What Is Crohn's Disease - All About IBD

Before I begin discussing my personal experiences dealing with my Crohn's Disease as a child and adult, I wanted to set up some basic details and facts about the auto-immune condition.

The details below are from medical sources found online and not my opinion, just the facts of what we know for the most part. There may always be changes and new discoveries in the future about the disease, but this is what's recorded for now.

Facts To Know About Crohn's Disease: All About IBD

1. How many people in the USA suffer from Crohn's compared to other countries?

• In the USA: Approximately 1.6 million Americans have Inflammatory Bowel Disease (IBD), which includes both Crohn's and Ulcerative Colitis. It's estimated that about 780,000 Americans have Crohn's Disease specifically. The CDC and CCF note that this number is rising, especially in newly industrialized parts of the world.

• Globally: IBD is most common in North America and Europe. However, its incidence is increasing globally as countries become more industrialized. This suggests environmental factors (like diet, pollution, hygiene) play a significant role.

• Keyword Phrases: "Crohn's disease prevalence," "how common is Crohn's," "IBD statistics," "Crohn's disease USA vs world." are mentioned to help connect a correlation or causation to the onset of IBD.

2. What is Crohn's Disease? (The Core Explanation)

Crohn's Disease is a chronic (lifelong) condition and a form of Inflammatory Bowel Disease (IBD). It is an autoimmune condition, which means the body's immune system mistakenly attacks its own healthy tissues.

• What Happens: This attack causes inflammation anywhere in the gastrointestinal (GI) tract, from the mouth to the anus. Unlike Ulcerative Colitis, which only affects the colon, Crohn's inflammation is often patchy and can penetrate through the entire thickness of the bowel wall.

• Keyword Phrases: "Crohn's disease definition," "what is inflammatory bowel disease," "is Crohn's autoimmune," "chronic digestive disease."

  
  

*As a Crohn's patient, I wonder what the commonalities and differences are between me (along with other Crohnies) and the Ulcerative Colitis patients. Why does their IBD stop in the large colon? What happened in their nature or nurture to not make the disease expand. Are there different levels of these diseases like cancers?

3. Who Normally Gets Crohn's Disease? (Risk Factors)

While anyone can get Crohn's, certain factors increase the risk:

• Age: It's most often diagnosed in adolescents and young adults (ages 15-35), but can occur at any age.

• Family History: Having a close relative (parent, sibling, child) with IBD significantly increases your risk.

• Smoking: This is the most significant controllable risk factor, doubling the risk and leading to more severe disease.

• Ethnicity: More common in Caucasian populations, especially those of Ashkenazi Jewish descent, but rates are rising in all ethnicities.

• Geography: More common in urban areas and industrialized countries.

• Keyword Phrases: "Crohn's disease risk factors," "who gets Crohn's," "causes of Crohn's," "is Crohn's genetic."

  
  

*My grandpa on my father's side died of colon cancer in his old age, but my mother was diagnosed with Multiple Sclerosis in her 30's. M.S. is also an auto-immune disease, except it effects your spinal cord, not G.I. tract.

4. How Bad Is It To Have Crohn's Disease? (Disease Severity & Impact)

Crohn's is a serious, chronic condition with a wide spectrum of severity. It's not just a "bad stomachache."

• It's Unpredictable: People experience periods of active symptoms (flares) and periods of little to no symptoms (remission).

• Impact on Life: It can cause severe pain, debilitating fatigue, and urgent, frequent trips to the bathroom, which can interfere with work, school, and social life.

• Progressive Disease: Over time, severe inflammation can lead to complications like strictures (narrowing of the bowel), fistulas (abnormal tunnels), and abscesses, which may require surgery.

• Keyword Phrases: "life with Crohn's disease," "Crohn's flare symptoms," "is Crohn's disease debilitating," "Crohn's disease prognosis."

*As a child, I faced chronic inflammation - mostly stomach pain, acid reflex, frequent bathroom trips, and canker sores. I had ulcers come and go with every new treatment. As I grew into an adult, the disease shifted mostly into my small and big intestine. Eventually, after having strictures, fistulas, and large ulcers that luckily never turned into abscesses, I had surgeries to remove the diseased parts. Now without my large colon, rectum, or anus, my Crohn's has moved back into my stomach and mouth more.

5. What Are the Treatment Options?

There is no cure yet, but treatments are highly effective at controlling inflammation and achieving remission. The goal is symptom control, healing the gut, and preventing complications.

• Anti-inflammatory Drugs: Aminosalicylates (5-ASAs).

• Corticosteroids: Like prednisone, used for short-term flare control due to significant side effects.

• Immunomodulators: Suppress the overactive immune system (e.g., Azathioprine, Methotrexate).

• Biologics: Advanced drugs that target specific proteins causing inflammation (e.g., Remicade/infliximab, Humira/adalimumab).

• Small Molecule Drugs: Like JAK inhibitors (e.g., Xeljanz/tofacitinib).

• Surgery: Required when medications fail or complications arise (e.g., strictures, fistulas). Surgery involves removing the damaged section of the bowel, but it is not a cure, as inflammation often returns.

• Diet & Nutrition: Nutritional therapy (like exclusive enteral nutrition) can help induce remission. Diet modifications are crucial for managing symptoms.

• Keyword Phrases: "Crohn's disease treatment options," "biologics for Crohn's," "Crohn's surgery," "diet for Crohn's disease."

*I think I've tried all of the Crohn's medications under the sun, except for the most recent biologics because new ones are constantly being released for passing their clinical trials.

6. What Are Symptoms of Crohn's?

Symptoms vary but often include:

• Common GI Symptoms: Persistent diarrhea, abdominal pain and cramping, rectal bleeding, urgency to have a bowel movement, feeling of incomplete emptying.

• Systemic Symptoms: Unintended weight loss, fever, severe fatigue.

• Other Manifestations: Mouth sores, loss of appetite, perianal disease (pain or drainage near the anus).

• Keyword Phrases: "signs of Crohn's disease," "Crohn's symptoms in women/men," "abdominal pain and diarrhea," "blood in stool Crohn's."

  
  

7. Why Is Crohn's So Damaging?

The damage comes from the nature of the inflammation:

• Transmural Inflammation: It affects all layers of the intestinal wall, unlike UC which is mostly superficial. This deep inflammation can lead to:

  • Strictures: Scar tissue builds up, narrowing the intestine and causing blockages.

  • Fistulas: Abnormal tunnels from the intestine to another organ (e.g., the skin, bladder, or vagina) or a different loop of intestine.

  • Abscesses: Pockets of infection.

• Malabsorption: Chronic inflammation damages the lining of the small intestine, which is responsible for absorbing nutrients. This can lead to vitamin deficiencies, malnutrition, and weight loss.

• Keyword Phrases: "complications of Crohn's disease," "Crohn's stricture," "fistulizing Crohn's," "malabsorption Crohn's."

8. Do They Think Prion Diseases Trigger Crohn's or Other Chemical Imbalance?

This is a great question about causes. The short answer is no, prion diseases are not a trigger for Crohn's.

• Prion Diseases (like Mad Cow Disease) are caused by misfolded proteins and are entirely different from autoimmune diseases.

• The Current Scientific Understanding: The exact cause of Crohn's is unknown, but it's believed to be a combination of three factors:

  1. Genetics: A person is born with a genetic predisposition.

  2. Immune System Dysregulation: The immune system malfunctions and doesn't "turn off" properly.

  3. Environmental Triggers: Something in the environment (e.g., a virus, bacteria, diet, antibiotic use) "flips the switch" in a genetically susceptible person, triggering the abnormal immune response.

• Keyword Phrases: "what causes Crohn's disease," "is Crohn's genetic," "Crohn's disease immune system," "triggers for Crohn's flare."

*This is where I think prion disease might cause this disfunction just like other colds may, but I'm just a creative storyteller, not a medical professional. I had Asthma as a child, and I wouldn't be surprised if my diet of processed foods caused a chemical imbalance whenever I'd get extra sick from the flu. I also grew up in an overly anxious home, so I think this trifecta is what triggered my disease at 10.

9. What Is the Difference Between Crohn's and UC?

This is a crucial distinction. Both are IBD, but they are different diseases.

Feature	Crohn's Disease	Ulcerative Colitis (UC)
Location	Can affect any part of the GI tract (mouth to anus). Most common in the end of the small intestine & colon.	Only affects the colon (large intestine) and rectum.
Inflammation	Patchy ("skip lesions"). Can be healthy areas next to inflamed ones.	Continuous, starting from the rectum and extending upward.
Depth	Transmural (affects all layers of the bowel wall).	Superficial (affects only the innermost lining, the mucosa).
Common Symptoms	Abdominal pain (often in right lower quadrant), weight loss, perianal disease. Bloody diarrhea, urgency, tenesmus (constant feeling of needing to go).	Bloody diarrhea, urgency, tenesmus (constant feeling of needing to go).
Keyword Phrases: "Crohn's vs UC," "difference between IBD and IBS," "types of inflammatory bowel disease."

10. What Are the Consequences of Crohn's Disease?

Beyond the daily symptoms, long-term consequences can include:

• Nutritional Deficiencies: Anemia (iron/B12 deficiency), Vitamin D deficiency.

• Bone Loss: Due to chronic inflammation and steroid use.

• Increased Risk of Colon Cancer: With long-standing, extensive colon involvement.

• Mental Health Impact: High rates of anxiety and depression due to the chronic, unpredictable nature of the disease.

• Arthritis, Skin, and Eye Problems: These are common "extra-intestinal manifestations."

• Keyword Phrases: "long-term effects of Crohn's," "Crohn's and cancer risk," "Crohn's and mental health," "extra-intestinal manifestations of IBD."

*I've had all of these symptoms - except for cancer - and more symptoms than just these mentioned.

11. What Do People With Crohn's Disease Have to Do Differently?

Life with Crohn's involves significant adaptation and vigilance:

• Bathroom Mapping: Always knowing where the nearest restroom is in any new location.

• Dietary Vigilance: Carefully watching what they eat, as certain foods (like high-fiber, spicy, or greasy foods) can trigger symptoms. There is no one-size-fits-all diet.

• Medication Adherence: Taking medication even when feeling well to maintain remission.

• Energy Management ("Spoon Theory"): Learning to pace themselves due to profound fatigue.

• Advanced Planning: For trips, social events, and work, always having a "plan B" in case a flare strikes.

• Advocating for Themselves: Communicating their needs to employers, friends, and family, and being a proactive partner in their healthcare.

• Keyword Phrases: "living with Crohn's disease," "Crohn's and work life," "traveling with Crohn's," "spoon theory chronic illness," "Crohn's diet tips."

*These are pretty accurate, and of course this isn't the only items we are managing - it's much harder to function through this when it feels like you are digesting concrete rubble during normal activities.

Medical Sources for this Blog

The information below is synthesized from these highly reputable organizations.

1. Crohn's & Colitis Foundation (CCF): The leading non-profit dedicated to Crohn's and Ulcerative Colitis research and patient support. An excellent source for patient-friendly language.

2. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): A branch of the U.S. National Institutes of Health (NIH). Provides deep, evidence-based medical information.

3. Centers for Disease Control and Prevention (CDC): Provides data on prevalence and public health impact in the USA.

4. World Gastroenterology Organization (WGO): Offers a global perspective on digestive diseases.

What Else Have I Been Through With Crohn's Disease?

Diseases affect everyone differently, because we all have different personalities and preferences.

Feel free to ask me questions or tell me about your experience with you or someone you know with Irritable Bowel Disease.

Check out my other blogs that discuss my Crohn's symptoms during childhood specifically or a more personal blog about experiencing the disease.

Medical Procedures For Crohn's Disease, Colitis, and IBD.

ENDOSCOPIC PROCEDURES

My first endoscopy was at 11 and my first colonoscopy, I was 12 or 13 years old. Now that I am missing my big colon, rectum, and anus, they go through my stoma. They do not go as deep with the ileoscopies, I am not sure if it is due to safety or comfortability level.

When I had my worst inflammation in my sigmoid colon (the lowest section of the colon, right before the rectum) I would luck out with sigmoidoscopies instead. Prepping for those are much less intense than colonoscopies since you don't need to starve yourself for 24 hours before the damn procedure. I've probably had more than twenty colonoscopies out of the 25 years that I had an asshole.

I've never done the pill kind, nor will I because I am a big baby when it comes to swallowing pills.

Core Crohn’s/IBD Diagnostic & Monitoring Procedures

• Colonoscopy

  • Visualizes colon + terminal ileum

  • Allows biopsies

  • Standard test for diagnosis and routine monitoring

• Upper Endoscopy (EGD / Gastroscopy)

  • For Crohn’s affecting stomach or duodenum

  • Biopsies for inflammation, ulcers, infection

• Ileocolonoscopy

  • Same as colonoscopy but specifically includes entering ileum

• Flexible Sigmoidoscopy

  • Partial colon view, used during flares or for quick checks

• Capsule Endoscopy (Pill Cam)

  • Examines small intestine where scopes can’t reach

  • Useful for small-bowel Crohn’s

    
    

Advanced / Special Endoscopic Tests

• Balloon-Assisted Enteroscopy (Double or single balloon)

  • Allows biopsy deeper into the small bowel

• Endoscopic Ultrasound (EUS)

  • For suspected abscesses or fistulas near rectum

• Stricture Dilation / Strictureplasty Endoscopically

  • Opens narrowed areas without full surgery

All upper and lower scopes grab samples with their little tool thingy. I did not need any special biopsies taken to test for inflammation or infection. I received a ballooning scope when we were pushing off the need for surgery. Of course, I am still suffering before and after, but it is easier to manage life with widened intestines when they are so used to being shriveled and scarred. Having strictures is extremely painful and taxing on the body.

Ballooning the intestines are only short-term solutions to try and get medicine to work on taking down the inflammation - but when medicines fail, surgery is considered as the next option.

IMAGING STUDIES

Small Bowel & Fistula-Focused Imaging

• MR Enterography (MRE)

  • Preferred for Crohn’s

  • No radiation

  • Detects inflammation, strictures, fistulas, abscesses

• CT Enterography (CTE)

  • Similar to MRE but uses radiation

  • Often used in ER settings

I've never had the two mentioned above done. I've had MRI's, both contrast dye and non-contrast. Also, X-Rays, and CT-Scans to check for inflammation damage. When I developed my fistula, it was just taken out during the surgery.

I've also had a barium X-Ray, where you drink the gross liquid, and a barium enema, where the liquid is inserted in your...bum.

Other Imaging

• Pelvic MRI

  • For perianal Crohn’s, fistulas, abscesses

• Abdominal Ultrasound

  • Used more in Europe; can detect thickened bowel loops

• Small Bowel Follow-Through (SBFT)

  • Older test but still used

• Barium Enema

  • Rare today except in special cases

• Plain Abdominal X-ray

  • Used for obstruction or perforation evaluation

• CT Abdomen/Pelvis

  • ER test for acute complications

BIOPSIES

Routine Biopsies

• Mucosal biopsies (taken during colonoscopy or EGD)

  • Confirm diagnosis

  • Evaluate inflammation, granulomas

  • Check for dysplasia in long-term IBD

Special Biopsies

• Small intestinal biopsies (via enteroscopy)

• Perianal fistula biopsy

  • Rare, used to rule out malignancy in chronic fistulas

• Skin biopsies

  • For IBD-related conditions (erythema nodosum, pyoderma gangrenosum)

I've only done the normal mucosal biopsies during routine or urgent endoscopies.

BLOOD TESTS

Standard IBD Monitoring Bloodwork

• CBC (Complete Blood Count)

  • Checks anemia, infection, inflammation

• CMP (Comprehensive Metabolic Panel)

  • Liver, kidneys, electrolytes

• CRP (C-Reactive Protein)

  • Systemic inflammation marker

• ESR (Sed Rate / Erythrocyte Sedimentation Rate)

  • Inflammation indicator

• Albumin / Total Protein

  • Malnutrition, inflammation

• Iron studies

  • Ferritin, iron, TIBC

  • Crohn’s often causes iron-deficiency anemia

Tests Related to Medication Toxicity

(Due to biologics, immunosuppressants, steroids, etc.)

• Liver Function Tests (LFTs)

  • Especially with methotrexate, azathioprine, 6-MP

• Kidney function tests

  • For dehydration, NSAID effect, certain meds

• TPMT + NUDT15 enzyme tests

  • Required before azathioprine or 6-MP

  • Predicts risk of bone marrow suppression

• CBC every 3 months

  • To monitor bone marrow suppression from immunomodulators

• Vitamin Levels (common deficiencies with Crohn’s)

  • Vitamin B12 (especially ileal Crohn’s)

  • Vitamin D

  • Folate

  • Magnesium

  • Zinc

Medication-Specific Immunological Tests

• Biologic Drug Levels & Antibodies

  • Infliximab level + antibodies

  • Adalimumab level + antibodies

  • Ustekinumab or Vedolizumab levels

  • Determines if medication is working or failing

• TB Screening

  • Quantiferon TB Gold or PPD

  • Required before starting biologics

• Hepatitis Panel

  • Required before biologic therapy

STOOL TESTS

Core IBD Stool Tests

• Fecal Calprotectin

  • Best test for intestinal inflammation

  • Used to monitor disease activity

• Fecal Lactoferrin

  • Another inflammation marker

• Stool Occult Blood / FOBT

  • Checks hidden blood

Infection Screening

• C. difficile toxin / PCR

  • Especially important for IBD patients on antibiotics or biologics

• GI Pathogen PCR Panel (detects 20+ infections)

• Ova & Parasite exam (O&P)

• Stool culture

• H. pylori antigen (if upper GI symptoms)

SURGICAL PROCEDURES CROHN’S PATIENTS MAY NEED

Common Surgeries

• Resection of diseased bowel

  • Ileal resection

  • Small bowel resection

  • Colon resection

• Strictureplasty

  • Fixes narrowing while keeping bowel intact

• Fistula surgeries

  • Seton placement

  • Fistulotomy

  • Fistula plug or LIFT procedure

• Abscess drainage

  • Percutaneous drainage

  • Surgical drainage

Stoma-related Procedures

• Ileostomy or colostomy creation

• Stoma revision

TESTS RELATED TO CROHN’S COMPLICATIONS

Bone Health

(Because steroids cause bone loss)

• DEXA Scan (Bone Density Scan)

Eye Exams

(Crohn’s medications can cause eye changes)

• For uveitis, episcleritis, steroid-induced glaucoma or cataracts

Dermatology Exams

(Biologics can cause psoriasis-like rashes)

Cardiac Screening

• Sometimes needed for long-term chronic inflammation or medication interactions

MEDICATION SAFETY MONITORING (due to long-term use)

For Immunosuppressants (Azathioprine, 6-MP, Methotrexate)

• CBC every 1–3 months

• Liver enzymes

• Checking for pancreatitis if symptoms arise

• Annual skin exams (increased skin cancer risk)

For Biologics

• TB testing annually

• Hepatitis panel periodically

• CBC & LFT monitoring

• Regular assessments for infection risk

For Steroids

• Blood sugar monitoring

• Bone density (DEXA)

• Eye exams

• Blood pressure checks

NUTRITION & MALABSORPTION TESTS

• B12 levels

• Folate

• Magnesium

• Zinc

• Vitamin D

• Iron panel + Ferritin

• Prealbumin (nutrition marker)

OTHER POSSIBLE TESTS

• Hydrogen Breath Test

  • For SIBO (small intestinal bacterial overgrowth)

• Liver imaging (ultrasound or FibroScan)

  • For medication effects or PSC screening (more common in UC but possible in Crohn’s)

• Thyroid panel

  • Because autoimmune conditions tend to cluster