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.

Consequences of a Good Day

Yesterday, I had a great day. I woke up feeling well with energy I haven't experienced in a long time. I went shopping, went to lunch with my mom and dad, did laundry, watched some football with my dad, and I even cleaned my room a little. I washed my sheets, which doesn't happen as often as it should because it takes a lot out of me. I didn't even take a nap yesterday.

I woke up today feeling the consequences of a good day. I woke up sore and tired. I tried to finish cleaning my room, but I had the chills and fell asleep sitting on my couch with my portable heater pointed at me and covered in two blankets. I woke up with a neck cramp and moved to my bed. I've been to the bathroom about 15 times today. Eventually, I woke up for dinner sweating like crazy. Hey, at least I haven't been in any pain today.

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.

Why?

          Why am I unbearably tired? Why do I struggle to wake up? Why do I find it such a chore to do everyday things like shower and get dressed? Why does exerting energy one day take it's toll on me the next couple of days? Why does this have to be my normal? Why do I try hard to look alive and energetic around family and friends?

          Google the Spoon Theory by Christine Miserandino. It does a pretty good job at explaining what it feels like to be me lately.