anymore. 5k's deserve more respect than I previously gave them. I woke up, ran and mostly walked the 5k, went home, took a shower, and then slept until dinner. I ate dinner and then went back to bed. From Friday at 7:30pm until Sunday at 7:30pm I slept over 30 hours. The crazy thing is that I'm still tired.

Why am I so tired? Is this just typical for being out of shape? Heck, I've ran a half marathon without training before and it wasn't this hard. The last part of last week I went to work and then came home, ate dinner, took a shower, and went to bed just to do it all over again the next morning. Something's gotta give... I want to feel strong again. I want to feel like a runner again. I want the slight pain in my belly after a bowel movement to go away, so I can stop ignoring it. Ahh, is that pain I feel... no, I don't think so... you're just a wimp. I don't feel any pain. No, really though...was it pain? Maybe I'm just being paranoid about another flare looming.

I Pooped My Brains Out

I'll post about the fun girls weekend next time.

This post will be about fucking Crohn's disease.  I was supposed to do my Cimzia injections on Thursday, the day I left town. I decided to post-pone the injections by 3-4 days because they make my belly really sore and the injection spots tend to get puffy and sometimes bruised. I didn't really want a swollen tummy at the beach.

I knew going into the weekend that my energy levels weren't the best, but I thought with afternoon naps I would be able to keep up with the weekend. I did okay until Saturday afternoon. My two hour nap didn't help at all. I still felt really fatigued and tired. I had the chills. Maybe it was the sun and water... maybe it was the alcohol the night before... maybe it was because I post-poned my injections. Plus, I had gas cramps. I'm glad I sucked it up and went bowling and sang karaoke though. I got up a few times in the middle of the night to poop (it was diarrhea). I was as quiet as I could be, but I felt bad because I didn't want to wake anyone up with my potty issues. I tossed and turned and accidentally woke Taylor up a few times. I even woke up sweating at one point, which is strange because I was freezing most of the night.

Thankfully, I woke up Sunday morning with enough energy to get me through the beach and car ride home.  I took a three hour nap when I got home. After the nap, I was feeling way better until I ate dinner. After dinner, my stomach pain had me doubled over and I was running to the bathroom once or twice and hour.

Side note: I'm living with my family. My mom and dad hear me struggling to make my lunch for the next day in the kitchen. I'm moaning in pain. At one point I was on the floor. My mom got up to see what was going on, I gasped in pain when I told her I was trying to make lunch, and then she just said, "Oh, I used to feel like that after I ate Tijuana." (I hate when healthy people think that they have felt what I feel.) She then went back to the couch. I can't ask her to help make my lunch, but she didn't even offer to help and that pissed me off... which is weird because I hate when I need help. (She gets weird when I hang out with Taylor. Even though those two claim to be liking each other these days.) Don't get me wrong I know they care when it matters, but sometimes I feel like when I don't feel well it's just so normal for them that they don't think twice. They are constantly telling me that I can't live on my own because then I'll have no one to take care of me and I'm like it won't be much different than it is now. The only difference will be that no one will see me in pain.

I didn't really get much sleep Sunday night. Between 9pm and 6am I pooped at least 15 times. I pretty much pooped my brains out. How could that much shit be inside me? The last time I pooped that much was in Texas. (Mom has the nerve to tell me to clean the toilet. I know it needs to be cleaned and when I feel better, I'll clean it. Damn you woman,) I'm just glad this time I had at least some control over my bowels. Somewhere along the way the pain went away, but my stomach was sore from pooping so much. If I didn't have my new job, I would have called in sick. I was so tired. I put on a good face and made it through work with way more bathroom breaks than normal. When I got home on Monday, I did my injections, ate dinner, and then went to bed. Thank God, I only woke up 6 times between 7:30pm and 6:30am to poop. I slept much better.

Today, I feel way better than Sunday and Monday; however, I still don't feel as well as I did on Friday. My bowels are still calming down and I'm hoping it's under control before I start losing weight. I've already lost three pounds, but I think it's just because I'm dehydrated. I'll clean the bathroom tomorrow.

P.S. I got an amazing compliment from my supervisor today about how well I'm doing. It almost made me cry. Damn you, feelings.

Moving The Scale in the Right Direction

I think today is the first day since Thursday that I actually ate two meals: lunch and dinner. I weighed in tonight at 143, so I'm moving the scale in the right direction. I'm still experiencing occasional stabbing pain throughout the day. Somehow I managed to survive my daily routine of work and school yesterday and today. I've been taking naps in my car during my short break between work and school. Exhaustion has overcome me because I haven't been sleeping very well due to pain waking me up multiple times in the middle of the night. The pain is a little higher than my belly button, which leads me to conclude that it's my small bowel giving me issues. The weird thing is that my bowel movements have been nicely formed. They seem way too beautiful for the way I'm feeling.

I know I should be eating more regularly, but I would rather not eat and be in less pain and be able to trust my bowels at work and school than eat and shit myself or be in the bathroom constantly. I also know I could be taking the pain pills I have, but I'm not. The pain pills make me drowsy and cause constipation. I have to be alert enough to drive, work, and learn at school. I could take them at night, but in my experience the drowsiness doesn't wear off by morning. Some folks have advised me to make an appointment with my doctor. I haven't and I most likely won't. Quite honestly, the doctor is limited on what to do. He could prescribe me pain meds. I won't take them because I have a life to live. He could order me to have a colonoscopy. Yeah, it's probably time for one of those dreadful things again since it's been two years, but that won't tell him anything we don't already know: I have active disease in my intestines. He could prescribe me the steroid Prednisone. No thanks, I'd rather deal with this until it passes. Prednisone is EVIL! I feel like I lose who I am while taking it.  Some people don't understand my reasoning and conclude that since I won't take action that my current state of suffering is my fault. It must be nice to believe that doctors can make everything better. Ignorance is bliss, right?

Down 9 lbs In a Few Days

I've spent all weekend recovering from the debilitating pain and frequent BMs I encountered Thursday night and Friday. It's 6:30pm on Sunday and I've slept for almost 29 hours  since Friday afternoon. This morning I finally felt well enough to eat. Surprisingly, I haven't regretted that decision yet. I just weighed myself and I'm down to 141.5 lbs. That means I've lost about 9 lbs. in the last few days. It really is scary how fast I can lose weight. It's a good reminder of why I need to try to maintain the 150 threshold though. The pain has stopped, so I'm hopeful things are turning around even if the pounds are still dripping off me. I'm just really sore, weak, and super cautious about what I'm eating even though I have no idea what triggered this in the first place.

Thankfully, I had nothing due for school this week. I have a group project in my portfolio analysis class, but we won't get the details on the project until this Wednesday, so there wasn't anything we could do with that yet. I have an open homework assignment for my supply chain management class, but it's not due until the 23rd, so that was fine to wait. I did review a few chapters for my real estate final though.

I didn't get my long run in this weekend. I wanted to log an eight mile run, but my body wasn't up for it. I could barely stand straight up these past few days. My belly is really sore. I'm hopeful that I'll be able to log eight during the week if I continue to feel better. I have built a solid base, so if I miss a few training runs I should just be able to lower my intervals and still be in good shape to finish my upcoming races.

Six Hour Nap

Immediately after dinner on Thursday night, I got a sharp, stabbing pain in my stomach. I was hopeful that I'd be able to poop the pain away. However, none of the nine bowel movements I had during the twelve hours following dinner settled the pain. Pain and bathroom trips interrupted my sleep, but I still went to work Friday morning. It was obvious I was suffering. At work, we have a project we have to finish early next week, so I wanted to complete a few stacks of files on my desk before leaving early to deal with the pain that was continuing to torment me. I went home at lunchtime and dealt with the pain by taking a six hour nap.

By the time I woke up, it was dinner time. I ate some soup and that was the first thing  I'd eaten all day. The soup triggered my bowels again. In two days, I've lost about 6 lbs. I'm down to 144, which is on the opposite side of 150 than I want to be at. I'm sure most of it is water weight because I know I'm dehydrated. Today, I'm sore and I feel okay, but I haven't eaten anything yet.