Why my husband is much more than a caregiver, Dr. Phil

March 25, 2019March 25, 20199 Comments

I still remember the moment I told my husband I had Crohn’s disease. It was a beautiful August afternoon. We sat overlooking water at a boathouse in St. Louis on our third date. As we enjoyed casual conversation and a mutual interest in one another, I knew I had to tell him about my chronic illness.

Photo from our third date, the day I told Bobby I had Crohn’s disease.

Nervous to rock the boat. Scared to be judged. Worried it would tarnish the image of who I was so far. I just wanted to rip off the band aid and get this conversation over with.

It was never easy to navigate dating and relationships with my disease. I was diagnosed with Crohn’s at age 21 in 2005. I met Bobby in August 2013 at age 29. Rather than seem put off by my disease, he inquired and showed empathy from that point forward. Never once did he make me feel less than or unworthy of love. In that moment, I knew I had found someone special and I felt a huge sense of relief.

Fast forward to this past month and all the conversation surrounding Dr. Phil’s heartless and ignorant comments about caregiving and relationships. I didn’t see the episode live, but have seen the countless posts on social media being shared to prove him wrong. I watched the interview clip after the segment aired and couldn’t believe my eyes or my ears. Dr. Phil told an interabled couple that “100 out of 100 relationships that involve caregiving fail.”

Photo by J Elizabeth Photography www.jelizabethphotos.com

Helping me walk down stairs during our engagement photos–21 days post op from my bowel resection surgery. Photo cred: J. Elizabeth Photography

It pains me to even write the idiotic words that man said. Not only is it upsetting, but it breaks my heart to think of all the young, newly diagnosed chronic illness patients out there who were already wondering if they were worthy of love because of living with a disease.

I’m here to tell you that you are. I truly believe my vulnerability with my Crohn’s and how I deal with flare ups is a big part of why my husband fell in love with me. Chronic illness isn’t pretty. It forces you to see the world without rose-colored glasses. It makes you realize the importance of your health and how quickly it can be taken away from you.

There’s a reason why you say “in sickness and in health” in wedding vows. My husband chose to spend his life with me, because he loves all of me—even the part of me that is riddled with illness. People are cut out to be caregivers or they’re not. You’ll come across this in your life and know which family members and friends have a special way about them. Those who don’t have this trait and ability aren’t meant to marry people like you and me. And that’s fine.

But to say that 100 out of 100 couples will fail because caregiving is involved couldn’t be further from the truth. It’s through Bobby’s caregiving that I continue to fall more and more in love with him. It’s those moments when I need help to get through a pain-filled day that I’m reminded just how strong and unbreakable our love is.

Caregiving looks and means different things to everyone. It’s not just about being a caregiver in the hospital or at a nursing home. It’s taking care of the one(s) you love on a typical day at home. It can be something as simple as rubbing your back or taking care of the kids while you’re stuck in the bathroom. It can be dishing you out ice cream after you give yourself an injection. Or holding your hand on a walk outside following a hospitalization. It’s those caregiving moments in particular that remind me constantly of the everlasting love I’ve found and make me 100 percent positive we will make it through, for the rest of my life.

My words of advice for you—if you’re a caregiver, know how appreciated you are—for all the little things and the big things. If you’re someone dealing with a disability/disease—don’t allow Dr. Phil’s ridiculously inaccurate comments make you think you aren’t worthy of love, because you are and always will be.

Putting the war paint on and beating Leukemia: Lukas’s journey to wellness

March 24, 2019March 25, 20192 Comments

I handed a few toys to the cashier. She smiled and asked me whose birthday it was. I paused and said…actually this is for my cousin’s son—he was just diagnosed with leukemia yesterday. Saying those words out loud was physically painful. Our family’s new reality seems surreal. I never dreamed I’d be walking around a toy store looking for gifts to comfort and distract my cousin’s darling, smiley, 21-month-old son. But here we are.

We all know how heartbreaking and scary cancer is. We’re aware of the devastation it causes and the havoc it reeks on thousands of families every single day. When this disease chooses to present in a child, a baby, it rips your heart out and reminds you of how fragile life is.

I come from a big, Greek family. We are incredibly close. Our friends even know who our cousins are. All our lives are intertwined in a beautiful way. Everyone is always amazed at the tight bond we share with one another, often not letting a day go by without being in contact. It’s all I’ve known my whole life. At times, many of us take this closeness for granted—because it’s our norm. When the going gets tough though, our family rallies like no other.

When we got the call March 19th that my cousin Nicole’s sweet boy Lukas was diagnosed with ALL (acute lymphoblastic leukemia) my mom and I let out deep guttural cries. It felt like an out of body experience. The tears poured down our faces. Life stopped in that moment. My husband had to run our 23-month-old son upstairs so he wouldn’t witness our despair. Our boys are only eight weeks apart. Our boys were supposed to have a play date two days later. But now, sweet Lukas was getting chemo in the hospital instead.

That’s how quickly it happened. That’s how fast my cousin’s life changed and flipped upside down. In the blink of a moment—she went from having two perfectly healthy sons—to finding out her baby was in for the fight of his life. A fight that would involve 3.5 years of chemotherapy. A fight that would involve countless nights in the hospital, setbacks, highs and lows with dire consequences, and having to watch your child take on the beast that is cancer.

I sat in the room while the oncologist walked through the treatment plan with my cousin, her husband and my aunt. She spoke gently and calmly. Her confidence was comforting. When she handed over a packet of stapled information with Lukas’s name on the top…followed by (“Acute Lymphoblastic Leukemia” below it) it felt like a punch to the gut. The words on the pages looked more like a college syllabus for an upcoming school year. Each day and treatment listed seemed overwhelming and scary. It’s going to be a long road ahead. A journey like no other. A battle that no child or parent should ever have to fight. A burden too cumbersome for anyone’s shoulders.

When Lukas received his chemo infusion that day, I looked at my cousin Nicole. She held her baby tightly, sobbing in silence as he looked around the room, unaware of the poison getting pumped through his veins. It killed me to see her go through this. It’s truly the unthinkable to watch someone you love hurt so badly as they take on the unknown.

Once you become a parent, these type of tragedies and health crises hit you in a whole different way. They remind us that no one is invincible, and you never know when the tide is going to change. As a parent, your child getting cancer is your worst nightmare. We all wish we could take it from him. Lukas is so young, so helpless. But he’s also so much more.

Lukas is resilient. Lukas is strong. Lukas is brave. Lukas is a fighter. This 25-pound boy, with so much life to live is not going to let cancer take him down. Lukas is going to show each and every one of us the power of prayer, the importance of faith and the strength we can find within ourselves even when we feel weak. He’s going to inspire and implore us to be better. He’s going to give life a whole new perspective. He’s going to thrive. Lukas is going to navigate these unknown waters and open our eyes to the beauty of a feel-good day.

And someday we’re all going to look back on these dark, difficult days and look at him and wonder how we got to this place. Someday Lukas will be free of cancer. Someday he’ll be a little boy who once had cancer. But for now, and always, he’s a warrior. Not only him, but his mom, dad and brother. The war paint is on. The first week of battle is almost over. And from this point forward they and we are all forever changed.

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

March 18, 2019March 18, 20191 Comment

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.

I’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. When 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.

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.

The IBD Parenthood Project: A Guiding Light for Family Planning

March 11, 2019Leave a comment

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

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

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

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

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

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

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

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

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

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

New FDA-approved colonoscopy prep available

March 6, 20194 Comments

This is a sponsored post. Salix Pharmaceuticals compensated me for this post. All opinions are my own. Certain product information has been included to meet regulations.

I’ll always remember the first time. I was 21 years old. I had just been diagnosed with a lifelong condition, for which there is no known cure—Crohn’s disease. In order to confirm the diagnosis, I was told I would need to undergo a colonoscopy during my hospitalization. The prep and the procedure felt like adding insult to injury. I was already dealing with a horrible flare up while coming to grips with the fact that I had a chronic condition. Having to drink a disgusting concoction, while rocking back in forth in pain on the toilet, still feels like a fresh memory. It was nearly 14 years ago.

My current gastroenterologist is all about the annual colonoscopy. Especially now that I’ve had inflammatory bowel disease (IBD) for over a decade. Let me tell you, those 365 days go fast. No matter how many colonoscopies I’ve had, the prep never gets easier. I vomit every single time. I cry. It’s an emotional experience. It’s a reminder that I’m not like the rest of the 35-year-old population. I shouldn’t be needing this test yet. But I do because I have Crohn’s. The prep leading up to the procedure makes me cringe as I write this…and I don’t even need another colonoscopy until early summer.

I know I’m not alone in my feelings about the prep. According to patients’ experiences and reported barriers to colonoscopy, most patients perceived the bowel preparation to be the most burdensome part of colonoscopy. This is where Salix Pharmaceuticals comes in. They market PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride and potassium chloride for oral solution), a bowel prep cleanse with less active ingredient to drink than some other bowel preps. PLENVU is a 1 liter bowel preparation cleanser available in the United States and in clinical studies, more than 66 percent of patients found the taste to be “acceptable” or “very acceptable”. The PLENVU bowel prep is the only FDA-approved prep for either same-day morning-of-colonoscopy* dosing or 2-day split-dosing.

* The “One-Day Morning Dosing Regimen” (as it is labeled in the Prescribing Information) is referred to as “Same-Day Morning-of-Colonoscopy Dosing.”

INDICATIONS

PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride, and potassium chloride for oral solution) is a prescription medication used by adults to clean the colon before a colonoscopy

IMPORTANT SAFETY INFORMATION

Do not take PLENVU® if you have a blockage in your intestine (bowel obstruction), an opening in the wall of your stomach or intestine (bowel perforation), problems with food or fluid emptying from your stomach (gastric retention), a problem with food moving too slowly through your intestines (ileus), a very dilated large intestine, or an allergy to any of the ingredients in PLENVU®.

(See additional Important Safety Information below and click here for full Prescribing Information for PLENVU®.)

Colonoscopies aren’t something that only IBD patients need to worry about. For people at average risk for colorectal cancer, the American Cancer Society recommends a regular screening for adults starting at age 45. According to the CDC, colorectal cancer is the second leading cause of cancer-related deaths in men and women in the U.S. Additionally, American Cancer Society estimates there will be 101,420 new cases of colon cancer and 44,180 cases of rectal cancer in 2019. And because it’s National Colorectal Cancer Awareness Month, if you’re 45 or older, I encourage you to be proactive and vigilant about your health and schedule your colonoscopy today. By getting a routine colonoscopy, you can increase your chances of nipping the disease in the bud, before it’s too late.

Click here to learn more about PLENVU and talk with your doctor and inquire about this new prep. I’ve already done so with my GI. I plan to try PLENVU during my colonoscopy this summer.

PLENVU’s Indications and Important Safety Information:

INDICATION

PLENVU® (polyethylene glycol 3350, sodium ascorbate, sodium sulfate, ascorbic acid, sodium chloride, and potassium chloride for oral solution) is a prescription medication used by adults to clean the colon before a colonoscopy.

IMPORTANT SAFETY INFORMATION

Do not take PLENVU® if you have a blockage in your intestine (bowel obstruction), an opening in the wall of your stomach or intestine (bowel perforation), problems with food or fluid emptying from your stomach (gastric retention), a problem with food moving too slowly through your intestines (ileus), a very dilated large intestine, or an allergy to any of the ingredients in PLENVU®.
It is important to drink sufficient clear liquids before, during, and after the use of PLENVU®. Be sure to consume additional clear liquids after the first dose and second dose of PLENVU®. Stop drinking liquids 2 hours prior to colonoscopy.
Before you take PLENVU®, talk to your doctor if you:
- Have problems with serious loss of body fluid (dehydration) and changes in blood salts (electrolytes).
- Have heart problems or take medication that affects your heart. Your doctor may consider obtaining an electrocardiogram (ECG) test if you are at an increased risk for heart rhythm abnormalities.
- Have a history of seizures or take antiseizure medication.
- Have kidney problems or take medication that affects kidney function. Your doctor may want to perform blood testing before and after your colonoscopy.
- Have a history of stomach or bowel problems, such as ulcerative colitis, a bowel blockage, or a suspected opening in the wall of your stomach or intestine.
- Have problems swallowing, heartburn (gastric reflux), or if you inhale food or fluid into your lungs when eating or drinking (aspirate).
- Have a condition that destroys red blood cells, called glucose-6-phosphate dehydrogenase (G6PD) deficiency.
- Are withdrawing from drinking alcohol.
- Have phenylketonuria (PKU). PLENVU® contains aspartame equivalent to 491 mg of phenylalanine per treatment.
- Are pregnant or plan to become pregnant.
- Are breastfeeding or plan to breastfeed.

PLENVU® may affect how other medications work. Tell your doctor about all other medications (including prescription and nonprescription medicines, vitamins, and herbal supplements) you take before you take PLENVU®. Do not take oral medications within 1 hour before or after starting each dose of PLENVU®.
Symptoms of serious allergic reactions may include skin rash, itching, raised red patches on your skin (hives), swelling of the face, lips, tongue, and throat, and kidney problems.
In clinical studies with PLENVU®, the most common side effects in patients taking PLENVU® were nausea, vomiting, dehydration, and abdominal pain/discomfort.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please click here for full Prescribing Information for PLENVU®.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center

Phone: 1-800-321-4576

Fax: 1-510-595-8183

Email: salixmc@dlss.com

Silencing the Stigma: How one man is using his patient journey to empower others

March 4, 2019March 4, 2019Leave a comment

This week—a guest post by IBD patient advocate Ziyad, from The Grumbling Gut. Ziyad shares how his experience taking on Crohn’s inspired his decision to become a radiographer and show fellow patients they are much more than just a number. I’ll let him take it away…

“Don’t let fear keep you quiet. You have a voice so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence.”

Those words were spoken in an episode of Grey’s Anatomy by Meredith Grey and I couldn’t have put it better myself. I was officially diagnosed with Crohn’s disease in 2007 having spent the previous year experiencing symptoms and not knowing what was going on. My absences from school – and to some extent my social life – didn’t go unnoticed and when asked where I was or if I had to cancel last minute, I’d just give my standard air tight excuse of “something came up last minute”.

Truth be told, I wasn’t ready to tell anyone outside of my family about my diagnosis, so I did the only thing I could – kept it a secret. I was afraid of what people might say, what they might think of me or if they might start treating me differently – I didn’t want to be anything other than the supposedly ‘healthy’ 17-year-old with a ‘normal’ life. As a result, I spent twelve years living with Crohn’s in silence. I was embarrassed, because let’s face it, talking about your bowel habits isn’t the most glamorous topic.

If we fast forward to now and having gone from being so secretive about my IBD to talking about it so openly and sharing my experiences through social media – you may ask “what’s changed?”.

The answer is simple – I’m not afraid anymore. I refuse to let fear keep me quiet.

Using my voice to beat the stigma

It took me a long time to realize that not only do I have voice, but I could use this voice and speak up to beat the stigma that held me back from sharing my story for so long. I also believe there’s no point of speaking up if my actions don’t match what I’m trying to achieve, which is why I started to volunteer for Crohn’s & Colitis UK, the charity giving a voice to people with Crohn’s or Colitis.

Anyone that has IBD knows the impact it can have on your daily life, but my IBD helped shape my career. Having spent a fair share of my time in hospitals being a patient, I got used to the hospital environment and now work as a diagnostic radiographer. My IBD exposed me to the radiography profession early on, having all my x-rays and MRI scans done to diagnose and monitor my disease. Shortly after being diagnosed and referred to a specialist I started the pleasant journey of getting treatment for my Crohn’s.

As everyone and their IBD is different, some medications may work for some and won’t for others so at the time there was a lot of trial and error and it felt like ‘let’s throw what we got at the wall and see what sticks’. Some of these treatments would make me feel even sicker due to the side effects and it really did feel like I was being treated as a list of symptoms and not as a person. Long story short, I changed specialists three times before finding one who treated me like a person.

How being a patient helped guide my career

Having experienced life with Crohn’s first hand has given me incredible insight as to how to provide better care for all the patients that I encounter on a day to day basis. I try to give my patients the opportunity to speak up, use their voice and be heard because of what I went through in the early stages of my IBD diagnosis. It can get busy in hospitals, especially with the increasing patient load and shortage of staff. It can be easy to fall into the ‘conveyor belt’ motion of one in, one out, to try and manage the workload. But it is in these busy moments, where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK, that can make all the difference.

It humanizes the experience for patients and gives them a chance to express themselves. I’ve learned it’s the little things that have the greatest impact in patient care.

My advice to anyone reading this—No matter how tough things get, always find the strength to speak up, because keeping all your pain and worry inside won’t do any good. The more you share your story, the more likely you will inspire someone else to share theirs.

Follow Ziyad on Instagram: @thegrumblinggut, Twitter: @thegrumblinggut, and Facebook: The Grumbling Gut.

lights camera crohn's

an unobstructed view

Month: March 2019