From one IBD mom to another: An interview with Tekhni Wovens Founder, Alisa DeMarco

When a family member is diagnosed with IBD the same week as you, it can be sort of a saving grace.

Alisa

One month post diagnosis–dealing with the side effects of prednisone.

My cousin’s wife, Alisa DeMarco, was told she had Crohn’s disease a matter of days before I was in July 2005. At the time, she was one of the only people I knew who had the condition—one of the only people I could confide in who could genuinely understand my reality. At the time of diagnosis and throughout your patient journey—these bonds and relationships are the glue that keeps you together.

alisa3Now, nearly 14 years later—her and I have come a LONG way. She’s on Remicade. I’m on Humira. We are both mothers. We are both wives. Alisa didn’t allow her disease to stop her from following her personal or professional dreams. In 2013, she left corporate America and founded Tekhni Wovens. As an IBD mom and successful business owner, her perspective and ability to overcome the odds is something we can all admire and look up to. This week—an interview with a woman I’m lucky to call family.

NH: What inspired you to create Tekhni Wovens?

AD: As a full-time working mother who enjoyed caring for my children with the help of wraps and slings, I quickly found myself as part of the babywearing community.  Over time I shifted from consumer to manufacturer, designing textiles when I didn’t find what I was looking for— a fashion-forward aesthetic in easy-to-wear blends at accessible prices.

NH: As a woman with IBD, a mom of four, and a wife–how do you balance leading a successful business and keeping your disease symptoms under control?

AD: Balance is a hard ideal to maintain– and I am not always successful! Image-58 I multi-task everything, stay on top of my biologic infusions, rest when possible and, plan my diet loosely around a mix of SCD and low gluten eating. Getting help is difficult, but I feel lucky to have a supportive husband and local family network. My travel schedule wears me down– but thankfully most of my disease symptoms are well controlled.

NH: What advice do you have for fellow IBD’ers who have big dreams but are hesitant to go after them because of their disease?

AD: Your dreams don’t have to be an all or nothing pursuit!  Tekhni started as an idea to make a better product and help support my family… and evolved into multifaceted business with accounts worldwide.  However, it took years, and many winding paths to get there. Know that there’s no deadline or requirement for any passion you want to pursue.  Start with an idea, and break it down into bite-sized pieces. Your disease is only one small part of your identity, and cannot prevent you from planning and dreaming and accomplishing daily tasks on your own timeline. Image-56

NH: Why are you passionate about babywearing?

AD: Babywearing and attachment parenting are very close to my heart– they are natural extensions of our mothering instincts. They help me care for my young, closely-spaced children while working full-time and managing a household with a husband who is often away for work. Image-55Babywearing helps me effectively multi-task and meet my all children’s needs at the same time. It also helps address postpartum depression, by syncing mother and baby, and raising oxytocin levels.  I believe babywearing is a necessity that should be taught to every single expecting parent and caregiver!

NH: Why is babywearing so beneficial for those with IBD in particular?

AD: Babywearing is a perfect fit for people with autoimmune diseases– it helps you hold, carry, and comfort your baby while taking weight and strain off of your back and hips. For difficult days, it can literally be another set of hands.  And keeping baby in proximity leads to less crying, less stress, and more rest for both baby and mother. Image-60As a bonus, a variety of baby carriers can be adjusted to accommodate an ostomy or j-pouch.

Stay tuned to my Instagram account (@nataliannhayden) for a giveaway on Friday, May 17. We’ll be giving away a Studio Tekhni Ring Sling! The winner will be announced on World IBD Day (May 19). Good luck!

 

How it feels to be hospitalized as a mom with Crohn’s

It’s my greatest fear, having to be hospitalized with a Crohn’s flare as a mom of two little ones. It’s something I think about all too often. The thought alone scares me. It’s difficult to imagine the reality of the experience. Since becoming a mom, I’ve been fortunate enough to stay out of the hospital. Unfortunately, for a friend of mine in the IBD community—she’s had to face this reality all too often.

Her son, Beckham is two months older than Reid. Our little guys could pass for brothers. This week—a guest post from Brooke Retherford, a fellow IBD mama from Wisconsin. She shares the raw emotions she’s experienced since her diagnosis at age 13.

IMG_2014I’ve had my fair share of surprises and obstacles with Crohn’s disease. My patient journey includes numerous surgeries, multiple doctor appointments a week, sitting in hospitals getting Remicade infusions, switching up medications to tame a flare and my all-time favorite, hospitalizations for days at a time. Please note the sarcasm in that last sentence.

These instances are not by any means convenient or something I or anyone else with Crohn’s looks forward to. Hospitalizations are such an emotional time for someone fighting this disease. The uncertainty, the physical pain, being absent from work and home and causing those around you the inconvenience of throwing off schedules for a week at a time. But, the absolute worst part is adding an infant to the mix.

When my son was just 4 weeks old my Crohn’s reared its ugly head and sent me and my disease packing to the hospital for a week. IMG_2015When the pain presented, I tried everything I could to avoid the trip. I just wanted to stay home and live my life with a newborn, enjoy the snuggles and oddly enough the 3 am feedings. Then, the time came when I couldn’t even get through a feeding without needing to set him down so I could run to the bathroom. I knew it was time.

It was no walk in the park having to be away from a little one. I cried. I was upset and mad at my situation. I felt like a terrible mom for letting the disease consume my life and take me away from my child. Luckily, I have a great support system that understands the emotions behind a hospitalization. My husband always brings our son Beckham to the hospital. I get to FaceTime my family to say goodnight and get pictures of my son throughout the day. Family (1)

Unfortunately, that wasn’t my last stint in the hospital for Crohn’s. Now that our son is two, I have officially lost count of my time spent away from him. Hospitalizations never get easier. Especially now when he knows I am physically absent from his life and he asks, ‘where did Mommy go?’ It’s heartbreaking and frustrating.

There are always tears involved, mostly mine, but I’ve come to terms with the fact that I am a better mom for realizing that I need to make myself healthy and not let this disease define what type of parent I am.

How a first-grader is taking her Crohn’s and turning it into a positive

IMG_0029She’s a ball of energy and a sweet little chatter box, wise beyond her years. Seven-year-old Brooke, of Missouri, was diagnosed seven months ago with Crohn’s disease. She spiked a fever on New Year’s Eve 2017 that lasted for eight days, and from that point forward, life was never the same.

I had a chance to get dinner with Brooke and her mom, Tara, this past week. I couldn’t help but look at this little girl in awe. Despite already being hospitalized three times since March and starting on a biologic drug in August, it was as if she has dealt with the disease her entire life. She talked candidly about all the pokes of the needles and how she tells all the nurses they are her friend. She raved about the tater tots and pancakes at St. Louis Children’s Hospital. And laughed about how annoying it is when the lights go on in your hospital room in the middle of the night. She was more like a teenager, than a little girl.

Here’s how her Crohn’s diagnosis came about. After ruling out the flu, mono, strep and a UTI, doctors discovered she was anemic. The pattern of fevers continued for two months. Still no answers. As time passed, Brooke’s pediatrician started considering a GI issue. After an endoscopy and colonoscopy, IMG_0409Brooke and her family were told she had Crohn’s disease on March 2, 2018. In a matter of months, she went from being an outgoing, energetic kid to a hospital patient on a laundry list of medications. She developed her first fistula while on methotrexate and was on prednisone for more than three months.

Dealing with the diagnosis

Fast forward to this past summer and this sweet little girl received her first Remicade infusion four days before she started first grade. Brooke is the first person in her family to receive an IBD diagnosis. Her mom, Tara, says these past months have been the hardest she’s ever endured. Her mind races with the what ifs, as she navigates her family’s new normal.

“Were there signs we should’ve seen sooner? Ditarad we do something to cause this? Were we making the right decisions for her treatment and care? Brooke has a HUGE personality. When she was first sick, and before her diagnosis, she just stopped talking. She would lie on the couch for hours and hours every day. This was not my Brooke. She normally can’t sit still for more than a few minutes! I was SO scared because I knew something wasn’t right. Watching her in pain and miserable for two months while we waited on this diagnosis was miserable. You just feel helpless…all we could do was love her and pray,” said Tara.

Juggling life and family from the hospital

Tara and her family have encountered many challenges along the way. Between the costs of the medications, the hospital stays, all the tests and trying to juggle work. To say it’s been a lot, is an understatement. Tara’s husband, Josh, works from home which helps, but Tara is a preschool special-education teacher. She was out of paid sick days by the end of January of this year. Although both employers have been understanding of Brooke’s health situation, the family has taken a big hit financially.

remicadeWhen you’re going through this, you are spread so thin and it’s difficult to ask for help. We have another daughter, Haley, who is 10. Of course, when Brooke was in the hospital, either Josh or I were with her every minute. We live over an hour from Children’s Hospital in St. Louis, so it wasn’t possible to pop up for a quick visit. It was also hard for us to ask for support. We needed help mentally, financially, and logistically with many things. We have an AMAZING support system of family and friends who have helped us throughout this process.”

An advocate from the start

Brooke has been a true IBD warrior every step of the way. She doesn’t even cry anymore when she gets her IV. Brooke openly communicates about her diagnosis and is able to tell you which foods trigger symptoms, and which are safe for her to eat. She explained to me how she’ll have one strawberry at lunch at school, if it doesn’t “hurt her tummy” she has two strawberries the next day, and three the day after that. This little girl just gets it. Tara says in just a few short months, Brooke has already become a very good advocate for herself.

“Watching my baby go through this has changed me forever. IMG_2456Although I know she doesn’t know yet, what it really means to have Crohn’s, I am always so amazed by her strength. She talks about it very ‘matter-of-factly’. It doesn’t define her. I hope and pray constantly that anything that I encounter, I can deal with, the way she has dealt with this. It’s made our family stronger by seeing that we can face this together.”

A GoFundMe page has been created for Brooke and her family. Click here to submit a donation, every dollar helps!