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Tag: Crohn’s daily life

  • How to Stay Connected When You Have Crohn’s

    How to Stay Connected When You Have Crohn’s

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    Though Crohn’s disease comes with daily challenges, including trouble getting out and spending time with others, it’s important to strengthen existing relationships and make new ones. Keeping an active social life while managing Crohn’s symptoms may seem daunting, but it’s all about balance and communication. 

    By rethinking the way you stay connected – and leaning on your family, friends, and others in the Crohn’s community – you can still spend time with those you love and build a strong support network.

    Tips for Staying Social With Crohn’s Disease

    Flare-ups and other symptoms may make you nervous about going out, but don’t let that stop you. All it takes is a little planning. Whether you’re going to a party, attending a work event, or trying to make a new connection, here are some tips to help you feel at ease and have a good time.

    Manage Expectations

    First and foremost, remember to be patient with yourself and give yourself flexibility. 

    “I used to find myself constantly feeling guilty and wondering what other people must think of me for being flaky,” says Lauren Beach, 30, who’s lived with Crohn’s disease since she was 12. “But letting some of that go, and knowing that these things are out of your control, will help you in the long run. If the people you had to cancel plans with love you as a person, they will be understanding.”

    To help manage expectations, Alexa Federico, 28, suggests talking to your inner circle about the potential for last-minute changes in plans. When people are aware of your situation, you’ll feel less pressure about shifting plans when you don’t feel well.

    “There will be times when you need to cancel plans,” says Federico, a functional nutritional therapy practitioner who was diagnosed with Crohn’s at 12. “It’s a bummer, but always frame it that you’re doing what your body needs, and that is most important.” 

    Dating and Socializing

    When navigating social and romantic situations, you’ll have to take your Crohn’s symptoms into account, and with honesty and some preparation, you can spend time with others in a way that works for everyone.

    Plan ahead before going out. To help put your mind at ease ahead of dinner with friends or a date, you may want to look up bathroom locations before or right after you arrive at your destination. There are even some apps, such as Flush, you can download to help find restrooms. 

    Consider bringing a change of clothes and some moist wipes when you leave the house, too, if it makes sense based on your plans. If you’re going to a restaurant, check their website for a menu you can explore ahead of time.

    Don’t be afraid to suggest date ideas that work best for you, too.

    “Maybe it’s a restaurant that has food and drink you tolerate, or a non-food date,” Federico says. “Walks, shows, sports games, paint nights, or meeting in a park are great non-food dates. Pick areas you are familiar with so that there is less stress getting to the date and you know where the public bathrooms are nearby.”

    Explore day-of events. It can be difficult to RSVP to events in advance when you don’t know how you’ll feel when the date arrives. Yoga instructor Ashara Keyes, 27, who was diagnosed with Crohn’s at 15, likes to use Eventbrite and the Meetup app to find events on the days she feels up to going out. “These apps help me feel like I still have a social life without the stress of having to commit or feel bad about not attending should I not be well enough,” she says.

    Offer alternatives. You don’t always have to go out to have fun with those around you. If you’re not feeling well enough to leave the house, see if you can tweak plans. Invite people to come to you. Cook dinner together instead of going to a restaurant, for instance, or watch a movie at home instead of at a theater.

    Take time to rest. “For dating, I always make sure to get plenty of rest the day before or the day of any plans – and after, depending on the activity,” says Surakhsha Afonso, 26, who was diagnosed with Crohn’s when she was 11. Listen to your body and set aside a day to recharge if you need it.

    Share what you’re comfortable with. You may want to explain what you go through day-to-day to your close friends so they have a better understanding of your lifestyle. You can also let them know that your symptoms might keep you from going out with them all the time. 

    When it comes to dating, it’s up to you to decide when to let your date know about your Crohn’s and how much you share. You may not want to bring it up on the first few dates and instead wait until a relationship becomes more serious. Or, like Beach, you may want to be open with the person from the start. 

    “You can share as much or as little as you feel comfortable, but letting your partner in on what I consider to be a huge part of my life early on helps to navigate and eliminate what might otherwise be considered a tough conversation down the line,” she says.

    Be honest with family and loved ones. Don’t be afraid to speak up and ask for support from your partner, family members, and close loved ones. They can help you form a strong support system and are often the first people to lend a hand with ongoing challenges like flare-ups.

    “[Your family] may want to know how they can help, and I suggest asking them to check in with you, visit you at home instead of meeting out, or do FaceTime calls so you can still stay connected,” Federico says. Keyes adds that you can also let your partner help by letting them take small chores and tasks off your plate.

    When it comes to extended family, Beach suggests staying in touch with phone calls, texts, emails, and social media when you aren’t able to see them in person.

    Parenting

    Parenting is full of ups and downs anyway, and it can be even more challenging to care for your little ones while managing your health. To make sure you and your family feel supported, consider some of these habits:

    Prioritize your health. Parents, especially moms, can focus so much on taking care of the rest of the family that they forget to care for themselves. But tending to yourself first allows you to support others better in the long run. So make sure your usual Crohn’s care – medications, doctor’s appointments, blood tests – is at the top of your to-do list. 

    Plan activities for the kids. Small projects or games that keep your toddlers busy can help when you’re fatigued or in pain. You may want to keep puzzles handy, for instance, or pre-pack a box with hands-on exercises or coloring books. That way your little ones can work on something on their own whenever you need to take care of yourself.  Keyes, the mother of a 6-year-old daughter, says YouTube is also a great tool to entertain kids when you need to take care of yourself. “Do not feel guilty,” she says. “You can put on something that is educational and still entertaining.”

    Take breaks. Any parent knows this is easier said than done, but it’s even more important to manage stress and rest with Crohn’s. 

    “On the days you are struggling with symptoms, pace yourself, look after [the] baby in ‘parts,’ and put your feet up whenever you get the chance, even if it’s when [the] baby is having a bottle,” says Afonso, who’s a new mom. For instance, she suggests doing all the essentials (diapers, feedings, etc.) as needed, but bath time can wait until after you get some rest. And it’s OK to sit with the baby and read books to entertain them; you don’t have to do physical activity every time.

    Breaks can also be as simple as silencing your phone for a while or going for a short walk alone. Even if it’s just an hour to yourself, try to block off that time to take a breath and unplug a little. 

    Making New Connections

    There are plenty of ways to not only keep your relationships while you navigate Crohn’s, but to also grow your network to include people who understand what you’re going through.

    Join a support group. One way to connect with others on the same journey is to check to see whether your area has a local Crohn’s & Colitis Foundation chapter. While these groups primarily hold focused sessions to talk through challenges and share personal stories, members often put together their own social events like picnics and lunches, community volunteer days, and family outings, too. These relationships and gatherings can be particularly uplifting since you can relate to one another.

    Take advantage of digital networks. Connecting with others online can also help you build a different kind of community that helps answer questions and offers support. 

    • Check out online forums.
    • Connect with others on Instagram.
    • Join Facebook groups.
    • Download apps like Bezzy IBD to share tips, challenges, and more. 
    • Check organizations like the Crohn’s & Colitis Foundation or Hoag to find virtual support groups and peer-to-peer support programs online.

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  • How Crohn’s Disease Changed My Routines

    How Crohn’s Disease Changed My Routines

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    By Michelle Pickens, as told to Danny Bonvissuto

    As early as I can remember, I’ve had issues with my health. When I was little, I had severe constipation, nausea, vomiting, and food sensitivities.

    As I got older, those symptoms transitioned into diarrhea, irregular bowel movements, and pain. I was always very fatigued and my immune system was weak: The second someone in my class had the cold or flu, I’d get it, too. Looking back, it was a sign.

    From a mental perspective, my anxiety was high. What if I need to find a bathroom? What if I’m nauseous? Doctors would say, “Oh, you’ll grow out of it. It’s just your anxiety.”

    Finally, a Diagnosis

    After years of misdiagnosis, I was finally diagnosed with Crohn’s disease in 2015. I was 23 and had just finished up college while working full time. My symptoms were getting worse. I had a lot of vomiting and pain. The fatigue was at the point where it was difficult for me to work or even get out of bed some days.

    It was so bad it pushed me to seek additional care. I took a couple months off, looked for another job, and went through all the doctor appointments it took to get the diagnosis.

    There’s no blood test for Crohn’s. No way to prove what you’re feeling. Eventually I saw the right doctor, who did a test with a pill camera called a small bowel capsule. (This is a pill-sized camera that you swallow, allowing doctors to see inside your digestive system.) It tracked my intestines and was able to get into a blind spot where neither a colonoscopy nor endoscopy can see inflammation. 

    It was such a relief to get the diagnosis because it made me feel like I wasn’t crazy. For so many years I knew something was wrong and couldn’t name it. I also felt hopeful. Once I knew what I was dealing with, I knew I could work to get to a better place.

    Sharing My Story

    In 2016, I started a blog called Crohnically Blonde as an outlet to connect with people as I go through the stages of dealing with Crohn’s. When I first started to share, there weren’t as many people talking about it.

    I’ve been able to form relationships in an online community through shared experiences. I hope someone can see my story and feel that, if they’re at the beginning of their journey, there’s a way to get through.

    Managing My Medication

    At first, I was on a lot of medication that wasn’t working well and was a huge imposition on my schedule. Now I get infusions of an immunosuppressive drug every 7 weeks.

    It means being away from my family and job for 4-5 hours, and managing child-care coverage during the treatment and the weekend after, because I feel almost flu-like. The extra help allows me to rest and fuel back up after the treatment.

    I have the option to be on more medications to control my symptoms. But I try to shy away from those and manage it on my own because I don’t want to be on medicine for every single thing.

    Before I had my son, I was more willing to try different medications. But while I was pregnant, I could barely be on any of the Crohn’s medicines. After I had him, it didn’t make sense to be reliant on them.

    Crohn’s, Pregnancy, and Motherhood

    Crohn’s affected me throughout my pregnancy. I got very sick in my third trimester because I went off my immunosuppressive drug to avoid passing any on to the baby. I ended up having to be induced early so I could get back on the medication as soon as possible.

    My son, Maddox, is 1 now. Crohn’s changed my expectation of what I thought motherhood would be.

    I’ve learned that I’d rather be present and able to enjoy him in the good moments than push it when I’m sick. It’s been difficult. But if I’m not well, I can’t be there for my child. I try to be with him as much as I can, but there are times when I need to step back and take an hourlong nap.

    I have a great support system: My husband, mom, or mother-in-law can step in and help out for a little while, and when I feel better, I can be a better mom. There are also days when I don’t have accessible help. In those situations, I’ll do lower-key activities that I can enjoy with him but that aren’t physically demanding on me.

    Schedule and Adjust

    Right now I’m in a pretty good spot. I work from home now, as a recruiter for a tech company, and that makes a huge difference. A lot of my anxiety in the past was around being in an office and being sick. Now that I can work remotely, it’s such a game changer.

    But Crohn’s still affects my day-to-day. I have days where I’m feeling sick, and need to rest and change my plans so I’m home and not out somewhere.

    No matter how planned-out I have my day or week, if I’m not feeling well that takes precedence. I like to be a very scheduled person. But I have to roll with the punches and have a plan B.

    The biggest challenge is managing my sleep and stress. They’re both very influential in symptom flare-ups. I have to get at least 8 hours of sleep, no matter what. And I try to incorporate time to de-stress, like reading a book or relaxing at the end of the day.

    Going to therapy helps offset stress as well, and is now part of my ingrained self-care schedule.

    Social Life Strategies

    My co-workers, family, and friends are very understanding. But that wasn’t the case at first. The more open I’ve been about Crohn’s, the more people understand that I’m not flaking out if I have to change plans; there’s an underlying reason.

    I only have a certain amount of energy, so now I pick and choose. I know I need to work and be with my family, which means I have less energy to put into social situations.

    I plan out what I’m comfortable doing, but have also become comfortable with changing plans. Even if I’m excited to go out to dinner with a friend, I don’t push it if I feel terrible that day.

    Food in Flux

    I’ve followed a gluten-free diet for years. I started with an elimination diet and realized that gluten was bothering me.

    Other foods aren’t as black and white. I can eat a salad one day and it’s fine, and eat the same salad the next day and it makes me sick. I repeat the safe foods that don’t make me sick and stick to a general schedule of three meals a day that are pretty much all gluten free.

    Sometimes the timing matters: I’ll wake up and feel nauseated and need a starchy food like dry cereal. If I’m going on a road trip, or have a big event, like a wedding, I plan it out and try to be careful about what I eat leading up to it because I don’t want to be sick. But it’s hard because you never really know. It’s kind of a gamble.

    Flexibility Is Key

    I’ve learned to be as flexible as possible. I never know what each day is going to bring, I just have to trust that my body is telling what it needs for that specific day. That’s my priority, and everything else can wait.

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