I'm going to do things a bit differently for this post. I really want to highlight just how long it takes in this medical system to get an issue/new symptom resolved. With turn around time, wait times, and appointments to discuss next steps, it can (and usually does) take months to resolve a new issue. So, for this purpose my post will be an update, however it will be done in Chronological order. I will breeze through Dec/Jan/Feb because I have a whole detailed post on that here, but for the rest I will be more specific.
December: Mid December I begin to get a new pain in my stomach. At first it comes and goes, and often my entire stomach hurts. I brush this off as a transient symptom, and try to trudge through.
January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.
February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.
March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.
So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link
April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.
Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.
We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).
Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.
In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.
If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.
xoxo,
Christina
January: Things during this month only amplify. The pain becomes much more severe and much more difficult to predict or control. It's all complicated because I find I am fighting C.Diff, so a lot of the pain gets pawned off as being placed under the column of "probably from C. Diff." I knew however that there had to be more to it. Often it was hard to point to just one area of pain, because so many things hurt in so many different ways. I have had C.Diff in the past, and it's never hurt quite like this before. This felt like a very new thing to me.
February: Around this time I have blood testing done & it seems to look like some of the pain is due to Sphincter of Oddi dysfunction. This again is something I had dealt with in the past on a few occasions since I no longer have a gallbladder. In a way it felt familiar but, this time it was SO much more severe, and the location of the pain epi-center moved. I began to eat a liquid diet, and then a low fat diet which wouldn't trigger the attacks. This however did not seem to be the smoking gun. At the end of February I had an ultrasound done. The ultrasound was inconclusive. The only thing it showed was a more dilated common bile duct. This can be larger when you have Sphincter of Oddi, or have a removed gallbladder, so while it answered some suspicions it did not really give a solid answer. I did not quite fit into the box of this being primarily SOD, or just SOD.
March: I know how absurd this can sound to an outsider reading this post. How hard is it for me to point to a source of pain and figure it out? I ask myself the same thing all the time, but it simply is not that easy. I had (have) pain absolutely everywhere (remember C.Diff). Then I had an epicenter of pain which covered a quadrant, and it was large enough that I could not tell where it was coming from: my pancreas, my large intestine (transverse), my small intestine, or my stomach. I have a very tiny frame, and it is all packed in there. Often times it felt like multiple things were spasming or hurting at once. On any given day my "guess" of what was hurting would change. I absolutely did not know, and guessing was just driving me mad.
So, finally, around the edge of March I was approved for an abdominal X-Ray. However, after the X-Ray it took some time to get the proper radiologist to read it and give his report. I would say there was about 10 days while I was waiting to get some answers. This was probably the most helpful scan of them all, because it visibly showed three issues in the area where I had my most pain. The most notable takeaways were that a portion of my transverse colon was tightly spasming, not only causing pain but also not allowing things to move through that area properly. A little bit below that was an area in my small intestine which looked to show some bowel wall thickening. So, what the heck is going on? I mean, I got some answers, but the X-Ray can only show so much, and a more detailed scan was needed to find the cause and link
April: It's now April. I am still in a lot of pain, my large intestine feels inflamed and raw almost 24/7, and with each passing week/month I can eat less and less food. Eating too much solid food too many days in a row will bring pain, because once it reaches that tight portion of my large intestine it has difficulty passing through. So I begin to alternate liquid diets in between actual food. Because of this I often feel like I am starving. Also, not only has solid food become problematic, but a lot of my usual safe foods are causing me extreme pain. I would eat what should be an okay food, only to have about 2 days of stomach pain in so severe I can hardly move. It's getting more important than ever to get answers to rule out something more sinister. At this point I am not against exploratory surgery because the pain is that unpredictable and that bad.
Finally, we move on to the next step, which is a CT scan. Due to my MCS I am allergic to the contrast solution, so I received an abdominal CT without contrast. We were aware that this might prove to be less than ideal without contrast, but the plan was to start here and repeat with contrast (and steroids) if necessary. I got the CT scan done, and surprise surprise, it was inconclusive. The lack of contrast not being able to highlight certain areas made a set diagnosis impossible.
We are now almost to May, and we have to change directions a bit. All of these tests I have had ran (many which I did not even list) are very expensive. Insurance is not only slow, but also notorious for denying claims. Due to financial costs another CT is not in the cards. For now it is on the back burner as we start to pursue answers from a different avenue. Although still extremely costly, we began with a laundry list of blood work, specialized panels and cultures, as well as CSA's from a few different companies. A large portion of this is out of pocket, and just to give an example the CDSA 2.0 test is $700 out of pocket, the Geneva Labs CSA with Parasitology is $500 out of pocket, my MRT intolerance test was $700 out of pocket, and the Array 10 is $1,300. Out of pocket... all of it. I know I have said this before but it is legitimately survival of those who can afford it. And in my case I have had to choose wisely and also spread tests out, because its an impossible cost burden all at once. But, if I need answers, how else can I get them? How else can anyone get them? I also got a lot of blood-work done through insurance, which will have co-pays and deductibles, and I can hardly wait to receive that bill in the mail and promptly faint (ha).
Now: Waiting. Waiting for results, waiting for more test kits, and waiting to be able to order other tests I need. In the mean time I am fighting this pain which waxes and wanes in intensity on any given day. I am diligently keeping a food diary to find triggers, and I am hoping beyond hope that some conclusive answers come.. soon. In the mean time I only found one thing which takes the edge off and it's called Bentyl. My friend Hannah calls it "tummy valium" and I laugh because that is so spot on! The side effects of Bentyl however are not great, including feeling woozy, dizzy, sometimes nauseous etc. So, I reserve it for times of great need. It helps to calm that tense spasm in my large intestine, and any tiny bit of relief helps.
In the mean time I am really trying to enjoy my good moments, and my better days. When I have a chance to find some joy in my day I really focus on it. I don't want to let this sink me or take my spirit. It's almost May and I feel just as baffled today as I did back in December. The health care system moves so slow, and I am sometimes baffled as to how many months of my life can go by in a flash while desperately investigating. Keep in mind, I am actually a "lucky case" because my mother is a physician who can help fast track some things. Yes, THIS is what it looks like to have things fast tracked. I suspect, judging on what tests are still to come, their turn around time etc that I still have at least a month or two ahead of me before I will have more clarity. It is a waiting game, and a coping game. I try my best to put my attention elsewhere, especially on bad days. I know I have pretty much retreated from the people around me recently, but it feels impossible to connect sometimes through the pain. But, alas, I'm trying.
If you made it this far, thank you for reading! I hope this post provided a small amount of insight into navigating the medical system, the kinds of costs incurred, and why it takes so long to get answers. I hope to have a better grasp on this soon, and of course when I do I will absolutely share.
xoxo,
Christina
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