Taking on fatigue as a mom with Crohn’s disease

I hear my baby saying “mama” gleefully from the playpen. Anxious for attention and snuggles. I hear this as I’m sitting on the toilet with the door open, paying the price for the cup of coffee I just consumed. It’s one of those days as a mom with inflammatory bowel disease. The all-encompassing fatigue is taking hold. I knew this the minute my eyes opened, and I heard Reid in his crib, despite a restful eight hours of sleep. If you don’t have IBD you may wonder what I’m talking about.

Let me try my bIMG_6729est to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.

As my husband helps me unload the dishwasher, I tell him, “I’m so fatigued”…he laughs a little and says, “well, you’re 34…you are getting old.” I explain to him it’s my Crohn’s. Sure, I may be in “deep remission”, I haven’t been hospitalized with a flare since my bowel resection surgery in August 2015 (*knocks on all the wood), but that doesn’t mean the disease doesn’t impact my daily life. My husband is amazing and never says anything malicious, but unless you live it, you simply can’t comprehend it.

I’m going to be vulnerable here. Please no judgement. The clothes I washed more than five days ago, are still in the dryer. Each day I told myself I needed to walk down 13 stairs and bring them up, but it felt like too much. This morning as my husband got ready for work, needing his jeans…I remembered…they were still in the dryer. I felt like a failure. As I rocked my son in his nursery today, it took too much out of my legs to be in motion. All I was doing was sitting, his little body on my chest. But the rocking felt like too much. As I laid him down for a nap, I went back and forth in my mind about whether I could muster up the energy to shower. I chose to. Mid-shower, I had a brainstorm to sit down on the seat and take some deep breaths while the warm water hit my body. When I stood up, I honestly couldn’t remember if I had put shampoo in my hair yet or if I had washed my face. Literally no clue. These are just a few examples. But this is the reality of being a mom with IBD.

I started beating myself up over the fact that the past two days I may have overdone it. IMG_6646Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.

Here’s my advice for anyone with chronic illness, specifically IBD, especially the parents out there. remedy-nsmith-stlouis-1204

  1. Try not to beat yourself up over it. This too shall pass. You won’t feel this fatigue every day. As a matter of fact, days ago I had the music playing and I was dancing around with my son as I cleaned the house. I felt SO happy and so energetic. Focus on those times to get you through.
  2. Self-care, self-care, self-care. Whether it’s going to get a massage, exercising, sitting on the couch and enjoying some tea or going to Target to shop by yourself. Do what makes you feel at ease. Do something for yourself every day.
  3. Vocalize your exhaustion. If you don’t communicate your struggles, you won’t receive the comfort and help that you need. You are not admitting failure. You’re not waving a white flag and giving into your disease. Rather, you’re being strong enough to realize, in this moment, on this day, you need a little boost from those around you to get by.
  4. Ask for help. Boy do I struggle with this. But, it’s imperative. Especially for first-time moms. Being a parent is hard work. Being a parent with chronic illness is on a whole different level. Hold your tribe close and call on them when you need them. You won’t regret it.
  5. Rest. It’s ok to lay on the couch if you aren’t feeling up to doing chores. It’s ok to say no to a night out with friends. Give your body what it needs. Listen to it. This fatigue is real and by not listening, you’re only feeding into the problem more. You’ll thank yourself later.

I recently came across a statistic this week on Twitter from the Congress of ECCO (European Crohn’s and Colitis Organization) IMG_6342that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.

Fatigue has a significant impact on the quality of life and needs to be talked about. If you’re like me and feeling fatigued, I hope you feel empowered to share and do what you can to combat it. Just know you are not weak, you are not lazy, fatigue impacts everyone on this journey differently. And most importantly, you are not alone.

 

A Valentine letter for Crohn’s

Yes, you read that title correctly. I used the word ‘Valentine’ and Crohn’s in the same sentence. I’d be lying if I said I would have been able to do that years ago. Hate would have been a more relatable feeling and word. IMG_8476 (1)As Valentine’s Day approaches and love is in the air, I’m choosing to look at my disease with my whole heart and to share my feelings with you.

If it weren’t for my Crohn’s I wouldn’t know my strength.

If it weren’t for my Crohn’s I wouldn’t have my perspective.

If it weren’t for my Crohn’s I wouldn’t know the meaning of a “feel good” day.

If it weren’t for my Crohn’s I wouldn’t be able to empathize with others on the same level.

If it weren’t for my Crohn’s I wouldn’t be able to see people’s true colors.

If it weren’t for my Crohn’s

photo by J Elizabeth Photography www.jelizabethphotos.comI may have ended up marrying a person who really wasn’t about being with someone in sickness and in health.

If it weren’t for my Crohn’s I’d feel invincible and take my health for granted.

If it weren’t for my Crohn’s I wouldn’t be me.

In life there are triumphs and there are challenges. There are stresses and there are successes. There are highs and there are lows. I find embracing the good, the bad and the ugly enables us to reach our potential. The painful, low points are difficult in the moment, but in hindsight they push us to our limits and show us all what we are capable of.

People often ask me if I wish I didn’t have Crohn’s disease. I find it to be a loaded question. I’ve gotten to the point in my patient journey where I wouldn’t change a thing. So much of taking on this chronic illness is your attitude. remedy-nsmith-stlouis-1212There’s no sense in wondering and wishing for something that is not possible. Once you take a deep breath and stop living in your healthy past you come to realize that you were given this hand of cards for a reason.

Your voice, your experience, your journey has the power to inspire. You have the ability to change lives. You have the opportunity to show that invisible illness and everything that comes along with it doesn’t need to destroy your dreams.

While I know some days, weeks and months are going to be treacherous in this journey, do yourself a favor and stop being so hard on yourself. Love yourself. Love all of you. Even the part of you that is broken on the inside. I’ve been through the flare ups and the scares. I’ve overcome pain that causes me to pass out. I’ve weathered the storm of being wheeled into surgery. I’ve done hundreds of injections and blood draws and pokes and prods. At the end of the day, you rise. IMG_6282You take those steps to heal. You focus on getting better. You do all you can to make it through. Crohn’s and any chronic illness for that matter gives you this opportunity over and over. So, while we all tend to have negative feelings about our health and worry about what the next hour will bring, try and pause and stop for a moment. Think about all the beauty and insight it’s provided—and love yourself and your disease for a second.

XOXO,

Natalie

Canceled Plans: Dealing with the unexpected with IBD

Making plans. It’s almost an oxymoron when you battle Crohn’s disease or ulcerative colitis. For the past month or so, I’ve been corresponding with a girl named Amanda. We were brought together through a patient advocacy group known as “The Breakthrough Crew.” One of the organizers told us we should connect. I’m so glad we have. image1 (7)

You know that feeling when you talk to a complete stranger and feel like they’ve been a part of your life and your patient journey since the start? That’s how it is with Amanda. We went from emailing, to texting, to talking on the phone. Our phone conversation felt so comfortable and effortless. She lives in Chicago, I’m from there. We grew up 20 minutes from one another, little did we know our paths would cross in our 30s. This past week, my virtual IBD bestie and I made plans to meet up for lunch halfway in the suburbs.

Unfortunately, days before our lunch plans, Amanda was hospitalized with a flare up. We texted and decided it would be best to change our plans and for me to take a train into the city so she wouldn’t need to drive. We were both so excited. IMG_6057Three days later, at 10 pm the night before we were going to hang out, Amanda was admitted back into the hospital.

This is life with IBD. Making plans and then your disease intervening and saying “not so fast.” This is life when you don’t know what the next hour or day will bring. IBD can rob us of so much of what so many people take for granted. In these moments, this is when friendships within the IBD community mean so much.

While Amanda sits in her hospital bed, we’re able to correspond and be there for one another. I don’t think twice about having my plans change in a matter of moments, it’s almost an expectation. When I heard she was hospitalized, we shifted our plans and rather than lunch and girl talk, I was going to take the train and an Uber to the hospital to meet this girl who I’ve never met, but feel so close to. Unfortunately, her and I both knew rest was what she needed more than anything. And hospital visits, while uplifting, can be exhausting.

When she voices frustrations I too can feel her pain and offer meaningful words of encouragement.

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Amanda and her amazing husband, Rick

When she talks about her incredible husband Rick and how the poor guy wasn’t even given a chair to sit in as she struggled in pain for hours in the ER, it immediately brings me back to moments where my husband had to lay in my hospital bed with me because he too wasn’t given a place to rest.

Since I started sharing my story in 2014…nearly a decade after my diagnosis, I’ve realized how empowering it is to be open, to find comfort in friends—both virtually and in real life—and to know there are so many people out there who can be your lifeline in health and in flare ups. Find your Amanda. Find your friend who gets it. Even if you have yet to meet in person, they can bring you comfort you never realized you needed until it was available.

Amanda and I made plans. They didn’t happen. But, hey…that’s the nature of the beast we call IBD. If it weren’t for IBD, our paths never would have crossed. We’ll try again next month, and the month after, and one of these times the stars and our health journeys will align.

Israel Outdoors offers once in a lifetime Birthright Israel trip for IBD and IBS warriors

Deb Weiner traveled to Israel on her Birthright Israel trip back in 2010, like many young Jewish adults. Except she had Crohn’s disease. The Birthright trip is an important milestone for many young Jewish adults, unfortunately her inflammatory bowel disease created many obstacles. Pic 1Despite making life-long friendships and memories, she felt the challenges of her dietary restrictions, and couldn’t take in all the monumental experiences like her peers.

This is where a trip for people with Inflammatory Bowel Disease (Crohn’s and Colitis), Irritable Bowel Syndrome and non-Celiac gluten sensitivity comes in. It’s a time for young adults to discover new meaning in their personal Jewish identity and connection to Jewish history and culture. IBD is most commonly present in people of Caucasian and Ashkenazic Jewish origin.

I’m so excited to announce that registration for this once in a lifetime trip opens TOMORROW (Jan. 30, 2018)!

Here are some key details:

o   Dates: August 6 – August 17, 2018 (10) day trip

o   Open to residents in the United States and Canada

o   Medical staff will be traveling with participants throughout the trip

o   Refrigeration is available for all injectable medications (including sharps containers)

o   Meals that cater appropriately for all participants

o   More scheduled bathroom breaks

o   Travel accommodations that take additional restrictions (chronic fatigue, joint pain) into consideration

Wonder if you’re eligible to attend? Here are the requirements:

o   Must have at least one parent of recognized Jewish decent

o   Age 18-26 (post-high school)

o   Have not traveled to Israel before on a peer education trip or study program after turning 18

o   Have not lived in Israel after age 12

Pic 2“A Birthright Israel trip includes airfare from major cities, hotels, meals, transportation within Israel, and costs associated with touring the country,” said Deb, who as a Crohn’s patient herself, is helping with the coordination of this program for Israel Outdoors.

Deb remembers wanting to climb to the top of Masada, an ancient fortress that overlooks the Dead Sea, but the climb took place after a very strenuous day, and she didn’t feel well enough for the climb.

“With this trip, no one has to miss out on anything. Accommodations are offered that I would have loved to have benefited from. For instance, for those who aren’t up for the hike, a cable car will take the group to the top of Masada. When it comes to sharing a room, there are less people per room than on a typical Birthright Israel trip, making it easier to maneuver, and taking bathroom turns and whatnot. Participants will be staying with peers who understand what they are going through,” said Deb.Pic 5

The Birthright Israel  trip is considered the most successful Jewish initiative in the world, with more than 600,000 young adults participating. Deb has truly seen her personal experience come full circle. She’s been the young 20-something on the trip, feeling isolated and concerned. Now, nearly eight years later, Deb has the foresight and the knowledge about what young adults just like her need, to make the experience one that is enjoyable and comfortable.

“We want to share an experience and create lasting memories and friendships. There shouldn’t be a reason not to go on this trip, so we are bridging the gap. We want those with IBD, IBS, and non-Celiac gluten sensitivity to have the same great experiences as those who go on Israel Outdoors’ classic Birthright Israel trip,” said Nate Edelstein, North American Director for Israel Outdoors. Pic 3

Click here to register. You are encouraged to apply within the first week of open registration to secure a spot. The maximum trip number is 40 people and applications are accepted via email on a rolling basis. Israel Outdoors hopes to offer this trip every summer and possibly twice a year (summer and winter) if there is enough interest and demand.

 

 

 

 

 

Colonoscopy Prep 101 : Drink it all in

I scheduled my colonoscopy in September and it’s hung over my head ever since. It’s not the procedure that’s bothersome to me, it’s the prep and the worry of the findings. This past week, it happened. I went 2.5 days on a liquid diet (which is easier said than done when you’re a stay at home mom all day) and did the prep. IMG_5348Everyone knows the prep is far from desirable and it doesn’t help when you’re famished. For some reason, this go around was especially difficult on me. I was incredibly nauseated and weak. I vomited multiple times. I could barely get it down.

Luckily, an hour before I started the prep, my mom landed in St. Louis and was able to take care of my baby for me. I honestly don’t know what I would have done without her, as my husband was at work when I needed to start the prep. MOM TIP: Have someone help you, whether it’s a friend or a family member when you have kids. It’s nearly impossible to take care of yourself during this, let alone another person!

The magnesium citrate and I don’t mix well. Even with it cold. With ice. With Sprite. With Zofran to help the nausea. Still awful. Instead of drinking the 64 oz. of Gatorade mixed with 14 servings of Miralax in one hour, it took me seven hours…and I still had about 8 oz. left behind. The morning of the procedure I was supposed to get up three hours before we left for the hospital (3:30 am) and take 10 oz. of magnesium citrate. I woke up with stomach pain at 3, attempted with the prep again…and failed. I gagged the minute it touched my lips. Let’s just say I was not too confident in my how “cleaned” out I was going to be. In the nights leading up, I started to fear inflammation or issues that would change my disease course and plans for future children.

I turned to Instagram for some tricks of the trade when it comes to prepping for joyous colonoscopies and came away with some helpful tips I thought I’d share:

  • If you deal with nausea, ask your GI for a prescription of Zofran going in.
  • If magnesium citrate doesn’t sit well with you, see about taking over the counter Senokot tablets (typically four tabs in the evening and four tabs in the morning).
  • Keep the prep very cold, use ice and a straw.
  • Swish around apple or white cranberry juice and spit it out in the sink if you’re getting sick of the taste.
  • Have some diaper cream, A&D ointment and baby wipes on hand to ease the burden on you bum.
  • Use shot glasses.
  • Lemon popsicles (anything but red or orange is allowed), same goes for Jello.
  • Bone broth or chicken broth.
  • Plan that first meal as something to look forward to. Eyes on the prize, FOOD!
  • Gummy bears—just steer clear of the red and orange ones.
  • Have a good book, a fully charged phone and some magazines on hand.
  • Clean the bathroom beforehand, you’re going to be spending a lot of time in there.

IMG_5372As I sat alone in my hospital gown, waiting for the IV and the procedure I had a few moments to think, pray and reflect about my patient journey. My husband Bobby came back to see me, held my hand, kissed me a few times and I was whisked away. I woke up to the best news! There were no signs of inflammation or active disease and my streak of “remission” continues. I put that word in quotes because I am always hesitant, as my symptoms always come out of left field and blindside me. For now, I am going to bask in this celebratory moment, enjoy every feel good day and take in the relief of knowing I’ve gone through another colonoscopy and passed with flying colors!

Young IBD patient aspires to become Pediatric GI

Madison Harbison. I’ll always remember the first time our paths crossed. IMG_4983I had just gotten off the stage after speaking at the Crohn’s and Colitis Foundation Patient Symposium Event in October. Her and her mom, Michelle, approached me outside of the auditorium. Tears in their eyes. Smiles on their faces. I immediately felt a connection and knew this little girl was something special.

Madison was only three years old when she started experiencing symptoms. Bloody diarrhea was the first indicator. After E.coli and C-diff were ruled out by doctors, this little girl underwent a colonoscopy. Imagine that. Three years old. Drinking the prep. Dealing with everything in the bathroom. And not being able to understand why this was happening or knowing what was wrong with you. Being a little girl, naïve to what it means to have a chronic disease that would be a part of her, for her entire life.

Imagine how overwhelming it felt for her parents. Michelle said it felt like they were torturing their daughter. Madison is now 12 years old. IMG_4985She’s had a total of three colonoscopies, an endoscopy and an MRE. She’s been hospitalized due to flare ups three times. She has three siblings at home, so as she’s in the hospital or going to the doctor, her parents have to care for them as well. There’s a reason for the saying—’it takes a village’… because it really does.

Madison has indeterminate colitis. Her inflammation is centered around her colon. She also battles arthritis that is secondary to her IBD. Just like me, Madison is on Humira injections. Her parents give her the shot—and each time she gets anxious and upset before and after. As a 34-year-old grown woman, I still react the same way at times. So, I can only begin to think what it would feel like for her. Aside from Humira, Madison takes Sulfasalazine, Imuran, Vitamin D, Iron and a multivitamin.

When it comes to advice for fellow parents, Michelle says, “Try to connect with other parents who are going through the same thing. There are “support groups” on Facebook that have helped me so much. Do not give up hope. I have every reason in the world to believe that Madison is going to accomplish everything that she sets out to. This disease is only one part of the amazing person that she is. It does not define her. IMG_4986Also, as a parent of a child with a chronic illness, we are their best advocate. No one knows your child better than you do. If you think that something isn’t quite right, trust your momma instincts!”

When you talk to Madison she radiates strength and resilience. You can see it in her eyes. She’s very mature and well spoken. She says IBD has made her a stronger person. “It’s made me more responsible in the sense of taking my medication, thinking about what foods affect me and always telling my mom if anything is wrong.”

As far as her Humira injection routine (let’s be honest, we all have one!)…her parents take the pen out of the fridge and let it warm up for a few hours, to lessen the sting. Madison likes to use Pinterest on her phone as a distraction. She wipes her leg with the alcohol swab and nods at either her mom or dad so they know to start. IMG_4988Right before the shot, she relaxes her leg, takes a deep breath and pretends she’s anywhere but the living room couch.

Each summer, Madison attends Camp Oasis. It’s a unique experience where kids with IBD have the chance to be on their own, to make decisions and to take responsibility, while being in a safe and compassionate environment. All the campers have IBD. “Camp has really showed me that I am not alone battling this disease. It is the coolest thing to be surrounded by other kids who know and understand what I have experienced.”

Madison doesn’t let her disease hold her down. She’s an avid soccer, basketball and volleyball player. She’s gearing up to take the stage in “Annie” and she excels at dance. This girl does it all.

Guess what she wants to be when she grows up? A Pediatric Gastroenterologist. Madison wants to help kids who are going through what she’s gone through.

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Out to lunch with Madi, taking on IBD together one day at a time.

I can without a doubt say, I know she’ll achieve this goal and follow her dream. She’s a true example of an IBD hero. Someone who hasn’t allowed her disease to rule her life. Someone who looks adversity in the face and says ‘not so fast.’ Someone who I admire and look up to, even though she’s more than 20 years younger than me. If you ever need inspiration—think about Madison during that next Humira shot, think about her when you’re taking that dreadful colonoscopy prep, think of her when you’re getting rolled down to that next CT scan. I know I will.

 

 

 

There for Them: Why AbbVie’s new campaign is far from shameful

I was cuddling my nine-month-old son on the couch when this commercial came across the TV. Before you continue reading, please click the link and watch.

Somber music played and as the one minute clip unfolded, I knew within seconds it was about inflammatory bowel disease…even though there were no words. The imagery, facial expressions and moments hit close to home. IMG_4947I was immediately at a loss for words. But in a good way. I’ve been those people in that commercial. I’ve witnessed family members look at me sympathetically as I excuse myself from the room. I’ve held my stomach and grimaced in pain, doing all I can not to miss a moment of a social gathering. I was recently at the movie theater with my husband, gazing with jealousy at people who could eat popcorn…willing myself not to buy any.

AbbVie is getting mixed reviews about their latest campaign. Some are blasting it on social media calling it “shameful”, “ridiculous”, “a guilt trip”, “disgusting”… the list goes on. To be quite honest, I’m shocked. As a mom who’s battled Crohn’s disease for almost 13 years, this is the first time I’ve seen a commercial about IBD and related to it 100 percent. This isn’t some ploy to try and make people feel guilty for their condition. It’s the reality of what life is like for IBD families. Unless you personally battle IBD or your family member does, you should be hesitant to spout off and share your opinion, as you can’t claim to know what goes on behind closed doors when the illness doesn’t need to be invisible anymore.

This commercial isn’t about making those with chronic illness feel poorly about themselves or guilty about their condition. Rather it’s bringing the truth to the forefront, for all to see. Every other big pharma ad out there shows some picturesque portrayal of someone running off a field, walking on a boardwalk or hiking up a mountain. Sure those with IBD can do those things, but that’s the power of IBD being an invisible illness. We can do those things, with a smile, even if and when we’re hurting inside.

IMG_4744I’ve been on Humira almost 10 years. I don’t need to be sold on the drug. But this campaign means the world to me. It represents what my parents, husband and son endure by my side. This disease impacts more than just the patient. It’s a family affair. When my son is old enough I want him to be empowered by my strength, but able to empathize with my struggles. Thank you, AbbVie for recognizing this and giving the world an inside look at the IBD patient and family experience. The commercial ends with “To be continued”… I can’t wait to see what’s next.

 

5 Tips for dealing with grief while battling IBD

Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.

IMG_2516When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.

On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.

It pains me to write and to say those dreadful words. photo by J Elizabeth Photography www.jelizabethphotos.comI have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.

What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? IMG_9748What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?

I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.

  1. Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
  2. Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
  3. Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal. IMG_4352
  4. Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
  5. If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.

Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.

Wishing you a very merry, healthy Christmas and New Year

Hope everyone had a wonderful Christmas! Sorry about missing my normal Monday post– this holiday season has been bittersweet. My grandmother passed away December 22. She and I were extremely close and it still feels surreal that she is no longer on this earth. Stay tuned for a blog post after the New Year about handling grief while battling IBD.

In the meantime, I thought I would share some holiday cheer from my family to yours. Wishing you a healthy, happy, flare-free year ahead! Thanks for all the love and support you send my way, all year long.

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Bile Acid Malabsorption and Crohn’s disease

Urgency and visits to the bathroom. Not a topic of conversation anyone prefers to talk about. If anything, it’s taboo and people tend to shy away from the subject, especially those who don’t have inflammatory bowel disease. While IBD is so much more than a “bathroom disease”, those of us with Crohn’s disease and ulcerative colitis tend to spend a lot more time on the porcelain throne than others.

If you’re like me, and have had surgery that involved the removal of your small intestine and part of your colon, it’s commonplace for people to have around three to five loose stools a day. Our bodies just don’t have the proper parts to absorb and digest nutrients like others. I was surprised to find out from my GI that going that many times, is par for the course after bowel resection surgery.

IMG_3329When I visited my GI for a routine appointment last week, she told me those with IBD who have surgery oftentimes have an “issue” called Bile Acid Malabsorption (BAM). BAM causes chronic diarrhea that results from your body producing too much bile acid (or bile salt).

In my case—and for anyone else who has the last part of their small intestine removed…our bodies are unable to absorb bile salt. Bile salts help food get digested as it travels through the small bowel. If you’re like me and don’t have your terminal ileum or ileocecal valve—or if it’s diseased, too much bile salt reaches the colon. Our bodies then send water to the colon, which causes diarrhea.

My doctor recommended I start taking Colestipol as needed. IMG_3434This medication is typically a cholesterol medication, but can be used by Crohn’s patients as a bile acid sequestrant. By taking one pill prior to eating each meal, it helps bind bile acids in the intestines and can prevent the need to go make a mad dash for the bathroom immediately after eating.

I had my small bowel resection in August 2015, this is the first I’ve heard of BAM. I wanted to share this knowledge with you, in case you’ve been overwhelmed with the feeling of being tethered to the bathroom at inopportune times. I’ve only been taking Colestipol before dinner for a few days, but it’s given me peace of mind and comfort already. IMG_3576I wasn’t thrilled to add another pill to my patient repertoire and daily regimen (it’s a horse pill!), but this has the ability to be a game-changer.

Obviously, I’m not a doctor. But, if you have Crohn’s in your small intestine, have had a resection and experience several trips to the bathroom a day, inquire about taking a bile acid pill. See if it can help improve your quality of life, too.