If you followed me here from my Instagram, you might be aware that I was diagnosed with Ulcerative Colitis (also known as UC) this year. I feel compelled to share my journey thus far, my misdiagnosis (which, by my very unscientific survey in the UC support group in Facebook, is quite common), the shame and embarrassment associated with Inflammatory Bowel Disease, and how I’m working on getting well.
Content Warning I’m gonna talk about poop and bodily functions here. If that makes you uncomfortable, click here to visit my Pinterest page and scroll some pretty photographs instead of reading this post. But I promise there won’t be any awkward photos on here 🙂
Let’s start with some basic stuff – what is Ulcerative Colitis (UC)? Ulcerative Colitis is an inflammatory bowel disease (IBD) characterized by ulcerations and inflammation in the colon and rectum. UC is limited to the colon and rectum with superficial ulceration. Crohn’s Disease is another inflammatory bowel disease that affects the entire GI tract, from mouth to anus. UC and Crohn’s Disease are related to dysfunction of the immune system (ie an autoimmune disorder) and are NOT the same as irritable bowel syndrome (IBS), although the two are frequently confused or it is assumed these digestive issues are similar.
The most common symptoms of UC are frequent diarrhea, bloody diarrhea or rectal bleeding, stomach pain, fatigue, and weight loss. Not all patients have all these symptoms, and while the symptoms can be bothersome, not all patients experience symptoms to a debilitating degree. For a long time, I was one of those people. People with UC go through periods of active flares – when symptoms are at their worst, and remission – when symptoms are primarily under control.
I had my first flare when I was 22 years old.
I was in my first year of pharmacy school. I was miserable. I was embarrassed. I hid what was happening from everyone – roommates, boyfriend, parents – no one knew. On top of the stress of navigating a doctoral program (you can imagine the pressure a 22 year old feels in this situation), I was experiencing frequent diarrhea, tinged with blood and mucus, and gut wrenching stomach cramps. Like all mature and wise college students, I ignored it and hoped it would get better with time. I know you will be shocked to hear… it didn’t.
After a few months of dealing with these symptoms, I broke down and mentioned it at my annual gynecologist visit, who referred me to a gastroenterologist in town. I recall being told this GI doctor was on the verge of retirement and only practiced one day a week and therefore my referral visit was scheduled over a month out. The time for that visit arrived, the provider listened to the symptoms I described, and performed a digital rectal exam. He said he didn’t see any evidence of hemorrhoids that would be causing the bleeding, but I likely had an anal fissure or something of the sort and to take stool softeners and use a prescription hemorrhoid cream to address the issue. I was given an oral medicine for stomach cramps for good measure.
Right now, 35 year old Ellen is screaming and so frustrated. Frequent diarrhea, blood in the stool, and abdominal pain should have all been red flags. I should have pushed for a colonoscopy, bloodwork, or something to discover the root cause. But I didn’t. I didn’t know any better. Things got better, but ever since then, I have always had blood when I go to the bathroom. Sometimes worse than others, but it persisted until my most recent flare that sent me into a tailspin. Now, older Ellen that knows more about UC suspects that at that point I only had ulceration and inflammation at the end of my colon – what is known as proctitis. Topical (aka suppositories) corticosteroid treatment is standard therapy and it probably sent me into remission. My bowels were relatively quiet for nearly a decade
Fast forward to November 2020.
I don’t know what triggered this flare. Why after years of generally being “normal”, things got out of hand. I spent November to January miserable. Toilet bowls filled with blood. Multiple daily episodes of uncontrollable diarrhea. More bathroom trips in a day than I could count. Fear of not being within walking (honestly, running) distance of a bathroom. Stomach pain. Bone crushing exhaustion. I felt incredibly guilty because it got to a point where the girls would sigh with irritation because Mommy was in the bathroom again. If you have small children, you know that bathroom trips can be a group activity (someone please tell me that ends someday LOL), but even they got tired of that group activity occurring eight times during their waking hours.
Once Matt realized what was going on and how bad my stomach issues had gotten, he urged me to see a doctor. I was hesitant. This had happened before. It had gone away on its own (mostly) before. And, I really REALLY didn’t want to talk to someone about…poop. I realize how silly this sounds, but as a kinda awkward, anxious person, the idea of bringing up my bowel movements to a doctor again when I had been told in the past it was nothing, felt…daunting. When I brought it up to my primary doctor, that wasn’t even the intention of my visit. I was having sinus issues and wanted to rule out COVID because as a retail pharmacist, I had potential exposure. After I got the all clear and it was verified I had a sinus infection, the nurse practitioner said, “anything else you want to discuss before I send your prescriptions in?”
And then it all just came spilling out. Talking about the blood, the frequent diarrhea, the stomach pain and my tiredness. I don’t remember, but I probably cried. Because I always cry when I get uncomfortable. She asked me about family history of colon cancer. She got the supervising physician who put in a referral to a (different) gastroenterologist. At this point, it is mid-December and I couldn’t be seen until mid-January. The first hard part was out of the way – admitting what was going on and seeking treatment.
I don’t know why, but I have a tendency to wait until things are really really bad before seeking medical attention. Don’t be like me. If you are having health issues, go.to.the.doctor. That is what they are there for. If you have access, please go get help.
To be honest, going to the gastroenterologist office, I was really nervous and scared. Was he going to believe me? I knew as a medical professional at this point that I likely was dealing with some form of IBD or colon cancer. My anxious mind of course was fixated on the big C word. To my relief, as I described my symptoms to this friendly, kind physician, he said, “well, you need a colonoscopy – what are you doing tomorrow?” Oh. Whoa. Fast forward through the joy of colonoscopy prep (anyone want to chat about that adventure? No? LOL) and I woke up on the other side of my colonoscopy with a diagnosis of Ulcerative Colitis, left-sided colitis to be exact. I even got some pretty neat photos of the inside my colon comparing healthy tissue to ulcerated and inflamed tissue. I was so relieved to wake up and not be told that I was dealing with cancer, that it took a bit for the diagnosis of UC to set in.
Now I’ve got a diagnosis and a new prescription for mesalamine, an anti-inflammatory medicine. In my head, I am thinking, I’m going to be back to “normal” in no time. No such luck. I was started at a moderate dose of mesalamine – no improvement. Dose doubled – no improvement. Adjust your diet to remove potential trigger foods. Oh, but trigger foods aren’t the same for everyone and there isn’t any sort of test to tell you what to cut out, so trial and error it is. We aren’t going to talk about the four days I cut out coffee. Then we moved to the corticosteroids. Oral corticosteroid therapy is miserable. I know this as a pharmacist. I opt for the rectal corticosteroid option. Because the inflammation extends up the entirety of the left side of my colon, an easy-peasy suppository wasn’t going to cut it. That meant 8 weeks of corticosteroid enemas. If you are reading this because you have UC and you’re debating if you want to do the enemas, my vote is go for it. It was not nearly as bad as I thought it was going to be. Apparently my body is pretty sensitive to corticosteroid therapy, because I still experienced a plethora of steroid-related side effects. Lying in bed awake with my heart racing, moodiness, night sweats, irritability, and weight gain. And worse, I’m still…shitting my brains out. Neat.
When I say starting Stelara gave me my life back, it doesn’t feel like a dramatic statement in the slightest.
Stelara is one of several medications referred to as a “biologic” medication that, in the most simple terms, helps to calm down an overactive immune system. These type of medications can be used to treat a variety of autoimmune diseases, including IBD, rheumatoid arthritis, and psoriasis. My doctor (who is awesome and treats me with respect as both a patient and a fellow healthcare provider), gave me the option of several biologic medications since that was the next step in the treatment process. I chose Stelara mostly because after the initial infusion, I would be able to self administer doses at home every eight weeks instead of dealing with scheduling visits to my local infusion center (and therefore arranging childcare, etc etc).
At this point that I’m writing this, I’ve only had my initial loading dose, which is a high dose of the medicine to jump start it working in your system. Two weeks after this infusion, I felt like a new person. I CAN PASS GAS WITHOUT FEAR OF POOPING MY PANTS. THATS A BIG WIN Y’ALL. I can lay down in the bed with my girls at night and not have to cut my snuggle time short because I have to go to the bathroom for the twelfth time that day. I went to the beach with my family and enjoyed the trip AND didn’t keep dibs on the nearest bathroom. It has been glorious. I’m currently three days away from my second dosage, and while the process of dealing with insurance approvals and the specialty pharmacy mail delivery process might have given me another twenty grey hairs, I’m incredibly thankful for the advances in science that have allowed me to live my life again. My flare symptoms have started creeping back in as I get closer to my injection date, but that is normal and hopefully will improve as I continue to use the medication.
So now what happens?
Well, I stay on the mesalamine and Stelara as long as it keeps working. And I get to live my life.
I can take my kids for walks and to the pool without having to cut those trips short for a bathroom break. When I get home from work, I walk in the door and hug my husband in the kitchen, breathing in his soothing smell and lingering there while we chat about the joys of retail pharmacy, instead of sprinting through the door to the bathroom. I can say yes to visiting friends and family without worrying that I’m going to spend the whole get together in a strange bathroom. And I’m not going to have to say goodbye to coffee any time soon.
Listen, I just spend an a lot of time writing out a blog post about poop and my bowel habits. Let us all agree to normalize bodily functions and to not be embarrassed if/when those bodily functions aren’t functioning properly. And here is my PSA to talk to a medical professional if something seems off about you body. AND, if you feel like your concerns are not being heard or dismissed, IT IS OKAY to get a second opinion. IT IS OKAY, to request bloodwork. IT IS OKAY, to tell your provider document that you asked for bloodwork, a referral, a medication change, etc and that they refused. If I have learned anything through this process, it is not to take your good health for granted and that NO ONE is going to advocate for your medical care the way you will.
If you are looking to learn more about Inflammatory Bowel Disease, the Crohn’s and Colitis Foundation is a great resource.
PS – I did my shot today and it was super simple and way less scary than I had hyped myself up for.
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The content in this blog post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. I am sharing my experiences as a person with UC.