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.
Sunday, August 27, 2017
Tuesday, August 22, 2017
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.
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.
Sunday, August 20, 2017
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:
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
Friday, August 18, 2017
"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).
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).
Wednesday, August 9, 2017
Barium Enema and MR Entorography, Oh My!
July 31, 2017 - Barium Enema:
Surprisingly, the prep (clear liquid diet the day before along with two bottles of magnesium citrate and two dulcolax pills) didn't put me in the bathroom that much. In fact, I had some formed stool in the morning before my appointment. It still make my stomach hurt though.
They took an initial x-ray to make sure my bowels were clean enough for my procedure. I had a lot of stool in my bowels, so the tech had to get the PA. Thankfully, the PA also has Crohn's disease and didn't want to make me reschedule and reprep unless it was absolutely necessary. He talked with me to determine why I was there and what we're looking for. He consulted with his supervisor, the practicing physician, and they decided to remix the barium into a thinner consistency to give it a better chance of finding any abnormal pathways.
Typically the tech would insert the enema tip, but because I have a stricture and considered to be a "special" case, the MD wanted to do it (she was in dress clothes, not scrubs, so I don't think she usually has to do barium enemas). Since my bowels weren't empty, they didn't use air like they usually would.
The barium enema was very uncomfortable and it felt like I was going to shit all over them. The barium leaked a little, but the PA assured me that it was nothing to be embarrassed about. They have 90 year old men that shit the table all the time. The whole thing was a traumatizing and felt somewhat like an out-of-body experience.
After the MD signed off on the images and said I was done, the PA (the one with Crohn's) came into the room and let me know he isn't supposed to say anything, but he wanted me to know they didn't see any abnormal pathways. Seriously, I've never felt as well cared for as the team at SimonMed made me feel. While this seems like good news, it does not provide answers to my symptoms.
July 31, 2017 - Gastro Office Appointment:
I got the official results of the barium enema, which did not show any abnormal pathways. How the heck are feces getting into my urinary tract?? The Doc gave me a list of shit I have to get done. More on that later.
August 7, 2007 - MR Entorography (MRI of Small Bowel)
Since the Barium Enema only looks at the large intestine, my gastro ordered an MRI to look at the small intestine to see if maybe that's where the issue is coming from. I had this done a few years ago; however, it was a lot different this time around. I had to drink three 16oz. of barium (1 of 15 minutes) before the exam. The barium was new and improved from last time. It tasted better and was easier to get down than I remember, but it still made me nauseous.
Once the nurse (Juan) called me back to get my IV hooked up as I finished my last glass of barium, he complimented me on finishing the barium and mentioned that most patients can't drink them all. Hell, I didn't want to drink them all, I thought I had to. Had I known I could cheat on drinking all the barium, that would have been tempting.
The last time I had this done, they made me lay on my back on put me in the MRI machine feet first so that my head didn't go in the machine. This time around, they made me lay on my stomach (the radiologist explained that we want the bowels to move as little as possible and it helps to lay on them to minimize movement) and put me in *GASP* HEAD FIRST!!!! It was fucking terrifying!!!
I put in earplugs. They put some kind of temporary gastro paralysis in my IV that lasts for 30-45 minutes to slow the bowels. There was a huge strap the size of my back that hooked on each side of the table to secure me in tightly. The radiologist put the emergency ball in my hand (to squeeze if I need help or freak out) and started moving the table... which made me go head first into the fucking MRI machine. I can't remember the last time I was that afraid. At first I kept my eyes closed. My chest was tight, it was hard to breathe, and I felt like I was gasping for air. I was tempted to squeeze emergency ball, but somehow I found the strength not to. In that moment, I told myself that I wanted the chance to get answers more than I wanted safety (outside the MRI machine in an open room).
Tears slipped onto my check when I decided to open my eyes. I was somewhat relieved to find that the back of the MRI machine has a hole in it, so I could see the wall and a light in the distance. Still freaky, but better than it would have been had it been completely enclosed. It took about 45 minutes to go through a series of breath holds. Holding your breath as they take images also minimized movement. Afterward, the radiologist complimented me on how well I followed instructions and that made her job easy.
Before I left SimonMed, I went to the bathroom. I had very obvious symptoms of fecal matter in my urine and I passed gas out of my urethra. I'm hopeful the barium passed through whatever pathway it needed to in order to show up on the images.
I got a call today (08.09.17) from SimonMed asking me to come back in for "additional views". I'm going back on Friday the 11th. They couldn't tell me specifics because they are not allowed to allude to any diagnosis, but the lady did say they want to image lower into the pelvic region. Since it sounds like they didn't take images of that region before, the reason for additional views cannot be because of poor images from the first appointment. Perhaps they saw something and want narrow in on it...but that still doesn't make sense if they didn't take images of that region before. My mind is racing wondering if they found something, anything that might help explain my symptoms.
The bad news is that I have to conquer that damn MRI machine again. What's worse, a barium enema or a MRI where you go in head first? I don't know if I can answer that as they both seem like the same level of hell to me.
Surprisingly, the prep (clear liquid diet the day before along with two bottles of magnesium citrate and two dulcolax pills) didn't put me in the bathroom that much. In fact, I had some formed stool in the morning before my appointment. It still make my stomach hurt though.
They took an initial x-ray to make sure my bowels were clean enough for my procedure. I had a lot of stool in my bowels, so the tech had to get the PA. Thankfully, the PA also has Crohn's disease and didn't want to make me reschedule and reprep unless it was absolutely necessary. He talked with me to determine why I was there and what we're looking for. He consulted with his supervisor, the practicing physician, and they decided to remix the barium into a thinner consistency to give it a better chance of finding any abnormal pathways.
Typically the tech would insert the enema tip, but because I have a stricture and considered to be a "special" case, the MD wanted to do it (she was in dress clothes, not scrubs, so I don't think she usually has to do barium enemas). Since my bowels weren't empty, they didn't use air like they usually would.
The barium enema was very uncomfortable and it felt like I was going to shit all over them. The barium leaked a little, but the PA assured me that it was nothing to be embarrassed about. They have 90 year old men that shit the table all the time. The whole thing was a traumatizing and felt somewhat like an out-of-body experience.
After the MD signed off on the images and said I was done, the PA (the one with Crohn's) came into the room and let me know he isn't supposed to say anything, but he wanted me to know they didn't see any abnormal pathways. Seriously, I've never felt as well cared for as the team at SimonMed made me feel. While this seems like good news, it does not provide answers to my symptoms.
July 31, 2017 - Gastro Office Appointment:
I got the official results of the barium enema, which did not show any abnormal pathways. How the heck are feces getting into my urinary tract?? The Doc gave me a list of shit I have to get done. More on that later.
August 7, 2007 - MR Entorography (MRI of Small Bowel)
Since the Barium Enema only looks at the large intestine, my gastro ordered an MRI to look at the small intestine to see if maybe that's where the issue is coming from. I had this done a few years ago; however, it was a lot different this time around. I had to drink three 16oz. of barium (1 of 15 minutes) before the exam. The barium was new and improved from last time. It tasted better and was easier to get down than I remember, but it still made me nauseous.
Once the nurse (Juan) called me back to get my IV hooked up as I finished my last glass of barium, he complimented me on finishing the barium and mentioned that most patients can't drink them all. Hell, I didn't want to drink them all, I thought I had to. Had I known I could cheat on drinking all the barium, that would have been tempting.
The last time I had this done, they made me lay on my back on put me in the MRI machine feet first so that my head didn't go in the machine. This time around, they made me lay on my stomach (the radiologist explained that we want the bowels to move as little as possible and it helps to lay on them to minimize movement) and put me in *GASP* HEAD FIRST!!!! It was fucking terrifying!!!
I put in earplugs. They put some kind of temporary gastro paralysis in my IV that lasts for 30-45 minutes to slow the bowels. There was a huge strap the size of my back that hooked on each side of the table to secure me in tightly. The radiologist put the emergency ball in my hand (to squeeze if I need help or freak out) and started moving the table... which made me go head first into the fucking MRI machine. I can't remember the last time I was that afraid. At first I kept my eyes closed. My chest was tight, it was hard to breathe, and I felt like I was gasping for air. I was tempted to squeeze emergency ball, but somehow I found the strength not to. In that moment, I told myself that I wanted the chance to get answers more than I wanted safety (outside the MRI machine in an open room).
Tears slipped onto my check when I decided to open my eyes. I was somewhat relieved to find that the back of the MRI machine has a hole in it, so I could see the wall and a light in the distance. Still freaky, but better than it would have been had it been completely enclosed. It took about 45 minutes to go through a series of breath holds. Holding your breath as they take images also minimized movement. Afterward, the radiologist complimented me on how well I followed instructions and that made her job easy.
Before I left SimonMed, I went to the bathroom. I had very obvious symptoms of fecal matter in my urine and I passed gas out of my urethra. I'm hopeful the barium passed through whatever pathway it needed to in order to show up on the images.
I got a call today (08.09.17) from SimonMed asking me to come back in for "additional views". I'm going back on Friday the 11th. They couldn't tell me specifics because they are not allowed to allude to any diagnosis, but the lady did say they want to image lower into the pelvic region. Since it sounds like they didn't take images of that region before, the reason for additional views cannot be because of poor images from the first appointment. Perhaps they saw something and want narrow in on it...but that still doesn't make sense if they didn't take images of that region before. My mind is racing wondering if they found something, anything that might help explain my symptoms.
The bad news is that I have to conquer that damn MRI machine again. What's worse, a barium enema or a MRI where you go in head first? I don't know if I can answer that as they both seem like the same level of hell to me.
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