My Experience Living With Ulcerative Colitis

Stomach disease, so, diarrhea and blood are mentioned

So, lemme tell y’all about the year I almost mc-fucking-died.

   It’s 2020, height of the covid pandemic. My family needs money so I’m doing Doordash to pay for part of the bills. I am stressed… Out of my goddamn mind. The pandemic and masking and lack of vaccines and finances are weighing on me. My family is refusing to vaccinate. I’m having problems with the job. I deal with clinical anxiety in myself. There’s always something going wrong everyday when you’re doing Doordash. We accidentally don’t pick up all items. The restaurant doesn’t GIVE us all items. The customer puts in a wrong or badly done address. Making calls and texts, sometimes not picked up of course. Navigating labyrinthian apartment complexes in the dark. Oh the app has gone down and we’re stranded with hot food going cold. We keep getting 3 dollar order requests (no tip) and the app is silently pushing us to accept them anyway even though we’d lose money making 6 dollars an hour taking 3 dollar orders that take 30mins a piece to do on average.

   I come down with a stomach ache one day. Real bad one. We stop immediately for the day. I get worse and not better later on. I start bleeding, shitting blood. Sometimes I can feel acid at the back of my throat. We try to look for answers and guidance. GERD is my first thought. Lactose intolerance is floated. My docs prescribe pills and give light diet plans. I’m given antibiotics. I’m put on Prednisone at some point I think at this stage.

   I do not improve, not for very long ever. I am in screaming, crying agony. I vomit stomach acid, and vomit normally sometimes. I become very scared of food in general. I go to the hospital emergency room at one point. This whole process of being in ever present creeping pain, this confusion, lasts a year. It torments me for months. I am called by my GP office after I do blood work.

"You have a milk and shell fish allergy."

?

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   She hangs up. I spend years thinking this is the cause of my problems, or at least part of it. It doesn’t make sense to me. It is utter bullshit. Milk doesn’t cause my issues, and you cannot physically diagnose a milk allergy from blood work. My eventual gastro is baffled. This year, in 2025, I take a glass of milk and drink it. Nothing. After avoiding it in its raw form for years. I hit up my first gastoentologist, stomach doctor expert, he’ll know what’s up. For sure. Definitely. Absolutely.

   On my intake paperwork, I put down all my symptoms + “I have depression and anxiety”. I’ve had them for years, I don’t think they’re directly related, but I always put down all my stats for docs to know anyway, full picture. He tells me “You have anxiety and depression, you are squeezing your colon, lessen those symptoms to aid your stomach.” He does the gastro doc butt check. He tells me I have hemoroids. I am fucking baffled.

   My symptoms do not improve. I have this horrendous exhaustion. I lay on the floor a lot, randomly. I’m so physically tired. I’m confused. I’m bleeding. I’m desperately trying to get my autistic brain to cooperate with meal plans low in acid, struggling to eat healthy and unproblematic food. I ask about my gastro to a different doctor from my GP, I ask if he’s known and good. She shakes her head. She will professionally not comment, but she obviously does not like him. At all. I go back to my GP for a second opinion gastro. Possibly on looking up my first gastro on google maps reviews and seeing lots of negative reviews.

   I go to second opinion gastro. She says “I’m pretty sure you have either Crohn’s Disease or Ulcerative Colitis. But we need to check to be sure on treatment plan. I’m ordering an immediate colonoscopy for you. Please do it.” The first gastro never once mentioned or was going to do a colonscopy. I am 28 years old going for a colonscopy and going to gastros for things normally 50+ olds do. I am put on the BRAT diet, bread and fruit. No spicy allowed, or spices, or acid. Even black pepper is advocated against. I struggle to stick to the plan.

   I go to the hospital. I have a panic attack in the waiting room. Having trouble breathing, I think in the moment my asthma has come back with a vengeance. But no, just a panic attack. I am scared and high anxiety, again. Nurses give me something in IV for anxiety. They read me the rights that I might die or have complications on the procedure. I sleep.

   It’s diagnosed as Ulcerative Colitis! My new gastro tells me all about it. It’s ulcers through the colon. It’s an autoimmune disease. I have a stage 4 of 4 “Severe Case” It needs treatment before it turns into cancer, or hurts my bones, or a number of other nasty things. New diet plan. Plus, I am put on transfusion therapy. My insurance does not want me to get this therapy, they deny my claim. My gastros office calls them daily yelling at them I need this life saving medicine. I am still in pain, trying to manage UC. Lots of diarrhea. I spend time on my bathroom floor, on the cool tile, screaming, crying. I cry about the pain, but I also cry about all the insurance problems I’m having. I can’t even recall and/or find all of it.

   I go in for transfusion therapy. Avsola (infliximab-axxq). Hour long transfusions ran into my blood stream. 6 sessions in total, 1 every couple months. My UC symptoms severely go down. My gastro gains my full trust. She is nice, smart, witty. She saved my life. My transfusion therapy apparently totals for 27,000 USD. My insurance eventually pays for it all, reluctantly, begrudgingly.

   My 2nd gastro doc starts me on an oral pill, “Xeljanz”. I am still on this medicine to this day. My insurances give me problems on and off with it for a few combined months. They don’t want to pay for it. They cry foul. My gastro is insistent. Driven.

   At points I’m able to see how much this medicine would cost if forced out of pocket off insurance. 9k a month, 30 pills, once a day. Insane. Impossible. My insurances eventually relent. This medicine keeps me completely in remission. No pain, no diarrhea, no needed diet changes. Miraculous. I thought I was going to die at several points. I’m just… fine now. As long as I’m on this medicine and in remission. Sometimes I still feel fatigue. I am constipated and have to figure out ways to get my stomach to eject properly, trying five different laxatives from my gastro. Most of them give me diarrhea. Not great, but livable.

My medical nightmare lasted seemingly for 3 years, from 2020 to 2023.

   As of this month, Dec 2025, I feel like I figured out the constipation thing. I buy an OTC supplement, Psyllium Husks, for fiber. My bowel movements are regular, and not horrendous. I basically am cured. I can’t give blood or plasma donations, which sucks. I sometimes have mild fatigue. I have to be careful to not get sick, which is a hat trick around anti-vaxxers family let me tell you.

   I can eat pizza. Spices. I eat hot italian sandwiches. Honestly, I’m being stupid with it sometimes, but seemingly I can eat spicy foods again with little issue. I’m never thrown out of remission. I’m confused, looking at other UC patients on the UC subreddit. People seem to struggle so much daily with the disease. People get thrown into and out of remission. Why am I so lucky? No one mentions Xeljanz, I hear other medications I’m not familiar with. I feel bad, that things go so well for me, and not for these others with UC.

   My gastro tells me my trajectory changes science. She will advocate for Xeljanz as first line attack and not Avsola transfusions anymore. The oral medication does exactly what she wants it to do, without having a patient spend six collective hours in a hospital bed with IV getting transfusion therapy done in a strange hospital room.

Various discord messages from these years and months.

   I am on Medicaid, taken care of until April of next year. I started with Molina Healthcare and transferred to United Healthcare. Trump and Republicans have ordered Medicaid patients must work some hours to be applicable for Medicaid. I am afraid. I have never worked. I have no transport. I have many mental disabilities and social anxiety. I am trans. I am still struggling to attempt to get on Disability pay, having been seeking it for over a year now. US healthcare is hell. It should get better, not worse. Our healthcare is the laughing stock of the world. Nowhere else tries to bankrupt you at the hospital, or throws up false signs they are charging you thousands of dollars. Ambulances and helicopters do not cost you anything. Elsewhere, an insurance does not decide you don’t need medicine. Patients die. Doctors cry. And Republicans and US politicians in general have socialized healthcare, paid for by the uninsured taxpayer. Monsters. They are taken care of without question, the very thing they keep from us.

   My family tells me that mexicans are the problem. They are told illegals, trans people, and China are The Enemy. My family either mildly likes or loves Trump. They don’t mention his corporate bailouts, or the criminals he pardons, or the many number of rights and laws the republicans attempt to destroy every day. Every now and then, Trump or one of his cronies lobs a potshot at trans people. For how long can I be on my HRT, for how long will it be socialized medicine, for how long will I be safe from these neo nazis?

   I was saved by my 2nd gastro and socialized medicine. For now. Time will tell if Republicans break my socialized healthcare, and my tenuous mental fort to boot. I wish it were easier. I wish that some part of me was not constantly demonized by the leaders of my country. Autism. Transgender adults and trans kids. People with disabilities. Poor people who still need healthcare. Millenials. It’s so frustrating to have leaders this inept. The very people I delivered food to may very well have voted to make my life a living hell.