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.
