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.
Showing posts with label colorectal specialist. Show all posts
Showing posts with label colorectal specialist. Show all posts
Sunday, January 28, 2018
Thursday, October 19, 2017
Bowel Resection Surgery Scheduled at the Cleveland Clinic 11.29.2017
I found myself alone in the car with my mom for three and a half hours on Sunday. [The remaining part of this paragraph has been redacted.]
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
Upon climbing the stairs to the second floor of the Cleveland Clinic, we were greeted by the sign above that stood as tall as me. I checked in and we were called back on time. Before Dr. Second Opinion became my new current colorectal, I spoke with three nurses to give them my medical records and talk about my history with Crohn's disease. In the process, I learned that one of the nurses has Crohn's and another nurse's brother has Crohn's. Next, the Fellow, aka Follower, came in the room and reviewed my records and asked more detailed questions about my current symptoms and most recent procedures.
The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
We met Taylor for dinner on Sunday and even though dinner sucked, it was great to see her! I felt obviously distracted. I was there, but my mind was somewhere else. [Portions of this paragraph have been redacted and/or revised]
Sunday night and even Monday morning, I felt overwhelmed just thinking about the appointment. It was tempting to cry myself to sleep. I hate crying and I especially hate being vulnerable in front of my mom. I'm somewhat of a pro at suffering in silence. No wonder I have a disease to my gut. No wonder this disease is considered invisible. Hell, even I was surprised how many people stood up when the speaker at the Crohn's and Colitis Foundation's Crystal Ball asked everyone in the room with IBD to stand up. Most people just see the parts we want them to see, the strength, the bravery, the perseverance to keep moving forward, the appearance of being as normal as possible. We make it too easy for others to think it's going to be okay for us. Personally, I don't like talking out loud about the struggles and I use jokes as a twisted coping mechanism. It is what it is and life is a comedic tragedy.
When a mom expressed to her son that she would take on this disease if it meant he wouldn't have it anymore, the son knew his mom wasn't strong enough to endure it. That's a true story I heard at lunch on Monday with my Team Challenge friend, Bonnie. After lunch, I did my series of enemas in the hotel room to prep for my appointment at the Cleveland Clinic. Before I knew it, it was time to head to my appointment.
 |
The moment we've all been waiting for: Dr. Wexner came into the room. After a brief conversation, I dropped my pants and he performed a sigmoidoscopy. He was able to see my strictures and diseased ass! He did a lot of talking when I had my pants down and that made it difficult to concentrate and remember what all he said...especially with the scope up my ass. He mentioned that he reviewed my records and MRI results. He said my other Dr. stopped ordering tests and jumped straight to scheduling surgery. While he agreed that surgery is indeed required, he explained that he wants me to get a colonoscopy, cystoscopy, ECG, e-rays, pre-op clearance, stoma marking, and lab work prior to surgery because he wants to know the most he can about the area requiring surgery before I'm on the operating table and he wants to confirm that I'm fit for surgery. Why didn't the other Dr. think of that? The other qualifying factor was that he was more optimistic in that if an ostomy is required it'd more likely be temporary.
I didn't even have to tell him he was hired. I had just finished buttoning my pants when he pulled out his calendar to start discussing surgery dates. I scheduled surgery for Wednesday, November 29, 2017 at the Cleveland Clinic in Weston, Florida. And, just like that he became my new colorectal!
The appointments I have scheduled currently are:
- Prep for Colonoscopy - Monday, October 23, 2017 (awaiting prep instructions)
- Colonoscopy - Tuesday, October 24, 2017 at 12:30PM (I'm still traumatized from the last one)
- Chest X-ray - Tuesday, November 7, 2017 at 10:30AM
- Pre-op Clearance (ECG, lab work, and other testing) - Tuesday, November 14, 2017 at 8:15AM
- Pre- op Stoma Marking at the Cleveland Clinic - Tuesday, November 28, 2017 at 1PM
- Bowel Resection Surgery at the Cleveland Clinic Hospital - Wednesday, November 29, 2017
Tuesday, October 10, 2017
Playing the Field
Even though I am waiting to see what Dr. Second Opinion has to say, I am still taking steps forward to schedule surgery with my current colorectal. I am playing the field, the medical field. My current colorectal confirmed Wednesday, December 6, 2017 as my surgery date for bowel resection. Now, that date is only tentative on my end because I might cancel it depending on how my appointment goes with Dr. Second Opinion.
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
I finally received my current colorectal's notes from my appointment on August 22, 2017. I underlined the words and phrases that scare me the most.
- 8/22/17 Barium enema and MR enterography reviewed with patient. The BE did not show evidence of a fistulous tract, but the MR enterography did show evidence of a potential fistulous connection. Given the persistent clinical symptoms of enterovesical fistula and the MR findings, surgical options were discussed. She will discuss the findings with her GI physician and will possibly proceed to a laparoscopic, possible open low anterior resection and repair of colovesical fistula. The risks of surgery including a need for an ostomy which might be permanent were discussed. In addition the concern is that as she has a known anal stricture as well as rectal stricture, that her rectum may be diseased enough that an anastomosis may not be feasible.
When I read the notes, my heart sank. Despite already knowing everything in the notes, reading them took my breath away. This is real. This is really happening. When I see feces in my urine and pass gas through my urethra, I want to fix it. Would it be gross if I posted a picture on here? Do you understand what I'm dealing with? It's annoying and frustrating. On the flip side, when I have bowel movements (which have been easy and beautiful), I wonder if the times I shit out of my ass are numbered, and then my desire to fix the problem diminishes. Soon, I could be shitting in a bag, which fucking sucks because my bowel movements have been amazing since I started Remicade in May of 2016. Today it was hard to accept and harder days are coming. Unless Dr. Second Opinion has drastically different insight and results, my current colorectal plans are below:
- On Wednesday, November 29, 2017 at 1:00pm, I have a pre-op appointment with a urologist.
- On Thursday, November 30, 2017 at 9:45am, I have a pre-op appointment with my current colorectal, which may be followed by testing.
- I am awaiting a call to schedule my "tummy marking". I think it's where they tattoo dots on my belly to guide the doctor to the right spot...or maybe it's like a surgical version of connect the dots.
- On Wednesday, December 6, 2017, I have to arrive at 5am for surgery to start at 7:30am.
Sunday, October 8, 2017
My Upcoming Appointment at the Cleveland Clinic
Next Sunday, I'll be heading down to south Florida to stay the night before my appointment at the Cleveland Clinic on Monday, October 16th. Before I received an appointment reminder in the mail from the Cleveland Clinic, I was just going through the motions. This was just another appointment for me to waste time before actually having to pull the trigger and schedule surgery. Yes, I know I already did that tentatively. I wasn't expecting a different/valuable recommendation. I wasn't expecting to like the Cleveland Clinic better than my current colorectal (I'm sure you can read why in a previous post). However, the doctor listed on my appointment reminder is not the same doctor on the referral order my new gastro gave me. Go ahead, click on the links and be sure to read the first sentence under the About Steven Wexner, MD Section. I now have an appointment with the "Director of the Digestive Disease Center at Cleveland Clinic Florida and Chairman of the Department of Colorectal Surgery"!
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
I'm not sure if I should be concerned that my appointment is not with the doctor my gastro referred me to, or if it even matters. Is my prognosis so terrible that they switched me to Dr. Wexner, the Director and Chairman? I do know that I find myself having more expectations for the appointment than I did previously. Now, I'm expecting an extremely valuable recommendation. Dr. Wexner is at the top of his field! I'm actually excited about this appointment. I don't think I'm going to call my new gastro to inquire about why I'm seeing a different doctor than the one he referred me to. After October 16th, I hope to have full confidence in whichever medical/surgical path I choose to take.
Friday, September 29, 2017
I Tentatively Set a Date
I finally received the results from the drug level and antibody test. My levels were great and no antibodies were detected, which was a huge relief! Remicade has changed my life and I'm thrilled the results correlated with how well I've felt since I started taking it.
My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.
Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.
The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end. As December 6th approaches, I'm sure it will get more difficult to accept. It's already harder to accept today than it was yesterday, but that is likely because I set a date.
My second opinion appointment at the Cleveland Clinic in Weston, FL is scheduled for Monday, October 16th. I'm not sure what to expect, but I do know I'm not very optimistic about it.
Now, for the biggest announcement of this post: My bowel resection surgery has been tentatively scheduled for Wednesday, December 6th with my current colorectal. Since it's easier to cancel an appointment than it is to schedule one, I wanted to start the scheduling process so that I have a date to plan around. Even though it's highly unlikely, I might cancel the surgery date if I decide to have the second opinion colorectal operate on me instead. Currently, I'm awaiting confirmation that the urologist and my current colorectal can coordinate their schedules for that date.
The reality of surgery is slowly starting to sink in. No matter how much I hate that this is happening, there isn't anything I can do to change it. I'm stuck in this slow dance with Crohn's disease and the song will not end. As December 6th approaches, I'm sure it will get more difficult to accept. It's already harder to accept today than it was yesterday, but that is likely because I set a date.
Monday, September 18, 2017
I Couldn't Answer It
I have a confession: I may have been a coward today. Even though I have been expecting a call for 27 days from my colorectal specialist to schedule my bowel resection surgery , I did not have the courage to answer my phone when the scheduling lady called me. When I looked at the caller ID, my heart sank and my hands started to shake. I couldn't answer it.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
Sure, I'm still waiting on a prior authorization from my insurance to get a second surgical opinion with the guy my new gastro referred me to. That sounds like a good plan to waste more time. Plus, I'm still waiting on the results from the drug level and antibody test. I can't schedule surgery without knowing how much time I have to let Remicade evacuate my body so that no medicine is in my system at the time of surgery. I mean, I know my target surgery dates are far enough out for it not to matter yet, but they don't know that.
A part of me wants to call my colorectal office back to schedule the surgery and get it over with. BOOM. DONE. It would be a lot easier than having to wait around for the prior authorization that might never come or driving down to the Cleveland Clinic for a second opinion and possibly even surgery. It would simplify things by not giving me any more options to weigh. If I scheduled surgery with my current colorectal and did not get a second surgical opinion, I wouldn't have to contemplate my options any longer. I think a lot of people would judge me for not getting a second surgical opinion. I also might regret not getting a second surgical opinion, and that's why I'm still moving forward to get one. When I schedule surgery for bowel resection, I want to be as confident as I can be about it.
I haven't cried about needing a bowel resection since the first 48 hours I got the news. As hard as I took the news I have somehow accepted it. Don't let my brave face fool you, it still scares the shit out of me! But, there's no way I believe I'm a coward.
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!
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).
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.
Wednesday, April 20, 2016
Humor, Medicine, Running, and SeaWorld
When I entered the family room, I nodded my head and raised my hand with anticipation of praise as I announced, "Thank you, thank you! I trimmed my own toenails." My dad smiled wide with pride and told me to get a sticker for my sticker book. Being an adult is hard.
In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing? When did a biological medicine being infused into my vein become the best choice? According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health. I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off. Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.
My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.
My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!
In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing? When did a biological medicine being infused into my vein become the best choice? According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health. I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off. Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.
My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.
My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!
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.
Saturday, February 13, 2016
This Ass-pect of My Life Sucks
I had another visit with my colorectal specialist yesterday. It was as terrible as my last visit. A painfully traumatizing experience. Once again I was in too much pain and the doc couldn't fully loosen my stricture with her finger, so we couldn't use the scope to see what's going on. I hate being weak and I hate not being able to handle the pain. My ass is going to be bleeding for days and I'm disappointed in myself because I couldn't handle more of the torture. Damn, my ass is so sore, yet I still think that I should have been able to be tougher. I feel like I failed.
At my specialist's request, next time I have to schedule my appointment at the surgery center because I need to be sedated in order to get my stricture fully loosened. To be kinder to myself, I have lasted over three years of appointments with my colorectal specialist before having to be put under. I guess that's kind of a win. The benefit of being sedated next time is that I won't feel the pain or the trauma in the heat of the moment. I'd much rather be violated when I'm knocked out for the count. The draw back of the doc being able to do more is that it can make the recovery time longer.
She only takes appointments at the surgery center on Tuesdays, which is an important day in my payroll week at work. I'll have to talk to my supervisor to figure out which Tuesday in May I can take off. No one at work knows I have Crohn's, so I've never given too many details when I request a day off for Crohn's stuff. I feel like since I'll be sedated, I might need to give my supervisor more details in case something goes wrong. Nah, I'll just ask about taking a Tuesday off and hope my supervisor doesn't ask too many questions because talking about my butt issues at work doesn't seem very professional.
At my specialist's request, next time I have to schedule my appointment at the surgery center because I need to be sedated in order to get my stricture fully loosened. To be kinder to myself, I have lasted over three years of appointments with my colorectal specialist before having to be put under. I guess that's kind of a win. The benefit of being sedated next time is that I won't feel the pain or the trauma in the heat of the moment. I'd much rather be violated when I'm knocked out for the count. The draw back of the doc being able to do more is that it can make the recovery time longer.
Thursday, January 28, 2016
My Birthday Wish
Update: I finally got Cimzia approved through my insurance... again! Go me!!!
"How are you?" When that question is directed at me, it has got to be the most confusing question that exists in the English language. Family, friends, doctors, nurses, counselors, and co-workers alike inquire about my well being. All at different levels, of course. Nonetheless, it's up to me to figure out how I am, which is tricky.
How am I? Would "I don't know" be an acceptable answer without leading to more inquisitive questioning? How am I compared to what exactly? My "normal" seems to constantly be fluctuating. Most days, I'm not sure if my body is telling me the truth or if I am perhaps misinterpreting it all together. I don't trust my body. How can I? The bloody thing attacks itself. Hell, I was so used to constant pain in my stomach for a while that when I burned my hand pulling something out the oven a few weeks ago it didn't even hurt. It felt like a light pinch that went away quickly, but the blistering skin on my palm told another story. Burning your hand should hurt, right? I just figured the pain the burn caused must have been minimal compared to the other pain I had been experiencing, so my body didn't have a big reaction to it.
How am I? In this very moment, I'm convinced that I'm doing better. What exactly am I doing better than? I think I'm doing better than I was doing over the past three months or so because I have more energy, my bowels have been somewhat okay (there's always room for improvement, but isn't that case with most things in life?), I haven't felt pain in about two weeks, and I actually want to hang out with people. I even went for a run this week and it was beyond amazing. Sure, I'm totally out of shape and I was breathing heavy, but I didn't struggle to breath like I did during my last attempts that made me swear off running for a while. Last month I was certain Cimzia stopped working, but now I'm unsure what to think. I'm supposed to be getting lab work done in February that will tell me how I really am.
How am I? I'm pretty sure I'm still anemic because I stopped taking iron pills. I can't wait for my dr. to lecture me about that. I just couldn't handle being constipated all the time. I'm pretty sure my stricture is still super tight even though I'm hopeful my appointment with my colorectal on February 12th goes better than the last time I saw her. It's to the point where I'm actually wishing the scope for the sigmoidoscopy will fit past my stricture so that we can take a look at the disease on the screen. In order for that to happen, my doctor has to be able to get her finger up my ass, which was an agonizing problem last time even with lube. Yeah, so that's my birthday wish... being able to get fingered in the ass. Maybe I need to find a special someone that would finger my ass regularly between visits with my doctor to keep my stricture loose. Doesn't that sound like a good blurb to put on a dating website? I would do it myself, but giving myself enemas is nearly impossible as it is. It's traumatizing and I'd much rather someone else torture me than me having to do the horrific thing myself. I've always said if someone likes it in the ass, that's a sure fire way to tell they don't have Crohn's disease.
Oh, by the way, my sisters say that I must be feeling better because my humor is coming back.
"How are you?" When that question is directed at me, it has got to be the most confusing question that exists in the English language. Family, friends, doctors, nurses, counselors, and co-workers alike inquire about my well being. All at different levels, of course. Nonetheless, it's up to me to figure out how I am, which is tricky.
How am I? Would "I don't know" be an acceptable answer without leading to more inquisitive questioning? How am I compared to what exactly? My "normal" seems to constantly be fluctuating. Most days, I'm not sure if my body is telling me the truth or if I am perhaps misinterpreting it all together. I don't trust my body. How can I? The bloody thing attacks itself. Hell, I was so used to constant pain in my stomach for a while that when I burned my hand pulling something out the oven a few weeks ago it didn't even hurt. It felt like a light pinch that went away quickly, but the blistering skin on my palm told another story. Burning your hand should hurt, right? I just figured the pain the burn caused must have been minimal compared to the other pain I had been experiencing, so my body didn't have a big reaction to it.
How am I? In this very moment, I'm convinced that I'm doing better. What exactly am I doing better than? I think I'm doing better than I was doing over the past three months or so because I have more energy, my bowels have been somewhat okay (there's always room for improvement, but isn't that case with most things in life?), I haven't felt pain in about two weeks, and I actually want to hang out with people. I even went for a run this week and it was beyond amazing. Sure, I'm totally out of shape and I was breathing heavy, but I didn't struggle to breath like I did during my last attempts that made me swear off running for a while. Last month I was certain Cimzia stopped working, but now I'm unsure what to think. I'm supposed to be getting lab work done in February that will tell me how I really am.
How am I? I'm pretty sure I'm still anemic because I stopped taking iron pills. I can't wait for my dr. to lecture me about that. I just couldn't handle being constipated all the time. I'm pretty sure my stricture is still super tight even though I'm hopeful my appointment with my colorectal on February 12th goes better than the last time I saw her. It's to the point where I'm actually wishing the scope for the sigmoidoscopy will fit past my stricture so that we can take a look at the disease on the screen. In order for that to happen, my doctor has to be able to get her finger up my ass, which was an agonizing problem last time even with lube. Yeah, so that's my birthday wish... being able to get fingered in the ass. Maybe I need to find a special someone that would finger my ass regularly between visits with my doctor to keep my stricture loose. Doesn't that sound like a good blurb to put on a dating website? I would do it myself, but giving myself enemas is nearly impossible as it is. It's traumatizing and I'd much rather someone else torture me than me having to do the horrific thing myself. I've always said if someone likes it in the ass, that's a sure fire way to tell they don't have Crohn's disease.
Oh, by the way, my sisters say that I must be feeling better because my humor is coming back.
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.
Thursday, October 16, 2014
The Abscess is Gone
It's been three weeks since I got my first abscess. I endured two weeks of heavy antibiotic treatment. My bowel movements still aren't back to normal. Giving antibiotics to someone with IBD seems like cruel and unusual punishment. I guess the punishment was worth it though. Today, at my follow up appointment with my colorectal specialist, I had another rectal exam where Dr. Mueller concluded that the abscess is gone! It's such a huge relief to get the all clear. Even though I knew I wasn't in pain anymore, I'm always second guessing my body because it doesn't always know what it's telling me. "The abscess is gone." Those words were music to my ears. She actually seemed pretty surprised that the antibiotics took care of the abscess and I didn't have to visit her before my follow up. She also made it clear that if I ever think another abscess is forming I'm to contact her first asap. Yeah, uh-huh, sure lady whatever you say. There better not be another one! The thought of another abscess in the future freaks me out because I know when I see her first that I'll likely end up in surgery. I hope I never have to find out if antibiotics that make me feel like death are better or not than having surgery.
During the exam Mueller loosened my tight anus/rectum with her finger. I didn't think anything of it at the time. It felt as uncomfortable as I'm accustomed to it feeling. However, when I got home and had tons of blood in my stool, I wondered what the heck she did inside there. Sure, I'm used to some blood occasionally, but this wasn't even "normal" for me. I'm patiently waiting to having another BM to see if it's cleared up or not. I'm not in any pain, so it can't be that bad, right?
During the exam Mueller loosened my tight anus/rectum with her finger. I didn't think anything of it at the time. It felt as uncomfortable as I'm accustomed to it feeling. However, when I got home and had tons of blood in my stool, I wondered what the heck she did inside there. Sure, I'm used to some blood occasionally, but this wasn't even "normal" for me. I'm patiently waiting to having another BM to see if it's cleared up or not. I'm not in any pain, so it can't be that bad, right?
Wednesday, October 1, 2014
Abscess
Tuesday was a crazy day. I answered the 100 questions on my Real Estate Valuation and Appraisal mid-term in 35 minutes. I got a 94%! My brain does apparently work! Thankfully, since I finished the exam quickly, I didn't have to rush my enemas. So, I was able to enjoy them, right? NO!!! Have you ever tried to give a swollen-ish asshole an enema? It's not easy, nor was it pleasant.
After that was over with I had some time to relax before heading to the colorectal specialist with my mom. While I relaxed I learned I got an 82% on the portfolio analysis exam I took last week when this all started going down. I was disappointed, but when I learned I got to add a 4 point curve to bring it up to an 86% it was a bit easier to swallow.
I arrived to the colon & rectal clinic early, but still ended up waiting an hour after my appointment time before being called back. As usual I was the youngest person there. The waiting room was filled with mostly old men. In order to pass time, I pondered why everyone was there. I concluded old men just have bad butts. I was surprised I weighed in at 151lbs! That's fantastic considering on Friday I was down to 146lbs. I told the nurse what Mike Jolly said on Friday and she wrote down notes for Dr. Renee Mueller, my colorectal specialist. Mueller came in and asked some questions before the nurse came back in to prepare me for yet another rectal exam. Two rectal exams in less than a week. This has to be some kind of hell, right?
I dropped my underwear and pants to my ankles, knelt on the lower part of the table for my knees (while sitting on the table this is where my feet rest), and then I leaned forward to lay my stomach on the regular part of the table where a healthy person would sit their butt. Once I was in position, the nurse flipped the switch to move the table so that my butt was higher in the air and my head was lower to the ground. It's quite an experience, but I understand why it's not a ride at Disney. Mueller didn't insert the scope, she just probed around with her gloved finger. So happy her fingers are thinner than Jolly's. The probing still hurt like crazy though. Probably because there's still inflammation down there. To my surprise she didn't find any sign of a fistula. She found the abscess, which she had trouble examining because it begins in my labial majora and tracks to the anus.
After I got dressed, Mueller came back in to discuss what she found during the exam. The good news is there isn't a fistula. The bad news is that even though the abscess is in part of a vaginal area (labial majora), it's most definitely related to Crohn's disease. Mueller said that if I would have seen her on Friday that she would have sent me directly to the operating room to have the abscess drained. However, since it seems to be improving with the antibiotics she's going to see me in two weeks once I'm off the antibiotics to see how it's doing. If it gets worse or stops improving before it's completely healed, I'm supposed to call her and she'll take me to the operating room. The recovery time would be two to three weeks. That would devastate me right in the middle of this semester. I don't want to have to explain that "surgery" to three different professors.
I feel like I dodged a huge bullet and it's looking promising that I'll make it out without having to go under the knife.
After that was over with I had some time to relax before heading to the colorectal specialist with my mom. While I relaxed I learned I got an 82% on the portfolio analysis exam I took last week when this all started going down. I was disappointed, but when I learned I got to add a 4 point curve to bring it up to an 86% it was a bit easier to swallow.
I arrived to the colon & rectal clinic early, but still ended up waiting an hour after my appointment time before being called back. As usual I was the youngest person there. The waiting room was filled with mostly old men. In order to pass time, I pondered why everyone was there. I concluded old men just have bad butts. I was surprised I weighed in at 151lbs! That's fantastic considering on Friday I was down to 146lbs. I told the nurse what Mike Jolly said on Friday and she wrote down notes for Dr. Renee Mueller, my colorectal specialist. Mueller came in and asked some questions before the nurse came back in to prepare me for yet another rectal exam. Two rectal exams in less than a week. This has to be some kind of hell, right?
I dropped my underwear and pants to my ankles, knelt on the lower part of the table for my knees (while sitting on the table this is where my feet rest), and then I leaned forward to lay my stomach on the regular part of the table where a healthy person would sit their butt. Once I was in position, the nurse flipped the switch to move the table so that my butt was higher in the air and my head was lower to the ground. It's quite an experience, but I understand why it's not a ride at Disney. Mueller didn't insert the scope, she just probed around with her gloved finger. So happy her fingers are thinner than Jolly's. The probing still hurt like crazy though. Probably because there's still inflammation down there. To my surprise she didn't find any sign of a fistula. She found the abscess, which she had trouble examining because it begins in my labial majora and tracks to the anus.
After I got dressed, Mueller came back in to discuss what she found during the exam. The good news is there isn't a fistula. The bad news is that even though the abscess is in part of a vaginal area (labial majora), it's most definitely related to Crohn's disease. Mueller said that if I would have seen her on Friday that she would have sent me directly to the operating room to have the abscess drained. However, since it seems to be improving with the antibiotics she's going to see me in two weeks once I'm off the antibiotics to see how it's doing. If it gets worse or stops improving before it's completely healed, I'm supposed to call her and she'll take me to the operating room. The recovery time would be two to three weeks. That would devastate me right in the middle of this semester. I don't want to have to explain that "surgery" to three different professors.
I feel like I dodged a huge bullet and it's looking promising that I'll make it out without having to go under the knife.
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