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. 

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.

I'm Most Thankful for My Health

This is my cliché post about what I'm thankful for. I could write a list, but I'm not going to. Instead, I'm going to write about the thing I am most grateful for this Thanksgiving even though it could be considered selfish.

I am most thankful for my health. I've been feeling the best I've felt in over a decade. I have a new benchmark for what "normal" feels like and it is mountains higher than it was this time last year. Within the past year, I have experienced the ups and downs on this rollercoaster I call my health. It really feels like I have my life back! NO PAIN! NO BAD BOWL MOVEMENTS! NO FATIGUE! NO DEPRESSION! NO BULLSHIT!

Now that I'm energized and healthy, I am branching out of my comfort zone by trying new things and meeting new people. MarathonFest has been one of the best decisions I've made this year and my good health afforded me the opportunity. I absolutely love my running group. Not only are they fun to run with, but they are also great motivators! They make me a better runner, they make me a better person.

I have energy to get to know my co-workers. Chit chatting no longer terrifies and exhausts me.  My lunch hour is no longer used to nap.   In fact, now I love going to lunch with a few co-workers to talk about life and work... and of course, running. It's fun!

One of the new things I'm going to try is a Ragnar Trail Relay. I was introduced to a team of 8 people I don't know by one of my MarathonFest running friends. One of the people on the 8 person team broke his collarbone, so I'm going to take his place in the relay. The relay is in Tampa and it involves camping for two nights and tag teaming three different trails until everyone has ran all three trails for a total of 15 miles. We'll be running at all hours. My tentative relay schedule for the three trails is 11am, 7pm, and 3am.  Typically, camping with Crohn's disease would sound like a horrible idea, but since I'm healthy I decided to go for it! I don't have any camping skills or trail running skills. Even though I know people on different relay teams, I will be camping with the 8 people I don't really know and I'm excited! 

I joined another running club called Ten10. If I wasn't healthy, there's no way I would consider this. They meet every Tuesday at Ten10 Brewery in Winter Park, run a few miles, and then drink beer.  I met most of the people on my relay team there yesterday. I can already tell they know how to have fun! Our team name is Sloth Squad and our tag line is "We'll get there eventually".  I'm looking forward to getting to know my team better. I'll be going again next Tuesday!

As you know I joined a gym to use the showers after my morning runs on Tuesdays and Thursdays. Well, I decided to start doing one class a week. All classes are free with a gym membership, so I might as well get use out of it. My class of choice is Camp Apex, which is an hour long crossfit class. It is intense to say the least. In the the two classes I've taken, I was tired after the warmup. I've been sore for days afterwards, so I know its working something. There's good scenery, too. Most of the guys are hot! My station partner this past Monday saw my marathon shirt, and then told me all about the Chicago Marathon he did a few weeks ago.

Who am I? I'm exactly who I want to be at the moment. I'm healthy and able to do anything I want! I'm a marathon runner that's searching for adventure!  It's a hell of a lot easier being me when I'm healthy!  Count your blessings and don't take a healthy day for granted... I know I'm not taking this season of life for granted. The top of the rollercoaster offers the best view!

I Have My Life Back

Say what? I'm blogging two days in a row! 

I'm not sure if you've noticed that I haven't been talking too much about my health lately. That's because I am doing amazingly well. I have my life back!!!! My days aren't ruined by pain and fatigue. The shitty feeling is gone. I feel like I'm breaking out of the shell that my bad years with Crohn's put me in. I'm socializing and actually enjoying it. I surprisingly want to make new friends. I am the me I love being. While that might not make sense to you, it makes perfect sense to me. I love having energy. I've got a bounce in my step and a grin on my face because I feel excellent. I love when my wit makes people laugh. My mind is clear and sharp without brain fog and it's awesome! Mostly, I love the fact that Crohn's has not been a factor in my day to day activities. I'm less afraid to make plans for the future. Even though I know a crash from this high on life feeling of being healthy would crush me, I am well enough to consider options I was hesitant to seriously consider before. I certainly wouldn't mind being this healthy for the rest of my life.

Confession

I have a confession: I do not remember the last time I felt this well. This could possibly be the best I've felt in over a decade. I have so much energy that I don't know what to do with it. I've had no pain. My bowels are functioning better than I ever thought was possible. At the doctor on Friday, I weighed in at 151 pounds! I feel like a normal person, strong and healthy.  Is this how you people feel all the time? It's wonderful!

My life is amazing at this moment in time. Training for the NYC Marathon is going spectacularly well! I've found a pace group that challenges me just enough to keep me wondering if I can keep up. Since I managed to stay with them for 10.5 miles on Saturday, I'd say I can keep up even if it is out of my comfort zone at times.  My supervisor put in a request for me to get a raise and my employer is paying for me to become CRIS (Construction Risk and Insurance Specialist) certified. It's a total of 6 classes and I just registered for the first class this week. The class is online and I can work at my own pace.

I Pooped!!!!!

Today at work, I pooped! I even pooped again when I got home! Does anyone else get excited about taking a shit? As I flushed I pumped my fists into the air to celebrate before washing my hands. It's frustrating how one week I can be pooping my brains out and the next week I could be willing to give my life just to have a bowel movement. My life often revolves around my bowel habits.  It's kind of sad how much I think about it throughout the day. I know it could be worse, but I also know it could be better. I haven't had any stomach pain lately.

Perhaps the coconut oil pills helped the constipation. However, my money is on the Senokot laxative tablets. Shh, don't tell my doctor... I probably wasn't supposed to take those because she says senna, the active ingredient, can turn my colon black. As if my colon isn't ugly enough let me turn it black. That sounds like a title to a book: The Black Colon.

In other news, on September 1st I will be switching off my parents' insurance plan and onto my own plan through work. Once I do that there's no turning back. Thankfully, it's still with United Health Care, so I'm hoping the switch won't be too difficult regarding continued coverage for Cimzia. I'm not really concerned if I have to find different doctors in network because I'm not in love with my current doctors.  At least I'm not stressing about it. I'll deal with the switch when the time comes. I'm also getting vision, life and my 401k will kick in in October. I'm growing up and it feels good! I'm also looking forward to my 90 day review in October where it's likely I'll be getting a pay bump.

Feeling Well

I woke up feeling surprisingly well today! No pain! That's right, I moved, danced, stretched my arms above my head and breathed deep without any pain. I felt so well that I even smiled at myself in the mirror. Sadly, when I don't feel well my hygiene suffers because I don't have the energy to properly take care of myself, so I do the bare minimum. I took advantage today by showering, shaving and moisturizing. I even did laundry and dishes. My appetite has been noticeably bigger the past few days. I hope that's a sign of even better days to come.

My only issue is that my bowel movements still aren't very pretty.  Yes, BM's can be beautiful. Trust me on this. I can almost guarantee that I would be jealous of how beautifully formed your BM's are.