IBD Awareness Week 2018
Today is the last day of IBD Awareness Week, so I thought it would be a good time to reflect.
One year ago at this time in December, I was experiencing miraculous changes in my health. You might remember that I had my jpouch reconnection in March 2017 and the following weeks and months were pure misery. It's truly amazing how time has almost entirely erased the pain, but March-December 2017 was the hardest part of my health journey to date, and that's saying a lot because I have had many other horrible health experiences over the last 10 years.
Now that I've had distance from the events, I know why those months were the worst. For one, they were filled with a range of horrible physical symptoms including 20+ bowel movements a day and 10+ bowel movements a night, but I had dealt with similar symptoms prior to surgery, so it wasn't just that. What made it monumentally worse was that I knew something was wrong with my body and I didn't get proper medical support or treatment.
Even though I was excited for a healthier life post-surgery, I was not starry-eyed; I knew that most jpouch-ers needed 2 months to adjust to the new normal after surgery. And still, I suffered unnecessarily for many months. When my symptoms didn't match the expected ranges, I contacted my doctors' offices repeatedly and advocated for myself. My medical team went through standard protocols for my symptoms and provided the typical remedies, but when those failed to help, they stopped there. They totally missed that my symptoms were caused by an infection called pouchitis.
In some ways, I don't fault my medical team. I like to believe that they were doing their jobs with the tools the had in their toolkits. What strikes me now is how limited those toolkits were, and I think this is fairly common amongst GI doctors and surgeons across the country. I've learned that medicine is a frontier of our time, but information is out there and I want all GIs to get better training about jpouches.
I'm grateful for the top-notch Boston hospitals I have at my fingertips and especially grateful that I was able to go to another hospital and afford a hefty out of pocket fee to see a highly recommended surgeon not covered by my insurance. He diagnosed me correctly and got me on back on the path to healing. Some might not be so lucky and that is not okay. When the antibiotics kicked in last December it felt like a miracle, but it was the result of proper care and medical training. (I'm realizing that it would be a good idea to share this information with the hospitals so these experiences don't happen to anyone else-- I'll get on that!)
Today, I'm doing so much better than a year ago and I'm still working to manage the remaining symptoms as best I can with a supportive team. Recovery is much more complicated than I ever thought it would be. I'm grateful for the fact that on many days IBD is not front and center, but it is still the backdrop to my life in all different ways even when I don't talk about it or post about it on this blog.
I'm sure many of you have had life-changing events (medical or not) that have shaped you. They bring us new capacities and also challenge our world-views. While we do not choose these experiences, we can choose our responses and in doing we so shape our story. I love this quote by Anne Purdy because it feels empowering: "If your life were a book, and you were the author, how would you want your story to go?"
Happy IBD Awareness Week!
One year ago at this time in December, I was experiencing miraculous changes in my health. You might remember that I had my jpouch reconnection in March 2017 and the following weeks and months were pure misery. It's truly amazing how time has almost entirely erased the pain, but March-December 2017 was the hardest part of my health journey to date, and that's saying a lot because I have had many other horrible health experiences over the last 10 years.
Now that I've had distance from the events, I know why those months were the worst. For one, they were filled with a range of horrible physical symptoms including 20+ bowel movements a day and 10+ bowel movements a night, but I had dealt with similar symptoms prior to surgery, so it wasn't just that. What made it monumentally worse was that I knew something was wrong with my body and I didn't get proper medical support or treatment.
Even though I was excited for a healthier life post-surgery, I was not starry-eyed; I knew that most jpouch-ers needed 2 months to adjust to the new normal after surgery. And still, I suffered unnecessarily for many months. When my symptoms didn't match the expected ranges, I contacted my doctors' offices repeatedly and advocated for myself. My medical team went through standard protocols for my symptoms and provided the typical remedies, but when those failed to help, they stopped there. They totally missed that my symptoms were caused by an infection called pouchitis.
In some ways, I don't fault my medical team. I like to believe that they were doing their jobs with the tools the had in their toolkits. What strikes me now is how limited those toolkits were, and I think this is fairly common amongst GI doctors and surgeons across the country. I've learned that medicine is a frontier of our time, but information is out there and I want all GIs to get better training about jpouches.
I'm grateful for the top-notch Boston hospitals I have at my fingertips and especially grateful that I was able to go to another hospital and afford a hefty out of pocket fee to see a highly recommended surgeon not covered by my insurance. He diagnosed me correctly and got me on back on the path to healing. Some might not be so lucky and that is not okay. When the antibiotics kicked in last December it felt like a miracle, but it was the result of proper care and medical training. (I'm realizing that it would be a good idea to share this information with the hospitals so these experiences don't happen to anyone else-- I'll get on that!)
Today, I'm doing so much better than a year ago and I'm still working to manage the remaining symptoms as best I can with a supportive team. Recovery is much more complicated than I ever thought it would be. I'm grateful for the fact that on many days IBD is not front and center, but it is still the backdrop to my life in all different ways even when I don't talk about it or post about it on this blog.
I'm sure many of you have had life-changing events (medical or not) that have shaped you. They bring us new capacities and also challenge our world-views. While we do not choose these experiences, we can choose our responses and in doing we so shape our story. I love this quote by Anne Purdy because it feels empowering: "If your life were a book, and you were the author, how would you want your story to go?"
Happy IBD Awareness Week!
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