My heart freezes as I prepare this letter for publishing. I have long posted about my life and SIBO on this little blog, but sometimes things happen that take a long time to process and share. This letter feels long overdue and it feels too soon to release. I have intentionally not reread the letter as I type this, but I find tears flooding my eyes and flowing down my face forcing me to pause just thinking about what this letter contains.
This letter shares my most devastating experience in life, and one of the most difficult losses in another SIBO friend’s life. Sometimes SIBO crosses boundaries it never should and leaves devastating, life-long consequences. Sometimes, these things are what cause our SIBO, sometimes these things are a result of our SIBO, and sometimes they are a part of our SIBO journey in a way we do not understand. Both my SIBO friend and I want to open up our hearts to share with you, because we know if there are two of us who have experienced great loss then there are thousands of others who have suffered extreme loss in their own SIBO journey. If you are one of those people, know you are not alone. We cry and we mourn your loss with you.
Dear Sweet SIBO Friend From Canada,
I have enjoyed getting to know you over email over the last year. Your journey has been difficult, and you have worked diligently towards your health. In our last email you shared your vulnerability with me about how you had a hysterectomy believing your doctors and believing it was the best option for your medical condition, even though it wasn’t what you wanted deep down inside. Your SIBO started and your health crashed at that time. It was a few years ago that this happened. You gave up part of yourself to have a solution that did not work. Your doctors were wrong, and now you have SIBO and struggle tremendously with your health, while those you love seem to move forward with their lives effortlessly.
You are brave. You are so very, very brave to face life every day and to continue to search for answers. You are strong for the effort you have put into your journey and how you so diligently care for your family all the while learning about the new you and struggling to find the best solutions. You are powerfully courageous to share your story, and to open your heart for healing.
I too, once had a doctor fail me. You see, when I developed hives after the Elemental Diet a doctor who is a specialist put me on mass doses of an over the counter medication. I believed the Specialist that this was the best solution. There were many doctors before him that could not calm my hives and keep my throat wide open so I trusted him.
But he was wrong.
When I was in my early 20’s I was told by doctors I would never be able to have children let alone get pregnant. For ten years I believed this. I believed I would never have my own biological children, and I even believed I didn’t deserve such a gift because my health had been so poor. To my great surprise, 5 years into marriage I did get pregnant. I felt joy and honor that God would choose me to be a mother, that He would choose me to show that He can accomplish the impossible. But you see, when I went back to the doctor, a different doctor, and I told of my joyful news, great concern and worry crossed the doctor’s face. That over the counter medication prescribed by the Specialist was known to cause birth defects in animals and was considered unsafe for pregnancy.
My heart sank. I took my fears to the Lord. My husband and I were planning on telling my family as soon as my niece was born, hopefully by the end of the month.
But within a week I began to miscarry our daughter. And on the same day that my niece was born we waited until my family’s celebration was over to call to announce my miracle pregnancy but also to announce that that night we had watched my daughter slip away. We named my precious girl, Evangeline Joy, which means “good new my joy!” Because she was the best news of my life.
When I discovered I was pregnant, my prayer for Evangeline was that one day she would experience the love of God for her so profoundly she walk with the Lord. God answered this prayer, but it looked so much different than I had ever imagined.
Five years before, when my husband and I were days away from our wedding, we walked through a field while the sun was setting in the Rocky Mountain spring sky. In my mind’s eye I saw a beautiful little girl in a blue, flowered dress running through a field of wild flowers. Her long, soft, wavy hair of golden blonde with a hint of strawberry bouncing down her back as she giggled in the sunset.
I had forgotten this image until we began to miscarry and I knew the baby who had just died inside of me was the little girl in the field, Evangeline.
After the miscarriage, when I researched the US FDA approved, over the counter, prescribed by the Specialist drug, I learned Evangeline never stood a chance. I don’t know what her birth defects were, but I know that they were so great they had been fatal. Why had I trusted the doctor? Why had I ever trusted any doctor? And why had I taken that medication?
To the Specialist’s credit, the medication worked better than any other I tried, before or after, to calm the hives. But why did the doctor not warn me? Why did the doctor not ask me questions? Why did the FDA even approve this drug and why in the world is it sold over the counter? Even in standard doses, it is not safe for pregnancy. Why did he tell me it was safe?
I hated the pharmaceutical company. I hated the Specialist. I hated the FDA. And I hated myself for not doing my own research. I hated myself for trusting a professional.
And then I realized, Evangeline never experienced hate. When I was carrying my precious girl, I knew she had the power of compassion from my husband’s heart. Her heart beat so much like his, that even now, years later, I can feel her heart when I place my ear against my husband’s back and listen. My husband is one of the most powerfully safe, and kind men to walk the earth, and Evangeline inherited his heart. How could I hate when she would have forgiven and loved? How could I hate when she was laughing in Heaven and running beside God’s long strides through that field?
I cried. I wept. I mourned. I took the time I needed. And eventually, I forgave.
Evangeline changed my heart forever, she opened up a part of me I did not know existed. She showed me the greatest love I had ever seen, and she taught me forgiveness of a stolen life.
I will never again go see that Specialist. While I have forgiven him, I certainly do not trust him. I research EVERY single medication a doctor prescribes before I accept it. I’ve worked hard to forgive the FDA, and most importantly, myself. And sometimes I still struggle with why God allowed such a joyful and sorrowful experience. My heart will always contain a piece of Evangeline. She is a hope from my past and a memory of my future in Heaven to come. When time morphs into one we will again be together and I will understand God’s heart in letting such sorrow transpire.
That doctor, that Specialist failed me, and unfortunately in a world with sin and imperfection there will be more doctors that fail more patients like you, my Sweet SIBO Friend From Canada. There will be doctors that fail to diagnose, that fail by performing procedures that cause SIBO and adhesions, there will be doctors that fail because they do not have the experience of treating SIBO successfully. But you are brave, my Sweet Friend. You are strong. You are powerfully courageous. You are resilient.
You can forgive yourself for the choice you allowed into your life. You can forgive the doctor who recommended a procedure that left you in worse condition than before. You have the strength to move forward. You have the resilience to overcome this. You have the power to mourn, and to move forward. And I am confident that as you forgive, and let go of holding onto your great loss, you too will find the power and freedom to heal.
Prayerfully yours,
Elena