Playing the Field

Even though I am waiting to see what Dr. Second Opinion has to say, I am still taking steps forward to schedule surgery with my current colorectal. I am playing the field, the medical field. My current colorectal confirmed Wednesday, December 6, 2017 as my surgery date for bowel resection. Now, that date is only tentative on my end because I might cancel it depending on how my appointment goes with Dr. Second Opinion.

I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.

• 8/22/17 Barium enema and MR enterography reviewed with patient. The BE did not show evidence of a fistulous tract, but the MR enterography did show evidence of a potential fistulous connection. Given the persistent clinical symptoms of enterovesical fistula and the MR findings, surgical options were discussed. She will discuss the findings with her GI physician and will possibly proceed to a laparoscopic, possible open low anterior resection and repair of colovesical fistula. The risks of surgery including a need for an ostomy which might be permanent were discussed. In addition the concern is that as she has a known anal stricture as well as rectal stricture, that her rectum may be diseased enough that an anastomosis may not be feasible.

When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating.  On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming.  Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:

• On Wednesday, November 29, 2017 at 1:00pm, I have a pre-op appointment with a urologist.
• On Thursday, November 30, 2017 at 9:45am, I have a pre-op appointment with my current colorectal, which may be followed by testing.
• I am awaiting a call to schedule my "tummy marking". I think it's where they tattoo dots on my belly to guide the doctor to the right spot...or maybe it's like a surgical version of connect the dots.
• On Wednesday, December 6, 2017, I have to arrive at 5am for surgery to start at 7:30am.

My Upcoming Appointment at the Cleveland Clinic

Next Sunday, I'll be heading down to south Florida to stay the night before my appointment at the Cleveland Clinic on Monday, October 16th.  Before I received an appointment reminder in the mail from the Cleveland Clinic, I was just going through the motions. This was just another appointment for me to waste time before actually having to pull the trigger and schedule surgery. Yes, I know I already did that tentatively. I wasn't expecting a different/valuable recommendation. I wasn't expecting to like the Cleveland Clinic better than my current colorectal (I'm sure you can read why in a previous post). However, the doctor listed on my appointment reminder is not the same doctor on the referral order my new gastro gave me. Go ahead, click on the links and be sure to read the first sentence under the About Steven Wexner, MD Section.  I now have an appointment with the "Director of the Digestive Disease Center at Cleveland Clinic Florida and Chairman of the Department of Colorectal Surgery"!

I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to.  After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take. 

I Tentatively Set a Date

I finally received the results from the drug level and antibody test. My levels were great and no antibodies were detected, which was a huge relief!  Remicade has changed my life and I'm thrilled the results correlated with how well I've felt since I started taking it.

My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.

Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.

The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end.  As December 6th approaches, I'm sure it will get more difficult to accept.  It's already harder to accept today than it was yesterday, but that is likely because I set a date.

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.