I have Crohn’s… and I’m going to be a Mom!

image3For the first time in more than 11 years, I have a lot more than Crohn’s going on in my abdomen… I’M PREGNANT!! It’s amazing to finally be able to share these exciting words with you and offer insight into what it’s like to carry a child while living with a chronic autoimmune disease. I just surpassed the 13 week mark on Saturday and we found out Baby Hayden is a BOY! He is due on April Fools’ day.

Prior to getting married in June, I underwent a colonoscopy in May to see if I was in remission (with family planning in mind). While Crohn’s presents differently in every patient—the general rule of thumb for prospective mothers is to conceive only when you are in a remission state. If you’re flaring or have active disease present—oftentimes that can carry on throughout the pregnancy. For many—pregnancy hormones slow digestion and in turn the disease is silenced. This makes me want a family bigger than the Brady Bunch! (just kidding, Bobby!) Lucky for me, three weeks before the wedding—I was told I was in remission. I attribute my remission to the removal of 18 inches of diseased intestine in August 2015 and making the decision to go back on medication once I was healed, even though I dragged my feet at first.

While the news of being in remission was exciting to hear—I always take the results with a grain of salt. The year before I was told the same thing… and ended up hospitalized with a bowel obstruction 10 days later. All I could hope and pray for was to stay in remission long enough so that we could try to start our family after our wedding.

I described this time period as “racing my remission.” I was fearful –wondering whether we would get pregnant before the disease would strike again. On my wedding day (June 4) I was symptom free; despite all the hustle and bustle of the day…talk about a Crohn’s miracle!! Then, we were blessed to find out at the end of July that we had a baby on the way.

To say we feel elated and over the moon is an understatement, as any couple wanting a child feels when they find out they are going to be parents. It’s truly hard to put into words how fortunate we feel. Of course we won’t feel a true sense of relief until he is safe in our ababyboyrms. I’ve wanted to be a mom for as long as I can remember, and I’ve always worried about whether I would out-do my disease in time to and beat it to the punch when the time was right for me.

It was such an incredible sense of relief to see the positive sign on the pregnancy test and have it all confirmed at the OB a few weeks later. While there’s no telling if I’ll flare while pregnant (a constant fear that looms over me), so far things are going great. Since I’ve been pregnant there have only been six days where I felt symptoms of Crohn’s… it’s incredible not to feel the symptoms that have been a part of my life for so long. I can only hope and pray this continues until I deliver. I traded Crohn’s issues for pregnancy symptoms, but I consider those more than worth it—especially knowing they are temporary!

As a Crohn’s disease patient and mom-to-be, you’re considered high risk. I try to look at the bright side of it all—we have three specialists watching over baby and me…and we get to see our little one through more ultrasounds!

Over the years I’ve come to realize how little information there is about women who’ve been pregnant with Crohn’s disease… or any autoimmune disease for that matter. I started this blog with the hope that I’d be able to share this journey with the public and make a difference. (We found out the news of the baby two days after the blog went live, so you can imagine how anxious I’ve been to share this update!!) Through this journey of pregnancy and motherhood, I am going to offer a voice for the women out there who are going through the very same thing and have the very same questions. Whether it’s to stay on medication, deciding to breastfeed, if you should plan a vaginal or c-section delivery, etc…the list goes on and on, there is SO much to consider.

While I don’t have all the answers of course, I will explain to you what I’m learning along the way and the reasons for my decisions. The blog won’t focus solely on this—but, I feel my experience can help pave the way for those in my shoes. In the meantime, if you have questions or topics you want me to cover—don’t hesitate sending an email to lightscameracrohns@gmail.com.

How to empower yourself next to those in white coats

Finding a health care provider who is supportive, compassionate and understanding may sound like a no-brainer, but in actuality it may be one of the most difficult parts of your disease journey. I’ve encountered gastroenterologists on both sides of the spectrum… and boy does it make a difference. I’m  sure many of you have met doctors along the way whose bedside manner and thought process leaves much to be desired.

Ideally, you’re able to secure that patient/doctor relationship before a flare up or a hospitalization, but that’s not always possible… or the case.

Tips for finding “the one”:

  • Feel empowered by your healthcare choice: Be comfortable with your treatment plan and the way your disease process is handled. No one has a gun to your head making your take a certain medication or see a certain specialist. It’s your body. It’s your choice. Do what’s best for you. Follow your intuition.
  • Speak up and voice your concerns: Team up with a doctor who values your input and experiences and doesn’t group you with other patients or belittle what you know. See a doctor who makes you feel like your case matters and is unique, because it is and deserves that type of attention.
  • Ask yourself this question: During a hospitalization, do you want your current doctor at your bedside?: If your doctor brings on Crohn’s symptoms because he/she makes you nervous or uneasy…that’s an easy answer and it’s time to “shop” around. The last thing you want is to feel even more out of control of your care while lying lifeless in a hospital bed. Choose a doctor who you trust in your heart is doing all they can to make you whole again.
  • Be your own advocate: Sometimes you need to be assertive and push back. Educate yourself about treatments and why certain tests or medications may or may not be necessary. If you’re feeling great and don’t see the need for that colonoscopy at the moment, do what you are comfortable with and re-visit it in a few months. (I’ve done that—no issues). Nobody knows your body better than you—trust in that.
  • Find a doctor who’s accessible: Many doctors understand that symptoms don’t strike from 9-5 p.m.; I’ve encountered a GI doctor and a surgeon (not affiliated) who provided their personal cell phone numbers to me. Build that rapport and confidence with your doctor. Just having that number in your wallet can bring all kinds of comfort. Leading up to my surgery in August 2015 it was amazing to talk to my GI from my hometown who’s been by my side since I was diagnosed in 2005. He called me while he was driving—his words eased my fears and confirmed I was making the right choice. Now THAT’s a doctor who cares. Wish I could clone him!
  • Ask around your IBD network: Just like with many things in life—talk with friends, family and colleagues and see if they can recommend a doctor they love. Social media is a great outlet to do so. A doctor’s reputation is usually pretty spot on.

Always remember your doctor is a key player in the game—and the balls in your court to choose one who suits your needs. I’ve dealt with doctors who left me sobbing in the parking lot, feeling useless… to others who have lifted my spirits to new heights. You deal with enough as it is already, you didn’t choose your chronic illness, but you can choose who you want on the front lines to take it on with you.

The inner battle: A whole body approach

One of the scariest and most daunting parts of Crohn’s disease or any chronic illness for that matter is the wonder and curiosity of when it’s going to strike next. Even if it’s been months or years since a hospitalization or flare, not a day goes by that you don’t wonder…when is the next time going to be? Each time I’ve been hospitalized in the past 11 years I have felt completely fine in the morning—and then something changes. A few hospitalizations really stick out in my mind because of how abruptly my day and life changed.

The first was in May 2009. I anchored the morning news on Wake Up Wisconsin and felt great, had a first date planned in the evening and was getting ready for it. What seemed like a happy, carefree day—turned into a nightmare in a matter of moments. The crushing, debilitating stomach pains started out of nowhere, I was vomiting from the pain…and before I knew it, hospitalized. The guy I was supposed to go on a date with laughed and thought it was all an excuse not to see him.

Another instance that sticks out in my mind—I was training for my second half marathon in February 2014, anchored the morning news in Springfield, ran 9 miles and was heading to St. Louis after my run to see my boyfriend (now husband). While I was driving to St. Louis those all too familiar pains began…later that night I was hospitalized with a bowel obstruction.

That’s how quickly it happens. The disease doesn’t care if you have plans. The disease is a mysterious beast that chooses to rear its ugly head without any notice. But, the magic happens when you find a way to manage stress so it doesn’t lead you to a vicious cycle of flare ups. This can be easier said than done, but there are ways to manage the day-to-day and be mindful of your thought process and your body.

Many time people with Crohn’s disease and Ulcerative Colitis have what’s called “psychophysical vulnerability.” Meaning that stress, emotional health and poor coping strategies can impact how one’s disease progresses and hinder quality of life. While it’s imperative to follow a diet, exercise and treatment plan that you respond best to, it’s also important to focus on the emotional and cognitive impact the illness has on you.

  • Breathe deeply: Breathing out for five seconds and in for five seconds helps to slow you down and create a sense of calm. Do this as many times as you need to feel relaxed. Be mindful of your breath as it enters and exits through your nose.
  • Focus on the now and not the what if: There’s no sense in worrying about your next hospital stay—have confidence in the fact that with each flare up and rough day that has happened through your disease process there has been a beginning and an end. Deal with it when it happens—don’t waste time living in a state of fear. You’ve beat it before and you’ll beat it again.
  • Confide in a family member or friend: Share your struggles and worries, don’t keep them bottled up in side. If you don’t communicate with your support network they won’t know you need help. Always share your feelings, don’t hesitate or feel like you need to deal with this alone.

Overall, place emphasis on the “relaxation response”—a physiologic state of deep rest induced by mediation, yoga and prayer—in doing so you not only alleviate stress and anxiety, but also help to keep the disease process in check.

Finding the mind-body techniques that help you fight the fatigue, stress and chronic pain of Crohn’s diseases can be the best recipe for getting the symptom relief you’re looking for. If you’re mentally strong, you’ll be much better equipped to endure the days that hurt you on a physical level.

Taking shots like a champ…and not the kind from the bar

Back in the summer of 2008, during a hospitalization, I was told we needed to “break out the big guns.” The medication I had taken for three years to calm my Crohn’s disease was doing as much for me as a Flintstone vitamin. As I laid in the hospital bed and heard the game plan I was incredibly apprehensive, petrified really…at the thought of having to give myself a painful injection for the rest of my life. There was so much unknown—How would it feel? Did I have the strength to actually inflict pain on myself? What about the side effects?

At that time I was given the choice to give myself a Humira injection every two weeks from the comfort of my home or receive Remicade treatments in the hospital every 6-8 weeks through an IV for several hours. During this time I was a morning news anchor in Wisconsin, nobody knew I battled Crohn’s. I wanted to keep my disease a secret as much as I could, so I chose Humira. Not only for the privacy, but also because I mentally didn’t want to have to go to a doctor’s office or hospital and be hooked up to medicine. To me—that would make me feel like a sicker person. I know multiple people on Remicade who love it, if it works for you—great!

For those who are on Humira—you know the beginning is the worst. The loading dose is physically, emotionally and mentally taxing. In order to get the medicine working you need to do four shots, instead of “just” one. Back in July 2008, I went to the doctor’s office with my Mom to do the first four shots and let me tell you, it’s a milestone in my disease journey I will always remember. The nurse showed me how to administer the shot on a practice squeeze ball, but made me give them all to myself in my thighs. Sitting there with a large epi-pen like syringe in my shaking hand felt so foreign. I shuddered at the thought of what it would feel like when I mustered up enough strength to push the plum-red button and feel the medicine enter my body. You do one—and quickly feel the stab of the needle and the liquid burn through your leg. That’s one. Then you have to prepare to do three more back-to-back-to back. When that was over, I remember walking out of the doctor’s office and stopping before we reached the reception desk. My Mom and I hugged and froze in the moment. That embrace spoke to me more than words could at the time. She felt for me and was and is my biggest cheerleader. It was a feeling of relief, pride and the knowingness that this was just the beginning.

Two weeks later you do two shots—a huge improvement from having to do four, but still no picnic. Unfortunately for me, the loading dose made me feel incredibly weak and dizzy. I was miserable. I couldn’t make it up 13 stairs. Work was a struggle and my energy level felt like I was on “empty” every single day. Each person responds differently to that initial loading dose—you have to tell yourself, your body is absorbing and getting accustomed to 4x a foreign medication. It’s temporary pain for long term gain.

Then, from that point forward, I was down to one shot, every other week. The first few months I would dread my Monday “shot days”…and would cry as I gave myself them alone in my apartment. In time, I grew so much more comfortable and knew the medication was making me feel better and worth the short term pain. Twenty seconds of pain for symptoms to subside and to stay off other medications—pretty great trade if you ask me! Luckily, after the loading doses my body grew accustomed and to this day I feel no side effects or symptoms when a shot is due or after I take one, something that can’t always be said about Remicade.

The past few years Humira has just became part of my life and routine—I give myself the shot every other Monday while I’m watching TV, or running out the door to work or to meet friends for dinner.  Anyone who undergoes surgery is taken off Humira for the time being, so unfortunately I had to do that loading dose again last November. Luckily, this time around I felt a lot braver and didn’t experience any sickness as a result of all the shots.

Here are some tips for all my fellow Humira injectors and for their family members and friends:

  1. Humira is kept in the fridge, take the shot out and set a timer for one hour. I used to do 30 minutes and then a nurse told me I could do an hour, and it’s made a difference. Warming up the medication decreases discomfort.
  2. Five minutes before doing the shot, wash your hands and wipe your thigh or stomach with an alcohol swab. Let it dry and then hold an ice packet wrapped in a paper towel over the spot you are going to inject. Each time you do the shot, switch legs or the area on your stomach. I write R or L in my calendar because it’s hard to remember!
  3. Once you’ve held the ice pack on the spot, take it off and use your forearm to lean on the area for a few seconds…this warms up your skin a bit.
  4. Look at the medicine in the shot and tilt the pen up and down to see that it’s moving in there. There’s a small oval window you can look at it to see the clear medication.
  5. Take the plum-red top and gray bottom off the shot—they are labeled 1 and 2. At this point be ready to inject—any sudden movement will release the medication.
  6. Sit straight up with good posture and stare at a focal point on the wall, on the TV or if you’re like me stare at a photo that inspires you. I either look at a picture of my cousin Bill who’s had the two heart transplants and a kidney transplant, at a photo of my Aunt Judy who passed away from ALS, or one of my husband and I from a happy time. Look at photos of people who have shown you what it means to be strong.
  7. Grab the skin on your thigh or stomach and pull up and back—you want it taught, but not too much where the medication will not go in properly and spill out.
  8. Hold the shot straight up—90 degree angle from your skin.
  9. Stare at that picture and go to your happy place.
  10. Take a deep breath, press the button like a champ, and count out loud…“one one thousand, two one thousand, three one thousand…until 10.” When I’ve needed “extra strength” I’ll say the person’s name as my count down… “Bill, Bill, Bill…”
  11. Lift up the shot—hopefully you won’t see any medication (liquid). Depending on where the injection goes you may bruise immediately or bleed, but in most cases you won’t. If anything your skin may be raised a bit, but that’s a good sign! It means the medication is getting absorbed.
  12. When you look at the oval window of the shot it will be highlighter yellow—meaning the medication has been dispensed. Put the shot in a sharps container to properly dispose of it.
  13. I always text my Mom or tell my husband “Perfect shot!”

While I don’t enjoy injecting myself or getting shots—I do enjoy the benefits Humira has provided me the past eight years. This drug has done a magnificent job of silencing my symptoms and allowing me to have a great quality of life. It’s nice not to need to take 22 pills. It’s comforting to know that when I do get hospitalized doctors have told me my stays are shorter because of Humira. Many people shudder at the side effects—and think…well, there’s an increased risk of Tuberculosis,  Lymphoma, this suppresses your immune system, etc…as my Mom, who’s a nurse, always tells me—look at the side effects of Tylenol and you would never take it. I can tell you since 2008 I’ve never noticed that I get more colds, viruses, etc. I haven’t noticed any difference in my immune system and my blood work (which is tracked quite often) never shows any signs of issues.

How about the cost? There’s a great program called Humira Complete which allows you to get the shots for as little as $5 a month! Click here for more details. If you need assistance for any reason, an on-call registered nurse is also available 24/7 to answer any questions or concerns by calling 1-800-4HUMIRA (1-800-448-6472). The nurse ambassadors are fantastic. If you want a nurse to come to your home and help you or teach you, they stand ready and willing.

It’s up to each person and each patient—but my advice is that you need to weigh the risks versus the benefits and look at what kind of life you want to lead.


Photo taken before my loading dose in November 2015.