Showing posts with label gastro. Show all posts
Showing posts with label gastro. Show all posts
Monday, May 7, 2018
Hello from the Other Side
I fell a little behind (haha "behind") on blogging. I had my post-op follow-up appointment at the Cleveland Clinic on April 9, 2018. They lifted all of my physical and dietary restrictions and I do not have to go back unless I have major issues! The wound where Scarlett used to be has completely scared over. I finished all three of my Remicade loading doses and I am officially on the eight week schedule. According to my gastro, we no longer have to monitor the stricture I had closest to my rectum because it's not there anymore! That means fewer rectal exams!!! For the most part, I am doing well. Shitty days are to be expected and thankfully they have been few and far between.
Sunday, January 28, 2018
Progress
On January 15th, I had my post-op follow-up appointments at the Cleveland Clinic. Before my appointment with my surgeon, I had a gastro-graphic enema. During the procedure, they put a considerable amount of liquid contrast up my butt (my original butt) as they took x-rays of my intestines. They warned me that the contrast would cause discomfort and pain, but I felt okay during the procedure while I was on the table. Afterwards, they pulled the tube out of my butt and helped me off the x-ray table. Some of the contrast had leaked out of my butt onto the table causing the paper to stick to my ass when I stood up. I waddled to the bathroom connected to the x-ray room with the paper stuck to my butt. Once I peeled the paper off and put it in the trash, I sat on the toilet to let some of the contrast out of my bowel. I was in such a hurry to get out of there that I put my pants on backwards when I got dressed. It wasn't until I was in the chick-fil-a parking lot struggling to put my phone in my pocket that I realized I had put my pants on wrong. The contrast left over in my bowel caused multiple sensations of and actual uncontrollable bowel movements. It wasn't regular shit coming out of my butt. Rather, it was a combination of mucus and contrast.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
At my appointment with my surgeon, the sigmoidoscopy showed possible signs of active Crohn's disease. The sigmoidoscopy was painful due to the remaining stricture close to my rectum. Blood dripped out of my ass onto my pants and floor. I was already wearing my spare change of pants so we just wiped it clean as best as we could. I scheduled a tentative date for the surgery to take down my ileostomy, February 28, 2018. My surgeon gave me orders to schedule a colonoscopy with biopsies with my gastroenterologist. As long as my gastro agrees that I'm ready for the ostomy to be reversed, we will move forward with surgery on February 28th. My nurse was shocked when I told her my troubles with showering and keeping the ostomy appliance dry. She is a fellow ostomate and she informed me that I do not have to cover it with Press and Seal or anything else it keep it dry because it is allowed to get wet. Apparently, I could swim with an ostomy and not have to worry about keeping it dry. It has made showering easier, but I still dread taking showers.
The drive home from the Cleveland Clinic was absolute Hell! Between the contrast in my bowel from the enema and the air in my bowel from the sigmoidoscopy, my stomach was in wicked pain. In fact, I think it was worse pain than the pain I experienced in the hospital after surgery. I felt like I was going to shit myself the whole way home. It was not fun and it made me wonder how difficult it will be to regain control of my bowels once they turn the pipes back on during the reversal surgery. How much time in my next recovery am I going to spend shitting myself?
At my office visit with my gastro on Friday, my gastro said he was very impressed with the operative notes from surgery and he is pleased to see how well I've recovered. I scheduled my colonoscopy on the first Monday in February. They had two openings this week, but they were both in the mid-afternoon. I chose the appointment on the fifth because it was the first morning appointment available. After we get the results of the colonoscopy and biopsies, we will know whether or not surgery on February 28th is approved. My gastro and I will also discuss starting Remicade again once we have the results and determine if it's best to start Remicade before or after the next surgery based on the current state of my bowels.
Wednesday, October 25, 2017
A Colonoscopy and a Fistula Sighting!
My colonoscopy was originally scheduled for Tuesday, October 24th. After being on a clear liquid diet and drinking a gallon of prescription laxatives (GoLytely) on the 23rd, my bowels were not cleaned out. I only pooped a handful of times. My doc had me go in to see if they could proceed with the colonoscopy. We couldn't do the colonoscopy, so we rescheduled for today, the 25th. They sent me home with a different laxative (Prepopkit) that I did yesterday, the 24th. The prep still didn't clean me out like it should have, but they decided to proceed with the colonoscopy today anyway.
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
The first prep, the gallon from Hell, made me nauseous, yet somehow I managed to only vomit once throughout the course of the night. Even when I mixed it with Crystal Light, it was still absolutely disgusting. It was supposed to make me shit my brains out, but I only had about 4 or 5 bowel movements. None of which broke the water line. It was supposed to make me have three watery and clear bowel movements. It only turned my turds into what I call dip n dots (my nurse calls them rabbit turds). My poop was still formed, still brown, and still not falling out of my ass at the correct rate. My belly felt bloated and sore.
The second prep was a lot easier. I drank one 5oz. shot of laxatives at 5PM and another 5oz. shot of laxatives at 10:30PM. Before, during, and after, I guzzled lots of water. This one gave me a lot of gas and gas cramps. I had about 8 bowel movements, but each of them contained very little stool. The dip n dots lost a little form with each movement. My poop was still very brown and still not falling out of my ass at the correct rate. When I woke up this morning, my stomach was in knots. By this point, the last time I had solid food was on Sunday. I was hungry, irritable, and frustrated.
When I had my colonoscopy in 2012, I remember that I was not a very nice patient. I was also younger, weaker, and sicker back then. Not being able to pee in cup was a huge issue before my colonoscopy in 2012. I yelled at my nurse in 2012 about not having to go. This time around, my nurse gave me the option to sign a waiver as soon as she took me back stating I wasn't pregnant in lieu of peeing in a cup! It was a huge relief! Another issue in 2012 was that I yelled at my nurse when she couldn't start my IV. When my nurse could not start my IV today, I did not yell at her. I politely asked if there was someone else that could try. Diego, a fit, Hawaiian suffer looking nurse came to start my IV. He got it on his first try! Later, Kelly and I laughed about the fact that I remembered his name, but I didn't remember the name of the nurse that failed to start my IV (her name was Carol, btw). My hand still fucking hurts where she missed my vein.
I have come a long way since 2012. I did not yell at anyone today. I did not curse at anyone today. I think I am mentally and physically stronger than I was in 2012. Sure, the double prep wasn't any fun, but I managed not to lose my temper. Despite my strictures, fistula, and my upcoming bowel resection surgery, I think I am healthier today than I was back then! It's weird, but that's how well I feel compared to how I've felt in the past.
Our theory as to why the prep didn't work properly is that stool could not pass through one of my strictures, so it was being retained at that point. My doc was able to get the scope through my first stricture in my rectosigmoid junction. However, above the first stricture, my doc encountered an inflamed sigmoid area that would not allow the scope to pass. This is where my second stricture is located. A small fistula was seen in this area. Yes, we finally had a visual of the fistula! We even got a picture of it! My doc changed to a smaller scope, but it still could not pass without risking further intestinal damage. The colonoscopy was aborted at that point. (My old gastro also had to abort my colonoscopy in 2012 because he could not pass the second strictured area either.) Biopsies were taken and the results will be sent to my surgeon. My gastro mentioned that he did not see any active disease!!! This is huge in confirming that I really have been feeling well aside from the other issues. The strictures appear to be scar tissue.
I feel like shit, but I'm glad this part of my pre-op do-to list is behind me!
Sunday, September 10, 2017
Second Long Story: New Gastro
It has been a long time coming for me to switch from Dr. V. to a different gastro. I went from my pediatric gastro to Dr. V., so I've been his patient for over a decade. During that time, I have always had frustrations with the office staff and his numerous nurses over the years. They rarely return message and they often ignore requests (refills, prior authorizations, etc.) Their Patient Portal has made communication with them a little easier and kept them more accountable, but I'm still shocked whenever they get back to me. Recently, my nurse left for the day when she knew I was on my way to the office to get a test kit from her.
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
To make matters worse, Dr. V. has not been the Dr. I have needed. His style of care is probably the reason I have very little faith in health care. Most of the time, I don't think they can help me, I don't have the energy it takes to cut through all their bullshit to get answers, and I'd rather suffer than waste my time. When I am unwell, he pretty much will just lists medications and ask me what I want to do. I've been blindly throwing darts at the wall and that is not a very good strategy to manage Crohn's disease. Especially, when I am facing bowel resection surgery.
Thanks to a few family and friends that pushed me, I decided to get a second gastro opinion before I schedule surgery. My plan was that if I like the doctor that gave me the second opinion, I would switch to his practice as a new patient. Essentially, using the second opinion as an interview for a new gastro. Numerous people recommended different gastros. I narrowed my search to one practice because I was recommended to three different doctors within that practice.
A policy at this new practice in order to make an appointment for a second opinion required the doctor's approval to give a second opinion. After a few phone calls back and forth with the new practice and waiting around for responses, the first doctor on my list denied to give me a second opinion. Therefore, I could not make an appointment with him. It really pissed me off when the first doctor on my list denied me! Sure, there are two sides to every story, but the side I'm on makes him look like he lacks confidence in his specialty and only wants easy patients that come to him healthy. The second doctor on my list was booked out through October, so I didn't even try to get his approval. I was told the last doctor on my list does not typically approve second opinion appointments. The scheduling lady was very helpful and suggested that since this is time sensitive and I didn't want to wait a couple of months for an appointment, I seek approval from their newest gastro in the practice whom I've heard nothing about from friends. The scheduling lady told me he has approved every second opinion request she has brought to him. I agreed and Dr. K. approved me to make an appointment to see him. In my search, I learned a valuable lesson. Next time, I would not mention I was seeking a second opinion. Rather, I would just try to transfer as a new patient.
My appointment with Dr. K. was on Thursday, September 7th at 5:30PM. I was only on the second page of the paperwork they gave me to fill out when the nurse called me back at exactly 5:30PM. She weighed me (164 lbs.) and showed me to the room. I sent a quick text to Badass Doreen to let her know I was in the back already. Dr. K. came in the room at 5:32PM!!!! My first thought was that this guy wants to make a really good first impression. I let him know my friend was stuck in traffic, but would be there soon. We went ahead and got started by going through my history with Crohn's disease. Thankfully, Doreen didn't miss much. Dr. K. blew me away with his knowledge of the different medicines available and the science behind how they work. He really educated me and made sure I understood by answering our questions. He even stepped out of the room to consult his colleague to verify he was giving me the most accurate information he could. The bar was low going into this appointment, but Dr. K. significantly exceeded my expectations!
Dr. K. did confirm that no medicine available will heal the fistula and surgical correction is the only way to fix it. Based on his explanations, I believe him. My treatment regimen moving forward depends greatly on the results of the Remicade drug level and antibody test I had done on September 4th. Basically, if I have any antibodies towards Remicade, there is little we can do. We could try to hit the antibodies with 6MP or something similar to attempt to knock down the antibodies. The down side with that is that being on Remicade and 6MP or something similar increases my risk of getting cancer.
Before surgery, Dr. K. would pull me off Remicade anyway because Remicade would slow down the healing process and could complicate surgery. This actually surprised me. If I didn't have antibodies or had very few, I could stay on Remicade. However, by getting off Remicade for a period of time before, during, and after surgery, I could have an adverse reaction when/if I try to go back on it after surgery. By now, you know my sentiments towards Remicade. I am going to be shocked if I have antibodies. I just don't think I have antibodies because of how well I feel. If that's the case, I would be willing to try to go back on Remicade after surgery. Dr. K. mentioned that we could do the free blood test again if that's the case to get a better idea of whether or not I would have an adverse reaction.
If I do have antibodies, I will be disappointed and I will most likely have to decide to say goodbye to Remicade. In which case, I would probably have to get surgery sooner than I wanted to while I'm still relatively well. I wouldn't try new meds before surgery because these drugs are not something you can start and stop and start again on a whim. The meds fuck with my immune system that is already fucked up, so reactions are somewhat unpredictable. Considering that I have two solid medication options after Remicade, I cannot be blowing through them. I do not want to get to the point where I am waiting for different meds to be developed because I've tried and failed all of the ones currently available.
Dr. K. also questioned how I feel about my current colorectal specialist. I told him I had confidence in her. In case I want to get a second surgical opinion, he wrote me a referral anyway to a colorectal specialist that Dr. K. said specializes in surgeries on Crohn's patients at the Cleveland Clinic in South Florida. I was pretty confused by this referral. My one constant was my current colorectal specialist, but I don't know if I can ignore this recommendation to get a second opinion. I can at least see what this guy at the Cleveland Clinic has to say so that I can weigh all of my options before scheduling surgery.
I had no uneasy feelings leaving my old gastro behind (haha). I feel differently about the idea of ditching my current colorectal specialist though. She knows me, my ass, my bowels, and my fucking stricture better than anyone. She has seen it every few months since 2012. This new guy might be more specialized with more experience, but he does not know me like she does. My bottom is a disaster according to my current colorectal. She doesn't understand how I am doing so well or how I am able to control my bowels, but she knows I am doing well and that I control my bowels. The scariest thing going into surgery is the possibility of coming out of it with a stoma. My current colorectal said that she won't know if I need a stoma until she gets in there and sees how it looks. I don't think she will underestimate me and what my body can do because she has seen it do amazing things despite it being a disaster. For that reason, I believe I have a better chance coming out surgery without stoma with her as my surgeon. Whereas this new guy might see the disaster that my bottom is and underestimate my body because he doesn't know it was well as my current colorectal.
There are pros and cons to each decision. I'm really confused even though I have strong feelings about which route I am leaning towards. Currently, I'm awaiting the results of my drug and antibody levels. Dr. K.'s office is working on getting a prior authorization from my insurance, and then will have the Cleveland Clinic call me to schedule an appointment.
Now we wait!
First Long Story: Free Remicade Drug Level and Antibody Test
I could make a couple of long stories short by just posting about the outcomes, but I have some time to kill while hurricane Irma does her thing. Plus, a story is incomplete without conflict and struggle.
First Long Story:
As you know I was supposed to get a blood test done that measures drug levels and antibodies with a Prometheus test kit before my Remicade appointment on Tuesday, September 5th. Lynn, the bigger sister I never knew I needed, is one of the newest additions to my arsenal of friends. Most of the time, I don't have the energy or the will power to give a shit. Basically, I'm lazy because I'd rather take a nap. Thankfully, Big Sister Lynn gives lots of shits. She stepped up and scheduled a conference call with one of her other friends with IBD on Wednesday, July 30th. While on the call it was suggested that I verify that my insurance will cover the $2,500 cost of the Prometheus test as well as to look into finding the free test Remicade will pay for twice a year.
When I called Prometheus, it was estimated that my insurance would bring my co-pay down to $500. Even though that meant I would save $2,000, $500 seemed like a lot to spend on lab work. Since I have saved over $100,000 by using co-pay assistance programs in the past, I asked if Prometheus had a co-pay assistance program. Prometheus has a financial assistance program. Contingent upon being approved for the financial assistance program, it would bring the co-pay down to $175. I received the financial assistance application, but I didn't fill it out.
Labor Day weekend was fast approaching, which didn't give me much time to figure this out before my Remicade appointment on Tuesday. On Thursday, July 31st, I had left a voicemail and messaged my Remicade nurse to inquire about the free test that Remicade will pay for. Desperate without a response from my Remicade nurse, I messaged my gastro and his nurse to inquire about it on Friday. To my surprise, my gastro nurse called me within fifteen minutes. Unfortunately, she did not know anything about Remicade paying for the test. My gastro nurse surprised me again when she called back to say she consulted Mr. Google and found that Miraca Life Sciences is the lab that apparently partnered with Janssen (Remicade's pharmaceutical company) and she had Micaca Life Sciences test kit in the office because it's the same kit they use to measure drug levels for Cimzia patients. She let me know that the office would close at noon and I told her I was on my way. I got off the phone with her at 10:40am, spoke with my supervisor, and I was in my car at 10:45am to go pick up that fucking kit. I arrived at the office a little before 11:30am to find that my gastro nurse had already left for the day even though she knew I was on my way. Thankfully, the people at the front desk helped me find the test kit I thought I needed.
After I picked up the kit, I had an appointment with my primary care doctor and I took my mom to one of her doctor appointments. It was 4pm on Friday by the time I could do my own research. I wanted to confirm I picked up the right test kit. First I called my insurance company. It took three people a total of an hour and a half to tell me that the Prometheus test and the Miraca Life Sciences test are out of network and would not be covered. I explained that I am not going to pay $2,500 for the test and asked them what my options were to make it more affordable. The only thing I could do is have my doctor call in to request a "Gap Exception", which would provide full coverage; however, the Gap Exception is contingent upon the insurance company's approval. Insurance could not confirm that the Gap Exception would be approved, nor could they explain factors that could cause it to be denied. At this point, there was no way I could get the Gap Exception, even if it was approved, in time for Tuesday. Insurance did not know anything about Remicade paying for this test.
My next call was to Prometheus because I wanted to inquire if the financial assistance, that was contingent upon the application that I never filled out being approved, would be based on a percentage of the estimated co-pay since my insurance will not bring it down the $500 they originally estimated (would that percentage now be based on the full $2,500), or if the $175 was a fixed co-pay amount for anyone approved. As expected Prometheus had already closed for the holiday weekend.
I have a RemiStart co-pay assistance card for Remicade, so I called the number on the back of the card. RemiStart is affiliated with Janssen, Remicade's pharmaceutical company, but no one there knew of the free test I inquired about. They were able to confirm the only "insurance code" the card applies to is Remicade and I cross referenced the code they gave me with the codes I had for the drug level and antibody test. They didn't match, which meant they were right. Afterwards, I tried calling Janssen directly, but I got an automated machine letting me know they would be back on Tuesday and to call 911 if it was a medical emergency.
My last and most promising call was to Miraca Life Sciences. Thankfully, I was able to speak with someone. He didn't know about Miraca's partnership with Janssen or the free test, but he e-mail three of his colleagues that would know about the free test and would have one of them contact me on Tuesday because they had all left for the holiday weekend.
At a loss for what I should do, I pretty much decided that I was not going to spend $2,500 to measure the Remicade drug levels and antibodies in my system because I am still fairly certain Remicade is working. I expressed my frustration with friends. When I returned home from my run on Saturday, September 2nd, my mom let me know that my Remicade nurse left a message on the house phone. She told me she had the kit for the free test at her office and she can draw my blood before she starts my Remicade infusion on Tuesday. All of that headache for it to be as simple as my Remicade nurse already having the right kit to get the test for free.
The kit she had was an entirely different kit from the two kits I had (Prometheus and Miraca Life Sciences). Her kit actually had Janssen's and Miraca Life Science's name on the box. My Remicade nurse confirmed that she has gotten the test for free for other Remicade patients and assured me that I would not have to pay $2,500. I gave her a guilt trip as to why my gastro and his nurse did not know about the kit for the free test. She plans to discuss it with them and switch out their kits to the kits that allow you to get the test for free. Miraca Life Science did call me after I had already gotten the free test on Tuesday, so I let the call go to voicemail.
Now we wait for the results!
First Long Story:
As you know I was supposed to get a blood test done that measures drug levels and antibodies with a Prometheus test kit before my Remicade appointment on Tuesday, September 5th. Lynn, the bigger sister I never knew I needed, is one of the newest additions to my arsenal of friends. Most of the time, I don't have the energy or the will power to give a shit. Basically, I'm lazy because I'd rather take a nap. Thankfully, Big Sister Lynn gives lots of shits. She stepped up and scheduled a conference call with one of her other friends with IBD on Wednesday, July 30th. While on the call it was suggested that I verify that my insurance will cover the $2,500 cost of the Prometheus test as well as to look into finding the free test Remicade will pay for twice a year.
When I called Prometheus, it was estimated that my insurance would bring my co-pay down to $500. Even though that meant I would save $2,000, $500 seemed like a lot to spend on lab work. Since I have saved over $100,000 by using co-pay assistance programs in the past, I asked if Prometheus had a co-pay assistance program. Prometheus has a financial assistance program. Contingent upon being approved for the financial assistance program, it would bring the co-pay down to $175. I received the financial assistance application, but I didn't fill it out.
Labor Day weekend was fast approaching, which didn't give me much time to figure this out before my Remicade appointment on Tuesday. On Thursday, July 31st, I had left a voicemail and messaged my Remicade nurse to inquire about the free test that Remicade will pay for. Desperate without a response from my Remicade nurse, I messaged my gastro and his nurse to inquire about it on Friday. To my surprise, my gastro nurse called me within fifteen minutes. Unfortunately, she did not know anything about Remicade paying for the test. My gastro nurse surprised me again when she called back to say she consulted Mr. Google and found that Miraca Life Sciences is the lab that apparently partnered with Janssen (Remicade's pharmaceutical company) and she had Micaca Life Sciences test kit in the office because it's the same kit they use to measure drug levels for Cimzia patients. She let me know that the office would close at noon and I told her I was on my way. I got off the phone with her at 10:40am, spoke with my supervisor, and I was in my car at 10:45am to go pick up that fucking kit. I arrived at the office a little before 11:30am to find that my gastro nurse had already left for the day even though she knew I was on my way. Thankfully, the people at the front desk helped me find the test kit I thought I needed.
After I picked up the kit, I had an appointment with my primary care doctor and I took my mom to one of her doctor appointments. It was 4pm on Friday by the time I could do my own research. I wanted to confirm I picked up the right test kit. First I called my insurance company. It took three people a total of an hour and a half to tell me that the Prometheus test and the Miraca Life Sciences test are out of network and would not be covered. I explained that I am not going to pay $2,500 for the test and asked them what my options were to make it more affordable. The only thing I could do is have my doctor call in to request a "Gap Exception", which would provide full coverage; however, the Gap Exception is contingent upon the insurance company's approval. Insurance could not confirm that the Gap Exception would be approved, nor could they explain factors that could cause it to be denied. At this point, there was no way I could get the Gap Exception, even if it was approved, in time for Tuesday. Insurance did not know anything about Remicade paying for this test.
My next call was to Prometheus because I wanted to inquire if the financial assistance, that was contingent upon the application that I never filled out being approved, would be based on a percentage of the estimated co-pay since my insurance will not bring it down the $500 they originally estimated (would that percentage now be based on the full $2,500), or if the $175 was a fixed co-pay amount for anyone approved. As expected Prometheus had already closed for the holiday weekend.
I have a RemiStart co-pay assistance card for Remicade, so I called the number on the back of the card. RemiStart is affiliated with Janssen, Remicade's pharmaceutical company, but no one there knew of the free test I inquired about. They were able to confirm the only "insurance code" the card applies to is Remicade and I cross referenced the code they gave me with the codes I had for the drug level and antibody test. They didn't match, which meant they were right. Afterwards, I tried calling Janssen directly, but I got an automated machine letting me know they would be back on Tuesday and to call 911 if it was a medical emergency.
My last and most promising call was to Miraca Life Sciences. Thankfully, I was able to speak with someone. He didn't know about Miraca's partnership with Janssen or the free test, but he e-mail three of his colleagues that would know about the free test and would have one of them contact me on Tuesday because they had all left for the holiday weekend.
At a loss for what I should do, I pretty much decided that I was not going to spend $2,500 to measure the Remicade drug levels and antibodies in my system because I am still fairly certain Remicade is working. I expressed my frustration with friends. When I returned home from my run on Saturday, September 2nd, my mom let me know that my Remicade nurse left a message on the house phone. She told me she had the kit for the free test at her office and she can draw my blood before she starts my Remicade infusion on Tuesday. All of that headache for it to be as simple as my Remicade nurse already having the right kit to get the test for free.
The kit she had was an entirely different kit from the two kits I had (Prometheus and Miraca Life Sciences). Her kit actually had Janssen's and Miraca Life Science's name on the box. My Remicade nurse confirmed that she has gotten the test for free for other Remicade patients and assured me that I would not have to pay $2,500. I gave her a guilt trip as to why my gastro and his nurse did not know about the kit for the free test. She plans to discuss it with them and switch out their kits to the kits that allow you to get the test for free. Miraca Life Science did call me after I had already gotten the free test on Tuesday, so I let the call go to voicemail.
Now we wait for the results!
Sunday, August 27, 2017
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.
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.
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.
Tuesday, July 11, 2017
Health Care Sucks
Gastro:
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
Friday, April 15, 2016
An Update
It hasn't even been a week and I'm already getting antsy. I'm restless mostly because the New York City Marathon is on my mind. Don't get me wrong, I'm thrilled I'll be back pounding my feet against the pavement sooner than originally planned. However, it's still frustrating to wait it out because my hopes are high. I've been on Pinterest looking at a bunch of workout motivation. It inspired me to incorporate some cross training in with my marathon training once I start training again. I'm excited to feel my body get stronger and my mentality get tougher throughout the next few months.
I went to see my gastro yesterday to talk about medication options. It's a little scary knowing that there aren't a lot of effective treatment options available. The two options my doc recommended were to add 6MP to my treatment while continuing with Cimzia or stopping Cimzia and switching to Remicade.
I was on 6MP for years after I was first diagnosed with Crohn's. Now, looking back I wonder if my parents even knew what 6MP is. I certainly didn't know or care at the time. It's actually a chemo therapy drug. Anti-cancer drugs are pretty common in Crohn's treatment, but I think it's a little harsh. It's really bad for the liver and frequent lab tests need to be done to monitor its affect on the kidneys and liver. There is also a higher risk of lymphoma when taking Cimzia with 6MP than other options. Isn't that ironic? My first treatment strategy was to exhaust all of my options with Cimzia before stopping it. Once you stop a biologic like Cimzia, you can't go back on it because your body will build antibodies against it and reject it. I just don't think it makes sense to keep moving forward with Cimzia because it hasn't been very effective for a while now. Most of the medication options are frightening, but 6MP is a little scarier than other options in my opinion.
That leaves me with Remicade, which is an infusion I can't administer myself. I'm told this is a more potent treatment for Crohn's and most patients see better results with it than with Cimzia. Remicade is a TNF blocker like Cimzia with similar risks. It's way more expensive than Cimzia, so I'm in the process of figuring out if my insurance will cover it before I can make the switch. Thankfully, I have a nurse advocate helping me figure it all out. I'm surprisingly excited at the possibility of bidding Cimzia farewell.
In other news, Ticketmaster finally released my tickets to Halsey on July 6th at the CFE Arena! I'm super stoked about that.
I went to see my gastro yesterday to talk about medication options. It's a little scary knowing that there aren't a lot of effective treatment options available. The two options my doc recommended were to add 6MP to my treatment while continuing with Cimzia or stopping Cimzia and switching to Remicade.
I was on 6MP for years after I was first diagnosed with Crohn's. Now, looking back I wonder if my parents even knew what 6MP is. I certainly didn't know or care at the time. It's actually a chemo therapy drug. Anti-cancer drugs are pretty common in Crohn's treatment, but I think it's a little harsh. It's really bad for the liver and frequent lab tests need to be done to monitor its affect on the kidneys and liver. There is also a higher risk of lymphoma when taking Cimzia with 6MP than other options. Isn't that ironic? My first treatment strategy was to exhaust all of my options with Cimzia before stopping it. Once you stop a biologic like Cimzia, you can't go back on it because your body will build antibodies against it and reject it. I just don't think it makes sense to keep moving forward with Cimzia because it hasn't been very effective for a while now. Most of the medication options are frightening, but 6MP is a little scarier than other options in my opinion.
That leaves me with Remicade, which is an infusion I can't administer myself. I'm told this is a more potent treatment for Crohn's and most patients see better results with it than with Cimzia. Remicade is a TNF blocker like Cimzia with similar risks. It's way more expensive than Cimzia, so I'm in the process of figuring out if my insurance will cover it before I can make the switch. Thankfully, I have a nurse advocate helping me figure it all out. I'm surprisingly excited at the possibility of bidding Cimzia farewell.
In other news, Ticketmaster finally released my tickets to Halsey on July 6th at the CFE Arena! I'm super stoked about that.
Tuesday, April 5, 2016
Crohn's Sucks
Excuse me while I wallow in self pity. I went to my colorectal specialist today. The pain from my abscess is pretty much non-existent. It's only tender to touch directly. I dropped my pants and my doctor poked around with her finger finding the abscess. The abscess was tender to her touch, but I didn't feel the pain I felt on Thursday when my gastro touched it. The colorectal moved her finger to another spot that I didn't realize was tender as well. She pointed out that it was a fistula. She asked a few questions about possible side effects, which I hadn't experienced. That's when she said something like: For your bottom being such a disaster, you sure don't show a lot of symptoms. Even my doctor thinks my ass is a disaster. lol
According to the American Society of Colon and Rectal Surgeons, "An anal fistula (also commonly called fistula-in-ano) is frequently the result of a previous or current anal abscess. This occurs in up to 50% of patients with abscesses."
Apparently, even though the antibiotics are healing the abscess, the fistula makes it extremely likely for the abscess to return after my round of antibiotics are complete. My colorectal doctor was very concerned and recommended that I schedule surgery for next week. Next week, I will have my first Crohn's related surgery. She will be opening up the fistula and possibly the abscess to put a drainage seton in place to open it up so that it can drain and heal. She will also be flexing my stricture in hopes to being able to perform a sigmoidoscopy and she will be surgically removing a skin tag by my anus. She said recovery is one to two weeks. I'm so thankful that my supervisor at work has been understanding throughout all of this and told me today that "my health comes first" when I apologized for having to take off four days next week.
I feel like this song 'We Don't Have to Dance' by Andy, the lead singer of the Black Veil Brides band was written about my relationship with Crohn's.
According to the American Society of Colon and Rectal Surgeons, "An anal fistula (also commonly called fistula-in-ano) is frequently the result of a previous or current anal abscess. This occurs in up to 50% of patients with abscesses."
Apparently, even though the antibiotics are healing the abscess, the fistula makes it extremely likely for the abscess to return after my round of antibiotics are complete. My colorectal doctor was very concerned and recommended that I schedule surgery for next week. Next week, I will have my first Crohn's related surgery. She will be opening up the fistula and possibly the abscess to put a drainage seton in place to open it up so that it can drain and heal. She will also be flexing my stricture in hopes to being able to perform a sigmoidoscopy and she will be surgically removing a skin tag by my anus. She said recovery is one to two weeks. I'm so thankful that my supervisor at work has been understanding throughout all of this and told me today that "my health comes first" when I apologized for having to take off four days next week.
I feel like this song 'We Don't Have to Dance' by Andy, the lead singer of the Black Veil Brides band was written about my relationship with Crohn's.
Sunday, November 1, 2015
Visits with My Gastro and Colorectal Specialist
My gastroenterologist visit on Thursday went well. I weighed in at 148lbs, which made me super happy! I've come a long way since December/January. The doc quizzed me about my bowel movements, which I had no real complaints about. I'm been pooping without pain, I typically have been going about 4 times a day, and the stool has been formed. He then asked about my stricture. The thing about my stricture is that the only reasons I know I have it are because my stool is super thin and because they tell me it's something we need to keep an eye on. In my experience, I have learned that I cannot accurately tell you "how my stricture is doing" because I do not put my finger or anything else up my ass to see how tight the stricture is and I'm not good at observing my stool getting thinner over time. I only feel it when my colon and rectal specialist uses her finger to loosen the stricture. Anyways, I told my gastro that I didn't think the stricture had gotten any worse. He said I looked healthy, but went on to say, "Since you have a history of severe Crohn's disease we need to make sure you are seeing Dr. M. regularly." Dr. M. is my colon and rectal specialist. My gastro only looks at my ass if I have a colonoscopy, so he sends me to Dr. M. for regular ass observation. I really only use my gastro to get prescriptions even though Dr. M. has given me prescriptions in the past. I talked with my gastro about my lack of energy and possible depression and he ordered me to get some lab work done to see if I'm anemic. He thinks that's most likely wants causing the lack of energy and even plays a role in leading to depression. I'll likely have to start taking iron pills or get an iron infusion to help with the anemia.
My colon and rectal specialist visit on Friday was pretty much a visit from Hell. Again, I weighed in at 148lbs. It had been a year since my last visit and I'm supposed to be going every 3 months. Every visit the doc loosens my stricture with her finger and sure it's uncomfortable, but I would never have described it as painful before. Well, this time I was in so much pain as she was loosening it that I had to have her stop. Then I had decide if she was going to try again or if I wanted anesthesia. Of course, I wanted anesthesia, but that's expensive so I held my breath and told her to try again. The pain I felt can't be put into words. My mom was in the room and it almost brought her to tears for her to see me in so much pain. My doc was able to loosen it, but she said that she wasn't going to use the scope because that would likely hurt and certainly make me sore the next day. She lectured me about seeing her every 3 months because my rectum is in "bad shape." That scares me. In the back of mind, I know I'll likely be pooping in a bag at some point in my life and as much as I joke about it I really don't want that to happen. Hopefully, when I go back in 3 months, my rectum will be big enough for the scope so we can see what the disease is doing.
If I was a good patient, I would research the heck out Crohn's and strictures, but I can't bring myself to do it. The few times I have tried to find information I soon stopped because I don't want those other patients' stories to be my future. My Crohn's isn't that bad, right? I'm sure that makes me an idiot because that also means that I'm solely in the hands of my doctors with no real opinion on what to do about my condition of my own. Perhaps I should care more, but I don't... I can't. That absolutely makes me a guinea pig because I just do whatever my doctors tell me to do most of the time. I had a friend ask me if "they are blowing [...the stricture] up with a balloon?" I might get around to looking up what that means one day, but at the moment I'm content not knowing. I'm in chronic denial.
My colon and rectal specialist visit on Friday was pretty much a visit from Hell. Again, I weighed in at 148lbs. It had been a year since my last visit and I'm supposed to be going every 3 months. Every visit the doc loosens my stricture with her finger and sure it's uncomfortable, but I would never have described it as painful before. Well, this time I was in so much pain as she was loosening it that I had to have her stop. Then I had decide if she was going to try again or if I wanted anesthesia. Of course, I wanted anesthesia, but that's expensive so I held my breath and told her to try again. The pain I felt can't be put into words. My mom was in the room and it almost brought her to tears for her to see me in so much pain. My doc was able to loosen it, but she said that she wasn't going to use the scope because that would likely hurt and certainly make me sore the next day. She lectured me about seeing her every 3 months because my rectum is in "bad shape." That scares me. In the back of mind, I know I'll likely be pooping in a bag at some point in my life and as much as I joke about it I really don't want that to happen. Hopefully, when I go back in 3 months, my rectum will be big enough for the scope so we can see what the disease is doing.
If I was a good patient, I would research the heck out Crohn's and strictures, but I can't bring myself to do it. The few times I have tried to find information I soon stopped because I don't want those other patients' stories to be my future. My Crohn's isn't that bad, right? I'm sure that makes me an idiot because that also means that I'm solely in the hands of my doctors with no real opinion on what to do about my condition of my own. Perhaps I should care more, but I don't... I can't. That absolutely makes me a guinea pig because I just do whatever my doctors tell me to do most of the time. I had a friend ask me if "they are blowing [...the stricture] up with a balloon?" I might get around to looking up what that means one day, but at the moment I'm content not knowing. I'm in chronic denial.
Monday, October 26, 2015
I've Been Busy; That's a Lie
Hi! Long time, no blog. I could lie and say I've been busy. The truth is I've been sleeping my life away. How am I feeling? I hate that question! Honestly, I usually say I'm doing good until one day I wake up and I realize that somewhere along the way my 'normal' has changed. Yet, I'll still tell you, "I'm good."
I see my gastro on Thursday and my colorectal specialist on Friday, so I'll be haunting my doctors with my ass for Halloween. Thankfully, I haven't been experiencing pain. Two weekends ago, I shit so much in the middle of the night that I woke up with abs the next morning... I haven't worked out in months. Sounds like a dream, right? Go to bed, wake up 14 times to shit in the middle of the night, and then wake up with abs. My bowels have gotten back to 'normal' since then. I have been super tired. I slept for 26 hours this past weekend. My doctors and I have some talking to do... even though they still don't know about the incident in Texas last December and I don't know if I'm going to tell them.
Enough about that... When I'm not working, sleeping, or shitting, I've been reading "Blink: The Power of Thinking Without Thinking". I'm about a third of the way through the book and all I can is wow! It has been eye opening to the way our brains process information consciously and subconsciously. This is a book about psychology and so far learning about priming and thin slicing is so interesting to me. I can't wait to see what else this book has in it!
I've also been finding new music on YouTube. My current obsessions are with Halestorm and Halsey. If you're only going to listen to one of each of their songs, listen to Hold Me Down by Halsey and Love Bites (So Do I) by Halestorm. If you're going for a second song, go for Gasoline by Halsey and Apocalyptic by Halestorm. I'm surprisingly leaning toward more rock selections. The screaming parts are just the therapy I need.
Lastly, I've been binge watching The Walking Dead on Netflix. I just got to season 5! All I can say is that I would not survive a zombie apocalypse. I'd be one of the first to turn and then I'd be attacking all of you healthy people.
I see my gastro on Thursday and my colorectal specialist on Friday, so I'll be haunting my doctors with my ass for Halloween. Thankfully, I haven't been experiencing pain. Two weekends ago, I shit so much in the middle of the night that I woke up with abs the next morning... I haven't worked out in months. Sounds like a dream, right? Go to bed, wake up 14 times to shit in the middle of the night, and then wake up with abs. My bowels have gotten back to 'normal' since then. I have been super tired. I slept for 26 hours this past weekend. My doctors and I have some talking to do... even though they still don't know about the incident in Texas last December and I don't know if I'm going to tell them.
Enough about that... When I'm not working, sleeping, or shitting, I've been reading "Blink: The Power of Thinking Without Thinking". I'm about a third of the way through the book and all I can is wow! It has been eye opening to the way our brains process information consciously and subconsciously. This is a book about psychology and so far learning about priming and thin slicing is so interesting to me. I can't wait to see what else this book has in it!
I've also been finding new music on YouTube. My current obsessions are with Halestorm and Halsey. If you're only going to listen to one of each of their songs, listen to Hold Me Down by Halsey and Love Bites (So Do I) by Halestorm. If you're going for a second song, go for Gasoline by Halsey and Apocalyptic by Halestorm. I'm surprisingly leaning toward more rock selections. The screaming parts are just the therapy I need.
Lastly, I've been binge watching The Walking Dead on Netflix. I just got to season 5! All I can say is that I would not survive a zombie apocalypse. I'd be one of the first to turn and then I'd be attacking all of you healthy people.
Wednesday, September 30, 2015
Goodbye, September
I don't know what procrastination says about a person, but I do know I am an expert at procrastinating. If I had the energy, I would probably be stressed. I'm not stressed, just irriated that people can't do their jobs right. I have no trouble sleeping and I don't feel worried. Perhaps I'm depressed...
After leaving five messages with my nurse over a 9 day period to get a prior authorization for Cimzia, she still hadn't returned my calls or submitted the prior authorization like I requested. So, I sent my mom to the gastro office to get some answers. I sent my mom with a copy of my ID, new insurance card, and a patient disclosure form authorizing her to access my medical records. It turns out the nurse didn't call back because she didn't think the prior authorization was necessary since she gave a prior authorization for me last year. Can you believe that shit? My mom told her that she should have at least called me back to let me know she didn't feel like doing her job. Thankfully, my mom got the nurse to transfer the prior authorization from last year to my new insurance. I don't understand why the nurse couldn't just give a new prior authorization because that would last longer.
The pharmacy finally let me schedule delivery for my Cimzia, and said that insurance approved the prior authorization. Although during my first attempt today to schedule delivery, the pharmacy said that the prior authorization had been cancelled. Nobody seems to know what they're doing. I guess if Cimzia arrives when I scheduled the delivery, none of it matters.
In other news, while my car was getting leather installed they broke a bolt when they were putting the driver's seat back into the car. Now, they have to keep it in service to fix it. At least they gave me a free rental car. Plus, the leather looks and smells amazing, so it'll be worth it.
After leaving five messages with my nurse over a 9 day period to get a prior authorization for Cimzia, she still hadn't returned my calls or submitted the prior authorization like I requested. So, I sent my mom to the gastro office to get some answers. I sent my mom with a copy of my ID, new insurance card, and a patient disclosure form authorizing her to access my medical records. It turns out the nurse didn't call back because she didn't think the prior authorization was necessary since she gave a prior authorization for me last year. Can you believe that shit? My mom told her that she should have at least called me back to let me know she didn't feel like doing her job. Thankfully, my mom got the nurse to transfer the prior authorization from last year to my new insurance. I don't understand why the nurse couldn't just give a new prior authorization because that would last longer.
The pharmacy finally let me schedule delivery for my Cimzia, and said that insurance approved the prior authorization. Although during my first attempt today to schedule delivery, the pharmacy said that the prior authorization had been cancelled. Nobody seems to know what they're doing. I guess if Cimzia arrives when I scheduled the delivery, none of it matters.
In other news, while my car was getting leather installed they broke a bolt when they were putting the driver's seat back into the car. Now, they have to keep it in service to fix it. At least they gave me a free rental car. Plus, the leather looks and smells amazing, so it'll be worth it.
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