I wrote this post in early May, when I got my news. However, I didn't post it then because I didn't want this to take attention away from Lyme Awareness Month. Since it's writing some things have changed; I continued more testing, more investigation & will write a follow up soon as my body allows.
Well, here we are. It's been a couple of days since I finally got my answer, and yet it all still feels really fresh. I had hoped a few days time would give me some clarity to write this post, but right now I'm not there yet. I find myself bouncing around between a feeling of relief and understanding & back to a feeling of frustration and anger. At first I thought I would hold off on writing this post until the dust settled, but truthfully I'm not sure when that will be. I can't rush my feelings, but I also don't want to. I don't want to write some kind of clean and polished post which is void of my honest feelings. So, here we are. If you need to get caught up, I blogged about new symptoms I began having HERE and HERE.
I kind of chuckled when I sat down at my computer, because I remember writing my last post a week ago. When I was typing it out I distinctly remember myself omitting a line at the end where I said, "I just really hope it's not this 'one' disease." At the time I deleted it because I thought I might somehow jinx myself by putting it out there. But looking back now I realize that a part of my intuition knew it would be the answer, and I deleted it out of a sense of denial. It takes me a couple of days to write a post (I typically do it in segments), so by the time I was hitting "Post" a few test results had came in. As with most test results, when you look at them as a stand alone number it doesn't mean too much. But when you start combining it with other results the picture begins to form. I was aware that it was just as likely to be something minor like an unknown allergy as it was to be something more sinister. The tables could turn either direction, and I refused to believe it could be anything BUT just some simple little allergy.
There was just one pending test which stood between myself & this make believe land I was living in. I really truly believed it would come back negative & I could go on my merry little way and begin the gamut of allergy testing. It's almost like I actually thought if I believed it enough then it would happen. As if I could will my ideal future into existence. Quick spoiler alert, it turns out I could not.
The results came in, and right there in black and white were the words: Crohn's Disease. My first thought was "no way, no way, there is no way." But soon reality settled in and I realized that it made so much sense. It was indisputable; every single test result pointed in that direction and every single symptom fit. All my pain finally made sense. The severe stomach pain, the cramping, nausea, fatigue, loss of appetite, sensitivity to most all food, etc. Crohn's causes widespread inflammation (and ulcerations) which can affect your entire GI tract from the mouth to the colon, as well as the eyes, joints & skin. I had began having some eye ulcers & tongue/mouth ulcers a while ago, and now those weird symptoms finally had a home as well.
Crohn's Disease is chronic inflammatory bowel disease (IBD) characterized by inflammation of the GI tract. It is believed to be autoimmune in nature, where the mucus membranes essentially attack themselves. There is no "cure," and it varies between periods when disease is active or flaring, and when it is in remission (less/fewer symptoms). Crohn's varies person to person, and flares can get very serious if not handled properly. It can bring fun things like bowel obstruction, fistulas, fissures, malnutrition, and toxic megacolon among many other things. So keeping a keen eye on the body during a flare, and reducing the inflammation as soon as possible is very important. Also, both IBD's (Crohn's and Ulcerative Colitis) increase the chance of colon cancer by a great deal, so from now on I will need to be proactive about routine testing for that.
Alright, so now all the fun facts are out of the way, how do I feel? Well, where to begin.. I feel partially relieved. I was shooting in the dark for so long without an answer to my pain. I knew in my gut that this was something different.. this was something new. Getting an answer has allowed me to do things like completely re-haul my diet. Those with Crohn's have set diets during a flare (typically low residue) and then another diet they follow rather continuously to prevent a flare and keep the stomach relatively calm. So having this information now gives me the ability to hope for less painful meals & that gives me some peace. Getting answers has also allowed me to start reading as much as I can about Crohn's and has given me the hope of getting things under control.
On the flip side I feel overwhelmed. This is a whole new disease which I have to come to terms with. It's a whole new beast I have to work my way through to understand. Everything about this is brand new to me. A few years ago I was very green around the gills about Lyme Disease information, but through life experiences and research I was able to learn a lot. With Crohn's I am at the starting line. I feel like I hardly know anything, and it will take a lot of trial and error to find what does or doesn't work for my body. I also feel angry. I guess anger has been my primary emotion, and it's just this feeling of, "Seriously?!" Those of you following along know how HARD I have fought for my health to reclaim it from the grips of Lyme Disease. You also know that last year I got some great news about my bacterial loads & progress I made there. We went through mold remediation & I saw the light at the end of the tunnel. The specialized visual/brain therapy was all set to go, and I thought this was finally soon going to be "it" for me. I just so desperately wanted to be rid of all that plagued me, and on the path to getting pieces of my life back. I have struggled with IBS from 10+ years, and when things got more severe with my stomach in December I thought I could breeze through it and resume normalcy soon enough. It just never occurred to me that what I thought was routine IBS was actually Crohn's forming in my body. To be honest, this has likely been a part of my life for longer than I realized, but December was a particularly stressful time in my life which brought about the flare.
So what now? Well, traditional Crohn's treatment calls for steroids and biologics, both of which are HUGE no no's for those with Lyme Disease. They bring down the immune system and create the perfect environment for the Lyme (and other infectious bacteria) to come back out and relapse. It is imperative that I keep my immune function up in the places where it needs to stay up, so that traditional route will not be for me. Crohn's and Lyme Disease are on polar opposite ends of the treatment approach spectrum and that complicates matters. It will take work with Doctors & trial and error to find the right direction to go. I'm sure I will be able to navigate it, but right now it feels so much bigger than me.
And lastly, the question I'm sure many people are asking (because I know I did), how did this happen? The exact cause of Crohn's is unknown, but its a combination of genetics, the immune system & the environment. I know now (through testing) that I do indeed have the genetics for Crohn's. Check. I also know that Lyme Disease has caused disastrous turmoil to my immune system, creating the dysfunction, which is item number 2 on the list, so.. Check. And I have been in a state of almost constant stress, so my environment was prime for the picking. Check.
When I look at my family tree everyone is honestly SO healthy. Like, they could not be a healthier group of people. I am the only odd man out from the whole bunch. No close relatives on either side of my parents have an IBD like Crohn's. So genetics alone would not have activated this disease. However, what I did have (which none of my other ancestors or family had) is Lyme Disease. Lyme Disease eviscerates the immune system, and demolishes every piece of regularity it has. Lyme is known to create so many autoimmune conditions due to it's ability to get the immune system to improperly attack itself. Since my Lyme diagnosis I have became allergic to almost everything; foods, chemicals, you name it. The wrong shampoo gives me a migraine & inhaling the wrong chemical sends my heart into a tachycardia attack. My immune system has been dysfunctional for a long time due to Lyme, and in this case it coupled with my genetics, my environment, and created Crohn's. Bing, bang, boom.
I guess for now, this is all I have to say on the topic. I'm still digesting it and navigating through the complex web of information. I know that there is a reason for everything in life. I know God has a purpose for this in some way I can't yet see. But right now that does not bring me comfort, because I'm not to that stage just yet. On a rational level I can understand that, but on an emotional level I'm still lagging. However, I do feel unbelievably thankful to have gotten an answer now vs a few months down the road. This diagnosis also came just in time for Lyme Disease Awareness month, because boy oh boy, if there ever was a time that I loathed Lyme disease most, it would be now. If there was ever a time that I was motivated to spare even just 1 person from going through this, it would be now. The longer the Lyme bacteria goes unchecked before being properly diagnosed (5 years for myself), the more time it has to create deep destruction. Some of which won't even rear its ugly head until years later when you least expect it. My passion to stop this madness and advocate for a real lasting cure has been reignited 100 times over.
Heres the thing many of you know about me by now: I don't take no for an answer. I refuse to be pulled into this trap where I talk myself into believing I'm stuck with Crohn's for life. In the little time I've had to process this I've read about so many people in remission for years, living free and clear of Crohn's symptoms for 5,10,15+ years. Mark my words, I will be one of those people. I'm determined to reverse this process; to find a way to get to the root cause.
I will keep this blog updated as I navigate the world of Crohn's and try to climb out of the current flare which I am currently in. I will have further testing to try and tweak things in my diet/environment which might be contributing to the flare, so there is still lots of work to be done! I might be less responsive in the coming month or two, so if there's a lag in replying to emails etc then this is why. Thank you to those of you following along, and thank you for all the prayers. I feel them on every level.
xoxo,
Christina
I kind of chuckled when I sat down at my computer, because I remember writing my last post a week ago. When I was typing it out I distinctly remember myself omitting a line at the end where I said, "I just really hope it's not this 'one' disease." At the time I deleted it because I thought I might somehow jinx myself by putting it out there. But looking back now I realize that a part of my intuition knew it would be the answer, and I deleted it out of a sense of denial. It takes me a couple of days to write a post (I typically do it in segments), so by the time I was hitting "Post" a few test results had came in. As with most test results, when you look at them as a stand alone number it doesn't mean too much. But when you start combining it with other results the picture begins to form. I was aware that it was just as likely to be something minor like an unknown allergy as it was to be something more sinister. The tables could turn either direction, and I refused to believe it could be anything BUT just some simple little allergy.
There was just one pending test which stood between myself & this make believe land I was living in. I really truly believed it would come back negative & I could go on my merry little way and begin the gamut of allergy testing. It's almost like I actually thought if I believed it enough then it would happen. As if I could will my ideal future into existence. Quick spoiler alert, it turns out I could not.
The results came in, and right there in black and white were the words: Crohn's Disease. My first thought was "no way, no way, there is no way." But soon reality settled in and I realized that it made so much sense. It was indisputable; every single test result pointed in that direction and every single symptom fit. All my pain finally made sense. The severe stomach pain, the cramping, nausea, fatigue, loss of appetite, sensitivity to most all food, etc. Crohn's causes widespread inflammation (and ulcerations) which can affect your entire GI tract from the mouth to the colon, as well as the eyes, joints & skin. I had began having some eye ulcers & tongue/mouth ulcers a while ago, and now those weird symptoms finally had a home as well.
Crohn's Disease is chronic inflammatory bowel disease (IBD) characterized by inflammation of the GI tract. It is believed to be autoimmune in nature, where the mucus membranes essentially attack themselves. There is no "cure," and it varies between periods when disease is active or flaring, and when it is in remission (less/fewer symptoms). Crohn's varies person to person, and flares can get very serious if not handled properly. It can bring fun things like bowel obstruction, fistulas, fissures, malnutrition, and toxic megacolon among many other things. So keeping a keen eye on the body during a flare, and reducing the inflammation as soon as possible is very important. Also, both IBD's (Crohn's and Ulcerative Colitis) increase the chance of colon cancer by a great deal, so from now on I will need to be proactive about routine testing for that.
Alright, so now all the fun facts are out of the way, how do I feel? Well, where to begin.. I feel partially relieved. I was shooting in the dark for so long without an answer to my pain. I knew in my gut that this was something different.. this was something new. Getting an answer has allowed me to do things like completely re-haul my diet. Those with Crohn's have set diets during a flare (typically low residue) and then another diet they follow rather continuously to prevent a flare and keep the stomach relatively calm. So having this information now gives me the ability to hope for less painful meals & that gives me some peace. Getting answers has also allowed me to start reading as much as I can about Crohn's and has given me the hope of getting things under control.
On the flip side I feel overwhelmed. This is a whole new disease which I have to come to terms with. It's a whole new beast I have to work my way through to understand. Everything about this is brand new to me. A few years ago I was very green around the gills about Lyme Disease information, but through life experiences and research I was able to learn a lot. With Crohn's I am at the starting line. I feel like I hardly know anything, and it will take a lot of trial and error to find what does or doesn't work for my body. I also feel angry. I guess anger has been my primary emotion, and it's just this feeling of, "Seriously?!" Those of you following along know how HARD I have fought for my health to reclaim it from the grips of Lyme Disease. You also know that last year I got some great news about my bacterial loads & progress I made there. We went through mold remediation & I saw the light at the end of the tunnel. The specialized visual/brain therapy was all set to go, and I thought this was finally soon going to be "it" for me. I just so desperately wanted to be rid of all that plagued me, and on the path to getting pieces of my life back. I have struggled with IBS from 10+ years, and when things got more severe with my stomach in December I thought I could breeze through it and resume normalcy soon enough. It just never occurred to me that what I thought was routine IBS was actually Crohn's forming in my body. To be honest, this has likely been a part of my life for longer than I realized, but December was a particularly stressful time in my life which brought about the flare.
So what now? Well, traditional Crohn's treatment calls for steroids and biologics, both of which are HUGE no no's for those with Lyme Disease. They bring down the immune system and create the perfect environment for the Lyme (and other infectious bacteria) to come back out and relapse. It is imperative that I keep my immune function up in the places where it needs to stay up, so that traditional route will not be for me. Crohn's and Lyme Disease are on polar opposite ends of the treatment approach spectrum and that complicates matters. It will take work with Doctors & trial and error to find the right direction to go. I'm sure I will be able to navigate it, but right now it feels so much bigger than me.
And lastly, the question I'm sure many people are asking (because I know I did), how did this happen? The exact cause of Crohn's is unknown, but its a combination of genetics, the immune system & the environment. I know now (through testing) that I do indeed have the genetics for Crohn's. Check. I also know that Lyme Disease has caused disastrous turmoil to my immune system, creating the dysfunction, which is item number 2 on the list, so.. Check. And I have been in a state of almost constant stress, so my environment was prime for the picking. Check.
When I look at my family tree everyone is honestly SO healthy. Like, they could not be a healthier group of people. I am the only odd man out from the whole bunch. No close relatives on either side of my parents have an IBD like Crohn's. So genetics alone would not have activated this disease. However, what I did have (which none of my other ancestors or family had) is Lyme Disease. Lyme Disease eviscerates the immune system, and demolishes every piece of regularity it has. Lyme is known to create so many autoimmune conditions due to it's ability to get the immune system to improperly attack itself. Since my Lyme diagnosis I have became allergic to almost everything; foods, chemicals, you name it. The wrong shampoo gives me a migraine & inhaling the wrong chemical sends my heart into a tachycardia attack. My immune system has been dysfunctional for a long time due to Lyme, and in this case it coupled with my genetics, my environment, and created Crohn's. Bing, bang, boom.
I guess for now, this is all I have to say on the topic. I'm still digesting it and navigating through the complex web of information. I know that there is a reason for everything in life. I know God has a purpose for this in some way I can't yet see. But right now that does not bring me comfort, because I'm not to that stage just yet. On a rational level I can understand that, but on an emotional level I'm still lagging. However, I do feel unbelievably thankful to have gotten an answer now vs a few months down the road. This diagnosis also came just in time for Lyme Disease Awareness month, because boy oh boy, if there ever was a time that I loathed Lyme disease most, it would be now. If there was ever a time that I was motivated to spare even just 1 person from going through this, it would be now. The longer the Lyme bacteria goes unchecked before being properly diagnosed (5 years for myself), the more time it has to create deep destruction. Some of which won't even rear its ugly head until years later when you least expect it. My passion to stop this madness and advocate for a real lasting cure has been reignited 100 times over.
Heres the thing many of you know about me by now: I don't take no for an answer. I refuse to be pulled into this trap where I talk myself into believing I'm stuck with Crohn's for life. In the little time I've had to process this I've read about so many people in remission for years, living free and clear of Crohn's symptoms for 5,10,15+ years. Mark my words, I will be one of those people. I'm determined to reverse this process; to find a way to get to the root cause.
I will keep this blog updated as I navigate the world of Crohn's and try to climb out of the current flare which I am currently in. I will have further testing to try and tweak things in my diet/environment which might be contributing to the flare, so there is still lots of work to be done! I might be less responsive in the coming month or two, so if there's a lag in replying to emails etc then this is why. Thank you to those of you following along, and thank you for all the prayers. I feel them on every level.
xoxo,
Christina
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