IBD Motherhood Unplugged: “I have IBD and so does my Mom”

In the spirit of Mother’s Day—today’s article celebrates mother and daughter duos with IBD. Rather than focusing on the hereditary factor of Crohn’s and ulcerative colitis, this story celebrates the camaraderie, bond, and connection created when a parent and child both share the same disease. While the chance of passing on IBD when one parent has Crohn’s and ulcerative is relatively low according to the Crohn’s and Colitis Foundation (between 5% and 20% of people with IBD have a first-degree relative, such as a parent, child, or sibling who has one of the disease), it happens. My hope is that if you dream of being a mom or a dad, you don’t rob yourself of going after that dream because of the fear of passing on your disease to offspring.

As a mom of two (soon to be three!), I am the only one with IBD in my entire extended family. But, I often worry and wonder if my Crohn’s will be passed on to my children. I know this is a common fear many in the community grapple with. Check out these thought-provoking and comforting firsthand accounts from 8 mother-daughter duos that show how families unite in their diagnosis and lift one another up.

Corri Gardner and her mom both have ulcerative colitis. Her mother’s father also had UC. Corri’s mom was diagnosed with IBD while she was pregnant with her. All she knows since being diagnosed herself is having her mom and grandpa to confide in through the ups and downs of the disease.

“My mom has always been there to validate my fears and feelings on such a deep level since she knows exactly what I’m going through. When I was diagnosed, she expressed how guilty she felt over and over again. I always assure her that I would much rather be on this earth, living with UC, than to not be here at all. If someone is hesitant about having children due to their IBD, I would urge them to not make life decisions based on fear.”

Camryn Asham and her mom both have Crohn’s. She says having a parent with IBD helped her feel less lonely and more understood when she was diagnosed. Like anyone with a chronic illness she’s gone through a range of emotions on her patient journey—everything from anger to grief.

“I’ve had the “why me” feeling, but deep down I know it’s not my mom’s fault and there is no one to blame. I know my mom has felt guilty watching me go through traumatic moments and all the ups and downs. I’ve been able to witness my mom get through the highs and lows of IBD, and that reassures me I can get through any flare up or procedure, too. I know I can always count on my mom for help and support when I don’t feel heard or understood.”

Rachel Martin and her mom both have Crohn’s disease. Her mom was diagnosed at age 14, she found out she had the same disease when she was 22. While the diagnosis was devastating for both, Rachel says she finds comfort in knowing that she has someone close to her who can relate.

“I do feel as though my mom feels guilty for passing Crohn’s. I have a twin sister who does not have Crohn’s and it has been hard seeing her live her life without going through everything that I have gone through. Never in my life would I wish this upon anyone, especially my sister, however I wish that I never had to go through this. I never exactly blamed my mom, but I have spent a lot of time wishing I “lucked out” like my sister did. I know that my mom feels bad that I have had a really hard time coping and accepting that I also have a chronic disease.”

Diagnosed prior to a parent

Mary Catherine Kirchgraber was diagnosed with Crohn’s when she was 10 in 2000. Her mom was diagnosed during a routine colonoscopy when she was 50-year-old in 2013. Since her mom served as her caregiver and advocate since she was a pediatric patient, it’s made for a unique journey and perspective. They both seek medical care through the same GI practice and have been on the same medications. Mary says it’s nice to have someone to commiserate with about frustrations with insurance, feeling poorly, side effects, and more.

“My mom is the toughest person I know and never complains, so she inspires me in a million different ways. I wish she didn’t have to struggle the way I have, but it’s nice to have someone to lean on and ask questions to. My mom has always been my advocate and greatest support. She fought for accommodations at school, taken me to Mayo Clinic, dealt with insurance, and taken me to every doctor appointment and specialist I’ve ever needed. She created binders of medical records for me and often reminds me of my own health history when I don’t remember things from when I was a kid. I am so lucky to have her on my team.”

Sharan Kaur was diagnosed with Crohn’s in 2002, her mom found out she had ulcerative colitis in 2017. She says prior to her mom’s diagnosis she felt alone dealing with the day to day struggles of IBD. Sharan says because of her knowledge and experience living with IBD, when her mom began to experience symptoms, she was able to push for their general practitioner to take action immediately and reach a diagnosis. She is grateful to have another family member who can grasp the severity of the disease and who understands how easy it is to go from feeling perfectly fine one day, to barely managing to get out of bed the next.

“I think we find strength in one another. For years, my mom supported me through my worst days and although she didn’t completely understand how things were before her diagnosis, the support was always there. Finding out she had UC broke my heart because she’s always been so active, truly a supermom. I realized then that this would have to change for her as she would probably go onto face the same daily struggles that I do with fatigue. As an adult I’m sure this change in lifestyle is much harder to accept than it was for me.”

Mary McCarthy was also diagnosed with Crohn’s at age 12 in 1995, her mom didn’t discover she had Crohn’s until 2015 when she was 62 (and her dad has UC!). IBD was foreign to the McCarthy family when Mary was diagnosed though. She says her mom had a difficult time coping with having a child with a chronic illness. Even though her mom was well-versed on IBD by the time of her own diagnosis, hearing the news was still difficult for her.

“We deal with it mostly through empathy and humor. Being able to talk openly about the emotional and physical aspects of the disease helps. My parents and I joke about how we are colonoscopy experts and have seen every gastroenterologist in the city of Chicago. My mom knows exactly what I need before colonoscopies, which is often to get some alone time and get in the zone. We laugh about it now. “Mom, I love you, but I gotta get in zone. You can wait in the waiting room now.” My mom has been there for ALL important moments in my IBD journey. We sometimes reminisce about the complete chaos we went through when I was 12. We may have IBD, but we know life must go on.”

Michelle Schienle and her mom were both diagnosed with Crohn’s in 2015, she was 23 her mom was 52. Michelle’s diagnosis was the catalyst for her mom to seek additional treatment from a new gastroenterologist. As we all know it can be challenging to articulate IBD symptoms to those who haven’t experienced them. Michelle knows she can always count on her mom no matter what she’s going through. Even though she doesn’t blame her mom for passing on IBD to her, she did get frustrated that she didn’t recognize the suffering earlier as a child because that was her mom’s “normal”, too.

“Since she was living her life that way, she thought my problems were “normal”, so I had to wait until I was old enough to advocate for myself to get the answers I needed. I wish she wouldn’t feel guilty for passing it on to me, because it’s not her fault. Seeing my mom push through gives me strength. I’ve seen firsthand how she’s successfully raised a family, had a great career, and traveled the world (all things I aspire to do!) and done it with IBD. It’s a relief not to have to explain the pain and worry in detail because we just know what the other is going through. As unfortunate as it is that we both are going through this, having my mom understand what I am feeling both physically and emotionally helps to validate it. If my children are to ever get IBD, I am now confident that I am in the best position to take care of them because I know what to watch out for and how to be proactive about treatment.”

History repeating itself

Both Ellen Jenkins and her mom were diagnosed with Crohn’s when they were 18 and freshman in college at the same school! Ellen says her mom still feels responsible for her being sick, even though she has never blamed her for IBD.

“Growing up and watching my mom live a normal life despite her IBD comforted me when I was diagnosed. I am so thankful to have someone who understands firsthand what I go through. Although no parent would choose to pass Crohn’s on to their child, IBD has made us closer. I have never been upset that I got it from my mom. Instead, I’m thankful to always have her as an advocate in my corner who truly understands the struggles.”

A heartfelt thank you

As an IBD mom, hearing these experiences and perspectives really puts my mind and heart at ease. As you can see, there’s a common thread throughout. Rather than blame their parent for passing on IBD, these young adults look to their parents as a pillar of strength, a source of understanding, and as partners in taking on their illness. Through the pain and suffering there is also gratitude, clarity, and unbelievable resilience. Just how you have grown and evolved as a person after your diagnosis and throughout your patient journey, your child will do the same.

Special thanks to everyone who made this story possible. Your words, your raw emotions, and your candidness are sure to help many and shed light on the incredible dynamic that is created when a parent and a child both battle IBD…no matter what age their diagnosis comes about.

He made me an IBD mom four years ago…here’s what I’ve learned

Four years ago, today, I became a mom. Our son Reid Robert was born and placed into my arms for the very first time. Like any parent, especially one with a chronic illness, those initial moments were emotional and overwhelming in the best way. A wave of relief rushed over me as I lied on the table after my scheduled c-section, grateful my body that had fought Crohn’s disease since 2005, had brought a perfectly healthy baby boy into this world. But I was also nervous about my abilities as an IBD mom and what the journey of parenthood would look like as I juggled taking care of myself and this tiny little human. How would my life with a chronic illness and as a mom play out?

Fast forward four years. I am now a mom of two, with a baby boy on the way (24 weeks tomorrow)! Over these last 1,460 days, I’ve learned and grown a great deal both personally and as an IBD patient. Today—I share that perspective and knowledge with you. Perspective and knowledge, I wish I had when I first became a mom and what I’m continuing to learn along the way.

  1. Fed is best. There is so much pressure on how women choose to feed their babies. It’s ridiculous. I breastfed Reid the first three days and he had formula from that point forward because I was nervous about my biologic. The second time around, I did more research, and chose to breastfeed my daughter. Our journey lasted for six months (my milk supply ran out once I got my period). I supplemented with formula. I’m hoping to nurse our final baby when he’s born in July. That being said—no matter what you choose, it’s your choice. Your baby will thrive. Don’t beat yourself up over it. Drown out the judgement and speak up if someone questions your decision for you and your baby. For me, breastfeeding is a labor of love. I’m not going to act like I enjoy it, because it was hard for me. It’s not something that comes natural for all, and that’s ok. No one is going to ask my kids when they are in elementary school or high school how they were fed or know the difference.
  2. What they see, doesn’t always hurt them. When you’re cowering on the toilet in pain and they’re watching with eyes that speak of concern. When you’re sitting on your couch about to do your injection. When you’re struggling to stand up straight because your abdominal pain is too much. Don’t shield them from your pain. That pain is part of your family story and it’s important you are honest and upfront. It’s those moments that shape their little hearts and their everchanging minds.
  3. Kids roll with the punches. Have to cancel plans or have a low-key day inside watching a movie instead of going for a walk or to the park? —that’s ok. Your children will feel loved and taken care of just the same. Kids are flexible. They don’t need to stick to a rigid schedule to be happy and fulfilled. At the end of the day, it’s your love and support that matters most.
  4. Innate empathy from a young age. With my oldest being four, I can’t tell you enough how many times I’ve been blown away by his empathetic heart. Before he was even two years old, he would kiss my thigh after my injection and walk up to me in the bathroom, give me a hug, and pat my arm or stomach to comfort me. Now, he asks me if I’m hurting or in pain. He knows mommy isn’t always healthy, but that she’s always strong and gets through it. That empathy goes far beyond me—I see it in the way he is with others and it makes my heart feel like it’s going to burst with pride. I credit that aspect of his personality to what he’s witnessed these first few years of life, and for that I’m grateful. I can guarantee you’ll see the same with your children.
  5. Greatest source of motivation. Even though I’ve been in remission since August 2015, my kids still serve as my greatest motivation on the difficult days with the disease. Whether it’s pain, prepping for a scope, or going through a procedure, I keep my eyes on the prize—them. Just thinking of them gets me through everything. They give me so much to fight for, day in and day out. It’s not just about me—it’s about all of us.
  6. The importance of communication. When you become a parent, communication becomes even more paramount in your relationship. If you don’t share when you’re struggling or symptomatic, your partner can’t offer the support you need. Even if you’re not in a full-blown flare, it’s beneficial for everyone involved (you, your partner, and your kid(s)) that you share when your IBD is causing you issues. I always text my husband when he’s at work or simply say, “I’m having a bad Crohn’s day” or if I’m in the bathroom for a long time after dinner while he’s trying to get the kids to bed …and that’s all it takes to get the message across.
  7. Asking for help doesn’t make you weak. You’ve probably heard the saying “it takes a village to raise a child” …and it really does. You are not failing or less than because you ask or help, need a break, or time for yourself. You will be a better mom if you take time for you. You’ll be better able to keep your disease in check if you have time to relax and de-stress. I’m not always the best when it comes to accepting or asking for help, but as I gear up for three babies four and under, I know I’m not going to be able to do it all on my own and that I’m going to need more out of my village.
  8. Your health can’t go on the backburner. When you’re a mom, your needs often go to the bottom of the totem pole. When you are an IBD mom, they can’t. While I used to try and “brave out” my symptoms until the last possible moment, as a mom, I’ve completely changed. After nearly 16 years living with Crohn’s, I know when my body is speaking to me and now, I listen and address what’s going on immediately. I credit being proactive and sharing with my GI when it feels like my remission may be in question for the reason why I’ve been able to stay in remission all this time. I’ve gone on bursts of steroids, had my trough levels checked for my biologic, and done fecal calprotectin tests through the years when needed. The last thing you want as a parent is to be hospitalized because of your IBD. To me—it’s inevitable. It’s not a matter of if it will happen, but when. But I do everything in my power to keep myself home and out of the hospital and will continue to do so until that’s no longer possible.
  9. Every “tummy ache” and loose stool from your child is not IBD. When my kids say they have a tummy ache or I seem to think they’re going to the bathroom more often one day than not, I’m immediately worried and concerned. Could it be IBD? Why are they feeling this way? Is it my fault? What do I need to watch out for? All the questions flood my mind and sometimes my emotions get the best of me. Then, my husband normally talks me down and says it’s probably nothing and I need to stop jumping to conclusions. He’s right. Chances are potty training could be causing tummy aches. Or maybe like the rest of the population, they are going more because of something they ate. The chance of passing along IBD to your child (when one parent has it) is only 2-9% (according to the Crohn’s and Colitis Foundation). Remember that.
  10. You are their hero. Of course, there are times I wish I wasn’t an IBD mom…and “just” a mom. At the same time, I credit my disease for much of my outlook on life and how it helps me cope with setbacks, but also celebrate what to many others may be the mundane. My kids don’t see me than less than. When they sit through doctor appointments in the stroller and blood draws, or watch me make faces drinking colonoscopy prep, or count to 10 while doing my shot before they go to bed, they simply see their mama. This is their normal—they don’t know anything different. When I talk to teenagers or young adults who grew up with a parent who has IBD, I always hear the same thing— ‘they are my hero’.

Along with being a hero to your little one(s)…you are also…

Someone who takes unpleasant moments in stride.

Someone who wears the title of “mama” with great pride.

Someone who will never stop fighting for the feel-good days.

Someone who doesn’t allow your illness to rob you or your child of joy.

Someone who goes after their dreams—like that of being a mom—even though your back story may be a bit more complicated.

Someone who is just as worthy as anyone to be a parent.

We’re four years in, Reid. Like everything in life, each moment—beautiful and challenging—is fleeting. Thank you for being patient with me, for understanding me, and for being a daily reminder that I’m so much more than my Crohn’s disease. Being your mom is my greatest title and has been the best chapter of my life story and patient journey thus far.

Register NOW: IBD Insider Patient Education Program (January 30)

Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.

The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:

  • Getting the most out of your healthcare visit
  • Future therapies in IBD
  • Holistic Approach to IBD Care
  • Management of IBD Care during the COVID-19 pandemic

I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.

“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future.  Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.

As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.

It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!

Sticking to your guns: How to Speak up During Blood Draws and IVs

All it takes is one experience to alter how you respond and react to the way you receive medical care. For me, it was July 2008. I was getting admitted for an abscess the size of a tennis ball in my small intestine. No one could start my IV. I was in excruciating pain. It took eight tries to get an IV going. EIGHT tries. It was so emotional…and aggravating. It took two nurses, a rapid response nurse, and finally an anesthesiologist to get the job done. For many in the IBD community, we have medical PTSD. A term not to be taken lightly. It’s moments like the one I mentioned before that have scarred me in a way that impacts every single IV I receive. I get anxious, my mind reverts to the past trauma, and I don’t trust that the person taking care of me will be able to get me in one stick.

While this may not be fair to the medical professional, in my 15-plus years with Crohn’s, I can attest to the fact that no matter how many times you say, “you have bad veins” or that you’re a “tough stick”, you’re typically told “it will be fine” and that they “hear that all the time.”

This week—I offer up some tips for communicating your needs when getting blood draws and IVs. Sometimes it can be overwhelming when you feel as though your fears or worries are being downplayed. You may not want to be “that patient”—the one who speaks up and demands the care they deserve but are scared to ask for. This also goes for parents who are watching as their child may be stuck over and over and over again, and not knowing when the right time is to speak up and say something.

  1. Ask for a butterfly needle for blood draws. As soon as you sit down to get your blood drawn, casually say you have tiny veins, and a butterfly works best. If the phlebotomist says you don’t need one (yes this happens)—say you have IBD and get blood draws all the time and know what works best for you, especially considering the number of vials that are generally taken in one sitting.
  2. Give each person two tries. Once I experienced eight tries for an IV, I instituted this rule for my care from that point forward. I usually tell the nurse/phlebotomist nicely at the start that I give each person two tries, and after that someone else must try me. If they successfully give me an IV in one try, I make sure to give them kudos and thank them.
  3. Know your spots. If you have bad veins like me, you know where your “good vein” is. If the antecubital is not working, go for one in your hand. If it’s an IV, try and do your non-dominant hand, as the placement can be challenging if it’s in for multiple days.
  4. Ask the medical professional to break out the vein finder. This can save everyone (not just the patient) some time and energy. This has worked wonders on me in the past to help healthcare professionals locate and access which vein is best to go for. It’s completely painless. It’s like x-ray vision that shines light under your skin and shows the veins below.
  5. Take advantage of numbing cream for pediatric patients (adults can also ask!) While the cream can be great for taking away the sting of the needle, it’s important to keep in mind it can take 30 minutes to activate (which feels like an eternity while mid-flare) and can also make the patient more anxious as they wait. The medicine is also known to shrink the vein underneath as well, which can make getting the IV started a little more challenging. You may consider putting a lidocaine cream on at home before you head to the hospital if you have some available.
  6. Be hydrated and warm. If you anticipate the need for an IV, try and drink as much water as you can ahead of time. Have a heating pad or warm pack placed on your veins. Even putting the warmed-up hospital blankets around your arm prior to the stick can help get you prepped.
  7. Breathe deeply. Try not to watch the needle going in. Focus on a focal point on the wall or go to your happy place to distract yourself from the initial prick of the needle.

The most important thing of all is to be your own best advocate. Don’t worry about hurting feelings or coming off as high maintenance. Offer up as much intel you can in a constructive and calm way as possible. Once you’re diagnosed with IBD and experience the hospitalizations, scopes, surgeries, scans, and lab work, you become a “professional” at being a patient and knowing your body. Unless you use your voice and communicate your needs, they may not be met. Rather than thinking of those caring for you as instilling pain or as the adversary, it’s in our best interest to work together as a team with our physicians and nurses so they can provide the best possible care and so we can build a long-lasting relationship based on trust, rather than fear.

For parents, try and stay as calm as possible and allow the medical professionals to work their magic in distracting your child and making them feel safe and at ease. Your stress level and energy (both positive and negative) will reflect onto your child. If you feel your child is being given the best possible care, try and go with the flow as much as possible. You’ll know when and if you need to speak up. Know that your child is watching. Be tactful, confident, kind, and direct if you believe something different needs to be done or tried. You are your child’s voice piece.

Through the years, whether it’s in the ER or getting a blood draw, the moment I say “I have Crohn’s disease” it’s like I just dropped major street cred. Medical professionals know when you have IBD you have to be tough as nails, you don’t have any other choice. So, when you say that—be confident that when you offer up advice pertaining to IVs and blood draws you have that going for you.

Clinical Trials: How the IBD Community Can Drive Breakthrough Research

Clinical trials are the backbone of medical breakthroughs and the lifeblood for the future of treating diseases like Crohn’s and ulcerative colitis. When I started on my biologic treatment in July 2008 to get my Crohn’s disease under control, there were only two treatment options on the market. Fast forward to 2020, and now there are 12 biologic treatment options for IBD. This is all thanks in part to clinical trials. This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about the importance of clinical trials. I am passionate about educating others on this topic with the hopes of raising awareness about the power of breakthrough research.

It’s promising and hopeful to know that as we speak, according to ClinicalTrial.gov, there are thousands of clinical trials geared towards IBD research underway around the world! Despite the pandemic, recruitment and patient enrollment for clinical trials are still underway. While there may be 12 biologic treatment options on the market, there are still so many patients who build up antibodies to every drug they try and have nowhere to turn. The Crohn’s and Colitis Foundation finds one-third of patients do not respond to initial IBD treatments. It’s imperative more options become available for our community not only now, but in the future.

Talk it out with your care team

By communicating with your gastroenterologist, you can learn more about the options available and how to find a clinical trial that is tailored to you and fits your needs. By participating, you can help shape the treatment landscape for the future and have a hand in pioneering innovative therapies. Some patients may shy away from clinical trials, thinking they’d be a guinea pig, while others are desperate to improve their quality of life and weigh the benefits as being greater than the risks. It all comes down to the patient population being better informed of what it’s like to be a clinical trial participant and how safety is paramount.

Understanding the safety measures to protect clinical trial participants

Prior to a clinical trial starting, it’s important to understand there are a lot of hoops to jump through. When it gets to the point where patients like you and me participate, the research process on the new treatment has already been going on for more than a decade. According to Clara Health, first the treatment is tested in lab cells and animal studies. Then, the Food and Drug Administration (FDA) gets involved and must give its stamp of approval for a clinical trial to get underway.

Clinical trial participants can have peace of mind knowing they’ll receive top notch medical attention from start to finish and be observed for any potential safety concerns. Every single potential side effect is documented and shared by the study team so that all participants are aware of any new risks, benefits, or side effects that are discovered during the trial.

When you think of participating in a clinical trial it’s empowering to know you are not only possibly helping yourself, but the entire IBD community. The future of how our disease is managed and treated depends on patients like us to step up to the plate. New treatments and therapies are dependent on us. Treatments can’t be created without us. So often the “what if” looms over our heads as IBD patients, in a negative way. With clinical trials, the “what if” signifies endless possibilities, hope, change, and breakthroughs that could ultimately shift and inspire what the future of care looks like for not only us but future generations who will be up against the beast that is Crohn’s and ulcerative colitis.

The Crohn’s and Colitis Foundation has many resources dedicated to this topic that are sure to put your mind at ease.

To learn more about clinical trials head to Clara Health’s website.

IBD and Adoption: Insight from a Crohn’s mom about the journey

When you have IBD, the path to motherhood can look different for many. There is added stress about whether your body can create and sustain a new life successfully. There’s worries about flare ups and medications and how to stay well-managed while keeping the health of your unborn child in mind…just to name a few. For 30-year-old, Audrey Bolton, of North Carolina, adoption had been a calling in her life since high school when she stood at the airport and watched a family friend bring home their daughter from Guatemala.

She knew from that day forward, she would adopt one day. What she didn’t know is that she would be diagnosed with Crohn’s disease 10 months after getting married and struggle to conceive. This week on Lights, Camera, Crohn’s, Audrey shares her journey of becoming an IBD mom through adoption and what she wants others to know about the process.

NH: Many women with IBD fear their bodies are incapable of carrying a child/or are told they aren’t well enough. What would you like to say to them?

AB: “I would tell them that every journey to parenthood looks different, but at the end of the day, we are all moms. I think it depends on everyone’s situation and it’s a conversation they need to have with their doctor(s) and their spouse. For me, I was sick at the time my husband Crawford and I wanted to have a baby. I was not sick enough to where I wouldn’t be able to parent, but I do not think my body at that time could have been healthy enough to carry a child without problems. With that said, I’m nearing remission so I do still hope that one day we can have a biological child. If a person wants to be a mom, I fully believe that there are many different avenues a person can take to be a mother.”

NH: What are some of the struggles/challenges about adoptions that you wish other families knew?

AB: “Adoption comes from a place of brokenness, so while it is so beautiful that our son Camden made me a mother, it is not lost on me that his birth mother made a huge sacrifice that left a piece of her heart missing. It can be beautiful and heartbreaking at the same time.”

NH: Was the fact you had IBD ever an issue with adoption agencies?

AB: “Not at all! I love this question because I wasn’t sure what to expect when we started the process back in 2017. For all adoptions, you must complete a home study which includes health questionnaires, a physical, and several meetings with a social worker. In those meetings, we talked about my Crohn’s disease and how I was working with my doctor to treat it. If a person is well enough to parent and take care of a child, there are not any issues with having IBD and being eligible for adoption.”

NH: What are your tips for navigating the adoption journey with a partner/spouse?

AB: I could write a book on this one, but the truth is, Crawford has been my rock. He had no idea when he married me that I would be facing a chronic disease that would land me in the hospital multiple times a year for days on end. He has truly stuck by his vows “in sickness and in health.” I think the best tip I have for navigating Crohn’s with a partner/spouse is to communicate. Crawford knows when I’m not feeling well, the best thing for me is to rest and he makes it happen. He also is my voice of reason and tells me if I’m doing too much or if I need to say no to some obligations so that I can properly rest. Communication is key!

NH: What was it like when you first met your son Camden?

AB: “I always envisioned the moment we laid eyes on our son to be beautiful and the best moment of my life. When we arrived at the hospital, we had not slept in 24 hours and had driven straight through the night. We thought we would be meeting our son, but we were told he was being transferred to a Children’s hospital for further testing on his heart. He was hooked up to all kinds of wires and it was one of the scariest moments of my life. We only got to see him for about an hour before the ambulance came and took him to the Children’s hospital. It was whirlwind of a day, but God saw us through it and the next day, he passed all of his tests with flying colors and I was able to bond with my baby for the first time and have my “beautiful moment.”

NH: What’s been the most magical aspect of being an adoptive parent?

AB: “Most days, I forget that Camden is adopted. He looks just like Crawford and he’s been with us from his second day of life, so he belongs with us. Every now and then, I will have a moment and remember that he has another mom somewhere out in the world. I always say that she is my hero because she chose life for her baby boy and I would say that has been the most magical part for me. Knowing that I owe everything to a woman that I have never met. I pray that she has peace in knowing how loved he is on a daily basis.”

NH: If someone is on the fence about adoption–what would you tell them?

AB: “Pray, pray, and pray some more. If it is God’s will, he will give you that peace. I receive messages every day asking how the process works and people are scared about the cost. If it’s meant to be, don’t let the cost stop you! There are so many ways that it CAN be done.”

NH: You recently announced you’ll be adopting baby number two in 2021, you must be so excited! Did that process differ at all from Camden’s?

AB: “We are extremely excited. So far, it is the exact same because we are going through the same agency. I’m sure there will be some bumps along the way, but we are so excited to bring home baby #2.”

NH: How has already being an adoptive parent helped you through the experience this time around?

AB: “I know what to expect this time, so I am better prepared for the timeline and the traveling that is involved. With that said, our adoption with Camden was extremely quick. I was at work one minute, waiting for the phone call to meet a birth mom and the next I’m told that there is a baby waiting for us to come get him. There was no time to think or for anything to really go wrong. That makes me a little more nervous this time, as I know that it doesn’t normally happen that fast. I’m just praying that everything happens the way it should in the Lord’s timing.”

NH: How has faith played a role in how you navigate your IBD and motherhood?

AB: “I would be lying if I said I never questioned why God would allow a 25-year-old newlywed to be diagnosed with a chronic disease with no cure. It has been a tough journey, but I think God has shown me a glimpse of how strong I can be in tough situations and it ultimately prepared me to be a mother. Not long after we brought Camden home, I had a full circle moment one night while rocking him to sleep. I realized that Camden would not be in my life if it had not been for all the trials I faced with my health and months and years of seeing only one line on a pregnancy stick. While the journey was really difficult in the moment, it is the privilege of a lifetime to know God handpicked me to be Camden’s mother and that He was with me through all of the really low times.”

Connect with Audrey on Instagram: @audreyabolton

Click here to check out her blog.

Why IBD Forces You to Take Off the Rose-Colored Glasses and See Clearly

I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.

That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.

When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.

What does this new world of chronic illness look like?

What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.

But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.

Now life is anything but blurry

Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.

It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.

5 Ways to Make Money At Home In The COVID-19 Era

The way we work looks a lot differently these days than months prior. Chances are the COVID-19 pandemic has forced you to work from home, put your job on hold, or be out on the frontlines. Whatever the case may be, there are ways to adapt to these challenging times to help make ends meet. This week—a guest post from Annelise Bretthauer, a certified Financial Planner who also has Crohn’s disease. IMG_0834She offers up some invaluable advice about freelancing and educating yourself about opportunities that are right at your fingertips.

The gig economy has opened up opportunities to make money in a variety of new ways but many of these jobs are not conducive to our IBD community nor COVID-19. Although, driving for Uber or making grocery runs for Instacart offers great flexibility with work hours, it doesn’t meet our IBD needs and puts our immunocompromised community at risk. Thinking about what was available yesterday can blind us from what is available today and what might be available tomorrow. With every struggle and every hurdle comes a silver lining. We just need to know where to look.

The world will never truly be the same after COVID-19 and with that will come new opportunities. New opportunities for even more flexible work that is better suited to our IBD community. Opportunities our IBD community is uniquely prepared for.

We already know how to work from home productively. We already know how to manage hard times and keep going. We already know how to overcome daily challenges and find ways to keep our mental state healthy. We’ve been strengthening our creativity and time management muscles for years. We are strong and have developed a comfort with being vulnerable that allows us to show up in non-traditional ways that our peers cannot. To quote Brené Brown, we are masters at “being in the arena.” IMG_2273

We are wildly adaptable and we’ve already learned to find a community online and make deep connections without ever sitting face to face.

All of these things put our IBD community at the top of the talent pool when it comes to the new jobs that will be created (or established jobs that will evolve) through this crisis. Keep your eye out and your ears open. This list of 5 creative and flexible IBD friendly ways to make money at home is just the beginning!

#1: For The Typing Expert:

Write Transcripts for Audio Files

This job is ideal for those who already spends much of their day on the computer and can type quickly without error. You can make $0.25 – $2.50 per audio/video minute, which translates to ~$15-$25 per hour.

Here are a couple places to go to get started:

#2: For The Person Who Is Happy To Invest In More Education To Make A Bit More Money:

Become A Remote Tax Preparer

This job is ideal for someone who is detail oriented and thinks they could get behind making tax preparation fun and engaging. Once you complete the education (there are some costs associated with doing this) and become certified for tax preparation, you could make up to $100 per hour.

Here are a couple places to go to get started:

#3: For The Computer Wiz:

Get paid to test others websites for usability and content.

This job is ideal for those who can’t stand when a website is hard to navigate and has lots of ideas for how they could make it better. There is quite a range in pay per test (~$5-$90) but it iron’s out to an average pay of around ~$20 per hour.

Here are a couple places to go to get started:

#4: For The Person Who Loves Crossing All The T’s & Dotting All The I’s:

Become an Online Remote Notary (available in in 23 states)

This job is ideal for someone who is detail oriented and enjoys the process of making sure everything is done correctly. Although each state differs in what you are legally allowed to charge for notary services, in most states the maximum is $25 per notarization.

Here is where to go to get started:

#5: For The Early Riser or Night Owl Who Prefers Working Odd Hours:

Teach English Online

This job is ideal for someone who likes to be up early or stays up late. That is because many of the jobs are teaching English to foreigners in different time zones. Please note, many sites require a bachelor’s degree and a TEFL teaching certificate. The pay does vary significantly but most sites pay between $10-$26 per hour.

Here are a couple places to go to get started:

  • Magic Ears (need TEFL teaching certification + bachelor’s degree)
  • VIPKid (Platform offers TEFL certification but you will need a bachelor’s degree)
  • ET Teach Online (need TEFL teaching certification + bachelor’s degree)
  • Cambly (no experience needed)

If none of the options above speak to you or you aren’t sure where to start, check out Chronically Capable. Chronically Capable is a job site designed only for those with chronic illness. You can browse for jobs that have already been pre-screened by their team – pretty awesome huh!? IMG_7756

From one IBD warrior to another, don’t ever lose sight of your worth. Your skills and your adaptability will rise to the top of the talent pool. We can’t pour from an empty cup, so remind yourself that self-care is other’s care.

If you’ve ever been curious about how others make, save and spend their money, feel free to check out Annelise’s podcast, This American Wallet. She interviews different people from different walks of life about money. Available for a listen on Apple podcasts, Spotify, Stitcher or Google Podcasts.  

Disclaimer: This article is for informational purposes only and is not to be taken as advice of any kind. All pay estimates were made in best efforts given the informational available via each company website.

 

My family calls me “Sergeant COVID”: Navigating life while being high-risk, as the world reopens

I’m preparing to feel like the bad guy in the months ahead. My family has already jokingly called me “Sergeant COVID”.  As an IBD mom who is immunocompromised, the decisions I make as the world starts to reopen may step on some toes. I’ve always been one to struggle with confrontation and take it upon myself to be a people-pleaser, which isn’t always a good thing. But this. This is different. I know there will be times I need to speak up and say no.

While out on a walk with my family in our neighborhood this week, we approached a house with two moms sitting side by side, a play date was going down.

sophiawalk15months

Daily walks and getting fresh air help to keep us sane!

Several kids ran around the yard. An SUV parked next to the two moms with their thermoses. I turned to my husband when I spotted them and said, “well there’s a playdate.” He laughed and said, “Are you not going to allow Reid and Sophia to see anyone for a year?”

Well, that’s a good question my friends. Who knows what these next few months will bring, and as someone who is immunocompromised from my biologic medication, that may need to be the reality if things don’t make a drastic turnaround for the better as far as number of cases and deaths.

I want to be together with my friends and family as much as the next person

I also understand the risk associated with getting together with people who have not taken social distancing and quarantine as strictly as my family has. I haven’t stayed in my house and neighborhood since March 12th and only ventured to the grocery store and for bloodwork once, to throw those efforts out the window. I haven’t cooked every meal for my family and refrained from ordering take out for nothing.

baking

Trying lots of new recipes has been a great distraction.

The moment I let my guard down before I feel comfortable, the moment I put myself or my family at risk.

As someone who’s worried about sickness from germs and flare-ups for years, I see this pandemic through a different lens than many. Anyone in the IBD community who is on immunosuppressive medication has a different perspective. I’m already anxious about having to justify my decisions to stay home as life slowly starts getting back to a new normal for everyone. But until I feel safe, we’ll be taking all the precautions.

I wonder just as much as the next person in the chronic illness community how to navigate these difficult conversations with well-meaning and otherwise “healthy” friends and family. When I hear about people getting together indoors, going for walks with people outside their nuclear family, having people over for BBQs, even being essential workers (which I know can’t be helped)—I know the date I’ll see those friends and family just gets pushed further away.

When things calm down, the first people my kids and I will see indoors, will be my parents, who have practiced strict social distancing and haven’t ventured out for anything but groceries. If they were out and about and seeing others, that wouldn’t be the case.

We all need to do what we feel comfortable with and worry less about hurting someone’s feelings or getting a little backlash for our decisions. Luckily, my husband Bobby has been extremely understanding and supportive and backs me up on how I feel. IMG-1529

The best thing we can do is over-communicate. Talk openly about life as someone who is immunocompromised and what recommendations and parameters around social distancing your care team has shared with you. By talking about what your doctor has told you, it validates your worries and fears.

It’s ok to feel disappointed and frustrated. Not everyone has been or will take social distancing and quarantining as seriously as you do. Focus on what you can control—and that is your actions and that of your families. You are doing all that you can to stay safe, and that’s what matters. I’ve had moments where I was physically shaking and so overwhelmed by emotions throughout these past few weeks—because of the actions of others. You see it on social media—the families getting together with several people for Easter, and birthdays, and Mother’s Day. People taking trips on airplanes. Social distancing block parties where people are all standing super close to one another. It’s truly mind-boggling and hard not be judgmental from my vantage point. If you need to cut down on social media or cut ties temporarily with those who you believe are acting irresponsibility, do what you need to do for your mental health and well-being.

We had originally planned to drop off my mother-in-law’s Mother’s Day gifts on the front porch and stay in our car, but my in-laws set up patio furniture on opposite sides of their large patio and we were able to hang out outside 20+ feet apart to exchange presents. It was nice to finally see one another from afar vs. through a window.

Constantly keep your finger on the pulse of research. There are so many physicians in the IBD community truthfully working around the clock to bring patients like us the latest and newest information about COVID-19 as it relates to Crohn’s and ulcerative colitis. Educate yourself on factual, research-based information. Follow top GI doctors on Twitter. Stay in touch with your care team and don’t hesitate to ask questions. Tune in for Facebook Lives and Twitter Chats from IBD Social Circle, IBD Moms, and many other great groups.

Lean on the patient community. Prior to the pandemic, life with a chronic illness already made us feel a bit like outsiders. IMG-1409Now more than ever, we’re being labeled as the “sickly”, the “disposable”, the “weak”, the list goes on. COVID-19 is not JUST about the elderly and immunocompromised, this is about everyone. As patients we have a unique perspective and understanding about the struggles we face daily and what it’s like to go through this challenging time. Connect with fellow patients online who get your reality, your emotion, and the whirlwind of going up against this invisible bogeyman. To refrain from social media, you can download awesome free apps like Gali Health and IBD Healthline, with helpful articles, community conversations, and chats by patients, for patients.

Your FOMO is nothing new. Chances are throughout your patient journey you’ve had to miss out on plans or cancel last minute. Will it be hard when the whole family or your group of friends are getting together, and you tell them you won’t be joining for the big “post-quarantine” reunion? YES. Of course. At the same time, you’ll probably feel comforted not having to worry if so and so is asymptomatic and waiting on pins and needles for two weeks to see if you’re in the clear.

I look so forward to the day when my family and I can reunite with those we love and miss dearly. I just ask that people have understanding, patience, and empathy for those like myself, who will be very fearful to return to life as we used to know it…if that will ever be. Maybe put on the kid gloves and imagine walking in our shoes before you say something that you can never take back.

Revolutionizing the patient experience through crowdsourcing: Use your journey to make a difference

This blog post is sponsored. All thoughts and opinions are my own.

Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.

Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family. Yael Elish and daughters_1

“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.

When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.

“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community.  Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”

StuffThatWorks Currently Serves 85 Condition Communities

As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.

StuffThatWorks is looking to grow the IBD community.

Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.

SymptomsUlcerativeColitis

Take the UC survey: https://stuff.co/s/5sSltbnK

On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.

“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.

COVID-19 response

StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?

“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”

In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?

The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.

Crowdsourcing research is limitless: The hope for the IBD community

You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.

TreatmentCategoriesCrohns

Take the Crohn’s survey: https://stuff.co/s/bzqQR5xP

“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.

As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.

Driving Research through Patient Reported Outcomes

Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.

So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide. LightsCameraCrohns-Blogpost_image

Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.

Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.