Posted 2/5/2018 7:33 PM (GMT 0)
Hey, hi, hello.
This is my first post here, and I just wanted to explain my situation and see if anyone has any advice for me based on the information I give. I just turned 18, in January 2018, and I have had ulcerative colitis for 2 years now. I was diagnosed back in March of 2016 after 3 weeks of being stuck in bed night sweats and fever dreams. At one point I believed I was one of the ninja turtles. Prior to that, there had been blood in my stool for about 2 months, and being an arrogant and naive 16 year old, I did't look into it. After those 3 weeks, I finally went to hospital. After awhile in the hospital, getting some x-rays and a colonoscopy (I still have flashbacks to the hell that was drinking a pitcher of GaviLyte) I was diagnosed with ulcerative colitis. The team of doctors there pushed hard for Remicade, being the first treatment they tried, which worked. If it ain't broke, don't fix it I guess. And I have been on Remicade for the past 2 years.
However, like most people, I don't want to be reliant on getting some chemical juice jammed into my arm every month. What If I want to become a sailor and have to spend months at sea? Theres no remicade out in the open ocean. I want to completely get rid of this stupid disease in my butt.
Let me give you a bit of insight as to my condition when I first started showing symptoms. I was one of the most unhealthy teenagers on this planet, without a doubt. It had been months since I ate something real. After school, I would come home to play games on my computer until the midnight hours, fueled by mountain dew, energy drinks, a ton of milk, and those gross hot chips that kids eat until their digestive systems fail. I guess I kinda deserve this, but I was arrogant. I was also on very low amounts of sleep each night, and little to no physical activity.
2 Years later and my life has shifted astronomically. I moved, from Arizona to Hawaii, started living with my dad (I was living with only my mom before) and have done many a thing. I've gotten into weightlifting, running, and trying my best at a healthy diet. However, It's a bit difficult to maintain any consistency, both of my parents are very poor and at some times I haven't had the basic necessities, i.e. a bed, a fridge, a kitchen, sometimes not even a home. I've tried my best to maintain willpower to reverse this disease, and with trial and error I have found out a few things.
There have been some instances where I missed my treatment for a long time, due to issues with insurance. The first case was when I first moved to Hawaii. I had still been going hard on energy drinks, and when I missed my treatment, I paid for it. I was in a new place, stuck in bed for I can't even remember how long, thats how out of it I was. 2 Months ago, my insurance lapsed and I wouldn't be getting Remicade for a week extra. However, with changes to my diet (Cutting out all caffeine and most dairy) I showed no symptoms when I usually get them about the scheduled time for my infusion. Since then I have maintained a diet without caffeine and most dairy. So I told my doctor to bump me up to 5 weeks instead, and he complied. When the next 5 weeks came around, I had felt slightly weak and lost appetite by the middle of week 5. When they took my blood before I got Remicade, my doctor told me that my numbers weren't looking good, whatever that means. He said he'll keep me at 5 weeks, but if its bad next week he'll shut down my crusade to space out the time I need Remicade.
However, one side effect of my Remicade weakening my immune system, is that I have a big gross nasty fungal infection. All over my scalp. I can't get a haircut or it would show, so I wear a tight beanie every day to contain my really long hair. It kinda interrupts my daily life, so I started taking an oral antifungal. However, one of the side effects of this dumb drug is that it can interrupt the effects of Remicade. So for the past week i'v been taking this antifungal, and today I feel like garbage. Today is also the 4 week mark, so its another week until Remicade. But the antifungal is working!
What I think is going to happen is this: I'm probably gonna get a bit worse each day until I get to the doctor, and when I do get to him, he's gonna put me back at 4 weeks. I don't know if i'm going to keep up the antifungal this week, because I really want it to go away but its so deep in my fricken head now that topicals are not enough. And i'm thinking next month i'll try getting stricter on the dairy, i.e. cheese and butter. But i'm tired of this dumb stupid disease.
Oh bonus: Does anyone else get brutal hemmorhoids? I can't stop myself when I get on the toilet, I feel like at one point in my life I had more control over my butthole, but now whenever I sit down its all or nothin, and thats really not good for hemmorhoids. Prep H barely helps, taking a warm shower and aiming the shower head right at my butt seems to help a bit, and so does getting really zen and letting my mana and chi flow with that of the universe, but that only helps so much. Thanks for reading all this, you're an angel, and I hope your butthole, if not okay at the moment, gets okay. This disease sucks.