It’s hard enough interacting with medical professionals when you’re transgender, harder still when you have family problems whose headwinds precluded me from always caring for myself properly. And part of that self care involved the catharsis of writing my story.
A few months ago, I thought I might be dying.
After nearly a lifetime of serious gastrointestinal issues that were either misdiagnosed or overlooked because of implicit bias, I finally got a diagnoses and am on the road to recovery, but the pain was both emotional and physical and ran deep.
I think it’s safe to say that most people know their bodies pretty well, but when your illness hides from you, mimics symptoms of another, less harmless condition, you start to doubt yourself after a while.
As a child, I was very sick. I often contracted colds and flus, just like any child, but I also came down with strep throat fairly often. I had uncontrolled asthma at the time as well, which put a lot of strain on my body and family.
I was smaller than most children my age, stunted by the steroids necessary to keep me breathing but as the years went on, and I got older, things started to smooth themselves out. My immune system got a little stronger and I stopped using the steroids for my asthma, as they had stunted my growth so much that my doctors took me off of them in hopes I would grow, which I did eventually.
I was still medicated for my chronic asthma, but it seemed to have calmed down once I reached my teen years. Throughout all the struggle with my lungs and random throat infections, that more than once or twice put me in the hospital, I also struggled with bowel issues.
My mom was a single mother, raising two children and working herself to death to keep a roof over our heads. With my medications, doctor visits, school clothes, food, rent, toys and school supplies, needless to say, it was a struggle. I did have step fathers growing up but to be honest, they were useless and didn’t add much value in terms of love or financial stability, which weighed on my mother even more, I’m sure. My biological father, whom loved my sister and me dearly, was still unwilling or unable to help my mother meet ends. Child support checks were a rare gift. While we struggled greatly, my mom was pretty good at hiding it, at least from me. My sister might say otherwise but she’s five years older and was far more aware of the goings on during this time in my life.
Photo above: Cole and his mother when he was 15.
I remember a couple years ago, my mom told me, “You were always sick. Always had stomach and bathroom problems, but I had to choose. It was either get you tested for your gut, or keep you medicated for your lungs.”
We didn’t have the money to get me the tests I needed to see what was going on inside my gut and the constant nausea, diarrhea and knotted feeling deep in my abdomen manifested into intense anxiety. Mind you, my anxiety doesn’t necessarily stem from my bowel issues, but it still took a large part in it. It’s hard to be calm when everyday you feel sick to your stomach and you don’t know if it’s something you ate or the domestic abuse taking place outside your bedroom door.
During my early teens, my family unit started to crumble. My mom had divorced my first step father and we moved back to the apartment complex from my childhood. I remember during the time I was 13-16, things were chaotic. I was home alone a lot and missed a lot of school due to feeling sick in the middle of the night. It was a combination of whatever was happening inside my gut and crippling anxiety I just couldn’t shake.
I’d sit in the living room in front of the heater, shaking, nauseated, my body and joints aching as if they’d been smashed with mallets. In the early hours of the morning, I’d write a note to my mom saying I was sick and needed to stay home. By the time she found it, as she was getting ready for her early morning shift at the bakery, I’d be passed out on the couch, finally asleep.
In junior high I wracked up some 50 plus missed days of school and was warned by the principle, if it continued, my mother would get in trouble.
A lot of this story might not seem to connect with my current condition today. I don’t know exactly how autoimmune diseases work, whether they’re purely hereditary, environmental or a mixture of the two, but I do know that stress plays a huge role in how the immune system functions and stress for me was a daily, near constant thing. Anxiety has been an ugly friend for as long as I can remember. It has been unshakable, relentless and ever present.
After I dropped out of high school, I started partying a lot and preferred to be out of the house than home. I never drank, never did drugs and didn’t particularly enjoy being around other people that drank but I’d rather be with my friends than be in the presence of a screaming, belligerent man-child.
I’m so thankful for the friends I had during this time. They did an amazing job taking care of me. I always had a safe place to go, food to eat, comfort and love. My friends became my family and I don’t know if they realize just how important and just how desperately I needed them during those years. Many of us don’t talk anymore, and naturally drifted apart but I hope they know how special and even life saving their friendship was to me then.
The pain in my abdomen grew as I aged. My anxiety became so intense it caused bouts of anorexia, which only made things worse. It took a long time but slowly, I got a handle on my disorder but still struggled with food, as everything seemed to make me sick. I began eliminating things. It started with dairy, then eggs, then meat and by force I became vegan. I thought veganism would fix things. I became very passionate about the lifestyle and still am. I wanted so bad for the diet to work, to help heal my festering, stinging insides and for a little while, maybe it did.
At the age of 24, I was diagnosed with IBS and it gave me a lot of relief. I finally had a name for what was going on and now I didn’t need to worry. IBS, while painful and inconvenient is relatively harmless and does not cause lasting damage to the intestines. I was in pain, but I’d be okay. From that point forward, I worked endlessly on my diet to try and heal. By this point I was going to the bathroom between 6 and 10 times a day.
I tried more vegetables, less vegetables, steamed and roasted vegetables. I cut out gluten, because I was waking up in the middle of the night completely soaked through. I had itching skin, aching joints, brain fog, dizziness, fatigue, nausea, intense hunger, rapid weight loss, cramping that would double me over, vitamin deficiencies, horrible gas that could clear a room and the most vile bowel movements I can’t even begin to explain and I’m sure you don’t want me to.
Because my symptoms got worse with increased anxiety, I figured a good way to control my IBS was through stress management. So, I did yoga, I went to a meditation classes for six weeks, I did acupuncture, aroma therapy, CBD topicals, vapes, gummies, massage. Those things helped a little, but my symptoms continued to get worse.
I kept trying though. I started incorporating fiber, then less fiber, I started taking vitamins, working out four days a week, eating 3,000 calories a day in hopes of gaining weight. I took dehydrated fruit and vegetable pills, ate fermented foods like kimchi, kombucha and tempeh. I did the Fodmap diet, smoothies, and meal replacement shakes. Pro and prebiotic supplements. Nothing worked. Some things helped a little but after a couple weeks my symptoms returned, and my anxiety got worse.
It wasn’t until three years ago when the urgency to go to the bathroom overtook me and afterward, I looked down and found a red stained toilet bowl. I had started shitting blood. From the straining, diarrhea and cramping, I had developed hemorrhoids and anal fissures. Bowel movement felt like I was shitting razor blades and lemon juice.
My doctor wasn’t sure what could be wrong. She thought severe IBS, maybe SIBO but because I hadn’t ended up in the hospital, we continued modifying my diet. She didn’t seem too concerned about the blood so, I tried not to be either.
A year passed and my symptoms remained the same, but my mental health declined. My anxiety and OCD tendencies turned into panic attacks and unfortunately, after another two years, those panic attacks became uncontrollable. They started affecting my work, popping up randomly, in the middle of meetings where I’d flee from the room unable to breathe. My stomach twisted, my guts squeezed and knotted. I hated myself because I thought I was being dramatic. I felt like a hypochondriac, which was a word that had been thrown at me many times. I didn’t trust myself, I didn’t want to be a complainer, weak and so I continued to fight.
During this time, I was diagnosed with PTSD and after a handful of medications which were unsuccessful, I was put on Prozac. I was apprehensive about starting an SSRI. I’d heard horror stories about them but I knew it was one of the only things I hadn’t tried and so I did.
It was hard in the beginning but to put it plainly, it helped, it helped so much. I no longer have panic attacks and the anxiety I feel is manageable. I can rationalize with myself with obsessive thoughts come barreling down at me and PTSD flashbacks are far and few in between. When they do happen, I don’t spiral. I’m grateful for what Prozac has helped me achieve as far as my mental health goes. I was also put on an SSRI because my doctor explained that they can help manage the symptoms of IBS.
Before starting Prozac, I went through a couple major life events. I bought my first home and then got married. The stress of those two things nearly broke me and my anxiety during those few months were the worst they’d ever been. My health, something that was never good, but I thought had been in a weirdly stable place, plummeted.
A couple months after my marriage, I started waking up in the middle of the night, feeling sick and fevery. I’d never experienced that before but figured it was a new IBS symptom. It happened nightly but I ignored it. The nausea started following me into the day but, I’d pop a Zofran or a Pepto and call it good.
Then, one day I came down with a stomach bug. Nausea to the point of vomiting, fever, frequent diarrhea, headache, chills and terrible abdominal cramping. Lower right side. I was worried at first that maybe it was appendicitis but after a couple days, my symptoms all but disappeared so, I shrugged it off.
A week after the stomach bug though, I started getting night fevers again and, on a Thursday, woke up for work feeling rough as fuck. Maybe the bug had rebounded? I went into work anyway, shivering and with an arsenal of medication. I couldn’t walk upright; the pain was too severe. I was nauseated but hungry but couldn’t eat. After a couple hours, I was told to go home and so I did.
Photo above: Cole and his mom this past summer.
Sitting in my office, trying to work through the fever and the pain, a nagging thought kept poking at me. I decided to call a nurse at my doctors office. She didn’t seem too concerned about my symptoms and agreed it was probably a stomach bug but did suggest I visit an urgent care clinic just in case, because of the abdominal pain. Always best to rule out appendicitis.
I took her advice and drove myself down the road to the local Providence emergency clinic. I was seen straight away as they took abdominal pain seriously, I was told. My vitals were taken, and my fever was about 101. The doctor came in, pressed on my belly and sent me straight to the ER. It had to be appendicitis, he said. A few hours in the waiting room and I was finally called back. Another urine sample, more vitals, a blood draw, and lastly, an IV and some Tylenol for the fever.
When the doctor returned he was all smiles. He was cute too. Young. Looked fresh. out of med school (weird how your libido can suddenly come back to life in the most dire circumstances, but I digress.
He really seemed to love his job and spoke to me kindly and explained that he also believed I had appendicitis. He explained the surgery was simple, I’d feel better soon but before that, I needed a test to confirm. He ordered a CT scan and after another hour, was wheeled down and injected with contract that warmed me from the roof of my mouth to the tip of my junk. Simple. I was started to feel better, even laughing and joking with the techs. I had appendicitis; everything would be okay.
When I was wheeled back from the tests, the doctor poked his head in explaining he was on his way to look at my images. He’d be back shortly to talk about the results. During this time, I kept telling myself, “appendicitis.” Something common, something easily fixed. But, deep down, my deepest fear wouldn’t fade, the fear that it was something more serious. I just knew.
An hour came and went. I was tired, antsy, and ready for the diagnosis so I could have the surgery and feel better. But when the doctor came back his face was less bright and he wasn’t smiling. He sat down on the swivel stool at my right side and said, “It’s not appendicitis,” he paused. “It’s Crohn’s disease.
Crohn’s disease. I knew people with Crohn’s. I’d heard my doctor toss that word at me once or twice. After meeting with a GI specialist, she too said, “sounds like it could be Crohn’s.” but, I guess I never took it seriously. I thought people with Crohn’s ended up in the hospital all the time? I looked around; I was in the hospital.
He explained I had a fistula in my ileum. It was small and should heal without surgery, but they couldn’t diagnose Crohn’s without a colonoscopy, without biopsies. After that, I spent two days in the hospital, hooked up to two different antibiotics. I had a team of 8 doctors, including a couple infectious disease doctors. I wasn’t allowed to eat for almost 30 hours, just in case I did need surgery.
I laid there, hungry, tired, sick. I went into the hospital at 120 pounds at 5’7” and after two days, left at 108 pounds. I couldn’t stomach the antibiotics so, a midline was put in my left arm where I would receive daily, outpatient intravenous antibiotics for 14 days. A midline catheter is, “an 8 – 12 cm catheter inserted in the upper arm.” It’s a temporary thing but I had to leave it in during my treatment.
A month after my admission into the hospital and two weeks after my infusions, I was scheduled for a colonoscopy and upper endoscopy. Needless to say, I was less than thrilled. I had to fast again, which was difficult as I still hadn’t gained any weight from my hospital stay. My guts were sore and cramped and while the infection was gone, my fistula still ached. I drank the putrid solution and flushed my system, which gave me anal fissures and that familiar razor blade and lemon juice feeling returned. I won’t lie, pooping made me cry. Made me shake. It was all I could do to hold on and hold my breath. There was no breathing through this pain, breathing made it worse, thinking made it worse. Just hold on, it’ll be over soon.
Colonoscopy day came and while I was nervous, I was more concerned that they knew I was trans. I’d never been fully taken under a hospital gown before. Never been ass out in a surgery room. Thankfully, everyone was great, respectful and assured me I’d be okay.
The results of my procedure confirmed Chron’s disease. I remember coming out of my propofol daze, heavy tongued and dizzy, asking my partner repeatedly, “what’d they say? Is it Crohn’s?” in the distance, I heard him say, “yes.”
I remember crying, although I don’t remember feeling overly upset. Knowing I had Crohn’s didn’t make things worse, if anything, it made them better. I think I was upset because for most of my life, I had tried to many things. I had done so many different things in hopes that something would help, that if I just found that one thing, I’d feel better. Crohn’s meant that wasn’t possible anymore. Yes, there are treatments, and most of them work amazingly. Remission is possible and obtainable for many but not for all.
But, Crohn’s disease is a chronic illness. That means forever chronically ill, it means pills, infusions, injections, colonoscopies, surgeries, complications. It means my guts do things and there isn’t a whole lot I can do about it. I’m sick and I always will be to some extent.
But I know now, and like they they used to say on GI Joe, knowing is half the battle, and there’s a tremendous relief, a huge burden lifted with finally getting getting a diagnoses.
A diagnoses is an answer. A truth. It proved that I wasn’t crazy. I’m not a hypochondriac. I’m not dramatic (well not about this anyway). My body thinks my intestines are a threat and it’s not my fault it’s attacking them.
I am now 101 pounds, the lightest I have ever been in my adult life. It’s scary. I feel weak. I don’t look like me. Walking is hard, going places is hard. I’m easily fatigued but I’m hopefully. In a few weeks, I’ll be starting treatment. I don’t know if it’ll work but I’m feeling good about the odds.
There is no cure for Crohn’s disease. No diet will cure this disease, no amount of yoga or kombucha will help. Treatment can help though and yes, diet can make things better but, it’s a life long condition. Crohn’s affects people so differently. Some have very few symptoms and need very little medication to stay on top of it. Others lose parts of their intestines due to complications. It’s a personalized disease that isn’t always seen on the outside.
This is all new to me and I’m still adjusting to my diagnosis. I’ve been out of work for a month. I’m tired and unmedicated. However, I’ll be starting treatment soon and I truly am so excited.
Crohn’s is forever but maybe one day the pain won’t be.