How to know if your therapy is working for you
Which patients are most successful at managing IBD? Which are more likely to stay in remission?
Which patients are most successful at managing IBD? Which are more likely to stay in remission?
Individuals and families who make it a point to learn as much as they can about the disease are the ones who best understand what’s happening. And because of their efforts, they are the ones who are most likely to stay in remission.
While many reasons exist as to why one person might do better than another, understanding what’s happening and learning as much as you can is a necessary step in the right direction. And it’s a first step toward managing IBD problems.
Why?
The healthcare providers you see are experts in their fields, concerned about your care, treatment, and outcome. However, their decisions are mostly based on what you tell them. You should want to be the perfect partner with your healthcare providers. For that, you have to make sure you’re accurate and honest in what you tell them. In fact you, your healthcare providers, and your child have got to be a team to assure the very best possible outcomes.
So, in that light, it is essential that you and your child understand IBD and everything about it. Everybody’s IBD “presents” (how it appears in your child) differently. Here are some of the questions you should be thinking about to discuss with your doctor:
What were your child’s first symptoms?
How did you first recognize that there was a problem? (Knowing this helps you predict what the warning signs will be when your child has flares or increased symptoms.)
You may be wondering what the usual symptoms are. Generally they include the following:
- Diarrhea
- Abdominal pain
- Fevers
- Oral ulcerations
- Joint pains
- Rashes
Of course, you should note any other symptoms you’ve noticed and be sure to mention them to your doctor. The severity of these symptoms may vary. Your job is to “track” their severity to determine how well your child (or you, if you are the patient) is doing.
What do we mean by “tracking?”
At Children’s, children with Crohn’s disease and ulcerative colitis are “tracked”—that is, monitored for disease activity. Tracking means keeping a written account of the patient’s symptoms over time. For example, if the main symptom is bloody diarrhea, make a note of each episode of diarrhea, its consistency, how much blood it contains, and anything else that seems important.
Here is an example:
Monday, June 17
5 bowel movements, mostly watery with blood in 3 of them. No stomach pain.
This will help your child’s healthcare team assess the severity of the flare and what treatment is indicated.The level of flare activity is defined by a specific score. I will describe these scores in the next few pages. These scores give us a solid idea as to how well a patient is doing, how effective a particular therapy is, or if other therapy should be considered.
Tracking is not instinctive, but it is essential. Learning how to properly do this helps you explain the degree of illness in a way that is understandable to your child, yourself and your healthcare provider. Tracking how an individual is doing helps provide the best care for your child by giving objective information which can be followed over time. While tracking is important to learn, it’s also fairly simple to learn. I promise that you, as a parent or caregiver, will have very little problem learning how to do it.
Here are my suggestions:
Relax.
(Actually, that may be the hardest part! But it’s a very important part.)
Don’t over-analyze!
(That is, worry, worry, worry!)
As a parent myself, this is easier said than done! But it’s important not to get hung up on the small details and lose sight of the big picture. Don’t question your child every minute about how they feel. That is, don’t worry, worry, worry and don’t ask, ask, ask. Checking in weekly or even monthly will work just fine for establishing how things are going for your child. Besides, as a parent or caregiver, you will recognize plenty of nonverbal cues in your child that gives clues as to how they feel (energy level, fatigue, hurting tummy, etc.).
Perspective is very important. If we overreact, there’s a chance we might overtreat; if we underreact we might undertreat. Remember, you’re part of a team. Stand back and take a deep breath. Discuss things with your healthcare provider and with other parents. This can help give you a sense of the best way to handle things.
Give yourself time. It won’t be long until you will be the expert helping other parents who are just beginning the process of managing their child’s disease.
The formal name of the score for pediatric Crohn’s disease is the Pediatric Crohn’s Disease Activity Index, or PCDAI. (Adult patients have different but similar scores.) Depending on how many symptoms are present and the severity of those symptoms, the PCDAI lets your doctor know if you are likely in remission (our goal!), having mild to moderate disease activity, or experiencing severe disease activity.
The PCDAI is scored by examining a patient's symptoms including abdominal pain, stools per day, overall well-being, as well as laboratory exams, including—Hematocrit, Sedimentation rate, Albumin and. In addition an abnromal physical exams, including— poor weight, height, abdominal tenderness, or perirectal exam increases the PCDAI. Other manifestations of IBD which are factored in include fever greater than 101.3°F (38.5°C) for 3 days over the previous week, oral ulcerations, definitive arthritis, uveitis, erythema nodosum (an IBD associated rash), or Pyoderma gangrenosum(an IBD associated rash)).
While the PCDAI is helpful for physicians, it’s more difficult to do at home because it relies on laboratory studies. In that case, and when laboratory studies cannot be done, the shortened PCDAI is effective. This primarily uses the symptoms of Crohn’s (see above list) to determine the severity of disease. While this may sound obvious to do—that is, follow the symptoms—oftentimes during the busy juggling of life, we and our children forget to track these symptoms. This can make it difficult to determine if somebody is doing better or worse or having no change at all.
Children with ulcerative colitis, on the other hand, use a different scoring system—the Pediatric Ulcerative Colitis Activity Index (PUCAI). Its score is based on the assessment of the following symptoms:
abdominal pain, rectal bleeding, stool consistency, number of stools in a 24-hour period, nocturnal stools that awaken the patient, and the child’s activity level
Similar to the PCDAI, depending on how many symptoms are present and the severity of those symptoms, the PUCAI lets your doctor know if you are likely in remission (again our goal), having mild to moderate disease activity, or experiencing severe disease activity.
Another tool that is used to assess how well a person with IBD is doing is laboratory testing. For many patients, laboratory studies can show evidence of inflammation, anemia, and other signs of disease activity, although it is important to note that some people with IBD can have active disease with normal laboratory studies. Oftentimes you can find out if your child’s laboratory studies indicate disease activity by seeing if lab abnormalities were present at their initial diagnosis. If they were, you’ll then be reassured that normal labs are indicating that the disease is in check.
The complete blood count (CBC)
The CBC is an overall test for your blood, including —
Hemoglobin and hematocrit: This measures the amount of red blood cells in the blood. Red blood cells help move oxygen through the body. The result of low red blood cell counts (i.e., anemia) includes fatigue, exhaustion, and decreased energy. More importantly, severe anemia can be life-threatening. White blood count: White blood cells help fight infection. Platelets: These are important for clotting blood.
In IBD, what do continuous abnormally low red-blood-cell counts indicate? Poor absorption of iron, bleeding in the GI tract, inflammation (as an indirect result) … all of which may indicate active disease.
Albumin levels
Albumin is a protein in the blood serum. Its purpose is to transport other molecules throughout the body. During active disease, decreased serum albumin is present in the blood because of losses in the gastrointestinal tract and decreased production in the liver. Once again, low levels indicate active disease.
Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP): measures of inflammation in the body.
ESR: This is a measure of inflammation within the body. The inflamed body makes many different types of proteins called “acute phase reactants.” During this test, red blood cells (erythrocytes) fall into a small tube. If many acute phase reactants (i.e., inflammatory proteins) are present in the blood, it takes more time for red blood cells to fall to the bottom of the tube, and therefore we know your ESR is elevated. If red blood cells fall at a normal rate, the ESR is normal.
CRP: This is a direct measure of inflammation in the body. CRP is a specific acute phase reactant and protein produced by the liver in response to infection or other inflammatory states.
The difficulty with both the ESR and CRP is that they are not specific for inflammatory bowel disease and can be elevated by other inflammatory states such as infection.
Stool calprotectin: measure of inflammation in the gastrointestinal tract
Unlike ESR and CRP, stool calprotectin is a biochemical test specifically for intestinal inflammation. With inflammation in the bowels comes an increase in white blood cells in the intestines. White blood cells make calprotectin; therefore, the stool calprotectin indirectly measures the amount of white blood cells and thus inflammation in the bowels. A handy aspect of stool calprotectin is that it tells you if the inflammation is directly in the bowels. This differs from ESR and CRP, which can be elevated if other inflammatory processes are going on outside of the bowels, such as a cold. However, the stool calprotectin levels do not differentiate between some gastrointestinal infectious and inflammatory bowel disease
The more you know, the more you will understand. The more you understand, the more comfortable you will be in asking questions. This will help ensure that you, your child, and your healthcare provider are a team. Being a team helps to get you or your child into remission. And, in the end, that is what we all want.
