Another year has come and gone and here we are nearing 2023. For most of us, the holiday season means time with family, travel, and of course, our favorite foods. From Thanksgiving to New Years Day, meals with loved ones are at the center of our lives.
For patients or caregivers with Short Bowel Syndrome, the holiday season might bring a little more anxiety and stress than comfort. Here are a few tips and tricks to reduce the additional stress and anxiety around the holiday season as you manage Short Bowel Syndrome.
Whether it’s a sit-down dinner, passable hors d’oeuvres, or tasty treats, holiday gatherings mean lots of food. For patients with Short Bowel Syndrome, it can also mean a lot more to think about as we step outside of our normal dietary routine.
With a little bit of extra temptation, it can be hard to steer yourself or your loved one away from all the extra desserts, sugary snacks, and holiday cookies. For patients with Short Bowel Syndrome, there is nothing worse than having to miss out on the fun or having to rush to the bathroom in the middle of festivities.
If you know that you are going to be tempted by all of those holiday favorites, consider smaller meals throughout the day and pace yourself. There is no rush and there will be plenty of food to go around. Eat slowly and measure what goes into your body not only on the day of the party but a couple of days in advance. By no means should you cut back on calories, but keep in mind that the food that extra cookie may affect you or your loved one differently than the rest of the gang.
For those with high food sensitivities, bring your own dish or consider asking your host to make something a bit more bland or within your typical diet. If you are unable to bring your own dish to the party, maybe take a moment and think about picking around some of the food at the table. For patients managing Short Bowel Syndrome, the slightest change in daily dietary routine can often trigger an unfortunate series of events.
Holiday food tends to be very salty and with so much going on, it can be easy to forget to hydrate. With increased output, the last thing you want to think about is spoiling the fun with dehydration. Consider electrolyte-based drinks and even try to drink a little more throughout the days and weeks prior.
Whether you need your passport to leave the country or just your wallet to head down the street to grandma’s, it’s important to plan ahead. For patients and caregivers managing Short Bowel Syndrome, travel is not only exhausting but can cause a ton of unnecessary stress.
Plan ahead and keep close eyes on both medical and personal supplies. If you are new to traveling with Short Bowel Syndrome, we encourage you to take advantage of online communities and support groups! There is tremendous power in listening to others and their family experiences with travel. It may not even hurt to see if you can find another patient or caregiver living in or visiting your destination around the same time.
Keeping a tight list of all your personal and medical belongings should ease some of those pre-travel jitters. Be sure to pack extra medical supplies, additional TPN, and even emergency or backups if needed. Small things like chargers, batteries, and even extra feeding supplies can easily slip your mind. If you are managing a pediatric patient with Short Bowel Syndrome abroad, please be sure to alert your intestinal rehabilitation clinic or clinical team to help you prepare. In addition, be sure to locate any emergency medical locations (Hospitals, clinics, etc.) at your destination.
Overall, traveling can cause a lot of stress and anxiety for any family at any time of the year. Just because you or a loved one is managing Short Bowel Syndrome, does not mean that you should miss out on all of the fun! Travel smart and have a blast! You know your body and it is important to stay hydrated and on top of any symptoms that may be a sign to keep an eye on or treat.
Family & Friends
The holiday season can mean new introductions to family and friends. For those with newborns, the holiday season may be the first time that families and loved ones get a chance to meet your new bundle of joy. If your newest addition happens to suffer from Short Bowel Syndrome, get ready for the questions, awkward stares and ridiculous comments. What is that line connected to? Do they eat by mouth? This must be so hard on you! How do you do it? My grandma’s neighbor had Crohn’s disease, I know how you feel…
Not kidding, the comments will blow your mind.
Take a deep breath and remember, they just do not understand and chances are they have nothing better to say. The best way to prepare yourself for these awkwardly uncomfortable moments is to stay calm and laugh about it later. Do your best to explain your child’s condition to the level of your comfort! If you do not feel like talking about it… don’t! There is nothing wrong with a simple, kind response that you would rather not talk about it. People will respect that and you have the right to communicate your feelings.
Just remember, your child is special in their own way. Regardless of Short Bowel Syndrome, the tubes, bags, medical supplies, and baggage attached, that little bundle of joy is exactly that… joy! Do not feel the need to hide at home or protect yourself from those awkward moments, babies spread joy and you should allow yourself to feel that as well! Enjoy yourself and if you are anything like us, you will laugh about it on the ride home!
The holidays are just around the corner and remember Short Bowel Syndrome or not, they are meant to be enjoyed! You have worked so hard, take the time to truly enjoy them!