By Tauseef Ali, MD as told to Marijke Vroomen Durning, RN
Managing patients with a chronic condition such as Crohn’s disease is challenging both professionally and personally. I have been working with these people and people with other digestive disorders for over 15 years now. But as hard as work can be, it’s gratifying to see a patient with chronic, debilitating symptoms get better. I see that with timely and effective treatments, their bowels heal, their symptoms improve, and they can resume their activities. There is tremendous satisfaction in watching their quality of life improve – it’s priceless.
However, we cannot underestimate the frustrations that many of my patients experience daily as they navigate their disease and the health care system to get help for Crohn’s disease.
Big frustrations for people with Crohn’s disease
I have learned over the years that there are multiple levels of frustration for patients with Crohn’s disease. Some of the key 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 frustrated. Add to that the long duration that patients must take their medications, the risk of side effects, and perhaps the trial and error that goes into finding the right medication or combination of medications, and it’s understandable how overwhelming this can be.
So, the most important thing, I think, is to provide patient education. Of course, this is critical in any chronic disease, but it is important in Crohn’s disease. in my book, Crohn’s and Colitis For Dummies, I address many of the issues that these populations face. The book helps readers actively recognize the symptoms of Crohn’s disease and explains the diagnostic procedures doctors use to identify the disease. It also shows how the whole body is affected by Crohn’s disease and the potential risks of leaving the disease untreated. It also provides practical advice on treatment options, pregnancy, surgery, and travel-related issues, and addresses some of the myths associated with the disease.
I think one of the things that surprised me the most when I started working in this field is how some patients with Crohn’s disease remain in denial about their disease even after a very thorough investigation. This becomes an additional challenge because we invested their time and explained everything to them about why they have inflammation and how we need to get that inflammation under control. And then, at the end of the day, they go back to the internet and to social media and come up with a plan that isn’t medically appropriate and may even be dangerous for them.
It is critical that we educate our patients not only about the pathogenesis of Crohn’s disease and the goals of treatment but also about other aspects of managing the disease, such as diet, restrictions and side effects of medical treatment, and what to expect regarding disease progression and surgery. We also need to develop a better understanding of management plans. For example, many patients feel that if their diarrhea and pain improve, it is the end of treatment, and they can stop or gradually reduce their medication.
The underlying problem is the inflammation of the intestines, and if they don’t take their medication or stop taking it, even if they are feeling better, the inflammation will continue and may cause further damage to their intestines. If we do not control inflammation, it can lead to complications such as structural damage to the intestines. Because of the persistent inflammation, patients can develop precancerous lesions that can lead to cancer in the gut. Patients may need surgery if there is a stricture or blockage. It is necessary to control inflammation. So one of our most important jobs is to educate the patients, ease their concerns, give them the right information, make sure their concerns are addressed and then also help them by holding hands through the ride. But we can’t do it alone.
The treatment of Crohn’s disease requires a multidisciplinary approach
As a physician, I am the one who makes the diagnosis, provides the evaluation, and creates treatment plans for patients. But I need a healthcare team around me to support them. A good team includes nursing and support staff who can help patients navigate this journey. You will likely need staff (such as a biologics coordinator or pharmacist) to help them get their medication approved in a timely manner. You may need a dietitian so they can get good nutritional advice.
You may also need a mental health therapist or counselor to help them relieve and manage their anxiety. Stress or depression is often associated with people with Crohn’s disease. Many patients cannot have a good quality of life when it comes to being social. They never know when their symptoms will flare up. It’s like a roller coaster ride for some of them. This can affect their relationships, prevent them from completing their education, or cause problems with job performance. This disease affects them in many ways besides physical discomfort.
And then you need other staff like surgeons, expert colorectal surgeons, radiologists, pathologists, endoscopic staff – they all need to be part of that multidisciplinary team.
Fight insurance battles
In the United States, patients with Crohn’s disease not only have to deal with their medical condition and all that entails, but they also often have to battle insurance companies to get the necessary tests and treatments. This not only increases their frustration, but our frustration as well. We know we have medicines that can help patients, but they aren’t cheap, and our patients often have to jump through hoops to get permission to use them.
Initial requests for treatment are often denied, and we must come up with a Plan B or a Plan C, which may be suboptimal because we know our original choice is better. But patients can’t access it due to insurance denials or cost issues. Even if we get the original approved drug, the delay itself can be harmful.
Help patients talk to their doctor
Educated patients help themselves. There is no doubt about it, so it is essential that patients ask questions when starting a new treatment for Crohn’s disease. They should not only ask about treatment goals and the benefits they will achieve from taking the medication, but also about the risks of taking it. But they should also be mindful of the risks they will be exposed to by not taking this drug. This discussion allows patients and their physicians to come to a very good, shared decision-making process – as a team.