An image of a person in bed. They are under the blankets, and have covered most of their face with a pillow. Their arm lays on top of the blanket, holding a pair of glasses.
Check out Aiswarya’s presentation slides on fatigue & IBD! She shares about the prevalence of fatigue, types of fatigue, risk factors, the impact fatigue can have on IBD patients, and some suggestions for managing fatigue.
A light yellow background with pink-orange text reading “mental health and IBD.” There are pink graphics of an intestine and a brain on either side of the text.
A light yellow background with pink-orange text and pink graphics of an intestine and brains. Text included below.
Some connections between Mental Health and IBD (sources included below):
Some evidence supports a reciprocal relationship between mental health and disease activity. Depression is more consistently linked to outcomes than anxiety.
Mental health issues are strongly linked to relapse and recurrence. Stress-related cytokine production likely contributes to inflammation. Anxiety and depression affect treatment adherence, leading to worse outcomes.
Psychiatric comorbidities remain a major driver of poor outcomes and healthcare costs despite advances in treatment.
A light yellow background with pink-orange text and pink graphics of a smiling intestine and brain. Text included below.
Some Daily Habits to Help your Mental Health:
☐ Take medications as prescribed
☐ Eat balanced meals that support your gut health (avoid known triggers)
☐ Drink enough water throughout the day
☐ Practice 5–10 minutes of relaxation (deep breathing, meditation, or gentle stretching)
☐ Check in with yourself emotionally (How am I feeling today?)
☐ Engage in light physical activity if able (walk, yoga, stretching)
☐ Prioritize 7–9 hours of quality sleep
☐ Write down one thing you’re grateful for today
A light yellow background with pink-orange text (included below).
Sources:
Mental Illnesses in Inflammatory Bowel Diseases: mens sana in corpore sano. Bartocci et al. 2023. https://pmc.ncbi.nlm.nih.gov/articles/PMC10145199/
Consensus Statement on Managing Anxiety and Depression in Individuals with Inflammatory Bowel Disease. Hinnant et al. 2025. https://academic.oup.com/ibdjournal/article/31/5/1248/7739104
https://www.crohnscolitisfoundation.org/patientsandcaregivers/mental-health
Scrabble tiles spelling out “mental health” sit on a white background. A branch with leaves is in the upper right corner.
Living with IBD comes with a lot of constraints that no one prepares you for. Every time one goes through a major life transition like starting college, joining work, or getting into a relationship, adapting to the changes is never easy. It’s often difficult to fit in due to our IBD, which in turn puts us under a lot of stress and anxiety. Research indicates that bowel-related issues are a widespread cultural taboo and historically, IBD has been seen as “psychosomatic,” further stigmatizing the condition.
To learn more about this, I read a paper titled “The mediating role of psychological inflexibility on internalised stigma and patient outcomes in a sample of adults with inflammatory bowel disease.” This study was conducted to examine the relationship between ‘psychological inflexibility’ (when someone struggles to adapt to challenges, avoiding emotions or feels stuck) and ‘internalized stigma’ (when individuals adopt negative societal beliefs or shame as their own, and devalue their identity) on health outcomes. The authors looked at outcomes like mental distress (depression, anxiety, stress), health related quality of life, self-efficacy, self-concealment (hiding personal information that is distressing or negative from others), beliefs about emotions, and fatigue (physical and mental) in adults with IBD using an online survey of 382 participants.
This study suggested that:
Adults with IBD who had higher rates of psychological inflexibility also had higher rates of internalized stigma, negative beliefs about their emotions, self-concealment, mental distress, fatigue, and impaired quality of life.
Psychological inflexibility was inversely related to committed action, stigma resistance, and IBD self-efficacy.
Adults with IBD who had higher rates of internalized stigma also showed higher rates of mental distress, self concealment, negative beliefs about their emotions, fatigue, and poor health-related quality of life.
Internalized stigma was inversely correlated to stigma resistance, IBD related self-efficacy, and committed action.
Participant’s age and educational level showed an inverse correlation with their psychological inflexibility. Their IBD severity (in the past 3 months), the presence of an ostomy, and their COVID-19 self-isolation status were positively correlated.
Internalized stigma was higher for individuals with an ostomy, those currently taking steroids, who had experienced severe IBD in the past 3 months, and who were more self-isolated, whereas educational level was inversely correlated.
Other interesting insights from this study:
Individuals who face discrimination regarding their IBD, who are less able to employ ‘flexible’ responses may spend more energy avoiding stigmatizing experiences, making it harder for them to engage in meaningful activities.
New research indicates that general familiarity with IBD can help reduce public stigma; highlighting the importance of IBD awareness campaigns to increase public understanding of IBD, thereby reducing stigma.
These study findings suggest that lower levels of internalized stigma is associated with increased psychological flexibility and better patient outcomes. Modalities of therapy like ‘Acceptance and Commitment Therapy’ (ACT) – which aim to increase psychological flexibility by changing individuals’ relationship with their thoughts, feelings and behaviors – may be a helpful intervention.
Personally, years of living with IBD have enabled me to build a circle of people where I can take my armor off. But still, going through repeated flares, body image issues, breaks from education, social isolation, and being under steroids takes a toll on my mental health and quality of living. Often the medical team's support stops once your blood counts are under control, leaving us with the responsibility of picking up ourselves and moving on with the new normal.
Citation:
Reynolds DP, Chalder T, Henderson C. The mediating role of psychological inflexibility on internalised stigma and patient outcomes in a sample of adults with inflammatory bowel disease. J Crohns Colitis. 2025 Apr 1:. doi: 10.1093/ecco-jcc/jjaf055. Epub ahead of print. https://pubmed.ncbi.nlm.nih.gov/40168103/
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A brown wall with a white spray-painted ‘disabled’ symbol.
In his article “Measuring Disability in IBD: The IBD Disability Index,” Colombel discusses how IBD is viewed in literature and society. He mentions that IBD has received limited attention due to two main reasons. First, IBD has been considered less disabling compared to other chronic diseases, like multiple sclerosis, leading to underestimation of its impact. Second, there has been confusion in the literature about the true definition of "disability" in relation to IBD, with many definitions that do not align with the World Health Organization's (WHO) standard.
Disability, according to the WHO, refers to the objective problems patients face across various health domains, which is distinct from subjective quality of life. Challenges specific to IBD, such as access to toilets and dietary restrictions, affect disability, and Colombel argues, should still be measured using the same WHO definition applied to all diseases.
To address this gap, the IBD disability index was developed through a comprehensive process, including a systematic literature review, patient interviews, an expert survey, and a cross-sectional study across multiple continents. The final index incorporates a range of factors such as sleep, energy, body image, pain, and environmental influences (e.g., access to healthcare). It aims to provide a standardized measure of disability in IBD patients.
The IBD disability index is currently being validated and is expected to help in clinical trials and research. Some questions in the index include sleep, body image, and pain. Once validated, Colombel believes it could influence patient care by raising awareness about disability in IBD and guiding healthcare interventions. It could also help identify predictors of disability and support the development of strategies to prevent disease progression and long-term disability.
In clinical practice, while the index may not be used daily, it could inform clinicians to ask patients about issues that affect their disability, improving patient care and satisfaction. Measuring disability in IBD will ultimately lead to better understanding and management of the disease, enhancing both clinical outcomes and quality of life for patients.
This is so fascinating to me, as someone with IBD. The comparison of how disabled someone is based on how impacted they are by their circumstances – and if they can make it through the cut-throat application process to be considered “truly” disabled by the government – seems to lead to isolation of people with chronic conditions like IBD.
When we’re quick to make comparisons or “rank” disability, we alienate others who may not experience disability exactly as we do, but who still may understand our lifestyle or lived experience more so than able-bodied individuals.
I also think there's a unique aspect of being in "remission" with IBD that others don’t always understand, which makes it complex. Sometimes, my IBD impacts me more than it might seem to others, but because the effects aren’t always visible, it’s a concept that can be difficult for people to fully understand.
Having an "index" to show how IBD affects people's lives could really help shine a light on the struggles many face. It could be a way to put into words the challenges that aren’t always visible, making it easier for others to understand just how much this condition impacts daily life – especially in contexts like healthcare appointments, where patients sometimes feel their experiences are not being heard or validated by providers.
Encouraging healthcare providers to use a client-centered, holistic approach when listening to us can lead to a healthier relationship with the healthcare field, and additions like training and feedback surveys could also help in this aspect. In the meantime, we can start by sharing our IBD experiences (through blogs, videos, campaigns, or social media), to help others understand the real-life impacts of IBD, in hope that spreading awareness and knowledge provides some insight into what we go through!
Citation: Colombel JF. Measuring Disability in IBD: The IBD Disability Index. Gastroenterol Hepatol (NY). 2013 May; 9(5): 300-2. https://pmc.ncbi.nlm.nih.gov/articles/PMC3740806/
(Image from Unsplash)
Disclaimer: This piece is not intended to serve as medical advice, but as a reflection on strategies for patient advocacy. Always talk to your GI provider before making any changes to your diet, medication regimen, or any other aspects of your health care.
This is a review article that compiles several studies which center around how diet interplays with Crohn's disease and colitis. Articles are subcategorized by well known factors that contribute to inflammation including meat, dairy, additives, and fiber. Articles and studies are also graded on academic rigor with the gold standard being a randomized control trial and lower quality studies being observational data.
First, the article talks about EEN. What is EEN? EEN stands for Exclusive Enteral Nutrition, which means nutritional resources come from a liquid formula for 6-8 weeks (gross). EEN has been shown to achieve clinical remission similar to corticosteroids in pediatric populations. Adult populations seem to follow a similar trend.
Compared to steroids, using a EEN liquid formula based diet is way better to remove the potential harmful side effects of steroids. More specific data shows that factors such as male sex, younger age, milder disease, and certain microbiome profiles respond better to EEN. One criticism can be the healthy user bias where study participants are naturally going to be healthier people and that the person who can tolerate EEN for 6-8 weeks may just be a more self-disciplined person with less financial or social barriers, and overall healthier person.
Let’s be real. Would you sign up for a smoothie-only diet for 6-8 weeks? Authors looked into other diet options such as PEN or Partial Enteral Nutrition where only a portion of food intake is liquid formula and the rest is unrestricted food intake. However, studies have not been promising in PEN’s ability to reduce inflammatory markers such as fecal calprotectin or CRP. Whether that's because of poor ability to stay on that diet or whether that's because of the diet itself is hard to say.
Crohn’s Disease Exclusion Diet (CDED)
Crohn’s Disease Exclusion Diet (CDED) uses 50% PEN and permits only certain foods in three phases:
Phase 1 - Chicken breast, fish, lean meats, olive oil, onion, potatoes, rice, tomatoes
Phase 2 - certain legumes, fruits (blueberries, kiwis, and peaches), vegetables (broccoli, cauliflower, sweet potato, and zucchini), oats, whole-grain bread and pasta
Phase 3 - can introduce foods such as alcohol, coffee, dairy, grains, and seafood
Foods to avoid in ALL phases - Process meat, artificial sweeteners, seeds, emulsifiers, and preservatives
CDED has been shown to reduce inflammatory markers but has yet to be validated in a larger scale study.
Find more information about the Crohn’s Disease Exclusion Diet on the Nutrition Therapy for IBD website.
Diets for Ulcerative Colitis
There's exciting new evidence in ulcerative colitis that indicates that high levels of Hydrogen sulfide (H2S) can increase disruption of the microbiome and cause injury to the colon. Fecal transplant has also been shown to be more impressive and impactful in reducing inflammatory markers when paired with a plant based and low protein based diet. The Mediterranean diet has also shown to improve inflammatory markers but it still seems unsure whether the Mediterranean diet alone is causing this or whether it's the removal of the standard American diet which is known to be high in fats and protein.
I personally want to focus not on any specific diet but the overarching data that seems to indicate that avoiding processed foods, especially processed meats, can help to reduce inflammatory markers. Whether that reduces symptoms from a subjective patient point of view is a little harder to capture in the data. So far, the evidence is clear: There is no evidence that IBD can be treated with diet alone.
Our disease as IBD patients is still a medical disease that requires specific medications and Hopefully we can continue to see more diet and nutritional studies as we all have personal common-sense-knowledge that diet does impact our flares.
One of the best ways to personalize your own flares is to capture a food journal where you can document certain food triggers that occur with flares. This can be really useful in bringing to your gastroenterologist or other specialist, in order to develop a diet plan that works for you. There’s real hope in using food as part of your treatment plan, and with the right approach, it could help you feel more in control of your IBD.
Featured photo by Dana Tentis from Pexels.
It’s an uncomfortable feeling, your insides pushing upwards through you, making you retch, sometimes resulting in you vomiting the contents of your digestive system, and other times, just persisting within you. When you’re nauseous, it’s difficult to think about anything, much less do something. You just hang in there, praying for that sensation to disappear (either on its own or with medication), or ffs to just throw up already, so you can finally stop feeling utterly disgusting.
Nausea is a common complaint not only in people with inflammatory bowel disease (IBD) but across many different conditions like “stomach flu” and other infections, sensitivity to strong smells, morning sickness during pregnancy, or even in response to certain medical treatments (such as in cancer). There is a lot of advice floating out there on what you should or shouldn’t do to deal with your nausea (e.g., NHS, accessed 2024).
Here, I focus on the why and how of retching, nausea, and vomiting by discussing [just some of] the basic neurobiology underlying these uncomfortable symptoms.
When a toxin is sensed in your gut, your brain goes into defense mode and orchestrates retching, nausea, and vomiting behaviours. This coordinated response does not only expel the toxin from your body, but also helps prevent future exposure to that toxin by forming an unpleasant association between the toxic substance and your bodily response.
Typically, a toxin will get into your gut through contaminated food that has toxin-producing bacteria, or through direct ingestion of a harmful substance. For example, during excessive drinking, your liver can get overloaded and unable to successfully filter out all of the alcohol from your blood (Cleveland Clinic, accessed 2024). Sensing the elevated blood alcohol levels, your brain triggers its coordinated motor responses such that you throw up, removing excess alcohol from your body. Furthermore, earlier episodes of inebriation teach you how much alcohol is too much for you (i.e. how many drinks does it take before you start throwing up or pass out?), so you are less likely to consume excessive liquor in the future.
Additionally, in autoimmune diseases like IBD, the body mistakes its own tissue as pathogenic, so the nausea you experience in IBD may be from your body mistakenly assuming you were exposed to toxins. In response, as it does during toxin exposure in an otherwise healthy body, the brain triggers retching, nausea, and vomiting.
The defensive response relies, firstly, on receptors in your gut and other peripheral regions of your body detecting the toxin, such as when the toxin has a chemical structure that can bind to a chemoreceptor (chemical receptor), changing its conformation (shape). This change then leads to a cascade of chemical signals in your gut cells, which then relay the information through the vagus nerve to the brainstem. In the brainstem, a region called the dorsal vagal complex (DVC) acts as the brain’s relay centre, receiving information from your organs as well as sending information to other brain regions, including the ventral medulla and hypothalamus (Hornby, 2001). These areas of the brain coordinate retching, nausea, and vomiting behaviours.
For example, Xie et al. (2022) studied the toxin-induced defensive response by injecting mice with a bacterial toxin called Staphylococcal enterotoxin A (SEA). In these mice, in response to SEA, gut enterochromaffin cells release a molecule called serotonin. (Yes, this is the same serotonin you may have heard of as the “feel good” chemical in the brain! But here, serotonin has a different function as a gut messenger.) Serotonin release then activates sensory neurons in the vagus nerve, which carry the information to a specific subset of neurons in the DVC. These brainstem DVC neurons in turn activate a specific neuronal population in the medulla. Together, the DVC and medullary neurons coordinate motor signals, sent also via the vagus nerve to the site of action in the body, thus inducing the mouse’s retching behavior.
Keeping this cascade of signals in mind, newer medications to prevent nausea or vomiting are designed to act on receptors in vagal nerve endings or in the DVC. For example, you can prevent vomiting through blocking neurokinin-1 receptors (NK1R) in the DVC or by activating cannabinoid receptors (CB1R) – also in the DVC – using the active component of marijuana called THC (delta(9)-tetrahydrocannabinol).
Importantly, while scientists have made strides to understand the gut-brain pathway, including the impact of the gut microbiome, we still have many knowledge gaps. The mechanisms underlying gut sickness responses are a subject of active investigation, and can lead to recognizing new therapeutic targets to dissipate the discomfort of nausea in IBD, infection, oncology, and beyond.
Featured photo by MART PRODUCTION from Pexels
This article is strictly for educational purposes. This article is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician relationship and should not be used as a substitute for professional diagnosis, treatment, and/or management. Please consult your health care provider before making any health care decisions for guidance about any specific medical condition. References and links to third parties do not constitute an endorsement or warranty of any kind by Crohn’s & Colitis Young Adults Network (CCYAN).
The American Gastroenterological Association (AGA) is a professional organization focused on digestive health. They bring together doctors, researchers, and others interested in stomach and intestine problems, including IBD (Inflammatory Bowel Disease). The AGA publishes scientific journals, holds meetings, and works to improve patient care.
Experts (doctors, researchers, and others) in IBD performed a review of existing research articles and studies alongside expert opinion to provide practical guidance on diet and nutritional therapies in IBD patients.. This received peer review both internally within AGA and externally outside of AGA.
This was not a formal systematic review, meaning they cannot recommend the strength of any singular suggestion.
According to the AGA, if there was one diet for patients to start from, then it would be the Mediterranean Diet which is “rich in a variety of fresh fruits and vegetables, monounsaturated fats, complex carbohydrates, and lean proteins and low in ultraprocessed foods, added sugar, and salt for their overall health and general well-being”.
Low amounts of red meat have been associated with decreased flares in patients with ulcerative colitis.
Some Crohn’s patients can develop strictures which narrow the tunnel of the colon that can increase the risk of inflammation with certain harder-to-digest foods.
AGA recommends decreasing fibrous foods and raw vegetables that are easier on the colon to channel through all the way to the rectum.
AGA recommends that patients share this document with their doctor on the most updated guidelines.
Patients with IBD are at higher risk for low levels of Vitamin D, B12, and iron.
AGA recommends to speak with your doctor on monitoring levels regularly.
Diet can be complicated by malnutrition, short bowel syndrome, enterocutaneous fistula, and/or requiring more complex management.
AGA recommends involving a registered dietitian to help patients in individualizing their diets.
Managing IBD requires a multifaceted approach that goes beyond medical interventions. Dietary adjustments, stress management, medication adherence, and regular follow-ups with healthcare providers are essential components of effective management. Additionally, having a supportive network of peers who can offer empathy, understanding, and practical advice can significantly enhance the quality of life for young adults living with IBD.
In conclusion, the key takeaway for young adults struggling with IBD is the recognition of its complexity and the importance of assembling a supportive team, including a GI doctor, registered dietitian, and peers from organizations like CCYAN, to navigate the challenges of living with this chronic condition.
Information in forming this article was taken from the 2024 AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease: Expert Review
Source: Hashash, J. G., Elkins, J., Lewis, J. D., & Binion, D. G. (2024). AGA Clinical Practice Update on Diet and Nutritional Therapies in Patients With Inflammatory Bowel Disease: Expert Review. Gastroenterology, 166(3), 521–532. https://doi.org/10.1053/j.gastro.2023.11.303
Featured photo by picjumbo.com from Pexels.
