How to Support a Loved One Living with Inflammatory Bowel Disease

If you have a family member or friend with Inflammatory Bowel Disease (IBD), it can be challenging to know how to support them best. Whether it is a new diagnosis or one that your loved one has been living with for a while, IBD usually entails some level of emotional and physical challenges that may make it hard for the individual to get through their day. Here are some tips to help you support your loved ones living with Crohn’s or Colitis to help them better cope with their symptoms and live life to the fullest.

Accepting Emotions

If someone close to you was just diagnosed, there may be many different feelings about this new diagnosis. Guilt, grief, and worry are all common feelings as this person navigates a new diagnosis and learns about how it may alter their daily life.  They may be wondering if they did something to cause their condition. They may be overwhelmed with all the different treatment options and information that they are hearing. All of these feelings are normal and it is important to be understanding towards their emotions. 

Educate Yourself

One of the best ways you can support a loved one is to learn all you can about their condition. IBD consists of two main conditions, Crohn's disease and ulcerative colitis, which are both characterized by chronic intestinal inflammation.  Although they share similar symptoms they also have some distinct differences. For example, ulcerative colitis is mainly in the lower intestines, whereas Crohn's disease can be found throughout the entire intestinal tract from the mouth to the rectum. 

Typical symptoms of IBD include abdominal pain, fatigue, and diarrhea. Symptoms may often worsen during flares making it difficult for someone with IBD to engage in many of their normal activities. Ask your loved one about their experience with IBD and how it has impacted their life so you can better understand what they have gone through. Understanding the characteristics and unpredictable nature of IBD can help you offer more support during the harder periods.

Know the difference between IBD and IBS   

Inflammatory Bowel Disease (IBD)  and Irritable Bowel Syndrome (IBS) sound like very similar conditions, however, there are some striking differences. IBD is a condition characterized by chronic life-long inflammation of the intestinal tract that could result in lasting damage and an increased risk of colon cancer. On the contrary, IBS is a collection of gastrointestinal symptoms that may be distressing but is not characterized by inflammation or damage in the intestines. IBD often requires long-term management with medication as it is a chronic condition without a known cure.  IBS symptoms can often also be improved by dietary adjustments to uncover components that may be contributing to the symptoms. An individual may have an IBD diagnosis but also experience IBS symptoms simultaneously that are not directly related to their IBD. 

It is important to keep this difference in mind when speaking to someone with IBD. Many people, including yourself, may have symptoms of IBS or experience some occasional gastrointestinal distress. Don’t equate these symptoms to your loved one living with IBD.  While you may know others with IBD, it is important to keep in mind that every case of IBD is different and everyone’s experience is unique. A specific treatment that worked for one person with IBD may not work for another.  It is not helpful to equate one person’s experience to another. 

Lend a Supportive Ear

Living with IBD can come with an emotional burden. Depression and anxiety are common among those living with a chronic illness. Showing empathy or active listening without judgment can be a great source of support for your loved one. Let them know you are available to listen to them and will offer support in whatever way they need.

Be Compassionate

Put yourself in your loved one’s shoes and imagine what it is like living with an unpredictable condition. Be understanding about canceled plans. Have patience and realize that symptoms can come on unexpectedly and without warning leaving your loved one with no choice but to change their daily plan. 

Ask How You Can Best Support Them

Ask your loved one about their experience and how IBD has impacted their lives.  Inquire often about how your loved one is doing.  They may look ok from the outside but may be experiencing some invisible symptoms and need more support. The best person to ask about how best to support them is the patient themselves. If you aren’t sure how to help, just ask them what would be best.  Sometimes, they may not know what they need, but just knowing that someone cares enough to ask is important to them. 

General Tips to Help Support Someone with IBD:

• Offer to attend a doctor’s visit with them to help take notes or just be supportive
• Help plan ahead if going to a new location with them. Locate the restrooms in case an emergency strikes or help pack an extra set of clothes or some hygiene products like wipes if needed. 
• During a flare-up, it may be hard for your loved one to complete daily tasks such as grocery shopping, laundry, or walking their dog. Offer help with errands, chores, or meal-making if you know they are having a hard day. 
• Be sensitive to their specific dietary needs. If you are planning to dine with your loved one, or are hosting them at your house, try to be accommodating and understanding about their unique dietary restrictions. 

How parents can best support their children

Being a parent of a young one diagnosed with IBD can present itself with its unique challenges. Those feelings of guilt and wondering what caused this condition can be very valid. Ensuring yourself and your child that this diagnosis was not your fault is very important for the overall mental well-being of the whole family. Some additional ways to help support your child include:

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• Support them academically by ensuring a 504 plan is in place and updated yearly.  Even if your child is in remission without symptoms, this plan ensures they will have the support they need to succeed in school when a flare or an unpredictable event occurs. 
• Support them socially by encouraging them to talk to their friends about their condition. Having their peers understand their diagnosis will help them feel more comfortable if they need to change plans or are not able to participate in eating a particular food at an event. 
• Support them mentally by discussing with their doctor whether seeing a mental health provider would be of benefit to your child. 
• Help your child connect with other children with a similar diagnosis so they know they are not alone in what they are experiencing. 
• Find a role model, such as a celebrity or a sports figure, who is also living with IBD to show your child that living a normal life is very possible. 

Take care of yourself

Lastly, if you are a direct caregiver, make sure you are taking care of yourself. You can find support through a caregiver or support group. Don’t neglect your needs as it is critical for you to maintain a healthy balance in your life to help better support your loved one when they need you the most.

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