By Brandon Gage
My name is Brandon. I am 30 years old. I live in New York City.
After years of suffering in silence, I was diagnosed with ulcerative colitis in October 2015. This disease has forever changed the course of my life and made it impossible for me to continue my work as a commercial real estate broker, a job which requires constant traveling and time on my feet. I’m hoping the documenting of my experience motivates others to get help; no one should suffer in silence as I did, but doing so is all too common when it comes to conditions relating to poop. I’ve been very open about my experience, and I hope this helps others who are suffering to get the help they need. It’s okay to be embarrassed, but it’s not okay to ignore it, and it’s not something to be ashamed of.
That said, having ulcerative colitis is a living nightmare. I would wake up every hour to use the bathroom. Because the inflammation was at its worst in my sigmoid, or left-side of my colon, I was unable to lie on my sides. This is typical for UC; it begins in the rectum and works its way up the gut. Even sitting upright was nearly impossible as I had hemorrhoids which felt the size of golf balls. Reclining was the only position in which I was marginally comfortable. Even on “good” days, I was in constant pain and discomfort, and the fear of having an accident in public often kept me from leaving my apartment altogether. Carrying groceries, getting dressed, showering, sleeping, and even walking to the corner diner for a coffee became daunting tasks.
Since moving to New York in 2011, I have worked as a commercial real estate broker, nightclub promoter, and bartender. By August 2014, I had my own apartment, a growing real estate business, a flourishing social life, and I was in great shape. I was also getting more involved with the LGBT community. I was happy, I was fulfilled, and I was healthy, or so I convinced myself.
But all was not well. The truth is, I’ve always been what my mother refers to as a “bathroom junkie.” I would always have to use the bathroom right before leaving home and/or as soon as we would arrive wherever we were going. My middle school years were when I first realized that my gut wasn’t quite normal. I knew I used the bathroom more often than other people, but it never interfered with any of my activities. Perhaps the most unusual quirk I had was, when I’d go from warm temperatures to cold (like going outside in the winter, or stepping out of a hot shower into a cold bathroom), I would immediately have to go, and go urgently. Blood had been making random appearances in my stool for years, but I was not informed enough to recognize this as a problem. I assumed it was due to hemorrhoids from working out, not eating enough fiber, or just straining too hard (which I also didn’t recognize as a symptom of IBD/UC). I never mentioned these things to anyone. I just adapted over time as my “normal” continued to slowly decline. Since hindsight is 20/20, I can assuredly say I was in denial. In some ways I still am. I couldn’t possibly have anything seriously wrong with me, I thought. I never get sick. I never have fevers. I eat well and exercise daily. I also couldn’t afford health insurance, since, working as a real estate broker, I didn’t have an employer-based plan. At 28 years old and hitting stride in my personal and professional life, literally the last thing I worried about was debilitating illness stealing both of those things – especially an embarrassing “bathroom” disease.
It was late 2014 into early 2015 when the bleeding became more frequent and more pronounced. Bowel movements were also becoming increasingly painful and frequent. I began having trouble sleeping through the night, and I would often wake up in pain. These bowel issues were starting to slow me down in the morning, which started to impact my ability to do my job. My social life was also being impacted, as when I’d be out, I’d have to excuse myself very frequently. My parents would remark upon visiting me that my weight had dropped and that I looked gray. As my blood loss became more frequent, my sex drive declined…rapidly. I would later come to learn this was due to severe anemia and chronic dehydration.
The most emotionally devastating aspect of having UC is the psychosexual factor. Anemia and malnutrition aside, the embarrassing and exhausting nature of the disease renders sex undesirable, or just impossible. I didn’t even want to hug anyone, I felt so gross and drained. This was especially crushing for me, as when UC hit me, I was finally coming to my own in the gay world. I had found the confidence and comfort with myself that I had never previously experienced, only to have it taken from me within a few months. Watching my friends have the experiences I was supposed to have with them was especially difficult.
It was in the fall of 2015 when the full brunt of this disease hit me. I was in the bathroom hourly (or sometimes more). I couldn’t sleep. My ankles and knees swelled up, making it difficult if not impossible to walk. No matter how I moved, what I did, what I ate, I was rushing to the bathroom. I had hemorrhoids that felt like the size of golf balls. My weight was dropping by a pound PER DAY. I finally admitted to myself, after my mother told me I looked like a concentration camp victim (which, yeah, I really did), that I really needed help. I had a colonoscopy and was diagnosed with ulcerative colitis. It was both a sense of relief and fear; I was glad I had answers but could not imagine what would lie ahead of me. Still, I had good doctors looking after me, and I was doing research on my own. Reading forums and medical journals helped me stay informed. At the time, all I wanted was relief as I didn’t have the strength to spend any more of my days crying, hunched over on the toilet.
First, I was prescribed Apriso, which is a special anti-inflammatory for people with IBD. Prednisone was also prescribed, which quickly eliminated the arthritis in my knees and ankles. I was also given 6-MP, an immunomodulator usually used as part of chemotherapy for cancer patients. For a while, this combination seemed to be helping, but only minimally. I was still in the bathroom dozens of times per day. The bleeding was relentless. The pain… I’m not sure the English language has words to adequately describe what ulcerative colitis feels like. Imagine having tuberculosis and giving birth out of your rectum, only 20+ times per day, every day. Every part of my body ached. When I’d go to the bathroom, I would be sweaty, dehydrated, out of breath, and every muscle in my body would be sore. My quality of life had gone from about an 8/10 to about a 1. Long car rides were out of the question. Taking the subway was a risky proposition, since I always needed to be near a bathroom, and God forbid my train get stuck in a tunnel. Lack of bowel control led to many public disasters: on the train, at work, on the street, in nightclubs, in restaurants, at the gym… nowhere was I safe, so I started being reclusive and staying home. Imagine the sheer humiliation of being a broker and meeting a prospective tenant and soiling your pants in front of them with no warning. This happened to me countless times. Wearing white also became impossible, for obvious reasons. I made that mistake a few times, including once on the subway when I didn’t make it to my destination.
By spring 2016 it was evident that Apriso wasn’t helping, and I could not continue prednisone indefinitely. I was prescribed Uceris, a steroid developed for UC. After 3 months, it too did not work. I had recurrent flares, almost like clockwork, every 8-10 weeks. UC flares are completely, totally, and utterly debilitating. I cannot count how many times I’d be sobbing on the toilet hoping to die. The pain was simply unbearable, as was the monotony of constantly going to the bathroom, going back to what I was doing, and then 5 minutes later having to go again. And again. And again. This cycle was especially cruel at night, as it made sleeping impossible. I could only lie on my back, and every hour, on the hour, I’d have to rush to the bathroom, often not making it in time. Uceris was a failure (you’d think a drug that costs $2200 a bottle would work).
In August 2016, I began taking Humira, the biologic whose ads make this drug sound like my wonder drug. Humira is a wicked and cruel joke. The injections hurt. It retails for $3,500 per shot (thankfully covered by my insurance), and the injections didn’t do a thing to help with UC symptoms or underlying inflammation. Seeing that drug advertised so vigorously is infuriating, with its happy people running around smiling; nothing could be further from the truth. I felt misled and cheated as I waited the mandatory 6-12 months for it to potentially work. Meanwhile, the doctors knew all along that Humira would likely fail. In the meantime, I added prednisone back into my daily regimen and things slightly improved, but only briefly. The flares seemed to be getting worse. It’s important to remember that even the most aggressive UC drugs only have a 25% success rate.
During the period I was on Humira, I missed once in a lifetime events: I missed my mom’s 50th birthday celebration and Christmas. I bowed out of being best man at my best friend’s wedding. I had to cancel on friends who were coming from out of the country to stay with me. I missed my grandfather’s and uncle’s funeral, both men whom I adored and with whom I was very close. But perhaps most importantly, I was physically unable to do my job. My world was imploding, and I was doing my damnedest to try and keep it together. My denial, paired with my incessant demand of self-perfection, would ultimately be my downfall.
By fall 2016, I was no longer able to continue working in real estate. I had joined a firm with an office, thinking that I could run a team and have a central location to use as a pit stop as I was out brokering. WRONG. I was rarely able to make it to the office, and I was unable to do my job when I could make it into work due to constantly needing a bathroom. Being a real estate broker requires endless walking and traveling throughout the city. Besides being too physically weak to handle walking and traveling, the unpredictable and unending emergency bathroom urges made doing my job impossible. Walking more than very short distances was too painful and too stressful. I was constantly exhausted, depressed, and withdrawn. This was a huge hit to me as I loved working in real estate and, at the time, it was really all I knew having worked in the industry for over 5 years. I got a job as a bartender, which was a lot of fun and close to my apartment. Sadly, that too would not work out due to my health.
After the new year, I began a new course of treatment, Remicade, which is given by infusion every few weeks. After 3 months, I was still only getting worse. I had accidents at work, at the gym, and I was in constant pain. Granted, my pain threshold is pretty high given what I was able to muscle through for almost two years. But during a visit to my family in Maryland, I suffered a massive UC flare and had to go to the ER because I was unable to urinate and bled profusely when using the bathroom. I was in the hospital for nearly the entire first week of April. I was re-prescribed dangerously large doses of prednisone to help ease my symptoms. The following week, back in New York, the same thing happened, and I spent another night in the hospital. I had the realization that I could no longer take care of myself, and that I could not manage this disease on my own.
That’s when my doctor recommended surgery; a total colectomy with a temporary ileostomy since all pharmaceutical options failed. Surgery, I was told, would end my nightmare. Let’s do it, I said. We scheduled the surgery for August 4, 2017.
Despite continuing my Remicade treatments, along with prednisone, 6-MP, Bentyl (for cramps), Percocet (for pain) and rest, I continued to flare uncontrollably. The flare put me in the hospital again from July 5-7. I could not handle this disease any longer. My gastroenterologist scheduled emergency colon removal surgery the following week. Suddenly, my pain started to transition into excitement. I wasn’t at all nervous about surgery, as nothing could be worse than what I was already going through. Plus, I was on high doses of prednisone for so long, which can cause its own slew of problems. Surgery was my only option, and I wish it had been offered to me in the beginning.
On July 11, 2017, I underwent a total colectomy and now have an ileostomy (which I lovingly named Pinki). I’ll have to wear an ileotomy bag for 9 months. This was the first of three surgeries that are required. The surgery didn’t scare me, but having my guts spill into a bag attached to my torso was certainly a strange reality to accept. Once I got past the “ick” factor of having the end of my intestines hanging out of me, adjustment was pretty easy, and it was far better than being glued to a toilet.
Two weeks after my colectomy, I noticed that my post-pubic sutures were getting infected. A quick trip to the local ER resulted in a prescription for amoxicillin. In the following days, it got worse. I was also having severe pains in my gut. There was no output into my ostomy bag. I rushed to the ER and, following a CT scan, I was diagnosed with a small bowel obstruction. I showed them my infection and had it cultured, cleaned, and bandaged. It was found that I had ESBL E. coli, which is a drug-resistant strain. It’s a common post-surgical complication, and was successfully treated with a 3-day course of IV Entrapenem. This diagnosis will follow me, though, as I will forever be on ‘contact isolation’ in hospitals. Actually, this means I’ll have my own room, so there’s some silver lining. All these ER trips were not only taking a toll on me, but also my family members, particularly my mom who used all her PTO being my patient advocate and making sure that I was at least comfortable at home and at the hospital.
After 4 days in the hospital, my symptoms eased and I was sent home. A few days after being released, the bowel pain returned, and this time it was even more intense. I started vomiting violently at home, so I went back to the hospital. During this visit, a naso-gastro tube was inserted up my nose and down into my stomach. This is essentially a stomach pump. For those who don’t know, an NG tube is inserted up the nose and down the throat. After several minutes of vomiting, I felt a little better. A CT scan showed my stomach was the size of a pumpkin. This resulted in another 3-day stint in the hospital, and my symptoms eased thanks to a diet of ice chips. The surgeon was reluctant to perform surgery on me so soon after my previous procedure as I was still full of scar tissue and my organs were still healing. This ended up being a futile wish.
A couple days went by, and the bowel obstruction returned, this time even MORE painfully than before. Once again, I rushed to the ER. I had been on a liquid diet for the previous few days, so having another NG tube wasn’t necessary (not to mention the pain and discomfort layered on top of a bowel blockage). The following morning, I underwent an emergency surgery resection of my ileostomy. The muscle fascia surrounding the stoma had been too tight (this is a relatively common complication of a total colectomy), so the surgeon opened me up and adjusted it. After 3 days of a liquid diet and some walking, I could go home. Since then, recovery has been slow and painful. I still bleed some from the remaining bit of meat that’s still in me, but that’s getting fixed in January when I have my second procedure.
Despite the complications, having an ileostomy and a bag really isn’t so terrible. It is certainly better than being sick and in pain all the time. Sure, it’s extra body maintenance, but it doesn’t hurt, and I usually don’t even notice it until it’s full. It only takes a few minutes to change, which I do in the shower every few days. I empty it when I pee, and my time in the bathroom has decreased by 95%. Instead of spending countless, never-ending hours in the bathroom every day, I’m down to a few minutes per trip.
Having a total colectomy was absolutely the right decision. While it’s true my life has completely imploded, I am blessed with a supportive family and understanding friends, and not being sick can’t have a value placed on it. My roommates in New York are my heroes, and I still don’t understand how they put up with me for so long. My mother, brother, and stepdad are my heroes too, as they have been looking after me and helping me get my life back together. In the time since my surgery, I’ve started a new career, can travel, and was able to get a car.
My second surgery will be in January 2018. I’ll be going into this one far stronger than I was for the first, and I’m looking forward to it. This will be a J-pouch surgery, where my small bowel will be re-sectioned into a new rectum and my ileostomy will be adjusted. It will require a few months of slow recovery. Three months later, my ileostomy will be reversed and I will have a functioning digestive system and a new life. Thankfully, New York is a state that expanded Medicaid, without which I would be in a very different position.
***
Some background on Ulcerative Colitis:
Ulcerative colitis, one of several conditions within the inflammatory bowel disease family, is an autoimmune disorder in which specific T-cells in the immune system mistake healthy intestinal tissue for a foreign pathogen. UC is commonly correlated with IBS (irritable bowel syndrome). While some of the symptoms are similar, UC is a product of systemic inflammation, while IBS is a functional digestive disorder. This unpreventable, uncontrollable inflammatory response causes ulceration in the mucosa lining of the colon. The ulcers that form lead to chronic pain, bleeding, discharge, and weight loss. Nutritional absorption rapidly declines. The inflammation also causes chronic diarrhea, constipation, nausea, sore muscles, swollen joints, anemia, memory loss, decreased sexual function, depression, and anxiety (to name a few more pronounced symptoms). Ulcerative colitis is completely debilitating, humiliating, and isolating. The pain associated with UC is unbearable. On the pain scale, it’s a constant 8-10. My quality of life rapidly dropped from a 9 out of 10 to about a 1.
Inflammatory bowel disease has no agreed upon cause and no cure. Ulcerative colitis can lead to increased chances of colon cancer and can metastasize into other autoimmune conditions such as Crohn’s, multiple sclerosis, or rheumatoid arthritis if left untreated or if treatments fail to put UC into remission. Removing the diseased colon and rectum is the only way to stop UC. This is a 3-stage (assuming nothing goes wrong in the interim periods), year-long process of surgery and recovery.
An estimated 1.5 million Americans have some form of IBD, though because of the embarrassing stigma of “bathroom diseases,” I believe that IBD is vastly underdiagnosed. People simply don’t like talking about bathroom stuff, even with doctors. It’s embarrassing, and the tests and treatments are invasive. Treating IBD is also enormously expensive. Many of the drugs used to treat IBD, such as biologics like Humira and Remicade, cost thousands of dollars per dose. Thankfully, due to Medicaid expansion under the Affordable Care Act, my illness has been covered. For individuals without insurance, IBD is a financial death sentence.
Living with UC requires constant monitoring of diet and bodily functions. Because the triggers of the inflammation are unknown, and the symptoms so unpredictable, dietary changes can have little or profound effects on how UC manifests. Flares are unpredictable and absolutely crippling. Living with UC also means routine colonoscopies and blood tests, both of which are painful, invasive, humiliating, and time-consuming. Managing this condition is a full-time job.
Inflammatory bowel disease is listed as a disability under the Americans with Disabilities Act as of 2009. Despite this progress, IBD sufferers have little recourse when it comes to disability aid. IBD should be added to SSDI’s list of Compassionate Allowances. Ulcerative colitis is a chronic, uncontrollable, completely disabling disease. It drastically reduces quality of life, and eliminates one’s ability to work or go to school. Adding IBD to the Compassionate Allowances list would enable fast-tracking of applications and higher approval rates for IBD sufferers, while eliminating the burdensome appeals process and financial pressure of hiring lawyers. People suffering from IBD often cannot work and need immediate assistance as they often have no income due to the debilitating nature of the disease.