‘The doctor said, ‘How do you want to leave this hospital? With a poop bag or in a box?’ I denied consent 8 times.’: Woman with ulcerative colitis, ostomy bag says ‘you only get one body, love it!’

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“I’d never considered this would be my life, my new normal. Never in my twenty-five years on this planet. I am 28 as I write this and I honestly didn’t expect that on my 26th birthday, I would be looking death in the face as he said, ‘I’ll leave you alone if you promise to poop into a bag for the foreseeable future.’

I was formally diagnosed with ulcerative colitis (UC), an inflammatory bowel disease, when I was eight years old. Just eight. That’s a single digit. A little kid. A baby, really, in the grand scheme of things. I don’t even have many memories from that time in my life except, well, the symptoms of UC and the occasional image in my mind of a bare-footed adventure where I think I believed I could become a fairy if I stepped into a mushroom circle at just the right time of the day.

So, it was UC and fairy-dreams. Couldn’t be more opposite.

The symptoms of UC vary from person to person, but the most common ones are bloody stool, severe abdominal cramping, mouth ulcers, chronic fatigue, rapid weight loss, and muscle weakness. Cute, right? Since it is a systemic autoimmune disease, UC attacks the whole body but tends to center its evil death ray on the colon. The colon is also known as the large intestine. The human body has about five feet of this and around twenty or so feet of the small intestine. So, that’s a lot of ground for a disease to cover, but my personal little UC monster covered all of it.

The symptoms never really went away for me. I suffered for so long I started to just instinctively say ‘I’m fine,’ to the question, ‘How are you?’ because suffering felt like my new normal. Yeah, I saw blood in the toilet every day – don’t you? Sure, I can’t eat certain foods without feeling like my insides are made of broken glass – you don’t feel that way, too? Sorry, no, I can’t sleep-over your house because I’m afraid I’ll have to spend forty-five minutes crying on the toilet after eating some salsa. That’s not normal for you? Oh. Just me, then? Cool.

I tried nearly every drug out there that I’ve lost count. There were steroids (the Devil), various biologics, suppositories, enemas (glamorous, I know), and I even changed my diet several times, too. I bought a Himalayan salt lamp to funnel positive ions or whatever into my space. I started doing yoga. I started seeing a holistic health doctor (I still see her, she is amazing) and ate only organic food. I took up meditation and kept a consistent journal. I ate kale. Nothing worked. It seemed everything I tried did not affect the disastrous symptoms of UC.

I missed almost all of fourth grade because of hospital visits. By the time I was 25, I’d had twenty-two colonoscopies. If you don’t know what a colposcopy is (even though you should be getting one every five or so years once you hit 30!) it’s when you liquid diet for about three days, drink the nastiest bowel prep ever that is somehow a liquid and a solid because of how salty it is, poo your absolute brains out all night, and then you wake up hangry and have a GI specialist shove a flexible scope up your (thankfully anesthesia-addled) bum to take pictures and make sure you don’t have 1) polyps, 2) lesions, or 3) signs of colon cancer.

In every single one of my scopes, I have always had 1 and 2 and my GI doctors confirmed I was well on my way to developing number 3. I’ve never had a clear scope, and that was incredibly frustrating. I was doing everything right! I took care of myself! I ate healthily, was kind to people, exercised, studied hard, donated to charities – I did everything right. But here’s the thing about ulcerative colitis…it doesn’t care.

In 2017, I started my first ‘big girl job’ – a teacher – after somehow, by the Grace of whoever, completing my Bachelor’s Degree in Classical Languages at Temple University (many hospital visits in Philly), then a Post-Baccalaureate in Greek and Latin at UPenn (hospitalized twice during that year – yay!), and finally getting my Master’s Degree in Greek and Latin from the University of Maryland College Park (where I’d spent basically the first year in a perpetual hospitalized state.) But then I landed a lovely job at a lovely all boy’s school, Loyola Blakefield, and I thought things were finally looking up.

Courtesy of Nicole Love

In September of 2017, just three days before starting my first day at my first big girl job, my dad died of a massive and sudden stroke. My dad also had UC (as well as Multiple Sclerosis) and he’d had numerous surgeries for it – an ostomy to remove pre-colon cancer, bowel resections, a j pouch that was doomed from the start – which all combined with his very poor physical health to give him a poor quality of life. That man was persistent though, made of more iron than Tony Stark’s suit, and came back from the brink time and time again. It was hard to see him suffer and juggle our always strained relationship, and it was really hard to deal with his passing.

Courtesy of Nicole Love
Courtesy of Nicole Love

I’m an only child and my parents are divorced. I felt the weight of his death all around, on my shoulders, my mind, my heart. I was incredibly stressed, dealing with his loss and with the hell that comes with arranging a burial for a loved one. I never thought I’d have to sign papers to take one of my parents off life support, but there I was, pen in hand.

Courtesy of Nicole Love

That was when my Flare from Hell started. On October 31 (my favorite holiday, by the way) of the same year, I had to run out of class in the middle of teaching and fly down the hall to the bathroom. I’d never been in such pain; I was sweating and crying. The school nurse had to drive me to the nearest hospital (my poor students were so confused) and I stayed there for a few days. I was hospitalized four more times during the school year before my final and worst hospitalization in April 2018.

At this point I’d lost twenty pounds in two weeks, dropping dangerously to one hundred pounds (and for reference, I am almost five foot four), couldn’t eat anything without intense cramping and searing pain, and was so weak that my bones clicked when I walked. I could barely get out of bed without help. It was the lowest my life had ever been, and I’d done everything right, I thought! So when I couldn’t even eat cream of wheat without crying, I knew my situation was serious.

Courtesy of Nicole Love

After a week of high doses of steroids (the devil, if you recall), a surgeon came into my hospital room with his team all Grey’s Anatomy style. Dr. Safar at John’s Hopkins is undoubtedly one of the most brilliant men on this earth, and he’s also a no-nonsense guy who tells it to you like it is, which I needed at the time but didn’t appreciate until way after.

‘How do you want to leave this hospital?’ He asked after I vehemently denied consent for ostomy surgery for the eightieth time. ‘With a bag or in a box?’ And me, the absolute dramatic and depressed diva that I was, seriously without any doubt, said, ‘Box.’

My boyfriend, Matt, had never been angry at me in the entire year we’d been dating, and I’m a Type A gal who likes things a certain way (I am working on my shortcomings, people) and tends to get overly emotional very easily (my astrological sign is cancer, if that reveals anything). That day, however, his eyes blazed with so much anger he didn’t even look at me when he said to Dr. Safar, ‘She’s getting the bag.’

Courtesy of Nicole Love

I knew I loved Matt on our second date. I know, I know, such a Disney Princess moment, but it’s the truth and I make no apologies. Sometimes you just know when someone was made for your soul, and he was certainly created to soothe mine. I was so afraid he would leave me if I got the bag. I’d spent so long thinking no one would ever love me and then when I finally found the perfect, most precious man, I had to get a poo bag? I wanted to scream and cry and throw things (I did), and above all, I didn’t want the bag.

I got the bag.

Courtesy of Nicole Love

And I’m still with Matt nearly three years later. We bought a house and added a second dog to our family.

Courtesy of Nicole Love

Waking up from surgery was surreal. I was in more bodily pain than I had ever been in and I felt the crushing weight of my decision full force. But one thing that was missing? UC pain. It was gone. And as the day went by and my resilient, beat-up, beautiful body I didn’t appreciate enough healed more and more. Everything got so much better. I actually cried – sobbed – when I ate my first solid food without pain. It was PB&J and my nurse looked at me like I had twelve heads as I ugly cried into my sandwich. It was glorious! The bag? I had to get used to that. That was a challenge. I was not very brave in the face of at first.

Courtesy of Nicole Love

Healing from ostomy surgery had its ups and its downs. I snapped at Matt more times than I’d like to admit (bless him) and I told him ‘you’re never touching me again.’ He would just look at me with those precious eyes somehow still filled with love and he would say, ‘Okay,’ and then pat my head and kiss my cheek and saunter away to get me mashed potatoes (you can only eat certain very beige foods in the first few weeks after ostomy surgery), and probably roll his eyes because his girlfriend was dramatic as hell but also alive.

My mom was my pillar of stability and support, my actual hero and wonder woman. She’d been to basically every hospital visit in my life, slept in uncomfortable chairs by my side, and cried silently when I woke up from a particularly bad night recovering from surgery and continuously mumbled, ‘What have I done to myself?’ She is the best mom in the whole world. Support is key when recovering from any major surgery or traumatic event. Support is particularly important for those of us with chronic illnesses because the conditions never go away, but sometimes people get annoyed with you because they don’t understand what you’re going through. You need those people who want to stay and try to understand more than ever. And if you have no one, well, now you have ME.

Courtesy of Nicole Love

Matt has never once shied away from my bag. To have his love and support is such a gift – it’s something I wasn’t expecting but it is the most precious and beautiful thing. My students and friends all know about it. ‘Ms. Love, I wish I had a poo bag because pooping normally is so exhausting.’ ‘You multitask better than us, so not fair!’ I have received overwhelming support in my personal and professional life, but I know not everyone has.

Courtesy of Nicole Love

I know some people are scared and afraid like I was. I know some people feel so unfathomably lonely and misunderstood as I did. That’s why I speak up and post online. I started posting regularly on my Instagram to advocate for the chronic illness community and help provide visibility for ostomy bags, which are way more common than you think.

There’s a huge poop taboo and stoma stigma in the world, which is unfortunate and unnecessary. I hope to help add a voice to the IBD community and help anyone suffering from an invisible illness or a bag or a port or TPN or traumatic injury or anything at all, believe they are so very beautiful and irreplaceable in this world. Society should not get to dictate whether you have a ‘normal’ body or not. You have a body, and it’s yours, and it’s perfect the way it is.

Courtesy of Nicole Love

I’ve come to love my bag and my body. I work out again, go places without fear and anxiety again. I live again. It’s a blessing. This bag has been a blessing. And I want everyone who has some sort of medical device or chronic illness or disability or differing ability to know how lovely you are. You are supported and loved and so very, very perfect. I’ve gotten some nasty comments on posts of mine, but the positive feedback and love far outweigh the negative. In this world, you really do have to love what matters, and that’s your health and your life. No one can tell you how to live it or how worthy yours is. Your life is worthy. And if you have no one else, now you have me.

You’re not alone in your struggles, your illness, or your hardships. You’re never, ever alone in this world. There are so many people out there who support you, who will lift you up when you are at your lowest, and who will tell you you’re beautiful and mean it. You’re never alone, and you are irreplaceable to this world. Please, if there is one thing you take away from this, let it be that your health is more important than anything else. Take care of yourself. You only get one body, so love it with everything you have no matter what it looks like.”

Courtesy of Nicole Love

This story was submitted to Love What Matters by Nicole Love of Baltimore, Maryland. You can follow her journey on Instagram and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘People think it’s gross, but without this bag of poop on my stomach, I wouldn’t be here.’: Young woman diagnosed with Ulcerative Colitis, says life ‘isn’t fair,’ but it’s ‘downright beautiful’

‘My boyfriend didn’t sign up for a sick girl. ‘I’d rather die than have a poop bag attached to me.’: Woman with ulcerative colitis learns to ‘love herself’ despite invisible illness

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