The First Visit

Corey A. Siegel

Bruce E. Sands

The first visit with a patient with inflammatory bowel disease (IBD) is perhaps the most important. In many cases, it is the first of many visits in the coming years when you will watch your patient go through life events such as applying to college and/or their first job, getting married, and having children. Perhaps the only benefit to the chronicity of IBD is the lifelong relationship that we establish with our patients. The power of this first meeting is because you may never have as much time to spend with your patient in the office again and because first impressions (both of the patients’ disease phenotype and of their trust in their physician) are hard to change. Although you need to understand the immediate needs of your patient, particularly if they are currently in the midst of a flare, your real interest should be on what you can learn at this visit to help disease management in the future. Therefore, our focus for this first visit includes (i) developing an accurate database for future reference, (ii) getting to know the patient, (iii) optimizing therapy, and (iv) beginning the process of education about their disease. We provide a “checklist” of the most important points to assist in organizing a productive first visit (Table 1.1).

DEVELOPING A DATABASE

Since your office note from the first visit will be the primary scaffolding on which you will build your ongoing database, it is important to create a complete and accurate source document. If you are “inheriting” the patient from another physician (another adult gastroenterologist, a pediatric gastroenterologist, or a primary care provider), a majority of disease information will be taken from old records. We request that all old information be sent to us prior to the visit, including endoscopy reports and biopsies, imaging results (and hard/electronic copies of pertinent studies), laboratory studies (including any special IBD testing such as genetic or serologic markers), and patient notes. Review of these data prior to the visit ensures that the precious time in the office will be used as efficiently as possible.

Are You Sure That the Diagnosis Is Correct?

A seemingly simple question such as “Is the diagnosis correct?” can oftentimes be the most difficult to answer. Be suspicious, as even experienced gastroenterologists can mistake another process for IBD or be uncertain between Crohn’s disease and ulcerative colitis. Even in the most obvious case referred by a trusted colleague, it is worth considering the broad differential diagnosis of IBD (1). If you are seeing a patient with a new diagnosis, look for evidence of chronicity of disease (e.g., symptoms, weight loss, anemia, and chronic changes on histology). If there is uncertainty, it can be extremely helpful to review the primary data (such as having a gastrointestinal pathologist review the biopsies) or repeat the studies (a repeat colonoscopy can be very valuable).

The Data

First, you need to understand the nature of the patient’s disease (phenotype) and level of activity over time. For patients with ulcerative colitis, determine if they have
disease limited to the rectum (proctitis), left-sided colitis, or pancolitis. For patients with Crohn’s disease, determine if their disease affects the small bowel or colon or both. Furthermore, ascertain if their disease has been primarily inflammatory, stricturing, or penetrating/fistulizing. It is also important to review any history of upper tract or perianal disease. A focused review of systems should include specific
questioning about oral, ocular, rheumatologic, dermatologic, or hepatobiliary extraintestinal manifestations of IBD. Although there is no formal scale/scoring system to document disease activity of their lifetime (i.e., a lifetime disease activity index), features at diagnosis that are predictive of a disabling course over the subsequent 5 years include age younger than 40, the presence of perianal disease, and the initial requirement for steroids (2). Other factors that give a sense of prior disease activity and severity include (i) steroid dependence, (ii) need for IBD-related hospitalizations, (iii) number of prior surgeries, (iv) need for narcotics, and (v) impact of their disease on their ability to work. Formal quality-of-life indices are not practical for regular use in the office, but an informal review to understand the range of activity on their best days and worst days and time spent in each state can be very helpful. Your goal should be to understand the big picture and pace of their disease, as opposed to simply how they are doing at the time of this first visit.

TABLE 1.1 Checklist for the First Visit

Developing a Database
▪	Is the diagnosis correct?
▪	Disease phenotype and extent
▪	Severity over course of their disease
▪	Extra-intestinal manifestations
▪	Prior medications
○ Efficacy, dose, and length of time; side-effects
▪	Complementary or alternative medications
▪	Physical examination
▪	Baseline laboratory values
Getting to Know Your Patient
▪	Employment
▪	Married; children
▪	Fears and concerns
▪	Timing of having children
▪	Family history
Transitioning from a pediatrician
▪	Knows their own medical history
▪	Knows purposes of procedures and tests
▪	Knows how to gather information about IBD
▪	Ability to book own appointments and fill Rx
▪	Contacts medical team on their own for questions or concerns
Optimizing Treatment
▪	Current disease activity
▪	Optimize current medications
▪	Change or add necessary medications
Health Maintenance
▪	Colon cancer surveillance
▪	DEXA scan, calcium/vitamin D
▪	Routine PAP smears
▪	Depression
▪	Vaccinations
Education
▪	Smoking and NSAIDs
▪	Educational needs
▪	Disease information
▪	Support groups
▪	CCFA membership
End of Visit
▪	Plans and instructions
▪	Follow-up scheduled

The next critical piece of data pertains to a careful review of prior medications for the treatment of IBD. As many patients might not recall all medications that they have been on without prompting, we find it useful to go through classes of medications (e.g., oral or topical 5-ASAs [5-aminosalicylates], antibiotics, corticosteroids, immunomodulators, biologics, or experimental agents) and determine if they were helpful, ineffective, or caused side effects. Dose and length of treatment are very important and might require reviewing old physician notes to ascertain these data. Distributing an “intake” form to patients with a checklist (Table 1.2) of medications can facilitate this process. It is also critical to directly ask about compliance. For instance, a patient with ulcerative colitis might claim that no 5-ASA worked for them; however, after further review you may come to find that they only took a low dose or skipped 50% of their doses. Another common example is a patient who had been on an immunomodulator (e.g., azathioprine, 6-mercaptopurine, or methotrexate) and stopped due to lack of effect. We often discover that they took the medication only for 1 to 2 months, and in many cases, they were underdosed.

Patients often list side effects of medications, typically immunomodulators. These side effects may be nonspecific (nausea, fatigue) or specific (pancreatitis, leukopenia, hepatotoxicity). Abandoning an important and effective drug for a lifetime based on patient report alone may be a disservice to the patient. The history of these reactions should be critically evaluated, with corroborative data from prior records. For example, abdominal pain and a borderline elevated amylase, which are common in patients with Crohn’s due to the disease itself (3), may not have been pancreatitis.

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