intermission about my health
I've initially intended for this blog to be tech only, but I have decided to include some of my life here and there as well, as I see fit. I think what I am dealing with can help shed some light on others who deal with the same or paint the full context of what happens while I write this blog, design my website and learn more about programming languages.
Since December, I have been more sick than usual.
It sounds a little funny, but I truly always had something a bit wrong with me at any phase of my life - mysterious rashes coming and going, food sensitivities that partially changed every day, stomach and gut issues, ovarian cysts, diarrhea, constipation, randomly inflamed wrists or jaw, an inflamed achilles tendon, limb pain, lesions inside my stomach. But these things would come and go, some would persist for years before finally leaving for good or being replaced by other things. I had good phases and then inexplicably bad phases. I already arrived in the world a little sick and too early, and my mum says I've had some trouble with my digestion since I was a baby, but it all really started in my early teens. Lots of doctors visits and tests, but all inconclusive, except some of the tested food sensitivities and the fact that no matter what, I really sucked at absorbing enough iron.
I've always had higher inflammation detected in blood work, but for no discernible reason. Rheumatoid arthritis tests and other autoimmune stuff was always negative. One time, it was blamed on a recent strep infection I hadn't even known about but that was traceable in my blood, apparently. The advice was always the same: Rest. Avoid stress. Take Ibuprofen. Take a little Prednisone for a few days. That lower gut pain you have is likely just your cysts. You always have a lot of water around there, but it's probably normal in your case! Your rashes must be one of your many food and pollen allergies. Just stop eating that! The lesions in your stomach could be helicobacter pylori; the test is negative, but we don't know what else to do, so....
Retrospectively, I also gaslit myself about it, too. It all sounded so plausible. That food I ate, it must have been going bad somehow, even if it smelled, looked and tasted normal and the other person who ate didn't get sick either. It must be a new sensitivity. It must be the ripeness of the food. How often do you see memes online about how adulthood means being unable to tolerate food anymore that you ate in your childhood without a care? The jokes about Taco Bell? I must just be getting older and having what any adult has. And I'm just sensitive, right?
Well, the past 3 years, it kept getting worse. My relationship to food really changed and I was scared of it. It was unpredictable. One day it was fine, the other day it wasn't. One time my stomach reacted immediately, the other time it was a day later in my gut. Why would it be so volatile if it was a sensitivity? My pool of foods shrunk and shrunk. I read up on histamine intolerance, invested into a medication taken 15 minutes before food to neutralize histamine, took antihistamines to the best of my abilities, but it wasn't ideal. I felt like one time they would work, then they would not. I started seeing that after 2-3 days, the antihistamine would just not do anything at all. Not to mention the drowsiness, lack of focus and mental health issues these brought, so I didn't feel good taking them either. They were a last resort. It was around that time that I found blood on the toilet paper. Well, I sit a lot for work, everyone's dealing with that nowadays, aren't they?
Every now and then, there would be this lower stomach pain, near the uterus. Sometimes just on the right, sometimes on the left too. But it was only happening every few weeks, so I really assumed it to be ovulation pain, which I indeed feel and deal with too. It was a little suspicious to me when I would experience that multiple times a cycle, especially because my cycle is irregular and sometimes up to 60 days. PCOS means I should not pop eggs that much, and I didn't use to. So was it cysts, as was usually said by my ob/gyn? Probably, after all I am not on any hormonal treatments, I just take maca root to get it down to 30 as best as possible, maybe that still means cysts develop.
Starting in December, the pain would just not leave, and it traveled upwards towards my ribs on both sides too. I was worried that it could be an appendicitis, but it would not show the fitting symptoms at all. I was still walking around, pushing and showing around down there didn't change anything, there was no fever, and I should have had an increase in symptoms within a few hours for that. Another check at the ob/gyn rolled around, everything was fine. But this time, I also gave a stool sample which confirmed the blood on the toilet paper once again, but deeper. I got a referral to a gastroenterologist. Thankfully, I was able to bridge the time with some more Prednisone, because otherwise it was barely tolerable.
Before the appointment, I slowly tapered down over weeks. I suddenly had no symptoms anymore, even on a really low dose. Great! But that also sucks, what if that appointment was for nothing? Well, 3 days prior to it, a new flareup hit. It was a real struggle. My stomach especially had some extreme cramps that went as suddenly as they came, no matter what I ate, or if at all. During them, my head would get insanely hot and read, while the rest of my body was freezing. Nothing I did would stop them, they would just end whenever they wanted.
I've had two appointments in total since then, the second one with an endoscopy and a colonoscopy in one, and I was diagnosed with Crohn's disease. The view they got and the lab sample results show it is affecting both my large intestine and my stomach. After being informed about it and knowing what it causes in the system and what the symptoms are, even outside of the digestive tract, it all made so much sense. This is likely what I have been dealing with since I was a preteen, but only now it was overt and clear enough for any of us to get an idea where and what to test, and for me to seek help in the first place and really follow through.
Time is not really feeling real right now. I don't know if my current flare is subsiding or not. I don't know when the next stomach or intestinal pain is coming. I don't know what's okay or not okay to eat - every person is different. It's not even proven that it is triggered by food at all, it's just easy to make that connection. Well, I know I react pretty badly to artificial sugars like aspartame, and sadly, the liquid you need to drink for a colonoscopy has a lot of it. The entire thing has upset my body so badly that I've been having a really tough time since then, with the inflamed gut also pressing on kidney and bladder.
I've already had to switch from Budesonide to a high dose of Prednisone to slowly get it under control until we can discuss further options at the end of April, because this is nothing I can take for maintenance. I know there are risks to this, but I see no way around having to get on biologics like Stelara or Remicade for a longterm control of the illness in my case, but it can take so long to find what works for you. It's scary, because it makes planning things so hard, and any longterm goals and rewards are hard to grasp for me or focus on right now, so I fell behind in my uni work. I've had to call in sick to work. I dropped my workout routine for now and haven't felt safe enough to go to the gym because the idea of having a bad cramp attack in public away from home is scary.
I just take each day minute by minute right now, and forget about food until my body reminds me to eat, then eat intuitively what feels right in that moment. Most of the time, I just really don't want to eat, but obviously I have to. I hope I can return to my life slowly over the next few weeks and also longterm. Right now, a lot of it is focusing on online things, and resting in bed.