Surviving Too Much: My Life with Crohn’s, Kidney Stones, and 37 Surgeries

I’m 54 now. I was diagnosed with Crohn’s at 20. Since then, I’ve had 37 gastrointestinal surgeries, faced stage-four intestinal cancer, and—because so many treatments robbed my body of balance—I’ve become a person who passes kidney stones the way some people catch colds. This is my story: the physical pain, the small mercies, and the faith (and marriage) that keep me moving forward.

The physical story — not a short one

My intestine has slowly disappeared. Each surgery took a little more away until less than 5% of my GI tract remained. My rectum was removed and stitched shut. Decades of prednisone left me with osteoporosis, so I needed calcium to save my bones—and that, in turn, made kidney stones almost inevitable.

Over the last decade I’ve passed more than 120 stones; the biggest was 10 mm. I’ve had stents, surgeries, PICC lines, saline infusions, and far too many nights on the floor screaming in agony as a stone moved down a ureter.

Because of my altered anatomy, standard procedures like lithotripsy or cystoscopy often aren’t options for me. That means my care plan is grim: either surgery to remove stones, or aggressive hydration and medications like tamsulosin (Flomax) to try to coax them out. When an 8–10 mm stone moves, words fail—“boulder” is the only metaphor I can find that comes close to the pain.

But the kidney stones are only a chapter. Crohn’s and cancer opened an ongoing series of complications: chronic kidney disease creeping in, short bowel syndrome, malnutrition, degenerative spine disease, multiple sleep disorders, chronic fatigue and pain, and a pile of other diagnoses that sound worse on paper than I can say aloud.

The mental story — loneliness, grief, and daily courage

What I miss most isn’t the ability to do manual labor or to take a long hike. It’s the straightforward life I had before illness took command. I was voted athlete of the year in high school four years running, I cycled 25–50 km a day. I once felt invincible.

Then everything changed. I was forced to take long-term disability at 46. The loss of purpose and routine is quieter than an operation but far more corrosive. You can manage pain with drugs and surgery; you can’t always fix loneliness or the slow, sharp sting of watching friends work while you navigate a world of appointments and scans.

There were dark places. I’ve sat exactly where suicidal thoughts feel plausible—when you are alone, exhausted, and the simplest tasks become mountains. What saved me wasn’t one miracle: it was my husband. We’ve been married 34 years. He is the steady hand that steadies me. If you have someone who will sit in the quiet with you, keep them close.

Practical strategies that have helped me

I write this not as medical advice but as the things that have helped me survive daily life:

• Hydration and IV support. Because my bowel doesn’t absorb fluid well, I’m on a PICC line for regular saline infusions. That keeps my kidneys working and reduces the frequency of emergencies.
• Know when to ask for help. Emergency rooms can miss the reality of complex cases. Bring records, be persistent, and insist on the diagnostics you need.
• Medication planning. Meds like colchicine, prednisone, or short steroid courses have roles—and tradeoffs. Speak honestly with specialists about risks and benefits.
• Build a care team. I have gastroenterologists, nephrologists, surgeons, pain specialists, and a primary doctor who communicates with everyone. Coordinated care matters.
• Pace and prioritize. When your energy is limited, learning to say “no” is a skill that keeps you alive—emotionally and physically.
• Mental health matters. Seek therapy, peer support, or groups. Chronic illness is a mental marathon; treatment for your brain is as important as treatment for your body.

On being seen — and the scars you can’t see

One of the worst things about invisible disability is the constant skepticism. I weigh 130 lb at 5'11"—I look fit, but the surgeries left scars that tell the real story. People ask, “Why don’t you go back to work?” or “Aren’t you lazy?” It’s crushing.

If you’re someone reading this who’s healthy right now: never take it for granted. A life can change in a heartbeat.

Gratitude and the stubborn will to keep going

For all this, I’m grateful. I’m alive when odds said I wouldn’t be. I’m married to a man who stayed for the hard parts. I have doctors who keep trying. I have small daily victories: a pain-free hour, a good meal, a laugh with my spouse. Those moments are everything.

I don’t claim to have answers. I don’t know why I survived what I was supposed to die from. But I do know this: if one person reads this and feels less alone, or learns to push harder for proper care, then my telling was worth it.

If I ever write a book, maybe someone will buy it. For now I’ll keep writing and sharing. If you’re in pain today—hold on. Advocate for yourself. Ask for help. And if you’re able, sit quietly with someone who needs you. Sometimes that’s the most powerful medicine of all.