you do not just wake up and become the butterfly
growth is a process- rupi kaur🦋🦋🦋🦋
In August of 2018 my life changed forever. After months of high dose IVIg I regained motility in my gut. We watched miraculously as every test came back normal. My health was returning. I was eating with zero discomfort. I could live again. When that happened, I realized I could actually go to college and re-enter society versus living in the plastic bubble of a hospital. I learned to become independent. Eventually, I moved into my dorm, met my best friends, and felt the most alive I have ever felt in years. It may be naive… but I felt those things and assumed the hardships were last us. No more motility issues. Only healing from then on.
This fall I started having a harder time having bowel movements. Since November abdominal pain crept back into my life everyday. As the months passed, I felt feelings I had not felt in a long time, and it was alarming: nausea, bloating, fullness, pain, discomfort. I kept it to myself at first, assuming it was a fluke. Yet, it only continued. Soon I found myself not eating a full lunch most days, or not eating a full breakfast. I will dedicate one meal to eating fully, and know that I will be in discomfort afterwards. I found myself preferring Naked juices in the dining hall and ceasing to be able to eat my beloved salads without horrific pain. The medication that gave me bowel movements, Linzess, stopped doing so. I called my GI and we scheduled an appointment. I tried my best to continue school despite the occasional vomiting of old food, discomfort, and daily nausea. I found that if I drank my full four liters of fluid orally I would eat even less, and have it reflux. That led to now doing 2 liters of IV fluids everyday.
On Tuesday we got the results from the sitz marker pill I swallowed on Saturday. This pill held 24 radiopaque markers. These markers show up on X-rays, which allow the radiologist to see the function of the digestive system. I had immense hope that they would have moved through. I put in extra effort to workout everyday to move my gut physically. I even found dried prunes in one of the markets in our lecture halls on campus and munched on those. I was in an appointment with my mom when the MyChart notification pulled up.
It mentioned how the sitz markers were all throughout my colon and where my small intestine meets the large intestine. I read the note from my gastroenterologist at the top, “Dear Isabelle, it seems that we have some motility issues…”. I would like to say I did not feel much after seeing that. But my eyes welled up with tears, I felt chills, and I spent the rest of the day crying off and on.
I kept thinking, “why?”, I do everything I can do to stay as healthy as possible. I dedicate so much of my free time to my health. I think what has been upsetting me the most is how in August of 2018, I felt it was all going to be easy from then on. I assumed I would finally have a good stretch that would last for a long time. Yet, it seems my diseases always find me. I had a taste of zero issues, and then it ended. It is a bittersweet concept. Something I am still thinking about.
What will we do? Well we will do everything we have to do. I am allergic to almost every single motility medication. Today I restarted Mestinon at a very low dose. I get muscle tremors from it and other side effects, so we will monitor this closely. I will try a different dose of Linzess. If those things do not work, we will look at other options.
I felt very upset the rest of Tuesday and Wednesday. I cannot lie about that. But I know it will all work out. I just am continuously learning how to live with chronic illnesses. These diseases seem to always find me. But I will always find a way to outsmart them. I know it.
Here is to working on feeling better. On getting my energy back, having less nausea, less pain, less distention. Being able to feel like I did earlier. It will be okay. I know it will.
All my love,