10 Facts about Crohn’s Disease

According to the Crohn’s & Colitis Foundation, Crohn’s is a chronic inflammatory condition of the gastrointestinal tract. Read on to learn 10 interesting facts about this autoimmune condition.

1. It’s more common than you think

An estimated 3 million Americans suffer from autoimmune diseases of the digestive tract, referred to as Inflammatory Bowel Disease (IBD). These conditions include Crohn’s disease, Celiac disease and Ulcerative Colitis. Women and men are equally likely to be affected by Crohn’s disease, unlike many other autoimmune conditions which are more prevalent among females.

2. Crohn’s affects patients early in life

Unlike some autoimmune diseases, such as Sjogren’s Syndrome, which are more likely to develop during middle-age, Crohn’s tends to develop early in a patient’s life. Most commonly, the disease will occur in one’s teens or twenties, though some patients can experience symptoms even earlier. According to WebMD, while most people are diagnosed before age 30, the disease can still occur in people in their 60s and beyond.

3. The gastrointestinal symptoms can be debilitating

The most common symptoms of Crohn’s are gastrointestinal in nature. These symptoms include abdominal cramps, diarrhea, weight loss, anemia and delayed growth (especially in younger children). There are actually different types of Crohn’s disease depending on which part of the gastrointestinal tract is affected, and each subtype has its own specific symptoms.

4. Non-Gastrointestinal symptoms are also problematic

Crohn’s patients sometimes experience symptoms that aren’t gastrointestinal in nature, and which are often more problematic than their bowel issues. These symptoms include: fever, colitic arthritis (which migrates along the body and affects one’s knees, ankles, hips, wrists and elbows), pericholangitis (an inflammation of the tissues around the bile ducts), kidney stones, urinary tract complications, and fistulas (abnormal connections between body parts, such as organs and blood vessels).

5. It can greatly impact one’s quality of life

According to the Crohn’s & Colitis Foundation, autoimmune conditions of the digestive tract can highly impact one’s quality of life. For example, the Foundation shared the story of Paige, who was diagnosed with Crohn’s at age 20. Paige had lost 40 lbs on her already petite frame as a result of the disease, and she even had difficulty standing up, since her muscles had become accustomed to her being doubled over in pain. Thankfully, by participating in clinical trials, Paige’s condition is now improving, and she’s regaining her quality of life.

6. The condition can impact one’s mental health too

The Crohn’s & Colitis Foundation states that rates of depression are higher among patients with Crohn’s disease and ulcerative colitis as compared to other diseases and the general population. Furthermore, anxiety is also common among patients who have IBD. Dr. Megan Riehl, a clinical psychologist with the University of Michigan’s Department of Gastroenterology, explains that stress and anxiety can contribute to ‘flares’ of the disease. She also says it’s imperative for patients to find ways to cope with living with a chronic illness, such as cognitive behavioral therapy.

7. A comprehensive physical exam is necessary for a Crohn’s diagnosis

A number of advanced diagnostic tools are used to determine if a patient has Crohn’s disease. These diagnostic procedures include: imaging scans and endoscopic procedures. Imaging scans involve CT scans or specialized X-rays to view your colon and ileum (a portion of the small intestine). Endoscopic procedures, such as a flexible sigmoidoscopy or a colonoscopy, involve the insertion of a tube into one’s rectum, lower colon or entire colon to examine the area in detail.

8. Crohn’s may be genetic in nature

According to John Hopkins Medicine, Crohn’s may be genetic, especially considering it’s more prevalent among people of certain ethnic groups. For example, people of Ashkenazi Jewish descent are at a greater risk of having the disease compared to the general population. In addition, a genetic cause is suspected, since studies have shown that between 1.5% and 28% of people with IBD have a first-degree relative, such as a parent, child or sibling who also has the disease.

9. Environmental triggers for Crohn’s may also be responsible

According to the Crohn’s & Colitis Foundation, the lack of complete gene penetrance and the rapid rise of IBD incidence in certain geographic regions suggests that both genetic and environmental factors contribute to this condition. Several environmental triggers currently being studied include: diet, smoking, viruses and psychological stress.

10. There is hope

If you or someone you know has Crohn’s disease, it is important to get support for your condition. In addition to working closely alongside a team of medical professionals to get the right treatment, patients are encouraged to find a local support group where they can connect with others who are living with the condition. Moreover, patients should consider taking advantage of the many patient resources out there, such as the Crohn’s and Colitis online community, the IBDVisible blog and the patient stories center. Remember, you’re not alone in the fight against Crohn’s!

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What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.

What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!