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.

My Nightmare

"You can't wake up / This is not a dream" - Halsey

My colorectal specialist confirmed that I do indeed have a fistula. According to her, the MRI results showed a lot of inflammation around one of my strictures which made it difficult to pinpoint the exact location of the fistula, but it's around the area I've had a stricture in ever since I can remember. That area just so happens to be located near my bladder.

As she recommended surgery "soon" (within two months) she used a chart and pointed to the diseased, strictured part of my bowel that she wants to remove and replace with tissue from a healthy part of my bowel. She went on to explain that she would stitch up the fistula in the bladder and the stitches would dissolve. I asked, "So, you want to do a resection?"

My colorectal specialist looked me in the eyes, nodded her head, and replied, "Yes."

Before I schedule bowel resection surgery, I am getting a stool test and lab work that my gastro ordered as well as making a follow-up appointment with my gastro. The lab work is going to measure Remicade levels in my system to help us determine if the medicine is being effective. My colorectal specialist advised me to consult with my gastro about medication options. Am I going to stay on Remicade? Are there other medicines out there that could get Crohn's under control and heal the fistula without surgery?  I'll blog about this in another post. 

Now, back to my nightmare. Resection would put me in the hospital for 4-7 days. Recovery would be 4-6 weeks and it could take up to 6-8 weeks to return to "normal activities". My colorectal specialist said she wouldn't know until we are in the operating room whether or not I would require a permanent stoma.  This scares the shit out of me. This is more terrifying than going head first into that fucking MRI machine. If this happens, there will be no turning back. I was kind of expecting it, but that doesn't mean I'm not in denial about it. I've been ugly crying intermittently. Even though my ass is fucked up, I do not want to have to poop in a bag for the rest of my life. I'm not even thirty years old yet.

Questions for Doc and Taylor Eating Salad

I'm supposed to write a list of questions to ask my colorectal specialist on Tuesday. I looked up to find when my previous MRI was. It was November 13, 2015. I looked up an old blog post where I stated the November 13th MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Since I do not remember the conclusion of the "possible fistula" and whether or not we did anything about it, I'm going ask my colorectal specialist if she can pull up those results or look in my file to see what we did to address it.  I have numerous questions based on what the gastro nurse told me. Basically, I want to know what exactly is wrong with me and what options I have to fix it?

Questions regarding current MRI results:

• What are the results of my MRI?
• What do the results mean?
• 
  
• If she gives me the same results as my gastro nurse, who determined that the MRI showed significant inflammatory changes? SimonMed, Gastro, Colorectal?
• Inflammatory changes compared to what? What did the inflammation change from?
• Where did the MRI show inflammation?
• What does "probable fistula to the bladder" mean?
• Can you provide a probability rate?
• 
  
• If she concludes there is indeed a fistula to the bladder, how do we fix it?
• Medication, surgery, or a combination of both?
• Are additional tests required?
• 
  
• If surgery is recommended, can I postpone until the beginning of the year?
• What does surgery entail? 
• How long is recovery?
• What's the probability that surgery will work?
• What's the probability of getting additional fistulas?
• If we manage with medications, how does that interact with Remicade?
• 
  
• What are the risks of having a fistula to the bladder?
• If we can postpone surgery, what's the plan to monitor urinary tract infections?

Questions regarding previous MRI results:

• I had an MRI back on November 13, 2015, and I found personal notes that the results showed a possible fistula.
• Can you look up those results?
• Do you know what we did to address it?
• Was it possibly showing the same fistula that's probable now?

Taylor face timed me while I was writing this post. lol

"Probable Fistula to the Bladder"

A week ago, I had the MRI for "additional views". I fasted all day and drank three more cups of barium. It took them five tries to get an IV hooked up. Ouch! The last of the bruises are still healing. Thankfully, they put me in FEET FIRST on my belly, so my head stayed out of the machine! I was in the machine for about the same amount of time as my MRI earlier that week. They didn't charge me for it though. I got two MRIs for the price of one!

The nurse from my gastro's office called me Tuesday morning to let me know my MRI "showed significant inflammatory changes and probable fistula to the bladder." She didn't go into detail and just confirmed that I had a follow-up appointment with my colorectal specialist to discuss the results. I shared the "results" with some friends and a few asked me what it means. Honestly, I have no idea. Your guess is as good as mine. "Inflammatory changes" compared to what? Did SimonMed send these "results" or did my gastro determine this himself?  If a fistula to the bladder is "probable", I want to know the exact probability. The symptoms lead me to believe the probability is 100% because how else would stool get into my urine.  I spent all that money and endured those tests for them to diagnose me with the same thing I had diagnosed myself with a month and a half ago. The field of medicine blows my mind.

On Tuesday, August 22nd, I have an appointment with my colorectal specialist to discuss the results of the MRI(s). My running friend, Doreen, is going to go with me. I'm really happy she agreed to go with me when I asked her. Doreen is the absolute nicest person I've ever met! She's badass and super smart! I'm hoping with her help, we will ask my doctor the right questions to better enable me to make an educated decision on how I want to move forward.

Side note: Lisa (MRI Tech), Michelle (nurse), Juan (nurse).

After the MRI...

After the MRI on Friday, November 13th, it didn't take long for me to start feeling negative side effects from the three bottles of barium I drank as prep. My stomach turned to knots of pain and I found myself rushing to the bathroom every hour or two. I desperately wanted to sleep, but it seemed just as I cried myself to sleep I would get another urgent urge to go to the bathroom again. The urges felt like I had to pee, and even though I peed every time I went I also pooped black diarrhea every time, too. This went on Friday, Saturday, and even Sunday. I did not rest well. I lost eight pounds. I'm sure I was dehydrated. In the middle of the night, when everyone was in bed, I found myself sleeping on the bathroom floor to make for a shorter trip the next time the urge struck. One night, my dad slept in my bed so that I could sleep in my parents' bed with my mom close to their bathroom. My groans from being in pain woke my mom up a few times in the middle of the night, but she was a trooper. I felt physically and mentally fucked up, yet I'm still convinced the MRI was better than a colonoscopy.

I messaged my doctor to let him know how horribly I had been doing since the MRI and he let me know that it was typical for the barium to worsen symptoms, but that it should only last for a few days. Well, that would have been nice to know before I went into the MRI. It also makes me question the results of the MRI. Did the barium cause for bad or worse results?

I almost called in sick to work, but I hated to waste a sick day. I want to save my sick days for hospital visits if it has to come to that. Thankfully, I started feeling better on Monday. Yes, I was still experiencing pain, but I was experiencing less trips to the bathroom. My doctor called right at 5pm as I was signing off my computer at work, so I answered it even though my supervisor Kim was right in the office next to me. I would have walked into the stair well for privacy, but I didn't want my phone to drop the call. My doc asked about how my visit with my colorectal went, so I told him, "It was too tight to do the sigmoidoscopy, so she just flexed it with her finger and I go back in three months." Geez, I can't imagine what my supervisor is thinking of this conversation. My doc then went on to give me my MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Obviously, this means there is active disease, which makes us question if the medication, Cimzia, is working. My doc gave me two options: bump the dose of Cimzia to every three weeks instead of every four or switch to Humira or Remicade. I decided that I want to be sure Cimzia is not working before I switch to a different biologic, so I chose to bump the dose. I'll get lab work done in a few months to see if my inflammation levels have gone down and that's how we are going to tell if Cimzia is still working or not.

I was crying during my drive home from work, which has been happening more often than I care to admit lately. I had my car read me my messages for the day and Brittany came to my rescue again to turn my day around. Her and her family got me a get well gift, so I called her to thank her and filled her in about the results.  I don't know how she does it, but she should write a book on how to be a friend to someone with a chronic illness because she is an absolute beast at it. She rocks my world when it needs rocking. Thank you, Brittany, for being an angel disguised as my friend. I know we don't talk that much, but I hope you know your heart is amazing and I love you!

I made it to work for the rest of the week, but I have been unfathomably exhausted. I did my Cimzia injections on Thursday, November 19th.  Throughout the week I experienced occasional stomach pain. Mainly after a BM, but sometimes the pain just hit like a Mack Truck. I've been going to the bathroom more often than I'd like, but I've had worse so I'm happy it's not worse. Sleep has been difficult because I'm either waking up to go to the bathroom every few hours or I'm awake because I can't sleep through the pain.

I was supposed to visit Taylor this weekend, but I cancelled on her to stay home and recover from the week I've had. I promise it wasn't to stay home to binge watch House of Cards on Netflix. Thankfully, she understands I'm not always a flake. She's been a great ear for me to vent to. I don't complain verbally, out loud, but she is one person that will listen and I won't feel guilty when I need to get it off my chest. I know I complain on this blog (even though I think I'm just explaining the facts of what I'm going through mostly), but I think that's different. The minute you don't want to read it you can close my page, but mentally it helps me to let it out sometimes.  She encourages me to call her at 3am when I'm in pain and can't sleep. Thank you, Taylor, for always being there to listen about my crazy shit. Thanks for always checking in and sending me funny memes. My love for you runs deeper than the sewers. I love you, Stinkbrain!

I even had to turn down an offer to go to the Gator game. It was the right decision because I feel like the rest I got today did me well. I've only had pain once today and I've only been going to the bathroom about every three to four hours, so I'm super happy I seem to be on the right track.  I have more to say, but I'll blog again tomorrow since this post is already long