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

I am 54 now. I was diagnosed with Crohn's disease at 20. Since then, I have had 37 gastrointestinal surgeries, survived stage-four intestinal cancer, lived with short bowel complications, and passed more kidney stones than I can count without feeling tired. This is not a clean recovery story. It is a story about surviving a body that keeps asking for more.

The Body Story Is Not Short

The physical version of my story is hard to summarize because one diagnosis kept opening the door to another.

Crohn's disease came first. Surgery followed. Then more surgery. Each operation took a little more of my intestine. Eventually, less than 5% of my GI tract remained. My rectum was removed and stitched shut. Cancer entered the story. Prednisone helped me survive flares, but long-term steroid exposure also contributed to osteoporosis risk, which meant calcium became part of protecting my bones.

Then the kidney stones started becoming a pattern of their own.

Over the last decade, I have passed more than 120 stones. The largest was 10 mm. I have had stents, procedures, PICC lines, saline infusions, scans, emergency visits, and nights where pain made the floor feel like the only place my body could exist.

That is the thing about complex illness: one system rarely suffers alone.

The gut affects hydration.

Hydration affects the kidneys.

Steroids affect bones.

Surgeries affect absorption.

Pain affects sleep.

Sleep affects mental health.

By the time people see the outside of the story, they often miss the chain reaction happening inside it.

Crohn's Was Never Just Stomach Pain

Crohn's disease is often described as an inflammatory bowel disease, and that is accurate, but it can sound too small from the outside.

NIDDK explains that Crohn's is a chronic disease that causes inflammation in the digestive tract and can involve symptoms such as diarrhea, abdominal cramping, pain, weight loss, fatigue, fever, joint pain, nausea, vomiting, appetite loss, anemia, and complications outside the gut.

That sounds clinical.

Living it is messier.

Crohn's can decide when you eat, where you go, how far you drive, whether you sleep, whether you can work, whether you trust a bathroom situation, and whether your body absorbs enough of what you put into it.

For me, the surgeries changed everything. Surgery can treat Crohn's complications, but it does not cure Crohn's. That distinction matters. A surgery may remove damaged bowel, treat obstruction, deal with fistulas, or address cancer risk, but the disease and its consequences can continue shaping the body afterward.

That is the part people do not always understand. Surviving the operation does not mean the chapter closes.

When So Much Intestine Is Gone

Short bowel complications changed the rules of daily life.

NIDDK describes short bowel syndrome as a condition where the small intestine is shortened or damaged and cannot absorb enough nutrients from food to maintain health. Symptoms can include diarrhea, fatigue, greasy or bad-smelling stools, weight loss, abdominal pain, bloating, gas, and dehydration.

That last word is not minor.

Dehydration is not just thirst. It can mean dizziness, weakness, dark urine, low urine output, dry mouth, faintness, and in severe cases organ damage or shock. For someone with altered bowel anatomy, hydration is not a wellness habit. It can be a medical necessity.

That is why IV saline became part of my life. It was not dramatic. It was practical. My bowel does not absorb fluid normally, so my care plan had to account for that reality.

People sometimes ask why I cannot just "drink more water."

I wish it were that simple.

With short bowel issues, fluids, electrolytes, diet, medications, and sometimes IV support have to be managed carefully. Too little fluid can be dangerous. The wrong fluid balance can also be a problem. The plan has to be individual.

That is where a care team matters.

Kidney Stones Became Their Own Illness

Kidney stones are often discussed like a one-time event.

For me, they became a recurring threat.

NIDDK says kidney stones can cause sharp pain in the back, side, lower abdomen, or groin, and may cause blood in the urine. Treatment depends on size, location, stone type, symptoms, and whether the stone is blocking the urinary tract or causing infection.

I learned that size matters, but anatomy matters too.

Because of my altered anatomy and medical history, some standard procedures were not always simple options. That meant my care plan often came down to a narrow set of choices: procedures when needed, aggressive hydration support, careful medication planning, and waiting through pain that would make language feel useless.

When an 8 to 10 mm stone moves, people can tell you to breathe, but breathing does not feel like enough.

The pain can become total.

Not because you are weak.

Because a stone moving through the urinary tract can be brutally painful.

What Helped Me Survive the Practical Side

I do not offer this as a treatment plan. My body is too medically complicated for a simple list to be safe for someone else.

But these are the practical patterns that kept me alive and more stable.

Hydration planning, not hydration guessing.

Because my bowel does not absorb normally, fluid support had to become part of care instead of an afterthought. For some people that might mean oral rehydration strategies. For me, it included IV support through a PICC line.

Records that travel with me.

Complex patients cannot assume every emergency room will understand the full story quickly. I learned to keep key details available: surgeries, anatomy changes, medications, allergies, specialists, recent scans, baseline labs, and what has or has not worked before.

Specialists who communicate.

Gastroenterology, urology, nephrology, surgery, pain management, primary care, nutrition, and mental health are not separate lives. They are one body seen from different angles. Coordination matters.

Clear thresholds for escalation.

When you live with constant symptoms, danger can start to feel normal. I had to learn which symptoms were "watch and call" versus "go now."

Pacing without apology.

Energy is not laziness. It is a medical resource. When the body is limited, saying no can be part of staying alive.

The Mental Story Is Also Medical

The mental story is not separate from the physical one.

It is part of it.

What I miss most is not only physical ability. I miss the straightforward life I had before illness became the organizing force. I was voted athlete of the year in high school four years in a row. I cycled 25 to 50 km a day. I knew my body as something powerful.

Then everything changed.

I was forced onto long-term disability at 46. Losing work was not just losing income. It was losing structure, identity, purpose, and the ordinary rhythm of being expected somewhere.

Pain can be treated. Procedures can be scheduled. Labs can be tracked.

But loneliness is harder to chart.

There were dark places. I have been close enough to suicidal thoughts to know how believable they can feel when the body is exhausted, the future is narrow, and every simple task feels like a mountain.

What helped was not one miracle.

It was my husband.

We have been married 34 years. He is the steady hand that steadies me. He does not fix everything, but he stays. That matters more than people realize.

If you are in that dark place now, please do not treat it as something you must solve alone. In the U.S. and Canada, call or text 988 for immediate crisis support. If you are outside those countries, contact your local emergency number or crisis line. If you may act on self-harm thoughts, seek emergency help now.

Invisible Disability Changes How People See You

One of the most painful parts of invisible disability is that people make assumptions from the outside.

I weigh 130 pounds at 5'11". I may look thin, maybe even fit from a distance. But scars and internal damage tell a story that clothing hides.

People ask why I do not go back to work.

People ask whether I am lazy.

People see one good hour and assume the whole day is available.

This is why chronic illness becomes socially exhausting. You are not only managing symptoms. You are managing explanations, disbelief, guilt, and the pressure to perform wellness for other people.

That connects with other stories here about pain not being believed and living with repeated surgeries and disability. Being doubted can become its own layer of harm.

When to Seek Urgent Care

Stories like mine can help people feel less alone, but symptoms like these need direct medical guidance.

Seek prompt medical care for Crohn's disease or short bowel concerns if you have:

• severe or worsening abdominal pain
• persistent vomiting
• signs of dehydration such as very dark urine, low urine output, dizziness, fainting, extreme thirst, or dry mouth
• fever, chills, or signs of infection
• blood in stool or black stool
• rapid weight loss or inability to keep nutrition down
• new severe diarrhea or diarrhea that is not your usual pattern
• symptoms of bowel obstruction, such as severe cramping, bloating, vomiting, and inability to pass stool or gas
• problems with a PICC line, such as redness, swelling, fever, drainage, chest pain, or shortness of breath

Seek urgent care for kidney stone symptoms if you have:

• severe flank, back, groin, or lower abdominal pain
• pain with fever or chills
• vomiting with dehydration risk
• inability to urinate
• blood in urine with severe pain
• known kidney disease or one kidney
• symptoms that are escalating despite your usual plan

If you have chest pain, severe weakness, confusion, fainting, signs of sepsis, or any symptom that feels like an emergency, seek emergency care immediately.

What I Know Now

I do not claim to have answers for everyone.

I do not know why I survived what I was supposed to die from.

I do know that complex illness requires more than toughness. It requires records, specialists, hydration plans, pain plans, nutrition support, mental health support, and people who do not leave when the story stops being easy.

For all of this, I am still grateful.

I am grateful for a pain-free hour.

I am grateful for a meal that stays down.

I am grateful for a doctor who listens.

I am grateful for my husband sitting in the quiet with me.

If you are living inside a body that keeps demanding repairs, I will not tell you to be positive. I will tell you that you deserve care, documentation, support, and help before you reach the end of your strength.

Survival is not always graceful.

Sometimes it is a spreadsheet of medications, a bag of saline, a scan report, a hand to hold, and one more morning where you decide to keep going.

References and Trusted Sources

• NIDDK: Crohn's Disease
• NIDDK: Treatment for Crohn's Disease
• NIDDK: Short Bowel Syndrome
• NIDDK: Symptoms and Causes of Short Bowel Syndrome
• NIDDK: Kidney Stones
• NIDDK: Treatment for Kidney Stones
• 988 Suicide & Crisis Lifeline

This article is educational and experience-based, not medical advice. Crohn's disease, short bowel syndrome, kidney stones, PICC-line care, cancer history, chronic kidney disease, pain management, nutrition support, medication decisions, and mental health crises require individualized care from qualified professionals. Seek urgent or emergency care for severe, worsening, or high-risk symptoms.

Disclaimer: This article is for educational purposes only and is not medical advice. Individual symptoms, risks, and treatment decisions vary. Always consult a qualified healthcare professional for diagnosis and personalized care. If you have severe, worsening, or emergency symptoms, seek urgent medical attention immediately.