Grieving Ulcerative Colitis: Mourning a Life Interrupted by Pain
Grief with ulcerative colitis runs deep, marked by hospital stays, sudden flares, and the constant fear that peace will never last.
This post blends real grief with grounded knowledge. It isn’t clinical. It isn’t distant. It’s meant to sit beside you—not above you. The story you’ll read is meant to reflect what so many feel when living through or witnessing this condition: confusion, exhaustion, and quiet forms of courage.
If what you read feels familiar, please speak with your doctor. Your pain deserves more than silence.
She Lived Between Bathrooms and Brave Faces
It began with urgency…a twinge, a cramp, a pressing need to go…NOW. It happened again, and again….
By the time she turned sixteen, the situation had escalated to the point where she felt she had to speak up. She had already memorized the bathroom locations at school. She had mastered the art of faking a smile during group projects while secretly calculating how far she was from the nearest stall.
The diagnosis came: Ulcerative Colitis. The doctors informed her it was chronic, that it would flare up, but could be managed.
🧠 Symptoms & Types:
– Bloody stool, pus, urgency, cramping, rectal pain, fatigue, fever
– Types depend on location:
– **Ulcerative proctitis** (rectum only)
– **Left-sided colitis** (rectum through descending colon)
– **Pancolitis** (entire colon)
What they didn’t mention, what no pamphlet or gastrointestinal specialist warned her about, was how shame could dig deeper than inflammation. A body that turns against itself doesn’t just rob you of your health; it takes your confidence, your spontaneity, your appetite for joy.
She stopped dating. She stopped eating in public. When friends asked why she wouldn’t touch the pizza, she shrugged and said, “I’m not hungry.” They could never understand what one wrong bite could cost her.
It wasn’t pain she feared… It was accidents… The sound her stomach made in a silent room. The fear of losing control over something she never signed up to manage.
She missed dances, Vacations, Whole semesters faded into a blur of fatigue, steroids, and the quiet devastation of waking up unsure if it would be a bathroom day or a brave face day.
Dreams floated through her mind, but each was tethered to backup plans: spare clothes, wipes tucked in her purse, the knowledge of how long she could sit still without feeling like she might burst.
Complications:
– Bleeding, perforation, toxic megacolon, colon cancer risk, malnutrition, extraintestinal issues (joints, eyes, skin), blood clots, delayed growth in children
Causes:
– Unknown etiology but linked to immune malfunction, genetics, and environmental triggers
– Most often begins before age 30, higher risk in Ashkenazi Jewish populations
– NSAID use can worsen symptoms
One flare-up landed her in the hospital, where the doctors uttered the word: colectomy. They would remove her colon, give her a stoma, and she would have to adapt to living with an appliance that would manage what her body no longer could.
She cried…not because she didn’t want to live, but because she didn’t want to live like this.
Yet, eventually, she accepted it. She learned the rhythm of her pouch and even gave it a name…using humor as a means of survival. She began wearing high-waisted pants and walked into rooms unapologetically. She shared her story, connected with others like her, and learned to eat without hesitation. She loved without fear and spoke without flinching.
Though her body still remembers the years of silence, she no longer resides there.
She measured life in stalls and seconds, but never ceased to show up. And somewhere between flares and fear, she became unstoppable.
Overview:
Ulcerative colitis (UC) is a chronic inflammatory condition affecting the lining of the large intestine and rectum. It develops gradually, with symptoms like bloody diarrhea, urgency, abdominal pain, fatigue, and weight loss. Its impact on daily life can be profound, often accompanied by a deep emotional toll of loss, shame, and resilience.
📘 Diagnosis & Treatment
Diagnosis & Treatment:
Colonoscopy with biopsy** is definitive
– Blood tests, stool studies, imaging (CT, MRI, X-ray)
Medications include:
-Anti-inflammatory: 5-ASA drugs, corticosteroids
– Immunomodulators: Azathioprine, cyclosporine
– Biologics: Infliximab, adalimumab, vedolizumab, ustekinumab, risankizumab, mirikizumab
– Small molecules:JAK inhibitors, ozanimod
**Surgical options:**
– Proctocolectomy (curative but life-altering)
– J-pouch, ileostomy, or Kock pouch options
Lifestyle & Emotional Journey:
**Living with UC involves grief and resilience.**
– The loss of spontaneity—no more unplanned nights out or meals without planning.
– Shame and embarrassment—fear of accidents, public outings, intimacy.
– Grief for routines, physical comfort, and the simple joy of eating freely.
– Yet, amidst the losses, there is hope—through management, community, and acceptance.
In essence:
Ulcerative colitis is a relentless returner—returning with flare-ups, uncertainties, and silent struggles. But it also offers an opportunity for fierce resilience—learning to listen, forgive, adapt, and find joy again. The grief is real, but so is the strength of those who refuse to let the disease define their entire story.
I know this is heavy, and I understand that the road ahead may feel like a tangle of loss and unanswered questions. But please hear this: you are not broken because you are hurting; you are not weak because you are afraid. You are living through something real, and survival itself is a kind of grace. You are allowed to struggle, you are allowed to hope, and you are allowed to not have all the answers today. Whatever comes next, you do not face it empty-handed; you carry every moment of love that shaped you, and that will always be enough to keep going.
🎀 Gifts to help With Ulcerative Colitis
🏥 Everyday Comforts for Everyday Battles
Managing Ulcerative Colitis often means needing a little extra help.
Sometimes it’s about restoring dignity, ease, or simply getting through the day with less pain.
These carefully chosen tools aren’t just items; they’re small bridges back to living.
This section is about finding practical support, never shame.
Emergency Bathroom Kit – Because When You Gotta Go, It’s Not Negotiable
Ulcerative colitis doesn’t wait. This portable kit includes disposable underwear, flushable wipes, deodorizing spray, and a leakproof pouch for quick bathroom emergencies outside the house. Small enough to fit in a backpack or glovebox. Because when your colon gives no warning, you deserve peace of mind—not panic.
🌿 Paths to Healing Beyond the Map
Sometimes traditional medicine isn’t enough.
If you’re exploring gentle, alternative options to help with Ulcerative Colitis,
you might find comfort in plant-based compounds like **CBD or CBG**.
*This section is not medical advice, just a door left open.*
Gut Relief Pack – For a Gut That’s Always Fighting
Ulcerative colitis attacks from within, inflaming the gut and exhausting the nerves. This Pack blends CBD, gut-soothing herbs, and nervous system support to help calm flare intensity and improve daily function. It won’t stop the autoimmune fire. But it might help contain the spread.
Need a Different Path Forward?
Every journey through grief looks different. Choose the next step that speaks to where you are now:
When You're Ready to Start Healing
Healing doesn’t mean forgetting.
It means finding small ways to carry your grief with strength and grace.
These are the stories, tools, and gentle steps to begin walking forward…at your own pace.
When You're Still in the Thick of It
Sometimes healing feels like a lie.
If you’re not ready to move on…if the pain still roars louder than the world wants to hear…this is the place where you’re allowed to feel it.
No sugarcoating. No pretending. Just truth.
When You're Holding on to Who’s Still Here
Grief reminds us to love louder.
If someone you love is still with you, this is your place to celebrate them, honor them, and create new memories while there’s still time.
Joy and sorrow can live side by side.
