IBD: Caring for your patients through life’s stages
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Approximately 3.1 million Americans currently have inflammatory bowel diseases and as many as 70,000 new cases are diagnosed in the United States each year, according to the Crohn’s and Colitis Foundation.
While the pathogenesis of IBD remains unclear, scientific evidence points toward an interaction between genetics, the immune system and environmental risk factors where unidentified environmental factors trigger an inappropriate immune system response to the intestinal tract.
Source: The Ohio State University.
Within genetics specifically, studies have shown 5% of affected individuals to 20% of affected individuals have a first-degree relative (parents, child or sibling) with one of the diseases, with children of parents with IBD at an even greater risk. However, researchers noted in the Crohn’s and Colitis Foundation IBD Factbook that the association between genetics and diagnosis is more about susceptibility than predisposition.
While the environmental factors that trigger IBD also remain unclear, current evidence has uncovered a few potential risk factors. Of note, researchers report active smokers are more than twice as likely to develop Crohn’s disease compared with non-smokers, NSAID and antibiotic use may increase the risk for IBD and induce disease relapse, children who underwent appendectomy were less likely to develop ulcerative colitis later in life and dietary habits may aggravate symptoms in some individuals.
“One cannot dismiss the impact of the environment on the development of IBD. This used to be a disease seen in Caucasians but now is essentially all over the world including developing nations where sanitation has improved and diets have become inclusive of processed foods and GMOs,” Sunanda Kane, MD, MSPH, professor of medicine in the division of gastroenterology and hepatology at Mayo Clinic, told Healio Gastroenterology. “Epidemiologic studies suggest diets high in processed foods, sugar and red meat (ie, a typical American diet) increases the risk for both UC and CD. Diet also plays a role in the microbiome, another aspect of the “environment” that is being actively investigated for its role in the pathogenesis of IBD.”
Although CD and UC can occur at any age, most patients who present with IBD are more frequently aged between 15 years and 29 years, Jami Kinnucan, MD, University of Michigan, Crohn’s and Colitis Foundation, said. Further, Raina Shivashankar, MD, from the Mayo Clinic, and colleagues, reported that the median age of diagnosis for CD and UC was 29.5 years and 34.9 years, respectively, in Clinical Gastroenterology and Hepatology.
“IBD affects the entire age spectrum; we know there is a very early and aggressive form that unfortunately afflicts younger patients and is heavily genetically driven. There’s a more common and well-versed IBD that typically affects adolescents and young adults and is likely a combination of complex disease factors such as genetics, environment and other exposures,” Benjamin Click, MD, of the Cleveland Clinic, added. “What we’ve seen over the last several decades is a rise in older adult IBD including adults aging with IBD but also who are developing IBD de novo; the underlying etiologies of this disease process are cause for a variety of unique treatment and disease-related considerations.”
Healio Gastroenterology spoke with these experts and others about the implications age has on the diagnosis, management and treatment of IBD.
Pediatric IBD
In many cases, the diagnosis of childhood IBD may lead to a more severe or aggressive disease course that could potentially delay or even halt normal growth. David Suskind, MD, Seattle Children’s Hospital, University of Washington, stressed that being proactive when managing pediatric IBD and focusing on nutritional and psychological well-being is crucial. Further, he emphasized that nutrition assessment and intervention within the early years may lessen the impact of IBD on quality of life.
“There are different therapeutic modalities that we use similar to adult gastroenterology, with an additional emphasis on nutrition,” he said. “In pediatric IBD, specifically in CD, the same immunosuppressants and biologics are used as well as exclusive enteral nutrition, which has been shown to induce clinical and biochemical remission with improved mucosal healing.” Though the topic of dietary habits on IBD is understudied as a whole, Suskind has found that looking closer at diet within this population has the potential to improve patient outcomes In the same way pediatric patients with IBD are developing physically, they are developing socially-emotionally as well, and the diagnosis of a chronic, life-long disease impacts how these patients feel about themselves and how they interact with the world around them. “When we are working with patients who have IBD, and we’re trying to improve their outcomes, we can’t just focus on the disease itself. We have to focus on the person to assure that our treatment aligns with that patient,” Suskind concluded. “Taking a holistic approach to patient care is central to improve outcomes for our patients.”
Transition to Adult IBD
Recognizing chronic disease overall is tough for any patient; for those diagnosed with IBD in the early years of life, especially, comes the added complication of disease management transition from childhood to adulthood. Transition programs are unique in that they not only prepare patients for the physical transition from a pediatric facility to an adult facility, but they introduce the concept of growing up and growing into new responsibilities.
At The Ohio State University Wexner Medical Center pediatric-to-adult transition clinic, and previously at the University of Washington, Anita Afzali, MD, MPH, FACG, aims to empower, educate and advocate for her young adult patients with IBD. The first step in this process is early discussion regarding treatment goals and what treatment itself will look like for each individual patient.
“For the clinician from the pediatric perspective, it is extremely important to not surprise the patient, caregivers or the adult team. Introduce the concept of transition early to the patient, have a good medical summary form and let the adult team know what has been done and what hasn’t been done: communicate and describe it all,” Afzali said. “For the adult side, recognize that caring for each of these young adults is different with unique challenges related to their health and environment; be able to discuss and provide the appropriate support or resources and know that managing their disease may require a little bit of closer monitoring compared with the typical older adult patient diagnosed with IBD.”
Though IBD presentation can be similar through the ages, there are several situations unique to this population, particularly young women with an early diagnosis of IBD.
Special Consideration: Women of Childbearing Age
It is known that IBD has real impact on the developing body, but it can also have severe implications on body image, sexuality and women’s health. Specifically, the risk for cervical cancer and dysplasia is higher among women on medical therapy for IBD and the hormonal changes of menstruation have the potential to negatively impact a woman’s disease management.
“It’s a whole spectrum of women’s health and management that is beyond, or in addition to, fertility and pregnancy. It requires a different level of support and education regarding recognizing what to look for, what to monitor and what to advise our patients on,” Afzali said. “There’s a health maintenance checklist; but when it comes to managing women, particularly women of childbearing age, this checklist should be discussed more frequently based on what the needs are of the patient at that time.”
A women’s health topic of note in IBD management is menses; specifically, the increased risk for delayed menses onset and menstrual abnormalities when their disease is not in a controlled state. Within this younger post-pubescent population, active prevention of unwanted pregnancy via contraceptives is key.
Another women’s health topic of note is fertility. While it is generally preserved, women with IBD are less likely to have children due to voluntary childlessness even though the risk for passing along UC and CD is less than 5%. However, it should be noted that uncontrolled active inflammation may decrease fertility. Additional implications active IBD has on pregnancy itself is increased risk for spontaneous abortion as well as low birth rate and preterm birth. Kinnucan said studies evaluating the outcomes of active UC on pregnancy also showed a more significant risk for disease progression while the outcomes of active CD on pregnancy were inconclusive.
The overall treatment of young women of childbearing age with IBD is like any age group where remission is induced by a steroid-sparing therapy. Most IBD therapies prescribed are safe to use during pregnancy and breastfeeding. However, there are two therapies that we avoid: Methotrexate and tofacitinib. Methotrexate is often used in combination with biologic therapies or as a monotherapy, but is used with caution in childbearing people and is contraindicated for pregnancy. Further, patients must be off it within 6-months of considering pregnancy. Tofacitinib has limited data at this point for use in pregnancy and it is recommended to discontinue prior to conception.
“It’s important for any provider caring for IBD patients, especially in the childbearing years, to become comfortable talking about the issues surrounding sexuality, fertility and pregnancy,” Kinnucan added. “Understanding or having a better understanding of what a patient’s desires are, even talking about issues with body image and sexuality will help providers better care for that patient and shape their future treatment plans.”
Adult IBD Complications
Compared with adults without IBD, the CDC reports an IBD diagnosis correlates with a higher likelihood of additional chronic conditions like cardiovascular disease and cancer. Further, Kane added an IBD diagnosis may also lead to several disease-specific complications. Specifically, adults with CD may encounter stricture-causing small bowel obstructions, control perforations with abscess formation and nutritional deficiencies. Though uncommon, adults with UC may develop toxic megacolon or perforation.
As with any age group, and with any chronic disease, close monitoring is essential to ensure proper management and avoid adverse outcomes.
“For any patient, the ‘optimal’ treatment plan is one that is effective, low risk, affordable and acceptable to the patient,” Kane said. “Fortunately, we have quite a few options today for both CD and UC so that one size does not have to fit all.”
Older Age IBD
In the same way pediatric patients undergo a complex transition from childhood to adulthood IBD management, adult patients undergo a secondary transition from adulthood to older adulthood IBD management.
“IBD affects the older adult population in a number of different ways,” Click said. “First and foremost, there’s the direct disease-related impact on individuals and quality of life as well as the physiologic changes related to age, which can influence their disease course and complications.”
One of physiologic complications older adult patients with IBD come across is sarcopenia; this increases the infection risk, likelihood of health care use and post-operative outcomes. A secondary physiologic change is decreased pelvic floor, muscular coordination and anal sphincter tone, which impacts their ability to use certain medical therapies, such as enema-based formulations, as well as the physical ability to apply topical-based treatments. Click also noted cognitive changes associated with aging effects treatment adherence and the ability to execute more complex strategies.
In addition to undergoing physiologic changes for patients in this population, there is the added complication of the increased risk some therapeutic agents carry. The literature suggests many older adult with IBD are more frequently treated with corticosteroids rather than biologic agents despite the risks associated with the use of steroids and potentially due to clinician’s wariness of biologics.
Click suggested continuation of use of available agents with a focus on simplified treatment (ie, monotherapy instead of combination therapy) regimens on an as-needed basis to reduce potential risk.
“While older adults with IBD may pose a significant concern to health care providers related to some of the risks and potential complications related to therapy, age is just a number,” Click concluded. “A more encompassing assessment/intervention strategy and trying to strike that balance between benefits of disease control with the risks of therapies is important in older individuals with IBD.”
In the time since the identification of IBD, researchers have made considerable progress in understanding its disease course and development of targeted treatments. Future research is needed to continue perfecting management strategies and to one day find a cure.
“Overall, regardless of age group, the goal should be to find the effective treatment and management for the right patient,” Afzali concluded. “Find the appropriate therapy and start the right therapy early; the longer you wait, the more likely your patient will experience worse disease outcomes.”
- References:
- Crohn’s and Colitis Foundation of America. Fact sheet. Available at: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/IBDoverview.pdf. Accessed June 23, 2021.
- Crohn’s and Colitis Foundation of America. The facts about inflammatory bowel diseases. Available at: https://www.crohnscolitisfoundation.org/sites/default/files/2019-02/Updated%20IBD%20Factbook.pdf. Accessed June 14, 2021.
- CDC. Inflammatory bowel disease: data and statistics. Available at: https://www.cdc.gov/ibd/data-statistics.htm. Accessed June 14, 2021.
- Keyashian K, et al. Gastroenterology. 2019;doi:10.1053/j.gastro.2019.01.156.
- Nimbal. Nimbal comics presents: Professor Nimbal. Available at: https://www.nimbal.org/uploads/pdf/professor-nimbal_explorations-in-crohns-and-colitis.pdf. Accessed June 14, 2021.
- Shivashankar R, et al. Clinical Gastroenterol and Hepatol. 2017;doi:10,1016/j.cgh.2016.10.039.
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