‘Your condition is dangerous.’ Blood came pouring out. I couldn’t live another day like this.’: Woman reveals ‘highs and lows’ of Crohn’s Disease, ‘I’m ready to take on what’s next’

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Trigger Warning: This story contains mention of suicidal thoughts that may be triggering to some.

“Sometimes life will take you on the most painful, crewel, and relentless of journeys to teach you important and unimaginable lessons you couldn’t possibly learn otherwise. Over the last three years, I have been on the most painful, devastating, grueling yet, life-changing, and invaluable journey of my life. This is my story.

In 2017, I was given a diagnosis that would change my life forever, a chronic illness that goes by the name of Crohn’s Disease. In short, Crohn’s Disease is a chronic inflammatory bowel disease that affects the lining of the digestive tract. Crohn’s disease can lead to life-threatening complications, and this, devastatingly, was the case for me. They say Crohn’s or Colitis can often be traced back to a stressful time in one’s life, and this couldn’t be more of a true statement for me. Late in 2016, my world came crashing down when my dad received the news he had terminal bone cancer. This rocked my world in a way I could not possibly describe with human words.

Only a few months later though, my boyfriend got down on one knee and popped the question. Now, it’s no secret wedding planning can be stressful but pair that with my tough, Harley riding, black-bearded, intimidating dad becoming a sick, frail, weak, and broken version of himself who was always in pain and told he only had a few months to live, and you’ve got yourself the most stressed out, sad, dismal, and depressed version of Brenda there had ever been.

Courtesy of Brenda Leigh Collins

It was during this time I started noticing blood when I went to the bathroom. At first, I thought this
was an irregular period but pretty quickly realized where it was coming from. I was also dealing with
pretty bad constipation at the time as well. No matter what I ate, be it plain grilled (and often terribly dry) chicken breast, carrots, and zucchini, I was terribly bloated and in pain. After hearing of my bleeding, the GP referred me to a gastroenterologist and I was diagnosed with a chronic illness called Ulcerative Proctitis, which is a mild form of Ulcerative Colitis.

At the end of 2017, my dad tragically passed away, which broke my heart into a million pieces, bringing immense grief, pain, and stress to my life. The following year, my health continued to deteriorate. I experienced complications, like needing emergency surgery for an infected anal abscess (ouch!). I was running to the bathroom around twenty times a day with severe urgency, though no stool would come out as I was dealing with severe constipation. I would lose nothing but blood and this led to extreme fatigue and anemia. I was then put on a steroid called prednisone (hello insomnia, mood swings, swollen, chipmunk cheeks, and a few unwanted pounds.) I pretty much pleaded with my doctor to do another colonoscopy and when he did, I was sent straight to the hospital for IV steroids with severe inflammation and patchy disease. This is where my doctor became confident we were dealing with Crohn’s Disease.

Courtesy of Brenda Leigh Collins

Thankfully, I was able to start a biologic drug, which settled my inflammation, and for the first time in a long time, I spent 5 blissful months completely symptom-free. When the bleeding returned in mid-2019 I was devasted. The remainder of the year was a slippery slope of bad health where I was running to the bathroom twenty to thirty times a day, losing blood every time, became incontinent, and couldn’t leave the house without fear of pooping my pants, which, to my dismay, happened a few times. I was dealing with extreme fatigue and abdominal pain and became extremely depressed to the point of wanting to end my life.

Courtesy of Brenda Leigh Collins

I remember I was a bridesmaid for a lifelong friend and the morning of the wedding, we needed to drive an hour to get to the church. I was petrified. All day, I was full of anxiety, fearing standing at the front of the church during the ceremony and needing to rush off to the bathroom in front of around 150 people. I didn’t eat a thing all day, was constantly analyzing how I felt, and though I wore a smile, I was a fretful mess. I managed to get through the wedding without even going to the bathroom once (that’ll happen when you don’t eat or drink anything for a whole day). Once I got home, I didn’t even have time to make it to the bathroom and was overcome with urgency. Blood came pouring out from behind and that was it. I had to take myself to the ER. I couldn’t live another day like this.

Courtesy of Brenda Leigh Collins

The plan was to have me on 3 to 5 days of IV steroids to quickly bring down the inflammation in my digestive tract and that should provide me with immediate relief. However, things weren’t settling. In fact, day after day, they began to get worse and I was rushing to the bathroom with horrendous diarrhea every half an hour. This left me feeling extremely weak, fatigued, and dangerously dehydrated. Turns out, I had contracted an infection called ‘C.difficile,’ which is an infection that also attacks the large bowel, just as my Crohn’s was. What happened next would drastically change my life forever.

I was confronted with a colorectal surgeon, who told me, ‘Your condition has become dangerous.’ I would be having emergency surgery to redirect my digestion and rest my last intestine, leaving me with a temporary ileostomy. Basically, a part of my small intestine sticks out of my stomach and all my waste is redirected into a bag. He came in and out of my room like a whirlwind and as he spoke, I bravely held it together, but the moment he stepped out, I broke down and sobbed. How could this be happening to me? I was only 25 and had taken such good care of my health all my life. I felt defeated by a disease I had relentlessly spent 3 years trying my hardest to manage. I was incomprehensibly devasted. That very night, I went in for surgery and woke up with an ileostomy and stoma bag.

Sadly, things went from bad to worse. I was still losing a lot of blood, constantly dehydrated, and became bedridden. They told me my stoma would take around 2 to 6 days to start producing ‘output’ (basically, a nicer way of saying poop). But as each day went by, my stoma remained dormant. This was causing excruciating abdominal pain so I was given two pain machines to try and manage this. I spent a week unable to eat and was deemed ‘malnourished.’ This meant I had to go on TPN, which is basically tube feeding, and would spend a number of weeks not putting a single bite of food in my mouth.

Courtesy of Brenda Leigh Collins

By day 8, I still hadn’t had any movement from my stoma. This concerned my surgeons quite a lot, and once I had a CT scan, it was revealed my stoma had herniated. A bit of ‘floppy’ bowel became stuck under the stoma, blocking it from producing waste. This was extremely rare. My surgeon said she had never seen it before, and that night, I was taken for further emergency surgery. I spent from December 10 to January 10 in the hospital, meaning Christmas, New Year’s, and my 26th birthday were all spent confined within the four walls of my hospital room. Just trying to walk again was an exhausting and painful experience. I lost a lot of weight, became weak and frail, and only a shadow of my former self.

Courtesy of Brenda Leigh Collins

Eventually, I was discharged with a plan to start a new biologic medication my body might respond to, and hopefully, within 6 months, reverse my bag. This sounded good in theory, but after about a month of good health, things went downhill again. After my third hospital admission of 2020, my surgeon bluntly said, ‘We’ve tried everything. We just get on with it.’ On May 29, I had a proctocolectomy where the surgeon removed my colon, rectum, anus, and ‘sewed up’ my butthole, leaving what is commonly referred to as a ‘barbie butt.’ This also means I will now have a poo bag attached to me for the rest of my life. I was angry, fed up, and extremely disappointed in this outcome.

Courtesy of Brenda Leigh Collins

I felt like I had been given a small amount of hope at the beginning of the year, and to have that ripped away from me so quickly felt incredibly cruel, and almost too much to bear. I have to give all my thanks to my mom and loving husband, who showed up to the hospital day in and day out without fail. My husband showered me, gave me bed baths, helped change my ostomy bag, brought me food every day, changed my sheets, administered my medication, and even helped me brush my teeth. Together, these two incredible people encouraged me to soldier on, cried with me, listened to my pain and despair with the utmost empathy, allowed me to be depressed and miserable, but always reminded me this was only for a season, and everything would be alright in time.

Courtesy of Brenda Leigh Collins

Human words could not, even slightly, effectively depict the pain and trauma I’ve experienced over the last 3 years. Barbie butt surgery was the most excruciating surgery of them all, especially getting the stitches individually pulled out from my bum. (Imagine having barbed wire in your bum and having your nurse cut and pull it out, eight times.) I had lost my spark and enthusiasm for life. I couldn’t believe I would never live another day without a bag. I would never be ‘normal’ again. I had missed out on so much of life, the first 3 years of my marriage consumed with hospitals, doctor’s appointments, psychologists, horrible medications, and life-changing surgeries. This wasn’t how my life was supposed to go or was it?

Courtesy of Brenda Leigh Collins

I am now 6 months post-surgery and find myself reflecting on all that has happened this year. You would be amazed at what my life now looks with a permanent ileostomy. I have returned to work and am back at the gym. I’m running again, discovered a love for cooking delicious, healthy recipes, rekindled my enthusiasm for life, and little by little, learning to love myself again. I have made some incredible connections with chronic illness warriors all around the world who have experienced very similar suffering and I am inspired each and every day to live the best and fullest life I possibly can. Upon reflection, I recall a day in the hospital when my stoma wasn’t working yet and my stomach was so painfully distended. No morphine, PCA, ketamine, or anything else would provide even the slightest relief. With tears streaming down my face, I told my mom I would rather die than live another day in that much pain. No one should feel like that, ever, but I was pushed to my limit, both physically and emotionally exhausted.

For a while now, I’ve documented my journey on Instagram, including my time in hospital before and after major surgery. I don’t sugarcoat a thing, revealing the highs and lows of living with Crohn’s Disease and a permanent stoma. Here I am today, a few body parts less. Every day is not easy and living with a stoma certainly does present its own unique challenges, but I’m learning to overcome each one as it comes. I’m laughing again, I’m joyful, I’m me! I’m becoming the wife, sister, daughter, and friend I’d always wanted to be. I believe I am finally transitioning to a new chapter in life. It’s been a long time coming but there was light at the end of my dark tunnel. It’s not just a cliché, I promise.

Courtesy of Brenda Leigh Collins

I now have a story of resilience, strength, and immense growth. I want to be there for anyone who is told they have an incurable disease. For anyone who is depressed, sick, and struggling. I want to hold their hand through it all, promising and reassuring them it will be okay, the sun will again rise. If can help one person on their path through the desert so they don’t feel alone, I’ll consider that a privilege, blessing, and in my books, a job well done. I can’t wait to see how God is going to use all I have been through. Nothing is without purpose. I remain confused and unsure of what that purpose is but I am overwhelmed with gratitude, alive to thrive, and ready to take on whatever life brings my way next. Bring it on, I say!”

Courtesy of Brenda Leigh Collins

This story was submitted to Love What Matters by Brenda Leigh Collins from Sydney, Australia. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘Your options are running low.’ I was losing blood. My body was disintegrating. ‘But I’m so young!’: Teen raises awareness for Ulcerative Colitis and stomas, ‘I turned it into a positive’

‘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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