If you chuckled at the title of this post then you get a gold star! Oh how I love the Wizard of Oz, I couldn't resist a little play on words! And also, whoa am I long overdo for an update post. I know I won't be able to include everything because as most of you know there are usually about 100 things going on at once. But, I'm going to just focus on the most recent and most asked about topics now. In many ways I am improving, so it's not all doom and gloom. Sometimes these update posts can seen a little more of a downer, but honestly I feel with each little hiccup I learn something new to add to my arsenal and ultimately move me towards the final goal of complete healing.
I'm going to break this post down into sections by topic, mostly because it's a lot of info that isn't all that cohesive, and also because some people might only be interested in one aspect or another.
Crohns
Last year I wrote my post about learning that I had developed Crohn's disease, and I said that I would update this blog as I learn ways to manage it etc. Well, truthfully that took a whole lot longer than I expected and I still don't have a perfect grip on it. I had to learn my Crohn's triggers which were way different than just a food intolerance (which can be easier for me to identify). I noticed right off the bat that dairy was a hard no, and although I can get away with some cheese sometimes it has to be very low in whey and lactose (such as cheddar). A heavy cheese like mozzarella is a huge no-no, as is milk or butter. With each trigger I removed it was like a weight was lifted off of me and I was one step closer to taking the damaging inflammation down a notch. For many Crohn's patients fixing their diet is enough to put them into remission. This isn't always the case of course, but for a large swath of patients it does a lot of good so I couldn't ignore it. I finally also learned that yeast was a huge trigger, and actually it was probably the biggest. Many years ago I cut out yeast on the anti-inflammatory diet and I was yeast free for at least 3-4 years. But then I added it back on occasion for things like cinnamon rolls, croissants & other bready foods which require it. It went fine and dandy for a long while, but I didn't realize what a large trigger it was for Crohn's until I did some research. I learned about something called ASCA. What's that you ask? Well..
From Lab Tests Online: The test for anti-Saccharomyces cerevisiae antibodies (ASCA) is used to help distinguish between Crohn disease (CD) and ulcerative colitis (UC), the two most common types of inflammatory bowel disease (IBD). Testing usually includes detecting two different classes of ASCA in the blood, IgG and IgA.
I had actually had this test ran as a part of my Crohn's testing and my antibodies were very high. This means that I have a lot of antibodies created against Saccharomyces Cerevisiae, which just so happens to be the same yeast that makes bread rise. When I eat yeasted food those antibodies attack, and the level of inflammation and damage in my colon grows exponentially. It wasn't until I cut out yeast cold turkey that I felt a huge difference and realized what a large trigger it is for me. That alone was a really big key that believe it or not took way longer to realize than you'd imagine. Some other triggers common with Crohn's that also applied to me are small seeds and nuts, as well as FODMAP's like onions and garlic. None of these came up on any kind of food intolerance testing, because they don't create an IgG or IgA mediated response, but rather it irritates the Crohn's disease itself and sets off a flare. So it took a whole lot of trial and error and food charting to get a grasp at what was keeping the disease so activated. Once I slowly learned and eliminated the worst offenders I got a semblance of my sanity back. At the time I was diagnosed with Crohn's I was eating about 4-5 foods safely and that's it. I lived on liquid shakes and was in agonizing stomach pain around the clock. I'd say diet was my first big step in the positive direction, and I would also say it took me a good 8-10 months to fully understand all of my triggers.
In terms of having Crohn's in remission that hasn't happened yet, although I have had stretches where things calmed down a great deal. It fluctuates between feeling better/healing or having something trigger it like stress or eating a food I'm not ready for (more on that later) and going into a flare. Treatment wise I have tried a lot, and none of it was traditional steroids due to having Lyme disease and it being too risky. I will do a separate post on this but the most success I've seen has been with immunotherapy, which has been a real God-send in helping my overreacting immune system to calm down. Crohn's is autoimmune in nature and it caused me to have so many severe food intolerances and sensitivities that almost everything hurt to eat. These were your standard food intolerances where when I ate something my body didn't like (which was almost everything), my mast cells freaked out and released a ton of histamine into my body. Immunotherapy is what allowed me to go from eating 4-5 foods to having the wider ranging diet I have now. While I haven't tackled my Crohn's triggers like dairy, yeast or eggs, I have tackled many food intolerances and have been able to broaden what I can eat which has been a huge blessing. Immunotherapy is a very slow process, but I hope to keep seeing benefits. I've had to stop and take breaks from it a few times along the way due to unforeseen circumstances (many which I discuss below), so it's taking me longer than expected. But any step in the right direction is important to me. I will make a whole list of non-pharmaceutical items which have helped my Crohn's because I have tried a lot of things and quite a few have been amazingly useful. So if that area interests you, whether you have Crohn's or just struggle with tummy troubles then keep an eye out for that post soon!
PT & OT
Being bed-bound does so much damage to the joints & muscles, and I didn't realize that until I noticed how many parts of my body hurt when I did every day regular movements. Doing something as simple as sliding my right foot forwards and backwards made my knee pop and cause searing pain. Stretching to scratch my back would make my whole back seize up and lock up. Many people think that when you feel a little better you just go back to every day life and boom all your muscles come back and everything is fine. That however is not the case. Many of the small muscles you don't even think about can atrophy from being unused and won't build up properly unless you help it along. An example I give is if you have ever been skiing think about how sore you were the next day. Skiing uses muscle groups you don't really make use of in day-to-day life and in order to become a skier you need specialized training and practice to strengthen those up. The same goes for me. So many of my muscle groups have atrophied and just walking around won't fix it. However, doing the wrong exercises and just jumping back in with the wrong work-out can create irreparable damage too. You need to know which muscles have atrophied in a way that it pulled other bones or ligaments out of proper alignment and that has to be fixed first. My entire body is out of alignment from years spent curled up in a ball with my heating pad from abdominal pain. My hips, my knees, my spine, you name it! Doing PT and OT has been very slow and steady, and I don't have anything big to report just yet, but I've only been doing it since May with a brief hiatus in July (more on that below). The purpose of PT and OT isn't to get buff, it's to heal and strengthen the weak areas of my body damaged by atrophy that is causing me daily pain. I'll see more results as the months pass by and I'll keep this updated!
C Difficile
C-Difficile has become my biggest nemesis, and the fact that most standard sanitizers in the healthcare industry don't kill the spores is something that still makes me mad. (What is C-Diff?) Being immune compromised like I am means having to take incredibly careful precautions to make sure everything around me is sterile. I am a clean freak through and through. However I can only control that on my end, and I don't have any control of what other people do or don't do. This mostly applies to people in the healthcare industry because they clean their devices such as thermometers and blood pressure cuffs with alcohol based wipes which do not kill C-Diff spores. I appreciate that they kill things like the flu virus, but all it takes is one tiny c-diff spore to infect someone. When you have a low immune system you know it is inevitable to pick up illnesses when you mingle with those from the outside world. I am super duper cautious, often going above and beyond, but situations out of my control led me to pick up C- Difficile yet again. I say 'yet again' because this is my 4th rodeo with it since my first bought in 2013. The first time I had it I wrestled with eliminating it for over 6 months but then I stayed clear for a long while. I then had one in 2015, and one in 2016 into early 2017. I was clear for over a year until low and behold I picked it up again very recently. It took me a pretty long time to realize it was c-diff and not just a Crohn's flare up (2 weeks to be exact). During that time it did a lot of damage to my already damaged mucous membranes, and it's really dangerous to have on top of Crohn's, so this has been a real adventure to say the least! C Diff is notorious for being difficult to kill, and because of how much it weighs down my immune system I couldn't do my immunotherapy at the same time. My treatment protocol to completely eradicate the C Diff is a 2 month treatment + a follow up 10-20 week pulsing to make sure that no spores comes back. I have faith that if I am diligent I can heal all the damage it caused in my colon. I also want to do a post on everything you need for C.Diff including cleaners you must use that kills the spores etc. So many post ideas, so little time!
Pericarditis
The last of the recent life updates is another rather bizarre situation I had in July. It came on rather suddenly one night then I awoke to feeling like I couldn't catch my breath. I am used to having air hunger, which is a sensation of not being able to breathe but when you check your blood oxygen saturation it's A-ok. This trick helps me know its just a sensation and while it's uncomfortable I know it isn't life threatening. However, this time when I checked my oxygen levels they were down to 93 (normal is 98/99). I also felt like I couldn't get air in or out properly and I had a weight on my chest. Eventually I got back to sleep and had hoped it was just a weird fluke, but as the days passed it only got worse. I felt like someone was sitting on my chest, my chest hurt, breathing was difficult, and I got out of breath chewing my food or trying to speak. My oxygen levels dropped to 89 and I felt both terrified and miserable. At this point we knew it wasn't just some "weird Lyme thing" and this was actually something which needed attention asap. First things were ruled out like a PE or anemia, and when those came back clear I had other further testing with X-ray, echocardiograms, EKG and Spirometry. Let me tell you, I do not miss endless testing and worrying! But I did get an answer to what was plaguing me and it was Pericarditis. Pericarditis is an inflammation of the sac around the heart, most often caused by a viral infection. And while I had an answer there wasn't anything else I could do but take anti-inflammatory meds and wait it out with rest and plenty of hydration. The virus tends to run its course in 2-3 weeks, which isn't too long, but when you are living it then it can feel like an eternity. Things like eating or speaking were painful and difficult. I had to get help with showers and afterwards it took me hours to recover because with the low oxygen levels all the blood would leave my arms and legs upon exertion and go numb. I would lay flat after minimal walking and feel my arms and legs be ice cold, tingle, and be numb while I was also very faint. It was the strangest feeling, and it kept me in a state of panic almost constantly. It really wasn't until about 2.5 weeks in that I felt the first signs of the fog lifting. From there it was a more steady improvement and by the 1 month mark I felt back to normal.
Pericarditis is not really a common thing to pick up, so it was a strange experience and it reminded me to be grateful for my immune system. Since I had the C-Diff I had an even lower than usual immune system, and that left me open to further infections despite my precautions. This experience reminded me that while my immune system is usually a bit more fragile, I would definitely take that over the situation I had with C-diff and Pericarditis at the same time. When I had 2 infections at once pulling my body down it was unsettling to know that I had very little natural defenses left to protect me. That was a scary feeling, and it reminded me that my normal, slightly subpar immune system isn't so bad after all! It's all about perspective.
And that puts us at now. I am diligently taking my meds for C Diff and hopefully after that I will be able to ease back into the immunotherapy to help repair some damage left behind in my colon from this infection. I'll try to do more update posts so it isn't all so jam packed next time, but this was just meant to be a quick update of new things which I haven't had a chance to discuss or share yet. So while it wasn't all encompassing I hope it was useful to those of you who so kindly follow along!
xoxo,
Christina
I'm going to break this post down into sections by topic, mostly because it's a lot of info that isn't all that cohesive, and also because some people might only be interested in one aspect or another.
Crohns
Last year I wrote my post about learning that I had developed Crohn's disease, and I said that I would update this blog as I learn ways to manage it etc. Well, truthfully that took a whole lot longer than I expected and I still don't have a perfect grip on it. I had to learn my Crohn's triggers which were way different than just a food intolerance (which can be easier for me to identify). I noticed right off the bat that dairy was a hard no, and although I can get away with some cheese sometimes it has to be very low in whey and lactose (such as cheddar). A heavy cheese like mozzarella is a huge no-no, as is milk or butter. With each trigger I removed it was like a weight was lifted off of me and I was one step closer to taking the damaging inflammation down a notch. For many Crohn's patients fixing their diet is enough to put them into remission. This isn't always the case of course, but for a large swath of patients it does a lot of good so I couldn't ignore it. I finally also learned that yeast was a huge trigger, and actually it was probably the biggest. Many years ago I cut out yeast on the anti-inflammatory diet and I was yeast free for at least 3-4 years. But then I added it back on occasion for things like cinnamon rolls, croissants & other bready foods which require it. It went fine and dandy for a long while, but I didn't realize what a large trigger it was for Crohn's until I did some research. I learned about something called ASCA. What's that you ask? Well..
From Lab Tests Online: The test for anti-Saccharomyces cerevisiae antibodies (ASCA) is used to help distinguish between Crohn disease (CD) and ulcerative colitis (UC), the two most common types of inflammatory bowel disease (IBD). Testing usually includes detecting two different classes of ASCA in the blood, IgG and IgA.
I had actually had this test ran as a part of my Crohn's testing and my antibodies were very high. This means that I have a lot of antibodies created against Saccharomyces Cerevisiae, which just so happens to be the same yeast that makes bread rise. When I eat yeasted food those antibodies attack, and the level of inflammation and damage in my colon grows exponentially. It wasn't until I cut out yeast cold turkey that I felt a huge difference and realized what a large trigger it is for me. That alone was a really big key that believe it or not took way longer to realize than you'd imagine. Some other triggers common with Crohn's that also applied to me are small seeds and nuts, as well as FODMAP's like onions and garlic. None of these came up on any kind of food intolerance testing, because they don't create an IgG or IgA mediated response, but rather it irritates the Crohn's disease itself and sets off a flare. So it took a whole lot of trial and error and food charting to get a grasp at what was keeping the disease so activated. Once I slowly learned and eliminated the worst offenders I got a semblance of my sanity back. At the time I was diagnosed with Crohn's I was eating about 4-5 foods safely and that's it. I lived on liquid shakes and was in agonizing stomach pain around the clock. I'd say diet was my first big step in the positive direction, and I would also say it took me a good 8-10 months to fully understand all of my triggers.
In terms of having Crohn's in remission that hasn't happened yet, although I have had stretches where things calmed down a great deal. It fluctuates between feeling better/healing or having something trigger it like stress or eating a food I'm not ready for (more on that later) and going into a flare. Treatment wise I have tried a lot, and none of it was traditional steroids due to having Lyme disease and it being too risky. I will do a separate post on this but the most success I've seen has been with immunotherapy, which has been a real God-send in helping my overreacting immune system to calm down. Crohn's is autoimmune in nature and it caused me to have so many severe food intolerances and sensitivities that almost everything hurt to eat. These were your standard food intolerances where when I ate something my body didn't like (which was almost everything), my mast cells freaked out and released a ton of histamine into my body. Immunotherapy is what allowed me to go from eating 4-5 foods to having the wider ranging diet I have now. While I haven't tackled my Crohn's triggers like dairy, yeast or eggs, I have tackled many food intolerances and have been able to broaden what I can eat which has been a huge blessing. Immunotherapy is a very slow process, but I hope to keep seeing benefits. I've had to stop and take breaks from it a few times along the way due to unforeseen circumstances (many which I discuss below), so it's taking me longer than expected. But any step in the right direction is important to me. I will make a whole list of non-pharmaceutical items which have helped my Crohn's because I have tried a lot of things and quite a few have been amazingly useful. So if that area interests you, whether you have Crohn's or just struggle with tummy troubles then keep an eye out for that post soon!
PT & OT
Being bed-bound does so much damage to the joints & muscles, and I didn't realize that until I noticed how many parts of my body hurt when I did every day regular movements. Doing something as simple as sliding my right foot forwards and backwards made my knee pop and cause searing pain. Stretching to scratch my back would make my whole back seize up and lock up. Many people think that when you feel a little better you just go back to every day life and boom all your muscles come back and everything is fine. That however is not the case. Many of the small muscles you don't even think about can atrophy from being unused and won't build up properly unless you help it along. An example I give is if you have ever been skiing think about how sore you were the next day. Skiing uses muscle groups you don't really make use of in day-to-day life and in order to become a skier you need specialized training and practice to strengthen those up. The same goes for me. So many of my muscle groups have atrophied and just walking around won't fix it. However, doing the wrong exercises and just jumping back in with the wrong work-out can create irreparable damage too. You need to know which muscles have atrophied in a way that it pulled other bones or ligaments out of proper alignment and that has to be fixed first. My entire body is out of alignment from years spent curled up in a ball with my heating pad from abdominal pain. My hips, my knees, my spine, you name it! Doing PT and OT has been very slow and steady, and I don't have anything big to report just yet, but I've only been doing it since May with a brief hiatus in July (more on that below). The purpose of PT and OT isn't to get buff, it's to heal and strengthen the weak areas of my body damaged by atrophy that is causing me daily pain. I'll see more results as the months pass by and I'll keep this updated!
C Difficile
C-Difficile has become my biggest nemesis, and the fact that most standard sanitizers in the healthcare industry don't kill the spores is something that still makes me mad. (What is C-Diff?) Being immune compromised like I am means having to take incredibly careful precautions to make sure everything around me is sterile. I am a clean freak through and through. However I can only control that on my end, and I don't have any control of what other people do or don't do. This mostly applies to people in the healthcare industry because they clean their devices such as thermometers and blood pressure cuffs with alcohol based wipes which do not kill C-Diff spores. I appreciate that they kill things like the flu virus, but all it takes is one tiny c-diff spore to infect someone. When you have a low immune system you know it is inevitable to pick up illnesses when you mingle with those from the outside world. I am super duper cautious, often going above and beyond, but situations out of my control led me to pick up C- Difficile yet again. I say 'yet again' because this is my 4th rodeo with it since my first bought in 2013. The first time I had it I wrestled with eliminating it for over 6 months but then I stayed clear for a long while. I then had one in 2015, and one in 2016 into early 2017. I was clear for over a year until low and behold I picked it up again very recently. It took me a pretty long time to realize it was c-diff and not just a Crohn's flare up (2 weeks to be exact). During that time it did a lot of damage to my already damaged mucous membranes, and it's really dangerous to have on top of Crohn's, so this has been a real adventure to say the least! C Diff is notorious for being difficult to kill, and because of how much it weighs down my immune system I couldn't do my immunotherapy at the same time. My treatment protocol to completely eradicate the C Diff is a 2 month treatment + a follow up 10-20 week pulsing to make sure that no spores comes back. I have faith that if I am diligent I can heal all the damage it caused in my colon. I also want to do a post on everything you need for C.Diff including cleaners you must use that kills the spores etc. So many post ideas, so little time!
Pericarditis
The last of the recent life updates is another rather bizarre situation I had in July. It came on rather suddenly one night then I awoke to feeling like I couldn't catch my breath. I am used to having air hunger, which is a sensation of not being able to breathe but when you check your blood oxygen saturation it's A-ok. This trick helps me know its just a sensation and while it's uncomfortable I know it isn't life threatening. However, this time when I checked my oxygen levels they were down to 93 (normal is 98/99). I also felt like I couldn't get air in or out properly and I had a weight on my chest. Eventually I got back to sleep and had hoped it was just a weird fluke, but as the days passed it only got worse. I felt like someone was sitting on my chest, my chest hurt, breathing was difficult, and I got out of breath chewing my food or trying to speak. My oxygen levels dropped to 89 and I felt both terrified and miserable. At this point we knew it wasn't just some "weird Lyme thing" and this was actually something which needed attention asap. First things were ruled out like a PE or anemia, and when those came back clear I had other further testing with X-ray, echocardiograms, EKG and Spirometry. Let me tell you, I do not miss endless testing and worrying! But I did get an answer to what was plaguing me and it was Pericarditis. Pericarditis is an inflammation of the sac around the heart, most often caused by a viral infection. And while I had an answer there wasn't anything else I could do but take anti-inflammatory meds and wait it out with rest and plenty of hydration. The virus tends to run its course in 2-3 weeks, which isn't too long, but when you are living it then it can feel like an eternity. Things like eating or speaking were painful and difficult. I had to get help with showers and afterwards it took me hours to recover because with the low oxygen levels all the blood would leave my arms and legs upon exertion and go numb. I would lay flat after minimal walking and feel my arms and legs be ice cold, tingle, and be numb while I was also very faint. It was the strangest feeling, and it kept me in a state of panic almost constantly. It really wasn't until about 2.5 weeks in that I felt the first signs of the fog lifting. From there it was a more steady improvement and by the 1 month mark I felt back to normal.
Pericarditis is not really a common thing to pick up, so it was a strange experience and it reminded me to be grateful for my immune system. Since I had the C-Diff I had an even lower than usual immune system, and that left me open to further infections despite my precautions. This experience reminded me that while my immune system is usually a bit more fragile, I would definitely take that over the situation I had with C-diff and Pericarditis at the same time. When I had 2 infections at once pulling my body down it was unsettling to know that I had very little natural defenses left to protect me. That was a scary feeling, and it reminded me that my normal, slightly subpar immune system isn't so bad after all! It's all about perspective.
And that puts us at now. I am diligently taking my meds for C Diff and hopefully after that I will be able to ease back into the immunotherapy to help repair some damage left behind in my colon from this infection. I'll try to do more update posts so it isn't all so jam packed next time, but this was just meant to be a quick update of new things which I haven't had a chance to discuss or share yet. So while it wasn't all encompassing I hope it was useful to those of you who so kindly follow along!
xoxo,
Christina
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