IBD | Information | Ostomy
With some holidays having passed us by and some still on the horizon, this time of year can be a weird combination of joy, stress, anxiety, and love for us IBD and ostomy chicas.
We were very lucky to have Shawn Bethea (@shawnbethea_), a lifestyle and wellness blogger who lives with IBD, and Sara Ringer (@Sara_Ringer), founder of Intamed & Inflamed. join us on Sunday’s Twitter chat about how families, relationships, the holidays, and IBD affect each other this time of year!
Which gifts (tangible or not) are the best you have received?
Gifts are always a very personal thing, but there are certainly some IBD themed presents that are often appreciated! A great heating pad, nice epsom salts, coloring books/activity books, and colon-themed stuffed animals are always fan favorites! Sometimes, though, the best gift we can receive is understanding, compassion, a break from the schedule, and unconditional love from our loved ones.
Has your IBD or ostomy affected the way you interact with the people around you during the holidays?
Chronic illness has a special ability to empower us. A lot of women through their IBD have become more vocal, bigger advocates, and more open with others. On the flip side, a lot of us (like myself), prefer to keep our diseases to ourselves and focus on other aspects of our lives. If including details about your disease makes you uncomfortable, remind others there is more to you than your colon (or lack there of)!
How have you dealt with having to cancel plans due to symptoms popping up?
Shawn has had to leave a lot of events early. While she hopes people are understanding, she doesn’t give them a chance not to be. She says, “I have to do what’s best for me. I can’t ask for permission.”
How do you deal with the guilt that comes with canceling plans or leaving an event early?
Sara has had feelings of guilt because of her chronic illness in general, not necessarily just during the holidays. Communication is crucial for addressing important issues. If I have feelings of guilt, I express that to the people I wasn’t able to spend time with.
Do you find it difficult to set boundaries regarding dietary restrictions with family and friends?
Sara is on TPN, so that immediately requires some explaining. She finds that the longer you live with your illness, the better you become about approaching things like eating restrictions. @CrzyCreoleMommy brings her own food! She compliments people’s cooking while letting them know that her picking at her food is strictly due to her disease.
How do you handle the personal and prying questions about your life and health from friends or relatives that you don’t interact with often?
@CrohnieBologna says she is direct when addressing these questions. If you are not comfortable discussing certain topics, stand your ground!
Gift giving on a chronically ill budget: how do you manage?
Sara’s advice here is amazing: Gifts do not = amount of love. This is so important to remember! Homemade gifts such as jams, vanilla extracts, personalized pillows, as suggested by @smlhughes, and such are great options and have so much more meaning behind them.
How do you keep yourself and your body honest when it comes to eating, drinking, and/or indulging during this time of year?
IBD is such a personalized disease. Sara reminds us that a bad decision for one of us might not be a bad decision for another. If you are feeling adventurous with food or alcohol, just take it slow and be careful! Extra supplies, change of clothes, meds, etc, will be great things to have in your arsenal!
How do you manage your mental health during this time of year? Are you comfortable discussing your mental health with your friends and family?
One of the most important things to remember here is that there is no manual when it comes to mental health. Caring for yourself properly requires adjustments and re-evaluations, and including your friends and family in this can be very difficult. Sometimes writing your needs and concerns out on paper or in email and sharing with your loved ones that way eases some of the discomfort.
Have you discussed your physical needs with your friends and family? How did they respond?
@CrzyCreoleMommy reminds us that true friends will understand that we all have different needs. Surround yourselves with people who don’t make your life harder when it comes to your illness!
If you are an IBD or ostomy veteran, what advice do you have for our community of newly diagnosed ladies when talking to their loved ones about IBD for the first time this holiday season?
Shawn reminds us to take your time and be patient with yourself and others. There were times where you didn’t understand your diagnosis, your family and friends are likely still in that place. Sara also reminds us that this gets easier with time. Putting pressure on yourself to be perfect and your loved ones to react perfectly won’t end positively. Remember that we can’t control other’s reactions. They won’t always be supportive and comforting, and we have to accept that these types of responses are a reality for a lot of us. @smanna750’s recommendation is to always be educated about your illness! The more you know, the better you can communicate the details with others!
How do we make self care a priority during the holidays, whether we are celebrating in a large group or on our own?
A change of clothes can make an enormous difference! Get the dressed up family photos in your pretty outfit, and then go change and be comfy! Try starting a new “holiday pajama” party, you definitely won’t be the only one there who isn’t wanting to wear their slacks!
Thank you again to Shawn and Sara for their wonderful contributions to our Twitter chat, and our community in general! Warmest wishes to all of our beloved GWGs during this holiday season!
Casey Flancbaum was diagnosed with ulcerative colitis at 22, which ultimately was changed to a diagnosis of Crohn’s disease the next year. She found the GWG organization and forum during a late night search for a support group geared towards women and is so grateful for the online community that she is now a part of!
Casey holds degrees in Music Performance from the Crane School of Music and University of North Texas, and is currently an active performer and teacher in the DFW area. In her free time, Casey loves to cook, garden, and spend time with her amazing husband, Samson, and three adorable fur kids, Jackson, Roxy, and Roscoe!