What My Patients Teach Me
By Tauseef Ali, MD as told to Marijke Vroomen Durning, RN
Managing patients with a chronic condition like Crohn’s disease is challenging professionally and personally. I’ve been working with this population and people with other gastrointestinal disorders for more than 15 years now. But as challenging as the work can be, it is gratifying when I see a patient with chronic, debilitating symptoms get better. I see that with timely and effective therapies, their intestines are healed, their symptoms improve, and they can resume their activities. There’s tremendous satisfaction in watching their quality of life improve – it’s priceless.
However, we can’t underplay the frustrations that many of my patients have daily as they navigate their disease and the health care system to get help for their Crohn’s disease.
Major Frustrations for People With Crohn’s Disease
I have learned over the years that there are multiple levels of frustration for Crohn’s disease patients. Some of the major issues are understanding the disease process and management options. With so much information online – much of it conflicting – patients can often feel overwhelmed, confused, and discouraged. Add to that the extended amount of time patients must take their medications and their risk of side effects, and perhaps the trial-and-error that goes into finding the right medication or combination of drugs, and it’s understandable how this disease can be so overwhelming.
So, the most important thing, I think, is to provide patient education. Of course, this is critical in any chronic illness, but it’s vital in Crohn’s disease. In my book, Crohn’s and Colitis for Dummies, I address many of the issues this population faces. The book helps readers actively recognize symptoms of Crohn’s disease and explains the diagnostic procedures doctors use to identify this illness. It also outlines how the whole body is affected by Crohn’s disease and the potential hazards of letting the disease go untreated. It also provides practical advice on treatment options, pregnancy, surgery, and travel-related issues, and it addresses some of the myths associated with this illness.
I think one of the things that surprised me the most when I began working in the field was how some patients with Crohn’s disease remain in denial about their illness even after a very thorough investigation. That becomes an extra challenge because we have invested their time and explained everything to them about why they have inflammation and how we need to control this inflammation. And then at the end of the day, they go back online and to social media and come up with a plan that’s not even medically appropriate and could even be dangerous to them.
It is very critical that we educate our patients not only about Crohn’s disease pathogenesis and treatment goals but also about other aspects of disease management, such as diet, limitations, and side effects of medical therapy, what to expect regarding disease progression, and surgery. We also need to develop a better understanding of management plans. For example, many patients feel like if their diarrhea and pain get better, that’s the end of the treatment, and they can stop or taper their medications down.
The basic problem is the inflammation in the gut, and if they don’t take or stop taking their treatments, even if they’re feeling better, the inflammation will continue and could cause more damage to their intestines. If we do not control the inflammation, it can lead to complications such as structural damage to the bowel. Due to persistent inflammation, patients can develop precancerous lesions that can lead to cancer in the gut. Patients may need surgery if there are strictures or blockages. It’s critical that they get the inflammation under control. So one of our foremost jobs is patient education, easing their fears, giving them correct information, making sure we address their concerns, and then also helping them by holding their hand through the journey. But we cannot do it alone.
Crohn’s Disease Treatment Needs a Multi-Disciplinary Approach
As a doctor, I am the one who makes the diagnosis, provides assessment, and creates treatment plans for the patients. But I need a health care team around me to support them. A good team includes nursing and support staff who can help the patients navigate this journey. You most likely would need staff (such as a biologic coordinator or pharmacist) to help them get their medications approved in a timely fashion. You may need a dietitian so that they can get good dietary advice.
You may also need a mental health therapist or a counselor to help them ease and address their anxiety. Stress or depression are frequently associated with patients with Crohn’s disease. Many patients can’t have a good quality of life when it comes to being social. They never know when their symptoms are going to flare up. It’s like a roller coaster ride to some of them. This can affect their relationships, stop them from completing their education, or cause issues with job performance. This disease affects them in so many ways aside from physical discomfort.
And then you need other staff such as surgeons, expert colorectal surgeons, radiologists, pathologists, and endoscopy staff – they all need to be part of this multi-disciplinary team.
Fighting the Insurance Battles
In the United States, patients with Crohn’s disease not only have to deal with their medical condition and all that it entails, but they also often have to fight insurance companies to get the necessary tests and treatments. That adds to not only their frustration but ours, too. We know we have medications that can help the patients, but they’re not cheap, and our patients often have to jump through hoops to be granted permission to use them.
Initial requests for treatment are often denied, and we must come up with a plan B or plan C, which may be suboptimal because we know our original choice is better. But the patients cannot access them because of insurance denial or cost issues. Even if we get the original drug approved, the delay itself could be harmful.
Helping Patients Speak to Their Doctor
Educated patients help themselves. There’s no doubt about it, so it’s essential for patients to ask questions when starting a new Crohn’s disease treatment. They should not only ask about treatment goals and benefits they will achieve from taking the medication, but also about the risks of taking it. But they should also keep in mind what risks they will take by not taking this drug. This discussion allows patients and their doctors to come up with very good, shared decision-making – as a team.
