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.
Showing posts with label barium enema. Show all posts
Showing posts with label barium enema. Show all posts
Wednesday, August 9, 2017
Monday, July 24, 2017
Rescheduled Barium Enema
SimonMed called me this morning to reschedule my barium enema appointment because their imaging machine was not working. Thankfully, they called before I started taking laxatives for the prep. They wanted to reschedule for the end of this week, but with work, the charity event, and Taylor coming into town, I rescheduled it for Monday, July 31st instead.
A huge sense of relief came over me after I rescheduled my appointment. I could breathe a little deeper...until anxiety hit me again. My nerves are on edge. I have that weighted feeling in my chest and gut that won't go away. I think it's fear. I'm afraid my self diagnosis is correct. I'm terrified the solution is going to require surgery. I'm worried surgery/recovery is going to interfere with my running schedule. I just can't shake the feeling that I'm going to have to say goodbye to the good(ish) days far sooner than I had hoped. I am mentally preparing for the worst and it's freaking me out.
I've started rationalizing the idea that I could postpone surgery, if surgery is required, until January after all of my races. This would also give more time to reach my out of pocket max and I get five more sick PTO days at work at the beginning of the year. So far, my doctors don't seem to be in any hurry to figure this shit out. If they can take their sweet time in figuring out what's going on, it must not be that serious. By the time I get "answers", it's going to be mid August. I know it's naïve to think I am actually going to get answers. With chronic illness, most of the time I think the doctors are guessing just as much as I am.
A huge sense of relief came over me after I rescheduled my appointment. I could breathe a little deeper...until anxiety hit me again. My nerves are on edge. I have that weighted feeling in my chest and gut that won't go away. I think it's fear. I'm afraid my self diagnosis is correct. I'm terrified the solution is going to require surgery. I'm worried surgery/recovery is going to interfere with my running schedule. I just can't shake the feeling that I'm going to have to say goodbye to the good(ish) days far sooner than I had hoped. I am mentally preparing for the worst and it's freaking me out.
I've started rationalizing the idea that I could postpone surgery, if surgery is required, until January after all of my races. This would also give more time to reach my out of pocket max and I get five more sick PTO days at work at the beginning of the year. So far, my doctors don't seem to be in any hurry to figure this shit out. If they can take their sweet time in figuring out what's going on, it must not be that serious. By the time I get "answers", it's going to be mid August. I know it's naïve to think I am actually going to get answers. With chronic illness, most of the time I think the doctors are guessing just as much as I am.
Sunday, July 23, 2017
I Will Keep Going
The week I have ahead of me is daunting. Despite my intentions not to, I am stressing about my upcoming week. My sisters listen to a podcast and one of many phrases it's known for is "This is terrible. Keep going." Although I'm taking it out of the podcast's context, I am using the phrase as my motto for the week. There's no point in lying to myself about how shitty this week is likely to be. It's going to be a terrible week, but I am determined to keep going. I am not in the mood to see the bright side of things this week.
On Monday, July 24th, I will begin the preparation for my Barium Enema. The prep consists of a clear liquid diet, drinking two 10oz bottles of magnesium citrate, and taking two ducolax tablets. I will be leaving work around 2PM to go home and start the magnesium citrate and ducolax part of the prep.
On Tuesday, July 25th, my friend, Lynn, is picking me up in the morning and taking me to my Barium Enema. I am still thankful for how amazingly caring my new running friends are. I couldn't have hand picked a better group of people. This is the day I am most stressed about. Even though I won't get the results of this test until August 11th, I'm nervous because this test should be able to provide answers as to why feces are in my urine and why gas is passing through my urethra. I'm not a doctor, but in my opinion I think it's a fistula causing a problem and the solution is going to require surgery. During the Barium Enema, I may experience a feeling of fullness, moderate to severe cramping, the urge for a bowel movement, and general discomfort. Yes, I'm awake for the procedure. Now, you can understand why I didn't want to lie to myself about this week being terrible. Hopefully, afterwards I'll feel okay to go to work because I have a lot to get done there.
I don't really know how I will feel during the days following the Barium Enema, but life hasn't really provided me the time to rest. I will be working my ass off at work to make up time so that I can save my sick time in case I need to use it for surgery. I was invited to a prestigious Water for People, Everyone Forever charity event after work on Thursday. Their Mission: "Water For People exists to promote the development of high-quality drinking water and sanitation services, accessible to all, and sustained by strong communities, businesses, and governments." It's a great networking opportunity that I couldn't turn down. Literally, I felt obligated to go. If it was any other week, I would be excited. However, since it's this week, I just hope I feel well enough to enjoy it and take advantage of it. The company I work for is well known for its work in water/wastewater, so we donated generously to the Water for People mission at the same sponsorship level as OUC. My company hand selects a limited number of attendees from our company to represent us at the charity event and network with other like minded individuals in our community.
Taylor is coming into town the same night as the charity event. I am just way too stressed this week, so I gave up on trying to buffer between my mom and her. I am not going to be home when she arrives. I know it's hard on her when my mom is openly rude and unhospitable, but I just don't have the energy to shelter her from my mom. I should be more excited about Taylor's visit, but the other events of this week along with my mom are stressing me out. Don't take it personally if my mom doesn't like you, I know I don't take it personally. In fact, I would say I've grown accustomed to my mom not liking me. My mom is also unpredictable, so maybe she'll have an uncharacteristically nice day. My words of advice: avoid conflict, ignore ignorance, kill her with kindness even if its fake. I get to hang with Taylor after work on Friday and after my run on Saturday! I'm going to try to be good company and enjoy our time together. Although, at the moment my head is elsewhere.
On Monday, July 31st, I have an office appointment with my gastro, which I have a feeling will be a pointless appointment. My perspective of my gastro is that he is only good to write prescriptions, not to provide answers or care. I look forward to being disappointed and frustrated after this appointment because healthcare sucks.
On Monday, July 24th, I will begin the preparation for my Barium Enema. The prep consists of a clear liquid diet, drinking two 10oz bottles of magnesium citrate, and taking two ducolax tablets. I will be leaving work around 2PM to go home and start the magnesium citrate and ducolax part of the prep.
On Tuesday, July 25th, my friend, Lynn, is picking me up in the morning and taking me to my Barium Enema. I am still thankful for how amazingly caring my new running friends are. I couldn't have hand picked a better group of people. This is the day I am most stressed about. Even though I won't get the results of this test until August 11th, I'm nervous because this test should be able to provide answers as to why feces are in my urine and why gas is passing through my urethra. I'm not a doctor, but in my opinion I think it's a fistula causing a problem and the solution is going to require surgery. During the Barium Enema, I may experience a feeling of fullness, moderate to severe cramping, the urge for a bowel movement, and general discomfort. Yes, I'm awake for the procedure. Now, you can understand why I didn't want to lie to myself about this week being terrible. Hopefully, afterwards I'll feel okay to go to work because I have a lot to get done there.
I don't really know how I will feel during the days following the Barium Enema, but life hasn't really provided me the time to rest. I will be working my ass off at work to make up time so that I can save my sick time in case I need to use it for surgery. I was invited to a prestigious Water for People, Everyone Forever charity event after work on Thursday. Their Mission: "Water For People exists to promote the development of high-quality drinking water and sanitation services, accessible to all, and sustained by strong communities, businesses, and governments." It's a great networking opportunity that I couldn't turn down. Literally, I felt obligated to go. If it was any other week, I would be excited. However, since it's this week, I just hope I feel well enough to enjoy it and take advantage of it. The company I work for is well known for its work in water/wastewater, so we donated generously to the Water for People mission at the same sponsorship level as OUC. My company hand selects a limited number of attendees from our company to represent us at the charity event and network with other like minded individuals in our community.
Taylor is coming into town the same night as the charity event. I am just way too stressed this week, so I gave up on trying to buffer between my mom and her. I am not going to be home when she arrives. I know it's hard on her when my mom is openly rude and unhospitable, but I just don't have the energy to shelter her from my mom. I should be more excited about Taylor's visit, but the other events of this week along with my mom are stressing me out. Don't take it personally if my mom doesn't like you, I know I don't take it personally. In fact, I would say I've grown accustomed to my mom not liking me. My mom is also unpredictable, so maybe she'll have an uncharacteristically nice day. My words of advice: avoid conflict, ignore ignorance, kill her with kindness even if its fake. I get to hang with Taylor after work on Friday and after my run on Saturday! I'm going to try to be good company and enjoy our time together. Although, at the moment my head is elsewhere.
On Monday, July 31st, I have an office appointment with my gastro, which I have a feeling will be a pointless appointment. My perspective of my gastro is that he is only good to write prescriptions, not to provide answers or care. I look forward to being disappointed and frustrated after this appointment because healthcare sucks.
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.
Sunday, July 2, 2017
Crohn's is Back!
I have not been looking forward to writing this post. I kept postponing it in the hopes symptoms would cease. Crohn's is back! There we go, I said it. While my doctors never said I was in remission, I was doing extremely well and it certainly felt like Crohn's was in remission. For the past few weeks, I've been experiencing blood and mucus in my stool along with going to the bathroom more frequently. Occasional pain, but thankfully the pain has been manageable. Fatigue is showing its ugly head. Tiredness is haunting me. Running is hard.
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
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