Apparently, We Need Some Time Apart

My new gastro as well as my new surgeon ordered me to stop Remicade to allow time for the Remicade levels to decrease in my body before surgery. The reason for stopping it is because Remicade weakens my immune system and the doctors said it would slow down the healing process.  I was supposed to have my next Remicade infusion on October 31, 2017.  Even though I won't likely experience a literal withdraw from missing my regularly scheduled dose, I'm freaking out a little.  They have taken away the one thing that helped me have pain free days, formed stool, control of my bottom end pipes, and regular bowel movements. Imagine my concern over the fact that I will not be getting my medicine and my stomach and bowel movements have not gotten back to how they were before my colonoscopy last week. The drug was designed to intentionally weaken my immune system because my immune system is fucked up when left alone. Without Remicade, I'm worried my immune system will fuck up the current state of my health before surgery.

No matter how poorly surgery goes or how many complications I experience due to surgery, I don't think I will regret the decision to have surgery.  How could I allow myself to regret the only solution that was presented to me by multiple doctors? The choice I may regret would be the decision to stop Remicade at my new doctors' request. I could make one phone call tomorrow and go back to my old gastro. His nurse would give me Remicade in heartbeat.  I would like to maintain my current health for four more weeks, which would just about get me to surgery day. I would also like my body not to build antibodies towards Remicade while I'm off the medication.

Remicade, it's not you, it's my doctors. You gave me better health than I experienced in over a decade. Apparently, we need some time apart though. Thank you for the amazing days you gave me! I really hope you'll wait for me until after surgery because I don't want to say goodbye forever. I just have to say goodbye right now.

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.

Remicade

I had my first Remicade infusion on Tuesday, May 3rd, 2016.  My mom drove me to my infusion appointment because she didn't believe I would be well enough to drive afterwards. It was nice to have a chauffeur for the day, but I would have been okay to drive myself. After I signed in at the front desk, I took a seat in the waiting room. It's no surprise that I was the youngest one in the waiting room by at least thirty or forty years. Sally, my nurse, called me back. Sally is the same nurse that helped me figure out insurance and the Remistart program. She asked me a few questions and began searching for a vein to insert the IV. When she found a vein on the first try, I confessed my love to her. Next, she began preparing Remicade to inject into my saline bag. The Remicade dose is based off of how much I weigh. Once I was all hooked up, Sally walked me into her spacious office that has three comfy reclining chairs facing her desk. Two of the three chairs were occupied by other patients getting infusions, so I took the empty one.  Sally offered me water and coffee before sitting at her desk. Throughout the infusion, the other patients didn't talk, so I put on my Beat headphones, closed my eyes, and listened to music. Soon, the patients were done with their infusions and I was the only patient left. Intermittently, Sally got up to check the flow of the infusion. It was rather boring. The IV was a little uncomfortable and I felt a slight burning sensation while the medicine went into my vein. Cimzia also gave a burning sensation while being injected, so I didn't think much of it. It didn't take near as long as expected. My appointment was at 10am and I was done by 11:50am. I think I had a headache before I got the infusion, but after the infusion I had a really bad headache. Overall, it was no big deal...it's just my new normal.

My co-worker's mom used to get headaches and nausea from the Remicade and her nurse started putting something into the saline bag to prevent those side effects. I plan on talking with my nurse if I experience a bad headache again after my infusion on May 17th.

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.

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!

An Update

It hasn't even been a week and I'm already getting antsy. I'm restless mostly because the New York City Marathon is on my mind. Don't get me wrong, I'm thrilled I'll be back pounding my feet against the pavement sooner than originally planned. However, it's still frustrating to wait it out because my hopes are high. I've been on Pinterest looking at a bunch of workout motivation. It inspired me to incorporate some cross training in with my marathon training once I start training again. I'm excited to feel my body get stronger and my mentality get tougher throughout the next few months.

I went to see my gastro yesterday to talk about medication options. It's a little scary knowing that there aren't a lot of effective treatment options available. The two options my doc recommended were to add 6MP to my treatment while continuing with Cimzia or stopping Cimzia and switching to Remicade.

I was on 6MP for years after I was first diagnosed with Crohn's. Now, looking back I wonder if my parents even knew what 6MP is. I certainly didn't know or care at the time. It's actually a chemo therapy drug.  Anti-cancer drugs are pretty common in Crohn's treatment, but I think it's a little harsh. It's really bad for the liver and frequent lab tests need to be done to monitor its affect on the kidneys and liver. There is also a higher risk of lymphoma when taking Cimzia with 6MP than other options. Isn't that ironic? My first treatment strategy was to exhaust all of my options with Cimzia before stopping it. Once you stop a biologic like Cimzia, you can't go back on it because your body will build antibodies against it and reject it.  I just don't think it makes sense to keep moving forward with Cimzia because it hasn't been very effective for a while now. Most of the medication options are frightening, but 6MP is a little scarier than other options in my opinion.

That leaves me with Remicade, which is an infusion I can't administer myself. I'm told this is a more potent treatment for Crohn's and most patients see better results with it than with Cimzia. Remicade is a TNF blocker like Cimzia with similar risks. It's way more expensive than Cimzia, so I'm in the process of figuring out if my insurance will cover it before I can make the switch. Thankfully, I have a nurse advocate helping me figure it all out. I'm surprisingly excited at the possibility of bidding Cimzia farewell.


In other news, Ticketmaster finally released my tickets to Halsey on July 6th at the CFE Arena! I'm super stoked about that.

Thieves Oil

In the spring, I began applying a drop of Thieves oil to the bottom of each foot every morning. After months of my uncle and mom nagging me to use Thieves oil, I finally gave in just so that they would shut up. They claimed it would protect me from getting sick with colds and even the flu. It somehow fights against airborne bacteria. Obviously, I could use some help in that area since I don't really have a properly functioning immune system. However, I was skeptical about the benefits of using Thieves oil on the bottom of my feet. I thought it was just another crazy health claim.

For me, Thieves oil has actually worked in protecting me against colds. Trust me, I'm shocked it's worked so well.  I've been using Thieves oil for about eight months and I've yet to get a cold while using it. The time I did get a cold I had stopped using thieves, but as soon as I started applying it to the bottom of my feet again the cold quickly went away. I didn't get sick when I went to germy NYC.  I've been at work and school when it seems like everyone around me is coughing and sniffling, yet I somehow remain uninfected. I have felt my body fight off nasty colds by sneezing more. It may be foolish, but I now believe in Thieves oil so much that I opted out of getting a flu shot this year. Plus, it makes my feet smell good!

I don't know if Thieves works for everyone, but it works for me. Now a cold is one less thing I have to deal with, which is amazing! I deal with enough health issues so it's nice to be able to focus on other aspects of my health. I used to always be battling some kind of cold. Last year I was so consistently sick that I was never well enough to get a flu shot.

Below is a link about Thieves oil and it's multiple uses. Even though I only use it for #7
http://essentialwellness.tumblr.com/post/13130776527/50-ways-to-use-thieves-essential-oil

Coverage for Cimzia is Denied... Or Is It?

Monday, November 2nd, 2014 my gastro nurse faxed a prior authorization form to my specialty pharmacy for insurance to review.

Friday, November 6th, 2014 my insurance was "unable to approve [my] physician's request for coverage of CIMZIA. The request did not meet the conditions necessary for coverage for the following reason(s)."

"The request for coverage for Cimzia is denied. This decision is based on health plan criteria for Cimzia. This medicine is covered if you meet the following criteria: You have positive clinical response to Cimzia therapy. The information sent in does not show you meet these criteria."

I quoted the above from a letter I received from my insurance. The letter also included a page of information and guidelines about the appeals process.

Sunday, November 9th, 2014, I reached out to a Team Challenge mentor, Tom, for advice on this situation. Tom let me speak to his badass wife, Liz, because she's the one that has handled a few of these situations for their son with Crohn's disease. Before speaking with Liz I felt hopeless and lost because I really didn't know what I should do. Liz advised me to contact insurance first and get a specific answer as to why they decided to deny coverage. Liz also counselled me to inquire about what I can do to regain coverage without having to go through the appeals process. She told me to stand firm and not to take no for an answer. She then instructed me to call her back if my call to insurance doesn't find a solution. By the end of our conversation, Liz had calmed my nerves about the situation. It was nice to know that I have someone on my team with experience coaching me to win this enduring struggle with insurance.

Today, November 10th, 2014, I contacted insurance. It took five minutes convincing the automated robot to let me speak to a human before I actually got a human on the line. The human's name was Craig. The following is paraphrased after Craig confirmed who I was and my insurance plan:

Me: I'm calling to find out why coverge of my Cimzia medication was denied.

Craig: It looks like we won't cover the brand name Cimzia, but we will cover the generic brand Certolizumab Pegol.

Me: Cimzia does not have a generic brand. I have been taking Cimzia for the past two years, which you guys have covered for the past two years. Why the sudden change in coverage?

In the meantime I'm googling "Certolizmab Pegol" to figure out where he is getting this name from because I know for a fact that there is no generic brand of Cimzia and the first hit on Google takes me to http://www.cimzia.com/. I conclude that Certolizmab Pegol is the clinical or scientific name for the medication Cimzia, which my gasto nurse confirms later in the day.

Craig: We have not ever covered Cimzia. We have covered the generic Certolizumab Pegol.

A photo of my Cimzia medication they have been covering for two years. You can see in parenthesis under Cimzia the Certolizumab Pegol name.

Me: Certolizumab Pegol is Cimzia.

Craig: No, we will not cover Cimzia.

At this point you can imagine my confusion.

Me: Okay, so do I get approved for this so called generic?

Craig: Have your doctor send another prior authorization for the generic or have your doctor contact us at an 1-800 #.

Me: So, if my doctor sends you guys a prior authorization for Certolizumab Pegol, it will be approved?

Craig: Yes.

Me: Okay, so you won't approve Cimzia, but you'll approve Certolizumab Pegol, which is the same thing as Cimzia?

Craig: It's the generic brand of Cimzia.

This ended my conversation with Craig, the dumb human voice of the insurance company.


I followed my call with Craig with a call to my gastro nurse, Osmarie. She explained that the prior authorization paper work she got to fill out had check boxes with Humira, Cimzia, or Remicade (these medications do not have a generic form. They are too new and too complex). It just prompted her to check a box, so she checked the Cimzia box. There wasn't even a space on the paperwork for her to write in Certolizumab Pegol, so she called the 1-800 # I gave her. Within the hour she got the confirmation that insurance approved Certolizumab Pegol. Osmarie told me that is just the clinical name for Cimzia and that there is no generic brand for Cimzia.


This whole ordeal has left me dumbfounded. Insurance makes me cry, shake my head, and smile at their stupidity. My medication has been approved! I call it Cimzia. Insurance calls it Certolizumab Pegol. Just don't tell them that Certolizumab Pegol is Cimzia, or they might decide not to cover it. It will be delivered just in time for my scheduled November injections.

12 Days Without Caffeine

I finished my 10 day treatment of the antibiotic Ciprofloxacin yesterday. The patient information advised to avoid caffeine, so today marks my twelfth day without caffeine. I'm not a coffee drinker, so soda was my only nemesis. Honestly, I couldn't say whether I experienced withdrawals or if it was just the effects of the antibiotics that I experienced. I definitely craved soda, but I think it was just a case of wanting what I knew I couldn't have.  Prior to Friday, September 26th, 2014 I drank soda multiple times a week. However, I am going make an effort to continue this no soda kick.