A close-up of a person's contorted face with an overwhelmed and exasperated expression. Their hands are on the sides of their forehead. Almost invisible in front of them is a clouded and foggy colon.

Managing Invisible Aspects of Inflammatory Bowel Disease

Last updated: October 2022

There is a lot to learn when it comes to managing inflammatory bowel disease (IBD). I often remind my patients that their emotional health is just as important as their physical health.

Crohn's and colitis go beyond the bathroom

With that comes open conversations about many aspects of the disease that can’t be seen by the eye. Not unlike other diseases with invisible components, many GI conditions cause symptoms far outside the bathroom. Often with chronic illness, symptoms of chronic fatigue, migraines, depression, anxiety, chronic pain, and more are dealt with in silence.

Comments can sting

“You don’t look sick.”

“You must be doing well, you look great!”

Perhaps you can relate. Someone makes such a comment when you are actually feeling pretty crummy. With chronic illness, you don’t know exactly how you will feel each day. For instance, you may be up throughout the night with GI distress, followed by a morning of nausea and pain but make it to work and do a great job. You arrive home from work, skip dinner, and are in bed by 7 p.m. due to severe fatigue.

If a friend asks you to go to happy hour later in the week and you reply that you just aren’t up for it, that's when it happens... The disappointed look on their face that can make you feel worse. It’s likely that due to visible and invisible aspects of your IBD, and you have missed out before.

Navigating invisible illness

Often, those in your life may have no idea just how much energy and intention it took for you to get through your day or week. The complexities of invisible illnesses can be made better when you assess what your needs are.

Sometimes it requires a conversation with your loved ones to highlight just what you are currently experiencing. Perhaps you aren’t up for going out, but you may be able to have a friend come to your house for a more relaxing evening in.

Here are some suggestions for navigating your needs:

Ask for help from loved ones

Don’t expect that your friends and loved ones know all that you are going through or what your needs are. Be honest about what you are experiencing and how it impacts your day-to-day functioning. By having an open conversation with a loved one, they may be able to offer help. That help may be something tangible, like grocery shopping, cooking, cleaning, or yard work. Or, it could be emotional support like offering kind words, listening, or maybe providing some quiet space.

Talk to your doctor about ALL symptoms

Speak to your physician about all of the symptoms you are experiencing, even if you don’t think they have anything to do with your IBD. There may be labs your doctor can run to assess whether a supplement or medication can aid with symptoms of fatigue, low energy, or pain. If you are suffering with emotional symptoms, such as depression or anxiety, working with a health psychologist can aid with giving you tools to better manage or alleviate those symptoms.

Know that your IBD can change at any time

Remember that how you are feeling at any given time can change. You may be going through a difficult flare or perhaps you are in remission and still struggling with ongoing symptoms. Keep in contact with your support system and assess whether you have all the team members in place that can help!

Key players on your Crohn's or colitis care team

Have you medical team in place, and reach out to them for support. That's what they are there for.

  • Gastroenterologist– to address the medical complexities of your disease
  • IBD nurse – to address questions and symptoms that arise
  • Primary care physician – to address other medical symptoms outside of your GI condition
  • Mental health professional – to address emotional health and psychological symptoms (click here to search for a gastropsych professional in your area)
  • Dietitian – to address nutrition
  • Physical therapist – to address physical functioning and pain management

Other important support

Outside your healthcare team, find support within the IBD community and people in your life.

  • Friends and family – to provide additional caregiving and emotional support
  • Work colleagues – share only what you feel comfortable sharing and if needed, speak with your human resources professional to know your rights at work

Having an informed support network

It is not your job to educate everyone in your life on the visible and invisible aspects of your experience with IBD. However, it can be beneficial to your well-being to invite those closest to you to learn more about it.

Invite them to read content on this website, attend a local patient advocacy group or educational event sponsored by the Crohn’s and Colitis Foundation or a medical center that specializes in IBD care.

Managing all aspects of your IBD can be easier when you feel fully supported!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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