Happy day 2 of IBD Awareness Week! The physical symptoms of Crohn’s and colitis can be debilitating, but many patients are more affected by the emotional aspects of chronic disease. These emotional effects are not limited to IBD, but also to any chronic physical or mental illness.
The Emotional Side of IBD
Fatigue is a major issue that most IBD patients deal with on a daily basis. This fatigue makes it difficult for these patients to make it through the school or work day, take care of their families, and take care of themselves. It may be difficult for these patients to muster the energy to go out with friends, especially after a long day.
Additionally, food and drink are often the center of social gatherings. Many foods and alcohol trigger symptoms in IBD patients. Some patients choose not to eat at social events or they bring their own safe foods to avoid suffering the consequences. What some people may not realize is that sometimes even “safe” foods trigger symptoms. These symptom flare-ups can come out of nowhere and last for hours, days, weeks, or more.
Younger IBD patients (high school – post college) often miss out on social events with their friends due to symptom exacerbations. We may fully intend on going somewhere but suddenly feel unwell and miss out on the activities. Missing out truly hurts, especially when we know all our friends are having fun together, while we are at home in our beds with a heating pad. We want nothing more to be “normal,” have the energy of a typical 20-something year old, and not pay for our actions for days after going out.
Personally, I struggle with going out and keeping up in medical school. Not sleeping enough one day affects me for multiple days, which is tough when I need to be productive studying. Restaurant food almost always bothers me, and I have to be very careful about drinking alcohol. I also tend to catch viruses and other bugs in crowded bars, especially in the winter, which makes staying well and studying very difficult.
Tips on Being Social with IBD:
- Call the restaurant about menu options/safe foods, eat before the event, or bring your own safe foods
- Don’t feel obligated to drink alcohol or eat foods that may bother you, especially if you are not feeling well
- Always give yourself an out. Drive yourself to an event in case you need to leave early.
- Scout out all the bathrooms
- Definitely go out when you can, but take care of yourself if you are struggling
- If you do not feel up to staying out late, just go to the pregame, attend the event for a little, or make an effort to hang with your friends earlier in the day
Long term physical and emotional pain may lead to mental health problems in certain patients. Other patients may have struggled emotionally before their diagnosis of IBD. These emotional conditions include but are not limited to anxiety, depression, and PTSD. It’s completely normal to grieve your life before IBD and feel sad about your illness. It’s okay to feel sad one day, but the next, it’s important to practice your self-care, reflect, and do something to improve your health/outlook on life. This includes talking to your medical providers about better managing your symptoms and improving your quality of life.
Tips on Staying Well Mentally:
- Talk to a counselor – there is no shame in seeing a psychiatrist, therapist, or any licensed mental health provider, even if you do not have a diagnosed emotional problem
- Keep in contact with your PCP, GI, and other medical providers about managing your symptoms and improving your quality of life
- Exercise (even if it’s a short walk)
- Eat a balanced diet (fruits, veggies, protein, fats & good carbs)
- Strengthen your relationships
- Do something every day that you love
- Laugh every single day
Relationships can be very difficult with IBD, as IBD is not a sexy disease. Fatigue, surgeries, hospitalizations, medication side effects, and illness in general interfere with intimacy. Some IBD patients with ileostomy/colostomy bags struggle with intimacy due to their changing bodies, while others say the bags have given much of their health back, including maintaining intimate relationships. This highly depends on the person and his/her comfort levels.
Food is a major trigger for many of us. It’s embarrassing to eat something, then suddenly have to run to the bathroom or spend the next few hours curled up in the fetal position. Your significant other should understand your limitations and support you if you are struggling. If he/she is not understanding about your illness, then it may be time to re-evaluate your relationship. Unless your significant other has IBD or another chronic disease, he/she will never truly know what you are going through, but the “right” partner will attempt to understand.
Tips on Maintaining Relationships with IBD:
- Educate your partner about your disease
- Be honest with your partner: if you do not feel well, do not push yourself to do anything in which you are not comfortable
- Go on dates that do not involve food
- Join a support group and/or talk to others about how they live with IBD and maintain their relationships
- Be confident
Biggest Tips on Staying Emotionally Well
- Manage your physical symptoms
- Eat well
- Practice self-care
- SLEEP & let yourself rest
- Manage your stress
- Prepare when going out (bring your own foods, scout out the bathrooms, and give yourself a way out in case of emergency)
- Talk to a counselor
- Strengthen your relationships (intimate, family & friends)
- Seek support
How does your IBD affect you emotionally, and what do you do to stay well?