Ellen’s Story: Living with Crohn’s Disease

Part 1: Something’s Not Right (Month 1)

Ellen Martinez sat in her college dorm room, doubled over with another wave of cramping pain. The 19-year-old nursing student had been dealing with these stomach issues for about three weeks now, and they were getting worse. At first, she thought it was just stress from midterms or maybe that sketchy cafeteria food. But this felt different.

“Mom, I don’t know what’s wrong,” Ellen said during their nightly phone call, her voice tight with discomfort. “I’m going to the bathroom like eight times a day, and it’s always… well, you know. Watery. And I’m so tired all the time.”

Betty Martinez felt that familiar mother’s intuition kick in—the one that knows when something is seriously wrong. “Have you lost any weight, mija?”

Ellen glanced down at her jeans, which were definitely looser than a month ago. “Maybe five or six pounds? But I haven’t been trying to.”

“That’s it,” Betty said firmly. “You’re coming home this weekend, and we’re getting you to a doctor.”

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Part 2: The Medical Runaround (Months 2-3)

Dr. Chen, Ellen’s primary care physician, took her symptomsSubjective experiences reported by the patient (e.g., nausea, fatigue). seriously. After ruling out food poisoning and stomach flu, she ordered blood work. When the results came back, several red flags appeared:

Initial Blood Test Results:

• Hemoglobin: 10.2 g/dL (normal: 12-16 g/dL for women) – indicating anemiaA condition characterized by a deficiency of red blood cells or hemoglobin, leading to reduced oxyge
• C-reactive protein (CRP): 15 mg/L (normal: <3 mg/L) – showing inflammation
• Albumin: 3.2 g/dL (normal: 3.5-5.5 g/dL) – suggesting malnutrition
• White blood cell count: 12,000/µL (normal: 4,000-11,000/µL) – elevated

“Ellen, your body is inflamed and you’re not absorbing nutrients properly,” Dr. Chen explained. “I’m referring you to a gastroenterologist. This could be inflammatory bowel disease.” Betty squeezed her daughter’s hand. “What does that mean?” “It means we need a specialist to figure out exactly what’s going on in her digestive system,” Dr. Chen said gently.

The wait for the gastroenterology appointment felt endless. Ellen tried to keep up with classes, but the constant diarrhea—now mixed with blood—made it nearly impossible. She lost another four pounds. Her friends stopped inviting her out because she always had to cancel. The bathroom became her second home.

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Part 3: The First Look Inside (Month 4)

Dr. Patel, the gastroenterologist, was kind but thorough. After hearing Ellen’s symptoms and reviewing her blood work, she scheduled an upper endoscopy and colonoscopy for the following week.

“We’re going to look at both ends of your digestive tract,” Dr. Patel explained. “The endoscopy will examine your esophagusThe muscular tube that transports food from the pharynx to the stomach via peristalsis., stomach, and the beginning of your small intestine. The colonoscopy will check your large intestine and the very end of your small intestine.”

The day before the procedures, Ellen had to follow a clear liquid diet and drink what felt like gallons of terrible-tasting bowel prep. “This is the worst part,” the nurse had promised. Ellen wished that were true.

Betty sat in the waiting room while Ellen was sedated for the procedures. An hour later, Dr. Patel came out, her expression serious.

“We found inflammation,” she said. “Significant inflammation in the terminal ileum—that’s where the small intestine meets the large intestine—and some in the colon. I took biopsies, which we’ll send to pathology.”

Endoscopy Findings:

• Esophagus: Normal
• Stomach: Normal
• Duodenum (first part of small intestine): Mild inflammation

Colonoscopy Findings:

• Rectum and sigmoid colon: Normal
• Descending and transverse colon: Mild inflammation
• Ascending colon: Moderate inflammation
• Terminal ileumThe last section of the small intestine, responsible for absorbing vitamin B12 and bile salts.: Severe inflammation with ulcerations
• Appearance: “Cobblestone” pattern on the intestinal lining

“What does ‘cobblestone’ mean?” Betty asked.

“The lining of the intestine looks bumpy and cracked, like a cobblestone street,” Dr. Patel explained. “It’s a classic sign of Crohn’s disease, but we’ll wait for the biopsy results to confirm.”

[Suggestion for image: Diagram showing colonoscopy path through large intestine, with terminal ileum highlighted]

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Part 4: The Microscopic Truth (Month 5)

A week later, Ellen and Betty sat in Dr. Patel’s office again, this time waiting for the pathology results.

Dr. Patel pulled up images on her computer screen. “These are microscopic pictures of the tissue samples we took from your intestine,” she said, turning the monitor toward them.

Histology (Biopsy) Results:

The pathologist had examined thin slices of Ellen’s intestinal tissue under a microscope. What they saw told the story:

Normal Intestinal Tissue (for comparison):

• The mucosaThe innermost lining of the digestive tract that contains mucus-secreting cells for protection and a (innermost layer) has healthy, finger-like projections called villiFinger-like projections in the small intestine that increase surface area for absorption.
• The epithelial cellsThe basic structural and functional units of life. lining the villi are neatly arranged in a single layer
• The lamina propria (connective tissue under the epithelium) has a few scattered immune cells—that’s normal
• The submucosa (next layer out) looks smooth and healthy
• The muscularis (muscle layers) shows organized smooth muscle

Ellen’s Jejunum Tissue (what they found):

• Transmural inflammation: Inflammation going through ALL layers of the intestinal wall (mucosa, submucosa, muscularis, and even the serosa)
• Granulomas present: Collections of immune cells forming little nodules—like tiny balls of angry white blood cells trying to fight something off
• Crypt abscesses: Pockets of pus in the intestinal glands
• Villous atrophy: The villi are shortened and damaged, reducing surface area for absorption
• Goblet cell depletion: Fewer mucus-producing cells, leaving the intestine vulnerable
• Lymphocyte infiltration: Massive numbers of white blood cells flooding the tissue
• Ulceration: Deep breaks in the mucosal surface, creating those “cobblestones”

“This confirms Crohn’s disease,” Dr. Patel said. “The granulomas are particularly telling—we see those in Crohn’s but not in ulcerative colitis, the other type of inflammatory bowel disease.”

Ellen stared at the images. Under the microscope, her intestine looked like a war zone.

[Suggestion for image: Side-by-side comparison diagrams of healthy intestinal wall layers vs. Crohn’s-affected intestinal wall showing transmural inflammation]

[Suggestion for image: Microscopic view showing granulomas (can be illustrated as clusters of cells)]

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Part 5: But Wait, There’s More (Months 6-7)

Ellen started treatment with medications to reduce inflammation, but her symptoms didn’t improve much. In factA statement based on direct observation that is repeatedly confirmed., she developed new pain higher up in her abdomen, near her stomach.

“The terminal ileum inflammation is typical for Crohn’s,” Dr. Patel said during a follow-up visit, “but your new symptoms concern me. Crohn’s can affect anywhere from mouthThe opening of the digestive tract where food enters and mastication begins. to anusThe terminal opening of the digestive tract through which feces are expelled., and we need to check if it’s spread to other parts of your small intestine.”

She ordered a small bowel series—a special type of X-ray test.

Small Bowel Series Procedure:

Ellen had to fast overnight, then drink a thick, chalky liquid called barium at the radiology clinic. Barium shows up bright white on X-rays, coating the inside of the digestive tract so doctors can see its shape and any abnormalities.

“We’ll take X-rays every 15-30 minutes as the barium moves through your small intestine,” the radiology tech explained. “The whole thing takes about 2-4 hours.”

Ellen spent the morning in the waiting room, drinking more barium between X-ray sessions and trying not to think about how she’d be glued to the toilet later (barium causes constipation for some, diarrhea for others).

Small Bowel Series Results:

The radiologist noted several concerning findings:

• “String sign” in the jejunumThe middle section of the small intestine, primarily responsible for nutrient absorption.: Parts of the small intestine appeared narrowed and stringy on X-rays because of inflammation and swelling
• Separation of bowel loops: Instead of being close together, the loops of intestine were spread apart—a sign of thickening from inflammation
• Cobblestoning visible: Even on X-ray, the bumpy, irregular surface showed up
• Fistula formation: A small abnormal connection between two loops of intestine—like a tunnel that shouldn’t be there

“This is more extensive than we initially thought,” Dr. Patel told Ellen and Betty. “The inflammation has definitely moved into your jejunum—that’s the middle section A cut or slice of the body or an organ for study. of your small intestine, where most nutrient absorption happens.”

Ellen felt tears welling up. “So it’s getting worse?”

“We’re catching it, and we’re going to treat it more aggressively,” Dr. Patel assured her. “But yes, we need to take this seriously.”

[Suggestion for image: Diagram of small intestine showing duodenumThe first section of the small intestine where most digestion occurs; it receives chyme, bile, and p, jejunum, and ileum, with affected areas highlighted]

[Suggestion for image: Simplified illustration showing what “string sign” looks like on an X-ray]

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Part 6: Checking the Pancreas (Month 8)

Ellen’s blood work continued to show problems. Her lipase and amylase levels—enzymes made by the pancreas—were slightly elevated. Dr. Patel wanted to make sure the inflammation hadn’t affected the pancreasA gland that produces digestive enzymes and hormones like insulin and glucagon., which sits right next to the duodenum and jejunum.

She ordered an endoscopic ultrasound (EUS) with secretin stimulation test.

The Procedure:

This test combined an endoscopy with ultrasound imaging. Ellen was sedated while a special endoscope with an ultrasound probe was passed through her mouth into her duodenum. The ultrasound could create detailed images of the pancreas from inside the digestive tract.

During the procedure, the doctor also injected secretin—a hormone that makes the pancreas produce digestive juices. They collected samples of pancreatic fluid through a small tube and sent them for analysis.

Pancreatic Function Test Results:

The good news: Ellen’s pancreas structure looked normal on ultrasound, with no signsObjective clinical findings observable by a provider (e.g., edema, fever). of pancreatitis (pancreas inflammation).

The concerning news: The secretin test showed decreased pancreatic enzyme output. Her pancreas wasn’t producing enough digestive enzymesProteins that speed up chemical reactions in the body..

“Why would my pancreas not be working right?” Ellen asked.

“It’s not that the pancreas itself is diseased,” Dr. Patel explained. “But chronic inflammation in the nearby jejunum can affect how well the pancreas functions. Also, some Crohn’s medications can impact it. We’ll need to add pancreatic enzyme supplements to help you digest food better.”

[Suggestion for image: Anatomical diagram showing relationship between duodenum, jejunum, and pancreas]

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Part 7: The Emotional Toll (Months 9-12)

The physical symptoms were horrible, but the emotional impact nearly broke Ellen.

She had to take a medical leave from nursing school during her sophomore year. Watching her classmates continue without her felt like failure, even though she knew it wasn’t her fault.

The medications made her face puffy and caused mood swings. She gained weight from the steroids, then lost it again during flare-ups. Her body felt like a stranger.

“I don’t recognize myself anymore,” Ellen sobbed to her mother one night. “I can’t make plans because I don’t know if I’ll be able to leave the house. My friends are all moving on with their lives, and I’m stuck here.”

Betty held her daughter while she cried. She’d done research—reading about Crohn’s disease late into the night, joining online support groups for parents of kids with IBD, learning medical terms she never wanted to know. She understood that Crohn’s was unpredictable. Good days could turn into bad days without warning. There was no cure, only management.

“You’re not stuck, mija,” Betty said softly. “You’re fighting. Every single day, you’re fighting.”

Ellen also struggled with the invisible nature of her disease. She looked fine on good days, so people didn’t understand why she couldn’t do things.

“But you don’t look sick,” classmates would say.

“Just try eating healthier,” well-meaning relatives suggested, not understanding that diet didn’t cause Crohn’s and couldn’t cure it.

“Have you tried yoga?” strangers on the internet asked, as if deepAway from the surface of the body. breathing could fix an autoimmune disease.

The bathroom accidents were the worst. Twice, Ellen didn’t make it in time. The humiliation was crushing. She started carrying extra clothes everywhere and mapping out bathroom locations wherever she went.

[Suggestion for image: Young woman looking tired, sitting alone, perhaps journaling or looking at medication bottles]

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Part 8: Fine-Tuning the Diagnosis (Months 13-15)

As Ellen’s treatment plan evolved, Dr. Patel ordered more tests to understand exactly which parts of her small intestine were most affected. This would help target therapy more effectively.

CT Enterography (a special CT scan of the small bowel):

Ellen drank another contrast solution—this time less chalky than barium—then lay in the CT scanner while it took detailed cross-sectional images of her abdomen.

CT Enterography Results:

• Jejunum: Severe wall thickening (6-8mm, when normal is 2-3mm)
• “Target sign”: The jejunum wall showed a characteristic bulls-eye pattern on cross-section—inflamed layers creating rings
• Mesenteric fat stranding: The fat around the intestines looked streaky and inflamed
• Enlarged mesenteric lymph nodes: Lymph nodes near the jejunum were swollen, fighting the inflammation
• No strictures yet: Thankfully, no dangerous narrowing of the intestine that would block food passage
• The fistula identified earlier had enlarged slightly

Capsule Endoscopy:

To see parts of the small intestine that regular endoscopy and colonoscopy couldn’t reach, Ellen swallowed a pill-sized camera. The capsule traveled through her entire digestive tract, taking thousands of pictures that were transmitted to a recorder she wore on a belt.

Capsule Endoscopy Findings:

• Duodenum: Mild inflammation
• Proximal jejunum (first part): Moderate to severe inflammation with visible ulcers
• Mid-jejunum: Severe inflammation, extensive ulceration, bleeding sites
• Distal jejunum (end part): Moderate inflammation
• Ileum: Previously documented severe inflammation still present
• Capsule passed normally (sometimes the capsule gets stuck in narrowed areas)

“Your jejunum is definitely the primary site of disease activity right now,” Dr. Patel said, pointing to the images. “This is somewhat less common than disease focused on the terminal ileum, but it happens in about 20-30% of Crohn’s patients.”

[Suggestion for image: Diagram showing the “target sign” on CT scan cross-section]

[Suggestion for image: Illustration of capsule endoscopy pill next to a penny for size comparison]

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Part 9: Understanding the Damage (Month 16)

Dr. Patel sat down with Ellen and Betty to explain exactly what was happening in Ellen’s jejunum at a cellular level.

“I want you to understand what we’re treating,” she said, pulling up diagrams on her tablet.

The Normal Jejunum:

“The jejunum is about 8 feet long and does most of the heavy lifting for nutrient absorption,” Dr. Patel explained. “It has these special features:

• Plicae circulares: Circular folds that increase surface area (imagine a paper fan)
• Villi: Tiny finger-like projections covering the folds—millions of them
• Microvilli: Even tinier projections on each villus (called the “brush border”)
• All together, these folds and projections create a surface area of about 250 square meters—roughly the size of a tennis court—for absorbing nutrients

The jejunum wall has four layers:

1. Mucosa (innermost): Has the villi, produces enzymes, absorbs nutrients
2. Submucosa: Contains blood vessels and nerves
3. Muscularis: Two layers of muscle that create peristalsis Rhythmic contractions of smooth muscle that move food through the digestive tract. (the wave-like contractions moving food through)
4. Serosa (outermost): Protective covering”

What’s Happening in Ellen’s Jejunum:

“In Crohn’s disease, your immune system mistakenly attacks your own intestinal tissue,” Dr. Patel continued. “Here’s what that looks like:

Immune System Gone Rogue:

• T-cells (a type of white blood cell) are flooding into the intestinal wall
• They’re releasing inflammatory chemicals called cytokines (especially TNF-alpha and interleukins)
• These chemicals signal more immune cells to join the attack
• It’s like a false alarm that keeps getting louder, bringing more and more firefighters to a fire that doesn’t exist

Structural Damage:

• The villi are shortened and damaged (villous atrophy), reducing absorption surface area by 50-70%
• The epithelial cells—your absorption specialists—are dying faster than they can be replaced
• Goblet cells that produce protective mucus are depleted
• Deep ulcers have formed, some penetrating through multiple layers of the intestinal wall

The Granulomas:

• These are collections of immune cells called macrophages that have fused together
• They look like tiny, organized balls of cells under the microscope
• Think of them as immune cells trying to wall off what they perceive as threats
• They’re a hallmark of Crohn’s disease

Transmural Inflammation:

• Unlike ulcerative colitis, which only affects the mucosa, Crohn’s goes through ALL the layers
• The inflammation through the muscularis layer disrupts normal peristalsis
• When inflammation reaches the serosa, it can cause the intestine to stick to nearby structures (adhesions) or form those tunnels called fistulas

Why Ellen Feels So Terrible:

“All of this damage explains your symptoms,” Dr. Patel said:

• Diarrhea: Damaged villi can’t absorb waterThe universal solvent essential for life. properly; inflammation also causes the intestine to secrete more fluid
• Abdominal pain: Inflammation activates pain nerves; ulcers hurt; abnormal muscle contractions (spasms) hurt
• Weight loss: You’re not absorbing nutrients—especially fats, vitamins, and proteinsLarge molecules made of amino acids with various functions in the body.
• Fatigue: Anemia from bleeding ulcers; malnutrition; chronic inflammation exhausts the body
• Blood in stool: The ulcers bleed, especially when food passes over them

The Lab Values Make Sense Now:

• Low hemoglobinThe oxygen-carrying protein in red blood cells that gives blood its red color.: Bleeding ulcers cause iron-deficiency anemiaAnemia caused by inadequate iron intake or absorption, leading to reduced hemoglobin synthesis.
• High CRP: Measures inflammation throughout the body
• Low albuminA plasma protein that helps maintain osmotic pressure and transport substances.: Not absorbing enough protein; also, inflammation causes albumin to leak from blood vessels into the intestinal wall
• Vitamin deficiencies: Especially B12 (absorbed in terminal ileum), vitamin D, iron, and fat-soluble vitamins (A, D, E, K)

Ellen listened, trying to absorb (ironically) all this information. “So my immune system is destroying my intestine for no reason?”

“Essentially, yes,” Dr. Patel said. “We don’t know exactly why Crohn’s starts. It’s probably a combination of genetics, environmental triggers, and maybe an abnormal response to intestinal bacteria. But we do know how to treat it.”

[Suggestion for image: Detailed cross-section diagram of normal jejunum wall showing all four layers with villi]

[Suggestion for image: Comparison diagram showing damaged Crohn’s jejunum with shortened villi, ulcers, and transmural inflammation]

[Suggestion for image: Illustration of a granuloma – clustered immune cells]

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Part 10: Moving Forward (Month 18)

Ellen started a new treatment plan with biologic medications that specifically targeted the inflammatory chemicals causing her problems. It wasn’t a cure, but within two months, she felt better than she had in over a year.

Her most recent blood work showed improvement:

• Hemoglobin: 12.1 g/dL (almost normal!)
• CRP: 6 mg/L (much better, though still slightly elevated)
• Albumin: 3.6 g/dL (back in normal range)

A follow-up capsule endoscopy showed:

• Reduced inflammation throughout the jejunum
• Some ulcers were healing
• Less bleeding

Ellen wasn’t in remission yet, but she was headed in the right direction.

She met with a nutritionist who specialized in IBD to develop an eating plan that wouldn’t trigger flare-ups. She joined a young adult Crohn’s support group and finally felt less alone. She even started taking online classes, planning to return to nursing school in the fall.

“I have Crohn’s disease,” Ellen told her support group at her first meeting. “It doesn’t have me.”

Betty smiled from the back of the room. Her daughter was learning to fight.

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Part 11: Living with Crohn’s – Ellen’s New Normal (Month 18 and Beyond)

Ellen learned that Crohn’s disease is unpredictable. She has good days and bad days. Flare-ups still happen—stress, certain foods, or sometimes nothing at all triggers them.

Ellen’s Current Management Plan:

Medications:

• Biologic therapy (infusion every 8 weeks)
• Pancreatic enzyme supplements with meals
• Iron supplements for anemia
• Vitamin B12 injections monthly
• Vitamin D supplements
• Anti-diarrheal medication as needed

Monitoring:

• Blood work every 3 months
• Colonoscopy yearly
• CT or MRI enterography as needed to check for complications

Lifestyle Modifications:

• Stress management (therapy, meditation)
• Regular exercise when feeling well
• Meal planning around trigger foods
• Always knowing where bathrooms are located
• Carrying an emergency kit (extra clothes, medications, wipes)

Potential Future Concerns:

Dr. Patel was honest with Ellen about possible complications:

• Strictures: Scar tissue could narrow the intestine, potentially requiring surgery
• Fistulas: The one small fistula needed monitoring
• Abscesses: Collections of pus if infection develops
• Malabsorption: Ongoing nutrient absorption problems despite treatment
• Increased cancer risk: Chronic inflammation slightly increases colon cancer risk (need regular monitoring)

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The Science Behind Ellen’s Journey: Key Histological Features

For those interested in the microscopic details:

Granulomas (the Crohn’s “signature”):

• Composed of epithelioid histiocytes (specialized macrophages)
• Non-caseating (no dead tissue in the center, unlike tuberculosis granulomas)
• Found in about 30-50% of Crohn’s biopsies
• Can appear anywhere in the intestinal wall, even areas without active inflammation
• Help distinguish Crohn’s from ulcerative colitis

Transmural Inflammation Pattern:

• Lymphocytes (especially T-cells) throughout all wall layers
• Plasma cells producing antibodies
• Neutrophils forming crypt abscesses
• Macrophages attempting to clear damaged tissue
• Fibroblasts producing scar tissue (collagenA structural protein in the dermis that provides strength and elasticity.) in response to chronic inflammation

Architectural Distortion:

• Crypt branching and distortion (crypts are the glands between villi)
• Villous blunting and fusion
• Pyloric gland metaplasia (stomach-type cells appearing where they shouldn’t be)
• Paneth cell metaplasia (specialized small intestine cells in abnormal locations)

Why the Jejunum?

While Crohn’s most commonly affects the terminal ileum (60-70% of cases), jejunal involvement occurs in 20-30% of patients. When the jejunum is primarily affected:

• Malabsorption is often more severe (this is where most nutrient absorption happens)
• Weight loss and nutritional deficiencies are more pronounced
• Iron, folate, and fat-soluble vitamin absorption are particularly impaired
• Treatment response may differ from terminal ileal disease

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Conclusion: Ellen’s Message

Ellen eventually did return to nursing school. Her experience with Crohn’s disease made her a more empathetic nurse. She understood what it felt like to be scared, to hurt, to feel like your body had betrayed you.

“Having Crohn’s taught me that you can’t judge someone’s health by looking at them,” Ellen says. “Invisible illnesses are real. Chronic pain is real. And compassion in healthcare isn’t optional—it’s essential.”

Betty keeps all of Ellen’s medical reports in a binder. They represent a year and a half of struggle, but also resilience.

Crohn’s disease is a chronic condition with no cure yet. But with proper treatment, monitoring, and support, many patients like Ellen can achieve remission and live full, active lives.

The battle continues, but Ellen is winning.