IBD mom offers up 5 tips for productively working from home

Twenty years ago, Katy Love, was diagnosed with Crohn’s Disease. She was a sophomore in college. She could barely make it out of bed some days, due to the enormous amount of pain and overwhelming fatigue. After her diagnosis and subsequent surgeries, she wondered if she’d ever be able to have a “real job” – like many of us in the chronic illness community, she worried about how she would be able to work and manage her illness. Katy didn’t allow her diagnosis to prevent her from following her personal or professional dreams. Now as an IBD mom, running her own PR business from home, in the middle of a pandemic, she has some advice to share about being successful in the face of adversity. Boulder_Headshots_043

After graduating from college, I took a job at an interactive advertising agency. My dream job. Then, reality set in. I needed to ask for accommodations for my Crohn’s disease– I had to ask for a flexible schedule – one where I could work from home when needed.

I was elated when the agency agreed. Since then, I’ve been blessed to work with several teams (for other companies) that understood my illness and trusted me to work remotely when needed. As someone who has worked from home quite often during my career, due to a chronic illness, I’ve learned a few helpful best practices that have helped save me time… and my sanity.

Create a realistic routine and office hours. If you know you can’t start working until 9 a.m., due to family obligations, don’t start your work time until 9 a.m. Then, plan accordingly for your end time each day. Be sure to share your office hours with your family and colleagues. It’s important for everyone to know when you’re working. Also be patient with your new schedule. As with all new things, it will take some time to become a true routine. This is all new territory – working from home is a normal occurrence for me, however, having all my children and my spouse at home, while trying to work from home, is a new challenge.

Get Dressed. Every single day. I know this may sound silly, as you haven’t left the house in weeks. But I find this extremely important. It sets the tone for the day. When you look the part, you’re much more likely to feel the part. Plus, with all the Zoom calls, you want to look like you aren’t wearing yesterday’s PJs for the weekly team meeting.

Establish a defined workspace. You need an area where you know – this is my desk, my work zone. Your family members know that when you are there, you are working. Working from bed sounds delightful…I love my bed. However, it’s easy to be distracted if you’re not in a specific workspace. IMG_0846Also, surround your workspace with all that you may need during the day. Computer, chargers, phone, etc. I like to also put candles or fresh flowers near my workspace – they smell great and elevate my mood. With spring finally here, go outside and pick a few flowers and put them in a mason jar. Anything that makes you smile and motivates you.

Communication is KEY. I learned this early on in my career. Just because you’re not in physical sight of your team, and your employer, you want them to know you’re ON and working. The worst thing you can do is go dark. If they don’t see you, hear from you, it’s easy to assume you aren’t taking working from home seriously. So, over-communicate with your team during this time.

Take breaks throughout the day. When you’re setting up your new routine/office hours, schedule breaks into the day. Personally, I like to work out in the mornings. So, finding 30 minutes to hop on my bike sets my day up for success. In the afternoon, take a walk outside, or bake with your kids. Katy_Vince_Family_138It’s extremely important to incorporate self-care into your routine right now. There’s so much uncertainty and doom/gloom in the news. Make sure you are taking time to appreciate yourself, your team, and your family, while keeping your health as a top a priority.

 

“My mom has Crohn’s and I do, too”: Why Sam doesn’t allow IBD to take over her life

Motherhood provides perspective. Motherhood shapes us in a way we didn’t know possible. When you’re a mom with IBD, your past and current struggles make you look onward to the future in a different way. Meet Sam Zachrich. _ADP6012She’s a 30-year-old mom and wife from Utah, who works full-time outside the home. She’s battled Crohn’s disease since December 2011.  

Even though she was officially diagnosed a week before her wedding (imagine that!), Crohn’s is something that was a part of her life long before that. Her mom, also has the disease. This week–Sam shares her experience taking on motherhood and marriage, while juggling everything that comes along with a life of chronic illness.

Like someone with a bad knee before a rainstorm. I knew I was not feeling well and the results of my colonoscopy would reflect that. More medication and more doctors is all I heard from my GI. My husband Nate will tell you a different story. He is always my biggest supporter and remembers way more than I do after waking up from a scope. He heard “Sam things look better… your colon is healing… but there are some issues.” All I heard was “issues”. As a Crohnie, it’s easy to focus on the negative of our disease. It’s easy to forget to celebrate how far we’ve come and the milestones we’ve accomplished throughout our journey.

Growing up with a parent who has IBD

I knew my mom had Crohn’s from an early age, but I didn’t fully understand how much pain and hardship it caused her, until I was in college. I had a wonderful childhood, filled with amazing memories. I don’t remember my mom being sick very often. There were hospital visits here and there, I just always had faith that she would get better.

48397243_10213280363469781_8737081387036704768_oMy mom did an amazing job making sure our lives did not revolve around her disease. She did her best to stay healthy and support us. I want my daughter to have the same experience as I had growing up. I don’t want her to ever feel the burden of my disease. I want her to know that no matter how difficult life gets, there is always hope. My mom is the one person I can call who fully understands my struggles. To have another family member that has and is dealing with the same chronic health issues is a huge support. I am very grateful for her.

A mother’s love

My mom was with me for every scope and doctors appointment leading up to my diagnosis of Crohn’s. She was a shoulder to cry on and a listening ear because she completely understood. Feeling guilty is not something we do easily in our family. We try to stay the course and figure out next steps. I think to some degree she had guilt, but she wanted me to stay strong and knew I would be alright. She has always told me to focus on what I can change in the moment.

To this day, she reminds me: Crohn’s will always be apart of your life, it’s what you do with it that matters. 405889_2533476622399_548286302_n

I try not to focus on passing this disease to a third generation. I know that one day I might be in the doctor’s office with my daughter listening to the same talk I received December 2011. Hopefully we will never have to go there, but if we do, I know that the support and perspective that I’ll be able to provide my daughter can make or break a diagnosis.

In sickness and in health, literally

My husband, Nate, was there from the start of my Crohn’s journey. samI remember explaining to him at one point that this disease would be something I will deal with my whole life and it was okay for him to leave me. It’s really hard to put my relationship with my husband into words. When it comes to Crohn’s, the thought of all he does to support me, makes me tear up. He knew that after our wedding day he would take my mom’s place at all my appointments and be my sole caregiver. Nate never shied away from the challenge and it makes me love him more and more everyday. He is my number one and having support from him means the world to me.

Despite receiving the IBD diagnosis a week before getting married, our wedding day was amazing! I look back and don’t remember being sick (thanks to the steroids!). Throughout our lives there will be days we get to be “normal” and we try to embrace those times as a couple and as a family. Don’t allow for this disease to control all aspects of your life. Have that amazing wedding and find a spouse who loves you regardless of your illness. You deserve that and so much more!

Finding peace through support and letting go

Fast forward to this month. Following my scope, I had surgery to remove an abscess. My husband and I had planned a date night for that evening and already had a sitter. We traded our dinner and play tickets in for a night out at the hospital. This was my second surgery to remove an abscess. It doesn’t get any easier, but I have a different mindset now that I am a mom.  _ADP6466

It’s always hard to leave our daughter Kamryn. We are very blessed to have an amazing support system that we can rely on. It’s so helpful to know that when you are going through a medical procedure, the person taking care of your child loves them as much as you do.  We do not have any biological family in Utah. However, we have an amazing church family that really loves and takes care of us just as well.

My advice to fellow IBD parents is to find peace in knowing that your child will understand one day how much sacrifice you have made to fight this disease. There will come a day when they will ask you questions and you can share your experiences with them.  

I am healing well and my doctors are monitoring things to make sure my Crohn’s stays under control. I have had routine blood work since the surgery and it looks like I will be going in for an MRI this week to check on my liver. While these unexpected twists and turns in my patient journey don’t get easier, I’ve learned not to focus on what I can’t control.

The bright spot of my journey

I was blessed to be able to have a baby girl in January. After so many years of hating my body and being sick, my body finally showed me what it’s capable of. I know that my journey with Crohn’s has made me the best mom possible for my sweet Kamryn. Even though my body may be riddled with illness, it was still able to create a perfect miracle. sAM

I have learned to deal with life in a completely unorthodox way, because of my disease. I am a better mom, wife, daughter, sister, coworker, employee, and friend. Don’t get me wrong, there are days I wonder ‘God, why me, why this disease?’ But I know deep down I am stronger for it and He will see me through the tough times and setbacks. As someone who grew up with an IBD mom, it’s my hope Kamryn will someday look at me the same way I look at my mom.

 

Why you shouldn’t put ‘self-heal’ and Crohn’s in the same sentence

This article was written earlier this month, while getting my hair done. 

I hear her cry. I glance at the clock that reads 4:55 a.m. I clutch my abdomen. The pain I went to bed with hours earlier is amplified. IMG_4409It feels like a fiery pain inside my rib cage that travels all the way down my stomach. The gnawing makes me feel raw internally and externally. I put my glasses on and as I’m standing up and rocking my daughter in her nursery, I try to think of her warm little body as a heating pad.

I wrestle with my thoughts about how to handle my pain. Last time I took pain medication I couldn’t breastfeed my daughter for 20 hours. I decide to take one 600 mg ibuprofen left over from my C-section recovery, with the understanding that as someone with IBD I shouldn’t be taking that. But I’m desperate. Desperate to get a reprieve from the pain and the inner monologue racing in my head as I lay back down. While at the same time, trying to keep my painful moans quiet so I don’t wake my husband.

I wake up and the pain is still there, but I have no choice but to take on the day. Thanks to my mom being in town, I’m able to head to the hair salon for a much needed hair cut and color. The stylist asks me questions and my Crohn’s comes up fairly quickly in the conversation. Her response—“one of my best friends has Crohn’s and she’s completely self-healed herself by eating very strictly”. She goes on to say her godmother has Crohn’s, too—and constantly posts pics on social media eating and drinking, so it’s no wonder she struggles, acting almost disgusted by her godmother’s lifestyle and patient journey.

I bite my tongue. The pain from the night before and the worries weighing heavily on my mind and heart are still fresh. Self-healing and Crohn’s, if only it were that easy, that simplistic. But I don’t have the energy to get into that discussion. IMG-3099The fact that so many people without IBD are under the assumption that our pain and symptoms are self- imposed upsets me. We already beat ourselves up mentally as it is. My husband and I took our son for ice cream last night, so immediately I wonder if all of my pain is a result of the choice to have ice cream with my 2-year-old.

As a mom who’s battled Crohn’s for nearly 14 years, the background noise and ignorant comments about IBD tend to bounce off me. I have thick skin, now. But, it’s worrisome at the same time. What if the girl getting her hair done wasn’t me? What if she was newly diagnosed and struggling? What if she chose to go off all medications and “self-heal” because someone cutting her hair told her it was possible? This is what we’re up against as patients. Everyone tries to relate and thinks they are offering “words of wisdom” or assurance, when really they’re just contributing to the hurt and feelings of being less than. IMG-4410

Luckily, I’m not that girl. But—if you’re reading this, know that your patient journey is unique to you. What works for one person, will not necessarily work for you. Needing medication to manage symptoms and keep your disease from progressing is not a sign of laziness or weakness. You need to take the steps necessary to improve your quality of life and overall health. Living with IBD is not black and white. There is so much gray area. Trust in your physician. Trust in the support available both online and in your community from fellow patients. Be patient in discovering what works for you, be flexible, and do what you need to do to self-heal.

The IBD Parenthood Project: A Guiding Light for Family Planning

This post is sponsored by the American Gastroenterological Association (AGA). I am a paid program Brand Influencer; this post is sponsored and includes my own personal experiences.

When I was diagnosed with Crohn’s disease at age 21, finding out I had a chronic illness put my hopes and dreams on hold. I could barely think of the next day, let alone daydream about the future and the family I would one day hope to have. As the years went on, having a family was on my radar. I knew I wanted children, but wasn’t sure if my body already riddled with a chronic illness would be able to make that possible.IMG_6037

I had so many questions, so many worries. I wasn’t sure where to turn for accurate information. Advice from doctors tended to be conflicting. The internet was/is, well…the internet. I yearned for truthful, evidence-based information that would comfort me and guide me as I started my journey to motherhood.

The IBD Parenthood Project is just that. Rather than feeling like you’re wearing a blindfold and hoping for the best, moms-to-be in the IBD community can now feel at ease by having resources and a patient toolkit that answers all of those questions, and serves as a roadmap for family planning—from preconception to taking your baby home from the hospital and postnatal care.

IMG_6370One of the most helpful pieces of the toolkit is the FAQ, related to IBD and pregnancy. If I had this information readily available and at my fingertips prior to my previous pregnancies, I would have known about the importance of seeking care from a maternal-fetal-medicine (MFM) subspecialist at the start of my pregnancy. While I saw a high-risk OB, a “regular” OB and my gastroenterologist throughout my pregnancies, I wasn’t aware of what an MFM subspecialist was, or their role throughout pregnancy. After checking out the IBD Parenthood Project website, I found out there was an MFM subspecialist in my doctor’s practice, but I was never under his care. Moving forward, if I were to get pregnant again, I would want my care team to include him

The information in the FAQ about breastfeeding and medications is also extremely helpful. I felt a bit in the dark when I was pregnant with my son in 2016. I was nervous about breastfeeding while on a biologic. In the past two years, I’ve learned more and been able to educate myself on the benefits and the precautions associated with it. Now, my second child has been exclusively breastfed the first eight weeks of her life, despite my biologic injection, and I’ve been able to see how the benefits of breastfeeding far outweigh the risks for me and my family. It is resources like the IBD Parenthood Project that have helped guide my decisions. 09-untitled-9103

A common question I am often asked is “how likely it is for my son and daughter to have IBD in the future?” It’s a thought I hate to think about, but it’s always in the back of my mind. According to the IBD Parenthood Project and its Clinical Care Pathway recommendations, “up to 3% of children with one parent who has IBD will develop the disease (this means about 97% will not get IBD). If both parents have IBD, a child’s risk may be as high as 30 percent.” To me—since my husband does not have IBD, these odds are SO reassuring. While there’s a chance it can happen, it’s a reminder that IBD patients should not hold off on having a family out of fear of passing along the disease.

As a patient advocate and IBD mom, I hear from women around the world with questions relating to pregnancy, motherhood and life with Crohn’s.

The IBD Parenthood Project provides so many helpful tools. Whether it’s the IBD Checklist of Questions to ask your care team, the Myths vs. Facts Fact Sheet, or the After You Deliver Fact Sheet, The IBD Parenthood Project covers it all. From now on, women with IBD never need to feel alone as they take on their most important role of all—being a mom.

For more information, you can access more helpful resources by visiting: https://goo.gl/UY5r5r.

Navigating IBD & Pregnancy: Difficulty deciphering aches and pains

Pregnancy is a magical miracle. You witness the creation of life within yourself and see your body transform in ways you never knew possible. When you live with a chronic illness like Crohn’s disease and experience a pregnancy, there are added layers. A layer of worry. A layer of concern. A layer of wonder. When you have a chronic illness that can flare up at any given moment—it’s one thing to have the ticking time bomb feeling when it’s just you…it’s entirely different when you have a family to care for and a baby in your belly.

IMG_3453This Friday, I’ll be 27 weeks complete with my baby girl. My January due date is quickly approaching. Time is going both fast and slow. For the most part, my Crohn’s has behaved itself. But, there have been multiple times where I can’t seem to decipher if what I’m feeling is related to pregnancy aches and pains or my IBD. The burning and gnawing feeling in my abdomen often feels so reminiscent of the beginning of a bowel obstruction that I can’t help but fear the worst.

With my son, Reid, I was lucky enough to never have a contraction, never dilate or efface and went into my scheduled c-section without having any pain. This time around, I’m not so sure things will go as smoothly. How are we supposed to determine the difference between round ligament pain and Crohn’s? What about a contraction and Crohn’s? So many IBD mamas who have gone through a flare and labor say the pain is very similar, if not worse than delivering a child. Yeah. Take that in for a second.

Even after more than 13 years of living with Crohn’s, I feel like a fish out of water at times with this pregnancy. It’s as if I’m relearning my body and the relationship I have with IBD all over again. IMG_3451It’s difficult because every single pregnancy is different and so is every single person’s IBD. My OB tells me that with a contraction the pain will come and go, and I’ll be able to see a pattern and time it, whereas Crohn’s pain will be constant.

I’ve noticed a few times in the last week that the pain will exacerbate if I eat something while my abdomen is burning. To me—that would be more Crohn’s, than pregnancy. I know I can’t be the only chronic illness mom who feels challenged by pregnancy symptoms and disease symptoms.

All of this is happening now, then there’s the looming fear of the all too common postpartum flare. I was nervous after my firstborn and have luckily stayed out of the hospital his entire life (he’s 18 months!), but this time could be different. You just never know when the disease is going to rear its ugly head.

IMG_3452My advice to myself and to all of you who may be dealing with these same fears and thoughts is to listen to your body. Be mindful of when you hurt, why you may be in pain and how often it’s taking place. Don’t turn a blind eye to your aches and don’t feel like a bother to your GI or OB. Reach out to your healthcare team and alert them when you have a concern, so they are aware of what’s going on. This is not a time to internalize your pain. This is a time to be vocal, be your own best advocate and start being the strong IBD mama that you are for your unborn child.