You know, I find it kind of crazy, and I bet you will, too, that this blog was last updated on May 19th, 2014. Little 3-year-old Ayla was still struggling with Crohn's disease and doing her best to survive her storms with a smile. Now, it is February 14th, 2025, and I’m almost 14, and boy, has a lot happened in 11 years.
I can't tell you how many times I’ve looked up this blog and admired how far I’ve come. From the start, I've been fighting battles I didn't sign up for, but from the start, I've been surviving battles I didn't sign up for. But I’m not the only one. My brother, Jonah, who is 16 now and has newly acquired his driver's license, had fought Lyme disease for years before getting into a deep remission (might I even say cured?). He started to get sick when I was in second grade. Mold had filled our school's walls to the brim, and while I was slightly sick from it, it was nothing compared to what my brother went through. It had seemed like his body completely shut down on him. He got regular fevers, and his body became so weak he needed a wheelchair to get around, and that was only what I could see from the outside. The rest of his hell was on the inside. We both left school and, at some point, temporarily moved in with my grandma, Boppy, my mom's mom. I probably won't remember most of the timelines right, and I’m writing this going off of pure memory of my own, so I’ll do my best to tell it realistically.
We moved in with Boppy because we found mold in our house. So my dad stayed behind for work and to get rid of the mold in our walls. At first, my mom, Jonah, and I stayed with Boppy for three months. I had never felt so homesick, and I missed my dad more than anything, even with his visits every now and then.
When my brother was feeling better, and we thought we got all the mold out, we moved back into our home in Petaluma. Unfortunately, this only lasted about a month until Jonah once again got sick, and we found more mold. This time, we stayed at my grandmas for eight months. We were also still being homeschooled, and I had no friends down south, so it was extremely isolating. During this time, COVID-19 also started, talk about isolation, now I couldn't even leave the house!
At one point during our second stay at Boppys, it had been many months since I had changed my G tube (or Mickey as I liked to call it). It was about time for a change because my usually white/gray tube was starting to show pink! But since I hadn't been needing any liquid medications in a while, could eat on my own, and didn't have an extra G tube to change with, we decided to take it out for good. Because replacing my tube had proven incredibly painful in the past, it took me two hours to finally muster up the courage to tell my mom to take it out. To my surprise, it was barely painful this time at all! I guess it was the insertion of the new tube is what really hurt before. Now, it's easy to find where my stomach is by the round, hole-looking scar on my stomach. Knowing little Ayla, you have to count on me making an iconic name for it, so, of course, I named it after what I thought it looked like. A bullet hole.
 |
| directly after I got my G tube out |
Although I was no doubt struggling with depression and probably anxiety at my grandma's, I was physically doing extremely well. A year or two after we came back to Petaluma for good, I got my annual colonoscopy done (every 10 years, I need to do one) when I was 11 and in the 5th grade. Tests came back to show that I was in deep remission!! I'm so grateful that I could celebrate that victory with my fellow IBD friends that I had met in Camp Oasis not long before. I had no idea how much I needed to be able to relate to kids my age until I met the people who understood me on a new level. That first week, I still know and remember as the best week of my life, on the last day and night, so many tears were spilled we probably could have filled up a swimming pool. We kept in touch and occasionally visited each other throughout the year, and then the next, and then the next. Unfortunately, one of the reasons we cry so hard at the end of each Camp week is because, for me, at least, the closest Camp friend is eight hours away. But we were able to survive by keeping in touch the best we all could.
 |
| Camp Oasis 2024 (Rock and Roll breakfast) |
Because I was in a deep remission, I was finally able to mostly let go of the diet that both kept me healthy and restricted me from so many things in life. No dairy, wheat, corn, grains except for rice or oats. Although I am grateful for how much that diet has done for me, you would not believe how far a diet can go from a food restriction to a restriction of life. And although that might seem a bit exaggerated, my whole life, I had lived in almost constant fear of eating the wrong thing, thinking that just a bite would cause me the excruciating pain I was unfortunately familiar with. At friends' houses, I would read and check the ingredients myself even after the parents said they had done it for me, at every class party, I couldn't have any of the food, and I would see friends and family eat delicious foods in front of me that I couldn't have. Finally, I could let go of most of it and expand my food range. But of course, I didn't let it go fully and still restricted myself a little bit with corn, dairy, and wheat, but I didn't feel the need to hold on to the fear of accidentally eating something I shouldn't. It felt so good to not be so disappointed at grocery stores. I was finding new foods, and I could finally have food at class parties.
During this time, I was also really into dance. I was participating in talent shows at my new school and going to dance classes twice a week. About two or three years into dance, I decided to give it a break in early 7th grade. I thought that I would just be stopping for a season and would come back later, but it turned out to be permanent. Around this time, I started to feel nauseous quite a lot, but it wasn’t really interfering with my everyday life because, thank god, I never threw up. I went to my pediatrician, and they gave me Zofran, an anti-nausea medication to take as needed.
In 2024, I slowly started transitioning myself back onto my food restrictions, but this time, it was only dairy, gluten, or corn. I did this because we had no idea if my nausea was because of Crohn’s or not.
Fortunately, and very unfortunately, one of my best friends, Luca, had also been extremely sick and was eventually diagnosed with celiac disease. We both started going on a gluten-free diet at around the same time, though hers was much more severe, and I would do anything to take it all away from her so she could go back to her normal life. Because of our autoimmune diseases, we’ve bonded so much more than I thought possible through the support we give each other.
 |
| Luca!!!💗💗 |
I barely remember which symptoms came first and when, so I'll do my best to tell it as realistically as possible. Around the end of 2023 and the start of 2024, I was getting menstrual pain almost throughout my entire cycle, and the pain was pretty bad, too. Around the same time, constipation started to come into play. Though at first it wasn't too terrible, able to mostly treat it with Miralax, and when I got it all out, that was usually the end of that for a while. The next to come in was leg weakness. Just like most of the others, it starts not too bad, every once in a while, my legs would start to feel incredibly weak for maybe a couple of minutes. This would happen a couple of times a week, and although it was something that I brought up in doctor's appointments, It never seemed like a concerning symptom. Leg weakness kind of came into play with lightheadedness, even though I had been feeling lightheaded for longer, they were both things that made me want to fall or go to the ground.
Now, here is where I almost completely lose track after the leg weakness with what came first because, after that, it was just a parade of different tiny symptoms coming together in a shared passion for making me feel terrible. After this, I started to feel dizzy, my head started hurting constantly, I became extremely fatigued all the time, and I gradually started to lose my appetite. In early October, I got a colonoscopy to see if this was all my Crohn’s, tests came back to show that I was out of remission but not in a flare. Good and bad news for multiple reasons. Even with all of those symptoms, I was still able to go to school, go for walks, hang out with friends, and still live a relatively normal life. I didn’t gain many more symptoms after this, but they did get worse. That's when I started not to handle things so well.
Nausea turned from temporary to all the time, constipation became chronic, Miralax stopped helping and only made me more nauseous, leg weakness turned constant, and I started falling from it, lightheadedness started to come at more times than just standing up, my appetite became rare, and I started to lose weight, and I became so dizzy I could barely see straight. In December, I went to the hospital for a week because I was physically unable to pass any stool, especially without extremely intense pain. Walking was proven very difficult, and I had lost ten pounds in the previous week because I was unable to eat.
 |
| both of these photos are in-patient in the hospital this one is getting ready for an MRE |
 |
| getting an ultrasound |
In the hospital, they started me on a clean-out and inserted an NG tube to do so. It took three rounds and 2-3 days to get almost all of my stool out, and my in-patient doctor said it could take up to 2 years for my intestines to go back to normal without getting constipated again. I was put on IV nutrients and was offered to be fed through my NG tube because of my lack of ability to eat.
Now, it is February, and I haven’t been to school since my hospital visit. I am still undiagnosed and a medical mystery once again. Except this time, things are different from when I was younger; for example, I’m able to talk and speak for myself.
ReplyForward |
