Crohnie Travels: Navigating the World with Crohn's Disease

Who’s on YOUR team? IBD & The Power of Community (And a Colonoscopy Buddy!)

2021-10-08T16:40:00.005-04:00

Who's on YOUR team?! This week I talk community, colonoscopy text buddies (yes, this is a thing!), and more with MyCrohnsandColitisTeam. Join my team at bit.ly/mht-crohnietravels to join in the fun!

There’s nothing like a text buddy who’s had as many colonoscopies as you to commiserate with as you prep and send each other memes (my fave is “If 2020 were a drink, it would be a colonoscopy prep”.) Living with Crohn’s / IBD can be isolating (hello poop talk!). But it’s all the more reason why it’s critical to stay connected with family and friends, coworkers, fellow IBD’ers and others along the way.

Feeling a little shy about sharing your diagnosis? You may be surprised! It actually gets easier each time you share. And I’ve found that sharing my own personal health journey has been a source of inspiration to others, as well as a chance for others to share a vulnerable part of their own life.

Who’s on YOUR team?!

Well first and foremost you have to be your own #1 advocate - with your healthcare providers, your wait staff, your gym instructors, your family. You have to be able to speak up for your needs and share what’s going on with your body and your disease. Empower yourself to be brave, open, and specific when it comes to speaking with your team.

My team is composed of my friends and family, my gastroenterologist of almost 30 years, whom I drive three hours one-way to see. My acupuncturist who helps me reset biweekly. My yoga instructors, who teach me restorative poses that help me calm my body. My therapist, who reminds of the gut-brain connections and importance of focusing on both. My faith community. Others in my autoimmune support group. My boss, who helps me with accommodations during times of flares. And one of my besties who always sends memes to make me laugh.

Your team may be composed of a special nurse, a nutritionist, a functional health practitioner. Don’t forget your kitty, your boot camp pals, your neighbors!

After my diagnosis, I quickly learned that one of the most important team members in my life were other IBD’ers. The pediatric nutritionist who treated me shared her own IBD story, and I immediately felt the power of being understood.

You can’t truly, deeply understand Crohn’s unless you’ve lived it.

You can’t understand an ostomy unless you have one.

So, find each other. We’re out there!

IBD is so individualized, everyone’s story through health and flares is unique. There are a million diets out there; try them out and find what works for you then share with others. Get tips on surviving a group trip, a fourth colonoscopy in one year (err, wait that’s me), navigating surgery and more.

Along the way, remember what works for you may not be the right match for another IBD’er.

We must respect each other, as well as our different journeys. So let’s get started – find me and join my team!

Crohnies unite!

Travel Burnout Remedies 101

2019-02-24T14:01:00.000-05:00

My entire blog Crohnie Travels is centered around one of the greatest loves of my life - travel. So how could I write a post about "travel burnout"? Like most things in life, sometimes you need a respite from what you love so you can recharge and rest, particularly if you live with an autoimmune disorder. I love my family, yet sometimes I need alone time. I love my daily workout, but sometimes my body needs rest more. I love travel, but sometimes I need to recharge and have a staycation.

I've been quiet on the blog because I've traveled for five weeks straight, all while 6 months pregnant and not sleeping well. Thankfully my IBD is maintaining, although I worry about tipping the balance. Here's how I'm taking care of myself on the handful of days I'm home between trips:

Let Others Help!

It's true in pregnancy, and it's certainly true with Crohn's / IBD. Sometimes we just need help. When the exhaustion sets in, the pain is intense, and the discomfort unending, we need to be able to let family, friends, and neighbors help. I know that's easier said than done. A well meaning friend could bring over a dish that she thought she saw you eat a couple of months ago, but now your system can't tolerate it. Be specific and clear. If a friend calls and offers to help, ask them to stop by the store and pick up some Ensure shakes, bananas, and/or other foods you can tolerate. Let your spouse pick up the slack, and don't let the guilt preventing you from accepting well-meaning offers of help. I've often felt guilty about my husband picking up extra chores, but because he's not traveling through the week like me, he has more energy to do so. He's also learned I have a hard time asking for help, so he tries to listen to my hinting, which is a weakness of mine I am working on!

Rest, rest, rest!

If you're living with an autoimmune disorder, you already know that rest is critical to health. Yet when a flare kicks in, quality sleep can be elusive. Too many nighttime cramps or trips to the bathroom can be disruptive to the restorative power of deep sleep. These past few weeks on the day or two that I've been home, I've slept as much as possible - setting up my room with all the sleep hygiene techniques, such as closed drapes, no blue lights or night lights, sleep mask, ear plugs, white noise, and comfortable pillows. Then during the day I work on my laptop from bed, staying elevated and encouraging ongoing slower days. The temptation to catch up on everything is strong, but your health is more important.

Splurge

Can you afford (or have frequent flier miles for) an upgrade to business class or a bulkhead seat so you can get more sleep on that long flight? Or upgrade your hotel to an AirBnB with a kitchen so you can prepare all your meals instead of eating out? If at home, how about hiring a night doula for your baby or young child so you can have a week of interrupted sleep, or ask a trusted family member to stay with you awhile? Is there a supplement you stopped taking to avoid the extra expense? Whatever you can think of as a splurge, consider it! If you're on the verge of a flare, you may be able to avoid one by bringing in whatever resources are available and within your budget.
I'm going to go and try to take my own advice. Comment below with your tips to avoid travel burnout or a flare!

Crohnies unite!

Bone Broth: Bringing the Gut into Balance

2018-09-08T18:59:00.000-04:00

You can't click on a health site or blog these days without running across the glowing benefits for bone broth. You'd almost be convinced it's the cure to all ailments. Does it live up to the hype? Here's my two cents!

Bone broth has a ton of nutrients, including a great amino acid profile, and is easy to digest, making it perfect for us with IBD. Research shows it helps decrease inflammation in the body, helps heal the gut lining and can potentially even help reduce food sensitivities. And that's not even getting at its ability to help with joint inflammation and overall immune system health.

If you're reading this and thinking, wait, is bone broth different from chicken or beef broth/stock, check out this article to understand the difference.

The primary ingredient in bone broth is collagen, which is why I've chose to supplement with collagen in addition to my daily cup of bone broth. Over the past six months, I've noticed a huge difference in my skin, hair and nails. I even received a compliment from my hair stylist on how lush my hair is! I have actual strong nails for the first time in my life, rather than the broken/brittle ones I've always had. I can only imagine what's happening inside my body with strengthening my gut.

I recommend an organic, pasture-raised option for both. Here's a great recipe to make your own.

Be sure to check with your doctor before making any major changes to your diet.

Crohnies unite!!

My Name is Crohn's -- Err, Sarah

2018-06-05T18:02:00.001-04:00

It's easy to let our disease define us, isn't it? Just the other day, in the blink of my nurse's eye for a doctor's visit I became a list of my medications stumbled over while updating my file. Then ordering dinner the other night, I became the "high maintenance" one. From family outings to hospital stays, eating out to adapting family meals in, living with Crohn's/IBD is a constant reminder that we're different.

You are not your disease.

Let me repeat that.

You are NOT your disease.

I'm a wife, daughter, sister, auntie, avid traveler, bibliophile, yogi, blogger, Christ-follower, and Tar Heel fan whose favorite color is Carolina blue! I also happen to have Crohn's Disease, but I'm done with the days of letting it define me, or even make the Top 10 descriptors of me list.

Some days my disease takes over everything, and I'm forced to adapt my best-laid plans. I never feel of a "normal" energy level. Having been diagnosed at 12, I don't even remember what "normal" feels like 26 years later.

But I am not my disease, and neither are you.

On a day of yet another celebrity suicide, I've been reminded how it's so easy to feel alone. I'm reminded that mental illness can go hand-in-hand with chronic illness. And how weeks or months of being bed-ridden can yield feelings of anxiety and depression like never before. Questions of how long this flare will last, questions of whether your friends/colleagues/significant other will forget about you or change their view of you. Questions of will it get worse.

For the newly diagnosed, I know the fears and worries that keep you up at night.

For those facing surgery or in recovery, the fears and worries of a new normal.

Please, if you ever feel as though your disease, depression, or feelings of despair have taken over, reach out to someone. I'm posting a hotline below. There's many of these out there:

Join a local support group.

Don't suffer in silence.

Crohnies unite!

Acupuncture for Crohn's/IBD

2018-03-28T13:12:00.000-04:00

How many of you have tried alternate therapies to complement the traditional medicine approach for your Crohn's Disease / IBD? I'm talking supplements, from probiotics to Vitamin D, or massage therapy for stress management. I'm guessing most of you have tried at least a probiotic supplement and consider it "normal". Granted, twenty years ago when I was diagnosed, probiotics still fell outside the normal, accepted part of treatments! So while acupuncture - the latest in alternative therapies - may make you nervous to think about, I strongly believe it will become even more widespread and mainstream in the coming years as part of the treatment protocol for a variety of health conditions.

I've been getting biweekly acupuncture treatments for the past 4 years and can say without a doubt it has improved my health, so today I thought I'd address the common hesitations around trying acupuncture! I'm starting with the few concerns I hear most often, but be sure to share your own questions about acupuncture in the comments below.

Think it's quack science?

A study called "Acupuncture Helps Crohn's Disease Patients" published in the journal World of Gastroenterology had some very promising results. It concluded that "acupuncture provided significant therapeutic benefits in patients with active Crohn's disease, beyond the placebo effect, and is therefore an effective and safe treatment." Even more encouraging, researchers also discovered that both lab scores and quality of life scores improved.

For the study, the acupuncture points selected for treatment focused on reducing inflammation in the intestinal tract. Each participant received three treatments per week for a total of 12 weeks. Additionally, moxibustion (moxa) was also used on four acupuncture points on the stomach. Moxa is a traditional technique that uses the smoke from the herb mugwort to penetrate the skin. In this way, it stimulates the body's immune system. Often, the warm smoke provides a pleasant, comforting experience for the patient.

Acupuncture is not going to cure your Crohn's! But for those with mild to moderate Crohn's / IBD it can certainly be a strong component of your overall care plan, working in tandem with medications, diet, supplements, and stress management.

Image courtesy of phaendin at FreeDigitalPhotos.net

Afraid of needles?

It does not hurt! I promise, and I'm a baby when it comes to needles. I regularly cry when getting an IV taken in or out. In fact, I well up and my veins shrink a little just typing that! I have to get the "special chair" when doing blood work at a lab, as most times I pass out. So I promise, if I can do it, you can too!

Acupuncture needles are so incredibly tiny you can't feel them going in. I have occasionally had treatments in tender spots like my ear lobe, where you will feel a tiny prick, but that's rare. Once the needles are in, your body immediately begins to relax and respond.

My acupuncturist discusses my treatment in advance, then applies the needles before turning on some white noise and dimming the lights, leaving you to relax for about 20 minutes. She puts a buzzer in my hand to call her if I need anything. I have friends who regularly fall asleep during this restorative time, but I choose to soak it all in and use it as a time for meditation, prayer, and reflection. Acupuncturists encourage deep, relaxed breathing to prime your body for the most receptive response.

Worried about costs?

Quite a few major insurance carriers cover acupuncture, depending on the diagnosis. Be sure to read the fine print and talk to your insurance company about in-network providers in lieu of just finding a practitioner online. I have fought many insurance battles to get coverage, so be sure to know your rights and advocate for yourself.

In large cities, there are community acupuncture clinics that offer services on a sliding scale.

If you don't have insurance coverage or a local community clinic, consider talking with a practitioner about a payment plan. Many offer discounts for cash payments; others offer discount plans if you buy several treatments in bulk. If you're just starting out, consider a minimum of 6 treatments, biweekly or monthly, and then assess how you feel. You may see such drastic improvement in your health that you budget accordingly.

For me, living with Crohn's has meant exploring every possible facet of life - how best to improve my diet, my stress management, and my overall health. I add acupuncture as one small part of my overall treatment. I encourage each of you to talk to your doctor and check out your local options!

Crohnies unite!

Travelin' on Empty

2018-01-15T17:43:00.000-05:00

I recently traveled abroad to Portugal and Ireland, all while sick with a horrible respiratory infection that would.not.quit! In fact it lasted for three months until I was diagnosed with asthma (yay, me!)

I've written extensively about traveling abroad during a Crohn's flare, which happened most recently on a trip to Scandinavia. However, us Crohnies know that any kind of debilitating health issue plays hand in glove with the state of our IBD. A bad bout of the flu can turn into a flare. Taking antibiotics can cause diarrhea and bleeding. And so on.

What do you do when you've been planning the trip of a lifetime and you fall ill before you leave or while on the adventure?

It's one of the most common questions I get.

My answer is the same each time, and I recognize how it's not the flashy reply or cure-all mantra most people want to hear, but it's the truth:

You carry on.**

**Allow my caveats to be heard first!! You carry on while following ALL instructions and advice of your medical team. If they give you a red light, you must heed the warnings. Canceling a trip is not the end of the world. Buy travel insurance if you worry about having to cancel, but read the fine print for coverages!

**You carry on while pursuing health care abroad as needed. Read my prior posts about how to be prepared for medical visits abroad.

**You carry on while knowing if you have reached your point of stopping, then you stop.

**Listen to your Body!!

Nazare, Portugal

About 10 days before my trip, my fall allergies flared into a sinus infection. Normally I avoid going to the doctor in such situations, and I typically wait a month or more for a respiratory issue. I **hate** taking antibiotics for colds, and I feel they are over-prescribed, so I try to tough it out. However, with a trip around the corner I dragged myself to the doctor after a couple days of worsening symptoms.

Ten days and three doctor visits later, one round of 10-days of antibiotics, and a steroid mini-pill pack, I was still sick and heading to the airport for what was supposed to be an amazing birthday adventure.

I violently coughed the entire 8-hour red-eye flight to London, earning me the dark stare of every nearby passenger trying to sleep. My uber driver glanced in concern at me repeatedly during the hour-long journey from the airport to my friend's flat in the London suburbs. I crashed hard after arriving, sadly missing the entire day of precious time I wanted to spend with her kids before we flew to Dublin the next day. It got so bad I started having a panic attack due to breathing restrictions. Thankfully I was able to access an inhaler I had packed just in case, which provided a little relief.

For the next 5 days, I slept no more than 2-3 hours a night, coughing so violently I kept anyone in nearby rooms awake. Thankfully I was not contagious!

Most importantly, aside from that first day, I didn't let my illness change my plans in any way. I pushed through, stayed hydrated, and enjoyed a girls weekend in Dublin.

Onwards to Portugal, where my symptoms were a wee bit better but still keeping me in the negatives regarding energy levels. My husband met me in Porto, and we traveled together for a week. We kept all plans, excepting I made us dig deeper into our budget for more taxis and certainly more cafe breaks to rest.

My birthday in Sintra, Portugal!!

If you've had IBD for any length of time, you're long accustomed to a lifetime of challenges. Hopefully you're also at peace with it. In my 26+ years with IBD, I've struggled the most when I fall into fits of jealousy, comparing my quality of life with others. That's a lose-lose game. You never know the true goings-on of anyone's life. Cherish your own, with its ups and downs, and avoid comparing your abilities to others.

Traveling with IBD is the same. Whether you're flaring or suffering from another health condition, you will inevitably struggle. You will suffer from exhaustion and depression and all kinds of debilitating ailments. But I firmly believe we are given this precious life to live the best that we can, given our circumstances.

To me that means keep the travel plans.

Take a cab when you get tired.

Binge watch Rick Steves episodes when you have to cancel plans. Know you will get another opportunity. Understand that one trip cancellation doesn't mean it won't ever work out.

Sleep in and skip the museum early admission if it means you're able to walk that city tour later in the day.

Forgive yourself.

Don't compare your journey with others.

And remember, everything is a story.

Evora, Portugal

Crohnies unite!

A Probiotic for Everything! The Future of Treating IBD & Many Other Ailments

2017-11-05T16:34:00.001-05:00

I've just finished "Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain - For Life," and it's absolutely blown my mind! I have read extensively on autoimmune diseases and natural treatments, diets, and everything in between, and this book has been one of the most intriguing in recent years. I'm including my top 3 takeaways so you can determine if it should be next on your to-read list!

1. The power of probiotics...

I've been taking probiotics since the mid-1990's, thanks to my gastroenterologist's foresight during a time they were never discussed as being relevant to IBD treatment. Nowadays, probiotics are touted by everyone, found anywhere and everywhere, and for good reason - our gut microbiome's health is key to our own health and longevity.

Towards the end of the book, Dr. Perlmutter quotes a leading IBD researcher who daydreams about a hypothetical future where our drug stores are filled with various probiotic strands for specific disorders - everything from trouble sleeping, losing weight, or managing IBD.

I eat yogurt every day like it's going out of style, but now I'm going to branch out and try kimchi and kombucha. He also recommends kefir, which I love! If you can't stand the bitter taste, add just a bit to a protein smoothie. Yesterday I even bought some (*gasp*) sauerkraut at the grocery store.

To manage certain conditions or help after a lengthy course of antibiotics, Dr. Perlmutter even recommends a probiotic enema 3 times a week for 4-6 weeks -- in consultation with your doctor.

2. Prebiotics... probiotics' little cousin :)

I've been a probiotic fiend for most of my life, but I am the first to admit to neglecting prebiotics, which nurture and sustain your microbiome's probiotics. Examples include acacia gum, raw chicory root, dandelion greens, onions, leeks and asparagus.

Now, can we just pause a second? Who knew onions had prebiotics? If so, you get the Reader of the Month award!

3. Going gluten-free helps Crohn's

Dr. Perlmutter strongly recommends going gluten-free for those with IBD or other health condition. I know, I know... many of us still cringe at this suggestion and wish it were a passing fad, because in reality we're deeply afraid of the complete lifestyle overhaul and dietary changes. Trust me, that was me at one time! However, I can personally testify that going gluten-free in January 2013 was the best decision I've ever made for my health. Yes, it took months of spending hours in the grocery store reading labels to the point I thought they would ask if I was lost. And hours stumbling over recipes for conversions and new ideas, but once you find your path, it becomes second nature. I promise!

Read the abstract of his recent study on gluten-free and Crohn's here.

I hope my 3 take-away's are enough for you to check out the book or audio-book to learn more. I'm only scratching the surface, as Dr. Perlmutter writes extensively of the latest research on gut health and Alzheimer's, Parkinson's, Autism, ADHD, and Multiple Sclerosis, among other neurological conditions. If you have a special interest in any of these diseases or have loved ones suffering, you will want to run to the store (or click quickly online, ha!) and get a copy ASAP.

Regardless of your thoughts on the book or his suggestions, becoming a proactive researcher and spokesperson for one's health is the most important skill of all. So if this isn't your cup of kombucha tea, spend some time browsing books online or at your local library and find your own path to health. Knowledge is power!

Crohnies unite!

"Best in Show" Blog Nomination! Please take a moment to endorse me!

2017-09-05T17:34:00.002-04:00

I am excited to announce that Crohnie Travels has been nominated for the WEGO Health "Best in Show" blog award in the 6th Annual WEGO Health Awards.

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities - but often without recognition.

I created Crohnie Travels to be a positive voice for IBD while I was flaring. Everywhere I turned there seemed to be a void of resources and go-to information for traveling with Crohn's. I decided to step in and help as much as I could. It means a lot for this blog to be recognized and for the supportiveness of each of my dear readers! Many thanks to those who nominated me for this honor!

This year, the 16 WEGO Health Award winners will be honored at the 5th Annual Patient Advocacy Summit in Washington, DC October 23rd and 24th, 2017. I would love to be there representing the IBD community!

If you’d like more information about the summit, you can learn more here. I’m now looking to my incredibly supportive network to help endorse me for this award. There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badge located on the main page of Crohnie Travels.

2) Or, click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

If I have ever supported you, made you laugh, or inspired you to keep fighting - please consider endorsing me for this award.

Thank you! Crohnies unite!

There Are No Easy Answers - Traveling with a Flare Part II

2017-07-31T15:47:00.001-04:00

One of the most frequent questions I get is about how to travel with a flare. Check out the first part of my post, describing a trip to Scandinavia with a flare. Flying overseas made it worst and was extremely painful. I had not brought along a copy of my prescriptions in the haste of packing while dealing with the flare. So many issues right from the start!

Part II picks up with what happens when you're on the ground in a new city or country, all while flaring.

Selecting the Right Accommodation - Do Your Homework!

As I've written about in the past, make sure you've already lined up accommodations, as you don't want to be jetlagged in a new city and trying to find a hotel. Preferably you've followed advice from my earlier posts to book an apartment so you have access to a kitchen and possibly even an extra sleeping area.

Having a kitchen on hand allows Crohnie travelers to prepare their own foods in the privacy and comfort of their apartment, rather than having to face a new set of culinary adventures while flaring. As soon as I check into an apartment and unpack, my husband and I always head to the closest market, corner store, or grocery. Stock up on plenty of still water (you do NOT want to drink local water regardless of where you are as different mineral content can be hard on the GI system) as well as foods safe for you. That's personal preference, as IBD do's and don't's in the food realm are so personalized to our individual disease. For me, it's gobs of greek yogurt, gluten-free crackers, eggs, cheeses and protein bars. Get what works for you.

Make sure you don't get sparkling bottled water, which is very prevalent in the rest of the world. It will cause major bloating and discomfort!! If in doubt, ask the clerk. I can't tell you how many countries, I've had clerks say "Gas? Or no gas?" NO GAS!! Get still water. Trust me!!

Ideally, you will be able to enjoy breakfast in your apartment and return for lunch or even pack a picnic lunch if you're not flaring.

Eating in the privacy of your own apartment also allows for extra bathroom time. If your fellow travelers are itching to get to the next site or destination, make plans in advance on a meet-up time as well as a Plan-B if you are still not feeling up to it. Yes, this is the trip to go all-in and plan for phones set to allow texts and data, so you can communicate across your traveling group when separated. Contact your cell provider in the weeks before you leave to discuss plan options, most of which are quite affordable these days! Make sure the cell provider also coaches you on how to change various settings on your phone to ensure you don't go over on data (e.g., ensure your cellular data is set to "off" or only when on wifi). Almost all hotels, apartments and hostels have wifi with a password in the room or your check-in materials, although sometimes the signal is weak. Check the lobby or find out where the router is for a better chance of a solid signal. The pre-planning is worth it! A flaring traveler may not be up for keeping pace with the rest of the group. If you're able to split up with an easy way to keep in touch, you'll be more likely to make wiser decisions on when to rest and when to re-join.

Having an apartment with an extra sleeping space (many have sofa beds or extra bedrooms) also allows the flaring traveler to have extra privacy and space to rest without interrupting the rest of the family or friends group. Being able to close off the bedroom and nap extra hours while others catch up and enjoy the commons area and kitchen is ideal. Have a white noise app pre-loaded on your phone to drown out background noise.

TLC Travel

Traveling while flaring comes with additional expense in my opinion, but it is well worth it. In some countries apartments can be found at similar rates as hotels. If you're the backpacking hostel type, splurge on a private room if available. Err on the side of hostels that cost a little more but have better amenities - you may feel better with air conditioning, a private bathroom (or shared with fewer people), a large kitchen, and a private or smaller room, rather than the mega-hostel sea of 40 bunk beds without air conditioning, massive commons bathrooms, and no public kitchen.

Plan for more use of public transportation, taxis/ubers, and less walking. Save your energy for enjoying the tourist sites rather than using it up to walk there and being too tired to enjoy it. Traveling while flaring, I've skipped climbing hundreds of stairs for a view point so I could rest while my husband enjoyed and brought back pictures for me. Prioritize your experience, and please be kind to yourself - don't worry if you can't see everything! Remind yourself you'll return one day.

Bathrooms, Medication, Physician/Hospital Access

I've already written extensively about many other topics relevant to traveling while flaring, including how to find bathrooms while traveling. Check out this post on bathrooms.

Contact your own insurance provider for coverage information while traveling and have lists of in-network providers with you. Be prepared with advice from the insurance on what to expect for pricing in-network and out-of-network. Consider taking out supplemental travel insurance, but be sure you have a travel agent or someone qualified to explain the plan.

Trust yourself. If you visit a medical facility and feel uncomfortable or spend a concerning amount of time explaining what Crohn's Disease is to the medical staff, ask to see a different provider, or worst case - leave (of course handling any payment owed) and start over. This isn't a time for niceties or doubt. I think all of us Crohnies can tell in just a couple of minutes with a health care provider how familiar they are with Crohn's.

What's Next for Part III?

Let me know what questions you have about traveling while flaring!

Crohnies unite!

The Airport Shuffle....

2017-06-11T20:25:00.000-04:00

If I had to name a new dance for Crohnies I'd dub it the "Airport Shuffle" - it's a tale of maddeningly pacing between food courts hoping, just hoping, that around the next corner or in the next terminal there's a better food option for managing IBD. Unfortunately, in most cases there's only a couple of good, healthy options (if any!!). Often times busy travelers don't have the luxury of chasing after them with tight layovers and busy schedules.

What's a Crohnie traveler to do?!

Step one: ALWAYS pack plenty of snacks, including significant protein, which is most satiating. Find YOUR protein bar - the one that works with your system and tastes decent enough. It was hard for me to find good bars that are nut-free and soy-free - two of my no-no's. I'm partial to Simply Protein whey protein bars and Oatmega bars. Once you find a bar that works, buy it in bulk if possible so you never run out. Have one with you wherever you go to fight food cravings and avoid the risk of the easy way-out splurge on something that may later cause symptoms.

Step two: Pack your lunch if possible. For several hours of flying, I typically bring a few protein bars and other small snack items, such as a banana, rice crackers, a small packet of nut butter (e.g., Justin's brand sample-size packet). Other Crohnies may outdo me and show up with a pre-made salad (no dressing) or sandwich tucked away for the right moment. Go with what works for your lifestyle. Just don't expect to get a decent Crohn's friendly meal on the plane. Even if you request a gluten-free meal, as I did once on a flight to New Zealand, you may just get a spicy curry, as I did, and promptly go without.

Chicago!

Step three: When all else fails, snacks are depleted and you MUST eat at an airport restaurant, plan accordingly. Allow enough time in your layover if possible to visit a pre-planned healthy spot in the terminal. All airports have their full list of dining options online these days, with handy downloadable maps. Last weekend in Chicago, my friend and I found a build your own burrito type spot, and I was able to politely ask for a naked bowl of just rice, chicken, lettuce and cheese, which works for me. It was even cheaper than the ready meals! This was in the midst of hot dogs, pizza, burgers, heavy italian and many other Crohn's unfriendly spots. I was grateful and lucky to find something that works. One time in London I stumbled upon a higher-end cocktail bar that also offered smoked salmon and cheese plates, which was wonderful!

Follow your gut and most of all resist temptation. When jetlagged and overwhelmed with busy schedules and ladened with luggage it's easy to just go for the first food kiosk that you pass by. If you always travel prepared, you'll avoid those moments of weakness!

Crohnies unite!

Crohnie Travels Blog Honored By Healthline!

2017-05-14T16:18:00.003-04:00

I'm honored to share on this World IBD Week that my blog has been named one of the Best Crohn's Disease Blogs of 2017! Healthline's editors selected each winner based on their reach to educate, inspire, and empower their readers with frequent updates and high quality information.

Tremendous thanks to Healthline for this award! I am grateful and inspired to continue this journey with each of you. After all, we are learning how to live with Crohn's Disease/IBD together.

For other great Crohn's blogs, check out the winners list.

Crohnies unite!

Subtlety Doesn't Work with Crohn's

2017-04-15T18:22:00.001-04:00

Many of us suffering from invisible illnesses like Crohn's Disease / IBD feel like we're constantly misunderstood by others - even our own friends, colleagues and family members, much less the general public or average Joe whom we encounter in day to day life. After all, we look fine on the outside, so how could others know we feel like keeling over on the inside? How would someone know that we'd spent 4 hours in the night laying on the cool tile of our bathroom floor? Or face hours of agony, joint pain, steroid rage, depression and fear during a disease flare?

My top 2 pet peeve remarks about my invisible illness:

"You're such a picky eater!" <<implying a certain lack of sophistication, or a certain je ne sais quoi naivete about the world>>

"You don't look sick." <<implying my lack of well-being is all in my head or that I'm exaggerating how I feel for sympathy or, worst yet, hypochondria>>

We've all heard it, right? Countless times.

It's easy to blame the "other" in life. But to be honest, most people just don't know what it's like unless at some point in their lives they've faced an invisible illness. One of my closest friends recently apologized to me after her Lyme Disease diagnosis, saying she'd never really understood what it was like for me, with my energy levels and abilities impaired. She didn't need to apologize, but it was moving and validating that she was kind enough to do so.

It's up to us to educate others.

It's up to us to express what we need - to assert ourselves and not be afraid of what the receiver says.

Next time you hear, "you're such a picky eater," don't be afraid to reply: "I actually love (fill in the blank, it could be nuts, beef, raw fruits/veggies). I just can't have them because I have Crohn's Disease, which affects my ability to safely digest certain foods. Please enjoy some for me!"

Yup. The raw truth.

Who cares if Crohn's is unpleasant to talk about? Who cares if we're at a dinner table and it's considered a faux pas to discuss digestion? Those who matter won't care, and those who care don't matter.

Next time you hear, "You don't look sick," take the opportunity to explain invisible illnesses or use spoon theory to describe your day. I often reply, "I have an autoimmune disease with debilitating symptoms all throughout my body. I know I look fine on the outside, but I have good days and bad days, and today is a bad day with lots of pain and discomfort. I appreciate your understanding."

Subtlety doesn't work with Crohn's. We have to assert ourselves - even when that goes against our nature. I don't like to draw attention to myself, so when a waiter balks at my order in front of a business luncheon with important clients, I'm embarrassed. But many times, when I explain to others that I have Crohn's and it's not about dietary pickiness, often times someone in the group says they know a friend, family member or colleague with the disease. It can even break the ice if you can laugh at yourself and not be afraid to educate others without feeling shame.

Once you get past the first time of asserting yourself, it gets a tiny bit easier every time. Just remember there are so many of us Crohnies out there facing similar conversations all the time, and we're all supporting each other. If I can do it, trust me - you can do it!

Crohnies unite!

Grief/Loss + Crohn's

2017-02-19T18:14:00.001-05:00

I experienced the loss of my beloved pet of nearly 16 years a few weeks ago. It's thrown me into a tailspin of grief and loss, all the while struggling to ensure my health doesn't spiral along with my heart. I thought some of what I was experiencing wasn't normal; that is, until I spoke with a friend who has an autoimmune disease and shared that when he lost his beloved dog, his grief manifested in such a severe autoimmune flare-up he had to take a six-month leave of absence from work. Having a disease that is affected by stress and anxiety can be a recipe for disaster during times of extreme grief and loss.

I've learned a few lessons already that I hope will help others in difficult times:

1. Set Alarm Reminders for Medication

Especially in the first week of deep grief, I was very absent-minded and overcome with brain fog from the sorrow. It's all too easy to forget taking medications during these rough days, but all the more important we make sure we do! I found that setting an alarm on my phone helped. I also put a week's worth of medication into a pillbox as a visual reminder and placed the pillbox where I would see it every morning.

2. Do Everything You Don't Want to Do!

Not hungry/thirsty? Don't feel like exercising? It's ok to experience normal surges in emotions that include lethargy, lack of interest in food, and indecisiveness. I allowed myself a week of truly rejecting anything and everything except for the bare minimum. I skipped breakfast and lunch and only ate dinner because my husband insisted. I stayed dehydrated. Denying myself regular meals and hydration only made me weaker and more emotional. I don't recommend it! Managing Crohn's requires balanced nutrition for our health and more water than most! Do what you need to do those first few days, but please make sure you soon start back taking care of yourself. Keep a food diary and ask a loved one to remind you to eat/drink water if need be.

3. Seek Help

Did you know headaches, fatigue, shortness of breath, dizziness, tight chest, and stomach aches are all normal symptoms of grief? Although I was prepared for the emotional/mental symptoms, I had not realized or anticipated the very real physical side effects. It's scary when you aren't fully aware of what's happening in your body, and when you add managing an autoimmune disease to the mix it can be downright dangerous to our health. Please seek help in dealing with your grief, whether meeting with a grief counselor, support group, or trusted circle of friends or loved ones. You don't have to do this alone!

Crohnies unite!

Holiday Self-Care - Top 5 Tips for Stressed Out Crohnies!

2016-12-11T21:10:00.003-05:00

'Tis the season for stress, ranging from anxiety bubbling beneath the surface to full blown depression, and everything in between. The days are dark and long. The food options at holiday parties are frightening. Fa-la-la!

It's important as Crohnies to discover our individual path to taking extra special care of ourselves during seasons of heightened stress and demands on our bodies. It's not just the holidays. Maybe you're a new parent. Or starting a new job. Whatever your stressful season, make sure you find time for healthy ways to decompress and unwind.

1. Yoga

Whether you're a man or woman, old or young, flexible or inflexible, athletic or out of shape - find your path to a yoga practice. Trust me on this one. It will change your life. I strongly encourage beginners, the inflexible, or apprehensive readers to specifically seek out "beginner" yoga, "gentle" yoga, "restorative" yoga, or "yin" yoga. You must have a teacher. Don't try YouTube or DVD's while starting out. I make a 75-minute restorative yoga practice part of my Sunday night ritual. It is MY time to carve space, decompress from a hectic weekend, and prepare for the coming week.

2. Radio/News OFF

You simply must turn off the incessant radio and television chatter to find peace. Yes, there is a time and place for it, and I'm not saying to totally disconnect. I have gotten so sucked into the 24/7 chatter in recent months that I have far higher anxiety than normal. I have to find space to take breaks and moderate my exposure. The news will be there later. Your health is far more important, and living in a constant "fight or flight" state of heightened adrenaline is not good for managing autoimmune disease.

I have given up talk radio for podcasts - check them out and find your faves! Whether you're an avid traveler or spiritual or love to cook - there is a podcast for you! My faves are Rick Steves (travel), Serial (for fun), Chris Kresser (integrative medicine) and my local church.

3. Meditative Walking

I find long walks set to a meditative app like "Calm" help me reset my stressed out state. Yours may be a long hike with your dog, or a zumba class. Whatever it may be, write it in your calendar. It's far too easy to come up with excuses to skip out. Your body and mind will thank you!

4. Online Shopping

Who needs the crowds and the extra germs of packed malls and shopping centers? Not me. I do about 80% of my Christmas shopping online. From the comfort of my couch, while wearing my pajamas with my kitty curled next to me. Don't discount this as an insignificant self-care technique! How we spend our days greatly impacts our health, and wouldn't you rather have extra time for self-care than standing in a return line?

5. Healthy Snacks

My determination to eat healthy is tested during the holidays, when all sorts of Crohn's no-no's show up everywhere - from the work break room to holiday parties to my own kitchen (thanks hubs! :/). I keep a strict meal and snack regimen during the holidays so I'm less likely to succumb to bad choices. And I always pack healthy snacks with me wherever I go. You never know when that shopping trip that was supposed to be an hour turns into 6 or you arrive starving at the office holiday party which has nothing you can eat! Ladies, it's so easy for us to hide ziplocs of snacks in our purses inconspicuously. Guys, try keeping some in your desk at work and also in your car. Tuck a small protein bar in your coat pocket.

Your list may be different than mine, and that's the beauty of self-care! Find what works for you - and make a note in your calendar to devote time.

Crohnies unite!

Luggage: 3 Tips for Packing for a Trip with Crohn's!

2016-10-22T16:04:00.001-04:00

I have written several blogs on traveling with Crohn's that you should first read on general planning and food safety and another on bathroom access, food options, and planning your medication. I also have written about additional challenges when traveling while flaring.

Now, all caught up?

Ok, let's talk specifically about luggage!

Let's get real, because I'm going to be straight with you. Once I learned to travel properly with Crohn's, literally HALF my luggage is filled with food and medication. Yes, HALF.

I pack tons of snacks - protein bars, packets of protein smoothies, rice crackers, and other non-perishable foods. How much you take depends on where you are traveling. Are you going to a third-world country? Bring a small roller bag just of food. Are you traveling to Europe? You'll be fine with a box of protein bars and some other snacks. Plan how much you need for each day and multiply times the number of days. It's easy to look at a pile of food and think it will be enough - until you break it down by day.

I also use twice daily mesalamine enemas, which take up massive amounts of room. If I'm feeling brave and well, I'll nix those for steroid suppositories. However, I do better with the enemas, so I end up filling half a full size piece of luggage with... enemas!! Woot woot.

Here's some tips for how I manage:

1. Plan to do laundry!

If you are prioritizing appropriately, having enough food and medication is far more important than that extra pair of shoes or more clothes. You can and should plan on laundry. Most hotels and hostels offer laundry service or have self-service options available. Or rent an apartment! I always stock up on travel-sized detergent packs (be sure to put in a ziploc in case they break open) so that I don't have to spend time buying detergent overseas. If there aren't laundry options at your hotel, before you leave be sure to look online for nearby laundromats. Note that I said before you go. Don't waste precious travel time while on your trip on tasks you could do beforehand.

When push comes to shove, you can always do laundry in a sink and hang dry. Pack a clothesline, clips, and detergent. Ideally this can be done every 2-3 days. Or if you're like me you procrastinate and end up 6-7 days into a trip, wasting half a day doing the laundry. It takes much longer than you imagine!!

One key step in doing laundry in your sink is to roll the clothes in towels after you wash them. The towels absorb a ton of water helping them to dry faster.

2. Plan on Cabs/Uber when arriving/exiting a city

You will have bigger, heavier bags than your travel partner. Or if you are solo, you're most likely looking at a large roller bag, a backpack, and a totebag or second handbag. All filled to the brim. At least in the beginning of your trip, when you have the most food and meds with you.

You will be tired.

Say it aloud with me: You will be tired.

Plan within your budgetary constraints on enough money to cab or uber when you are arriving in or exiting a city. That is always when you are most harried and tired before/after a long travel day. It's also prime time to get lost! You don't want to be wandering around in a new city trying to find your hotel when your energy levels are nil. Trust me, I've been there / done that far too many times.

Just do it. You'll thank me later.

If you're like me and have a partner of regular health who has boundless energy, this will require a delicate conversation. Or two.

Husband: But it's only a half mile! "X" number of city blocks! We'll be fine, I know exactly where the hotel is.

Me: Did you see it also involves crossing 12 lanes of traffic and walking straight uphill? And that it's going to be raining?

Husband: We'll be fine! Save money, get a workout, no reason to take a cab!

Me: I love you, dearest, but I am at my weakest when we're traveling - using all my energy to make it through each wonderful day brimming with activity and living outside my comfort zones. I'd rather use my last bit of energy to enjoy a city with you. I know you're strong and adventurous and laugh at the thought of needing a cab. But let's do this for me. We'll have a better time together if I feel stronger and not exhausted by the time we get to the hotel.

3. For adventurers, consider a porter service

If you are hiking, trekking, or following an otherwise very ambitious itinerary, consider using a porter service that will pick up your bags and take them to a pre-determined destination. For example, my husband and I recently traveled in Norwegian fjord country, which involved lots of difficult dashes to catch trains, buses, etc... We opted to have a porter take one of our suitcases to our hotel three days out. That allowed us more flexibility and freedom to enjoy our travel days without being so encumbered by all our heavy luggage.

4. Enjoy shopping!

Look on the bright side when you are sighing over mounds of medication, food, and other necessities for your trip. As your trip progresses and you use food/meds, you will start getting tons of lovely extra room in your suitcase!! Perfect to amp up your shopping and take home lots of goodies that most travelers can't squeeze into their luggage! Smug smile and shrug of shoulders! That's just us Crohnies - always thinking ahead!

Happy travels - Crohnies unite!

There Are No Easy Answers - Traveling with a Flare, Part 1

2016-09-22T21:46:00.001-04:00

I recently returned from a glorious two weeks in Scandinavia, all while experiencing an active flare of Crohn's Disease. The most common question I get from readers is "how do I travel while experiencing a flare"? I understand wanting specifics and details of what to expect. But, friends, let me tell you from first-hand experience - there are no easy answers. I'm humbled every time my disease surprises me, taking me to a darker place, a new pain, a threat to my hopes for the day. And every country is different, every city, every traveler's experience is different.

There are no easy answers.

The answer is that you find out as you go along.

You do your best to prepare.

But most of all -- you don't let Crohn's/IBD stop you from traveling. Life is too short, and this world is painstakingly beautiful. My dear friends, it is at our doorstep, and our challenge is to listen to the call of our dreams, flaring or not.

My flare started with my monthly cycle, and in the days before leaving, I was experiencing extreme pain, intestinal bleeding, fevers - all the bad stuff. I was in denial up until the morning of my departure, when I forced myself to call my doctor for prescriptions for steroids and antibiotics.

That's a fun one! Getting through to a nurse, and then getting through to a doctor, and then getting through to a pharmacist to fill prescriptions mere hours before an international flight.

Did I mention I also ended up in urgent care that day - not for my Crohn's, but for an infection in my leg?

We almost missed our flight. My carry-on was overflowing with medications - some of which I hoped I would never need to take. But as you've read on my blog before, it's far better to be prepared. It's much harder to handle these needs overseas, so if you are at any question of needing a medication - take it with you!

In my haste to not miss our flight, I forgot to put a copy of my prescription with my mesalamine enemas, which I had packed 14 in a ziploc bag in my carry-on. I was prepared to declare the bag as medical in the security line. I was prepared to face additional scrutiny, and rightly so. That much liquid in a bag looks suspicious, indeed! I get it.

I was not prepared for what went down in one of the busiest airports in the world, while actively flaring and having not slept a wink on an 8 hour overnight flight.

I was bleary-eyed and weak, dashing to bathrooms and wanting to crumple over in pain. But I was faced with endless lines, corralling travelers through the airport like cattle, only to end up tagged at security for a review of my carry-on. It was crowded, and I was overheated. Throngs of crowds pushed against me, all waiting for their bags to receive additional screening. A French family was out of control with their stress of missing a flight, kids crying, flailing in front of us. A group of surly teenagers waited on a friend, all clustered at the security desk.

Then my bag was called, and I was immediately asked to explain what the enemas were and why I needed them.

I looked pleadingly at my husband, the shame and embarrassment creeping up my flushed, feverish face, as at least a dozen people stood all listening and staring at me.

I tried to explain. I showed the receipt for the prescription.

The security guard was belligerent and insisted I needed the actual prescription to be able to keep it.
At the threat of losing my meds, I started crying and begged, "please, sir, I need these to live. I have to have them."

My hysteria was not a good picture, and security staff are understandably in a difficult position keeping millions of fliers safe on a daily basis. I felt the teenagers laughing and staring, everyone in my business, as the guard held up the bag of my enemas.

"Please, this is humiliating. Can we please have a private discussion?" I finally asked, remembering my rights. As if I'd said the magic word, two security guards promptly escorted my husband and me to a private room. There, more calmly, I was able to produce additional medical paperwork sufficient enough to see me through to keep the medication.

Lesson #2 - ALWAYS have a copy of your prescriptions with you!

As we left the secured room, my exhaustion, jet lag, Crohn's pains, and dehydration washed over me in waves, and I completely lost it. My husband guided me through endless crowds until we could find a slightly more private place to sit and re-gain my exposure.

I hadn't even made it to our destination and felt like I was falling apart. But I re-grouped. I braved bathroom lines several more times. And I committed to following my travel dreams, graciously reminding myself the travel journey itself is the hardest part - the long flights are very hard on the body.

What happened next? Check out my next post!

A Study on Chronic Illness

2016-08-18T10:29:00.005-04:00

I just finished reading In the Kingdom of the Sick: A Social History of Chronic Illness in America over the span of two days and four flights. If the title alone causes a yawn, stick with me! There are some real gems of wisdom in this book, written by Laurie Edwards, a health blogger who struggles with several chronic illnesses including a rare lung disease similar to cystic fibrosis and celiac disease.

IBD comes up several times throughout the book, which chronicles the rising incidence of chronic illness, now a burden of some 50% of the American population with estimates of it affecting 164 Million Americans by the year 2025. Edwards walks us through the fascinating history of the women's movement effect on changing the dialogue and relationship between patient and provider. In generations past, people never questioned our doctor. My, how that has changed!

That's lesson one - talk with your doctor, don't just listen. Come prepared. Seek a second opinion. Balance everything you find on the internet with his/her advice. Check online sources - maybe that website you frequent is funded by BIG PHARMA! Maybe it's a blogger like me, sharing my own personal story. Much information online can be helpful, it's just important to filter what you read.

I found it fitting that while traveling across the country and running through airports to catch flights, I struggled with my own decision to not share my IBD diagnosis with select coworkers whom I see infrequently at various semiannual conferences. Because I had not, I couldn't find a way to explain why I needed to keep dashing to the bathroom. Even so, I couldn't get relief - from airport food, stress and the effect of flying on my intestines (read: insane off the charts GAS!). Perhaps if I had, I would have learned of their own struggles with other autoimmune diseases and invisible illnesses.

Give the book a read if you're into history, social science or just want to learn more about why we face more chronic illness in our society.

Happy travels, Crohnies unite!

The Grit, Part 2 - Globetrotting with Crohn's / Ulcerative Colitis!

2016-07-01T15:30:00.000-04:00

Please check out my first post in this series, The Grit, as this is a follow-up with more specific tips which are best read after the initial post!

4. Bathroom Access

I've written about bathroom access challenges throughout this blog. Check out the first "Grit" and a venting session here.

Whether I'm in Chicago, small-town USA, on board a bus anywhere in the world, or abroad, bathroom access has always been one of my top problems and complaints. There is no easy answer unfortunately. My husband laughs that I seem to have developed a sixth sense for knowing where to hunt down a public bathroom.

Here are some ideas, with the most preferable options first:

Find a department store

Starbucks, Starbucks, Starbucks!! They are everywhere!

Coffee shops & bars - if you are a paying customer, most places will allow access. If you are beyond the ability to hold it any longer and traveling with a companion, allow your companion to join the queue or grab a table while you make a mad dash. Carry your own toilet paper and soap as it may very well have neither. Be sure to explain if you pass a worker on the way to the bathroom so they realize you are/will be a paying customer.

**Side note - in some cities, cafes have bathrooms that remain locked, so a key will be required - after - a purchase.

If need be, find a hotel - mid-range but not too fancy. Walk tall and act like you know exactly where you are going. If you ask and they realize you aren't staying there, you're in trouble as they will say NO. If you just walk in like you own the place and stroll purposefully until you find it, you should be fine. If need be and worse case scenario, a white lie can be used here and say you are staying but just dashing in for a bathroom break. Shhhh, our secret! Crohnies gotta do what Crohnies gotta do :)

Ladies, two words: Go Girl - a device that allows you to "go" standing up. #1 that is. ;) Great for trains, buses and places where the bathroom is filthy or a hole in the ground.

Restaurant -- not preferable unless it is meal time; because my friends, it's only fair that if it is a more formal restaurant rather than cafe, bar or pub, you will need to eat if you are going to use their facilities.

Hole in the ground.... sorry to say the obvious, but I have done this many, many times. You gotta do what you gotta do.

5. More food options....

I've written a lot about food options here and here. Some other ideas include:

Cook in your hostel, apartment, etc...

There are more options these days for backpackers and other travelers. During my solo summer in Europe, I always took advantage of hostels with full kitchens. It's a great way to not only save money but accommodate your specific dietary needs. Airbnb may be a good option as well so you can rent an apartment. If you are only renting a room on their site, make sure you have access to the kitchen as some do not allow for a room rental.

I have even picked my lodging based on if it is near a grocery store! There's nothing like lugging your bags and groceries across town in the middle of the summer to learn that lesson.

Travel with picnic gear so you can eat on the go. My husband laughs that I hoard plastic utensils when you get them with take-out food, but I say -- be prepared!

Ship food from home. For my fellow long-term travelers, this is a great option. Have a family member or trusted friend ship your food to pre-determined locations, similarly to how hikers on the Appalachian trail do. Granted it may take some research to find a hotel or place where you can have it shipped, but that is what trip planning is for. If anyone has done this, please share your experiences!

Watch your alcohol / water intake and dehydration. Crohn's makes you more prone to dehydration, so it is CRITICAL while traveling to stay ahead of your hydration needs, seek shade for breaks from blistering sun, and moderate your alcohol.

Make sure you carry a reusable water bottle that you can fill up in public fountains, etc.. if need be. I prefer bottled water when traveling, but if you can swing the mineral content or it is an emergency and you are in a developed country, public fountain water sources should be fine, as long as they are listed with signs saying "drinking water" or "potable water." If it doesn't say and you are not sure, do NOT drink the water!!

6. Revisit Your Meds Before You Leave!

So you are thinking about traveling abroad and maybe you are doing well on your Crohn's meds so just plan to hit the road "as is"? You've done your research and have prepared an extra prescription from your doctor as well as a letter of medical necessity and have any additional printouts on hand or on your electronic device.

Well..... it's not that easy once you're out in this great big world!

Traveling is TAXING!! Yes, it is MAGNIFICENT, but it is taxing!!! Traveling with an autoimmune disease is like toting along a screaming toddler everywhere you go. Very needy, very clingy, very high maintenance.

Be prepared to flare. Don't panic if or when you do. You may follow all of my tips and still have problems. It's impossible to predict.

I can't make recommendations for your personal medication regime and would never dream of advising you. This issue requires a conversation between you and your doctor. I never leave home without also taking along a prednisone taper and steroid suppositories. Don't get me started on steroids. I know the horrors all too well. But oftentimes while abroad there are limited options. It's worked for me, but again - you MUST talk to your gastroenterologist before you leave.

If you are prone to joint pain, also talk to your doctor for consideration of a topical med. And be sure to bring good walking shoes. My knee pain kicks into high gear while abroad so it is critical I leave fashion cares behind and don the comfiest shoes I can find!

That's it for round #2 of The Grit!!!

Happy travels & Crohnies unite!

Crohnie Travels Blog Honored by Healthline!

2016-06-01T17:47:00.001-04:00

Fun news!! My blog was just named one of the Best Crohn's Disease Blogs of 2016! Tremendous thanks to Healthline for this award! I am grateful and inspired to continue this journey with each of you. After all, we are learning how to live with Crohn's Disease/IBD together.

For other great Crohn's blogs, check out the winners list.

Crohnies unite!

3 Tips for Families with Crohn's

2016-05-14T17:45:00.002-04:00

When I was diagnosed with Crohn's at the age of 13, some 23 years ago, I struggled those first years with modifying my newly required diet, managing medications, and feeling "different" at school. My older brother was 15 at the time and generally healthy. It was difficult on my parents managing the financial struggles of my hospital stays and treatment, my diet compared to the normal diet of the rest of the family, and how to ensure my brother wasn't "lost" in all my many needs.

Fast forward several years and my father was diagnosed with Crohn's.

My mother has struggled her entire life with severe and sometimes debilitating IBS.

My brother has had none of these problems and often doesn't understand our struggles. Who could?

Given my family history, I thought it would be helpful to share 3 tips for families with Crohn's.

1). Crohn's-Free Siblings Often Feel Left Out, Confused, and Scared

My brother was terrified when I almost died, rushed to the hospital with a hemoglobin of 4. My hospital stay was followed a year later by a month-long hospital stay for stomach ulcers complicated by being given the wrong medication. To this day, I worry about the effects on my brother during those tough teenage years.

Talk to the Crohn's-free siblings and keep open a constant dialogue. They are likely wondering if they too will develop Crohn's. Depending on their age, this is a difficult conversation as we simply cannot predict it, but know that it does run in families.

Make sure the Crohn's-free sibling has opportunities to eat his/her favorite foods that may have been taken out of the family rotation. My entire family's meal schedule changed after my diagnosis. Yet my teenage brother was probably wondering if he was ever going to get a cheeseburger and fries again. And if he should feel guilty for doing so.

Help the child with Crohn's and the Crohn's-free sibling understand how they can support each other. Can one help out more with chores when the child with Crohn's is feeling ill? Or find activities to do together when low energy is a problem, like reading together, mad-libs, or playing board games. Does one child feel left out? Divide up and have one parent/caretaker take the child with Crohn's on a special outing while the other parent/caretaker takes the Crohn's-free child out for their favorite meal and the one-on-one time that is so needed when a family is dealing with a sick child.

2. Call in the Pros!

Don't try to handle a Crohn's diagnosis on your own. Now is the time to let friends and loved ones help you. And now is the time to tap into every professional possible. Have you accumulated massive debt from the illness, medical bills, hospital stay? Meet with a financial advisor who specializes in dealing with illness. Pulling your hair out planning the nightly menu for picky kids and a child with Crohn's? Check out great cookbooks and blogs like Against All Grain. Meet with a nutritionist (and check your insurance - often times it is a covered benefit!). Feeling isolated like no one understands? Check out local support groups through the Crohn's & Colitis Foundation of America. Not happy with your gastroenterologist? Get a second opinion. Feeling anxious or dealing with children who are acting out? Meet with a family counselor.

Dealing with a family member who has been diagnosed with Crohn's, particularly a child, brings enormous challenges in the beginning. You will have to learn to adjust and create a new life together. Don't try and do this on your own!

3. Schedule Regular Family Meetings

Yes, we're all over-scheduled and spread thin, particularly when dealing with a family member with chronic illness. Please make sure you are holding regular family meetings to check in with one another. Tailor it to your needs, but stick to it! Maybe every Sunday afternoon, your family gets together to plan the meals for the week. Or maybe it's a safe space to hear from the kids how they feel about all these changes in their lives. For me as a teenager, it was a good time for my parents to see if I was hiding any symptoms. (I hid my Crohn's symptoms for years, which is why it was so terribly bad when I was finally diagnosed after going temporarily blind at school). Maybe your family meeting can be the opportunity to pray together or practice yoga or meditation. Maybe it's a chance to watch a silly show and laugh together. Play board games, or simply just read in each other's presence. Whatever you make of it, don't underestimate a regularly scheduled family gathering during difficult and unpredictable days.

Managing life changes with Crohn's, but it also brings resilience, strength, and a new perspective on how precious this world is and our time in it. Together a family can succeed and grow even closer!
Message me with your stories of how your family dealt with a diagnosis!

Crohnies unite!

Gut Feelings, Probiotics, the Gut Brain, and much more!

2016-04-17T15:38:00.001-04:00

What's the brain/body implications of having a gut feeling?

What's the deal with probiotics and is it enough to just get them in my daily yogurt?

Why do I feel so mentally and emotionally drained when my gut is inflamed?

All these questions and more are covered in the international bestseller Gut: The Inside Story of Our Body's Most Underrated Organ. I recommend all my fellow Crohnies check it out!

The bad news....

Crohn's / IBD is only mentioned once. Sigh. I know. I'm as disappointed as you.

That's why recommending it means it has enough of substance to help Crohnies despite not getting into the dark and dirty of IBD.

Author Giulia Enders writes extensively of probiotics and prebiotics, and if you are not implementing both into your diet, get thee to the bookstore to read why they are critical for your health, with our without IBD but especially for those of us who suffer.

I also appreciate the author's easy to read style, which may have something to do with her being a 20-something penning her first book! No scientific mumbo-jumbo language. She writes as if sitting with the reader over tea. I even LOL'd a couple times!

Here is a link to an interview with the author.

Check it out, and let me know what you think!

Crohnies unite!

A Crohn's Closet: 5 Tips for The Good, the Bad, and the Ugly...errh... Flaring!

2016-02-28T11:58:00.000-05:00

I've been struggling with my closet lately. That's right, my closet!

Not how many of the latest fashions are in there, or how unorganized it looks. No, I'm struggling with the vast array of sizes, styles, and cuts I need living with Crohn's Disease.

For the first time in almost a decade, I've made it past the two-year mark without a flare, praise God! However, that also means that the past couple of years I've been swaying between a regular size and my Crohn's flare size of clothing. Given how much weight I lose during a severe flare, and how long it takes to gain it back, I'll end up in one size for a year or more. As I become healthier I gain back to my regular weight and size. It ends up being a multi-year roller coaster in sizes!

Like most, I even go over a few pounds here and there to my favorite stretchy leggings that are more forgiving. But I never worry about those few extra pounds - to me, they are a reminder of my health and lack of living in a constant Crohn's struggle with flares.

How do you manage your closet and sizes pre-flare, flaring, and post-flare?

The struggle is real.

Image thanks to FreeDigitalPhotos.net and khongkitwiriyachan!

1. Keep a few pieces of clothing from flares

I used to think it was wrong to keep flaring sizes around because it implied I would get sick again. But what about that gorgeous Ann Taylor suit I had bought for a job interview while flaring? Or the nice slacks I love so much?

Don't get me wrong, I donate tons of clothes every year. I have just started holding on to a few really nice pieces of clothing for flares. Unfortunately a flare is inevitable. Instead of drowning in too large clothes during a flare, at least I'll have a handful of items that fit well, particularly for work.

2. Donate the rest!

As an act of defiance to my flare, I then donate the majority of clothes I have bought during a flare or those post-flare months when I am uber-skinny. I don't need to question myself or my self-worth. I simply give them to the less fortunate. It's like throwing the big one at the flare, saying you can eat away at my body but I will not allow you to stick around! I will get healthy again!

3. Love the Squish!

Be sure and have enough squishy clothes, as I like to call them. Like I wrote about in my popular Pearls & PJ's blog, sometimes at the end of a long day with a bloated belly and stressed out body I like to slip on pj's and relax. My favorite clothing for Crohn's are leggings, as they are stretchy and comf. Loose tunics, yoga pants, and dresses are all go-to's!

4. Buy a few items over-size - yes, over-size!

I encourage you to buy a few items of clothing a size up. No, not to indulge in that Venti Caramel Brownie Mocha Frap! But to have something to wear when you are feeling bloated, which for me is often, particularly when I am traveling and can't control my diet as much. For my suits, which let's face it are not the most comfortable, I opt for a tailored jacket to balance out a size-up in the pants. When I am spending long hours in a rental car or have a sub-par lunch on the go and feel like I just ate a can of beans, I can rest assured I won't feel bound in my clothes.

The bloat is real, people! :)

5. Be true to thyself

Only you know how to best manage your Crohn's - and your attitude towards the disease. For you, it may mean keeping all your flare clothes. For others, you may donate all of them, never to be seen again. Follow your own path, and let's all support one another.

Until then, join me in my mish-mash closet that looks like it's for two people, but nope, just me and my Crohn's! :)

Confessions: When Your Loved One is Sick....

2015-10-28T17:18:00.001-04:00

I have a confession to make.

But first, let me just remind us all before you judge me - having Crohn's is exhausting - mentally, physically, emotionally. It can feel like a struggle for me to get through each day. I've lived with it for 23 years.

So why did I totally lose it on my hubby when he was not feeling well last weekend? He was grumpy, short with me, and on edge most of the day that we were stuck together doing house projects.

Mind you, when Crohn's gets its best of me, I am often times grumpy, short with him and on edge as well. Yet I did not grant him the same grace he offers me, week after week, year after year, living life with a Crohnie.

Instead, I made him feel less than. I compared. Yes, the dreaded "oh you have a headache, backache and a little tired? Try feeling like a knife is being dragged through your intestines. Try feeling like you cannot possibly get out of your chair from exhaustion - daily".

Yes, I went there.

Sigh.

We've worked through it, hugged it out, and are ok now. Lessons learned - the joys of marriage are in constantly fine tuning ourselves and each other.

Dear ones, we know our secret and shared burdens with Crohn's. Outsiders will simply never truly understand. They can't. But that's ok.

And lest we forget, our closest loved ones do understand our pain and struggles. They lovingly choose not to remind us how much we need from our partners who lovingly provide. Let's try passing on that grace and biting our tongues when we feel like playing the "I feel worse than you" game.

Crohnies unite!

Rain or Shine, Flare or Fine

2015-10-08T20:24:00.003-04:00

Crohn's has a sneaky way of rearing its ugly head just in the moment we desperately seek calm. Call it stress, imbalance, or the simple lack of predictability in the disease, but it's easy to feel like walking on eggshells is the only way to live.

Case in point - one of my worst flares started less than a week after getting engaged. What should have been one of the happiest times of my life was instead filled with pain, fear, discomfort, and sadness.

Sometimes all we can control is our reaction. It took self-work but I decided to view my post-engagement flare as a blessing. I am an uber-Type A control freak, and I could have easily fallen into the maddening dance of perfection and overkill in my wedding planning like one of those reality tv show crazies. Having a Crohn's flare meant I couldn't get that intense into the planning. I had to learn to accept and downplay. I had to learn to pick my battles. After all, I didn't have the strength to try a thousand dresses or visit a dozen venues. I physically couldn't sample the food of various caterers. I did what I could and enjoyed the simple, special moments.

I found healing a couple months before the big day and had a beautiful wedding.

Fast forward 4 years later!

Recently my husband and I opted for a quick birthday getaway in Charlottesville, Virginia. We knew it would be in the midst of the Joaquin weather front. We just simply needed to get away for a laundry list of reasons. In the midst of soaking winds and rains, we found laughter and a sense of freedom. It reminded me of Crohn's - how wind-soaked and tornadic it can sweep into our lives. Choosing to dance in the rain - choosing to practice your wedding dance in a flare - takes back a sense of control in uncontrollable circumstances.

My wish to each of you is you find that eye in the storm of your flares. Know that this too shall pass. And we are standing by cheering you on.

Crohnies unite!

The Art of Saying No

2015-05-12T19:34:00.001-04:00

First of all, I owe an apology for being so behind on my posts! I am just now recovering from a couple of rough months of health challenges but thankfully starting to feel back to normal. During this time of trials and tribulations that every Crohnie goes through, I was reminded of "the art of saying no." Yes, friends, saying "no" is one of the hardest words for us multi-tasking, overachievers who are worry-warts and people-pleasers. Anyone else in this club with me? If so, read on!

-- Saying "No" to friends, colleagues, book club members, neighbors, and the person who won't stop asking you to help out at the next PTO meeting

Note I didn't include family in this list, because in my world family and God come first. It's the rest of the world that has to take two giant steps back when I'm flaring or dealing with other health struggles. We all know in those bad days of IBD struggles, it's near impossible to get out of bed, shower, eat - do the basics take care of ourselves, much less respond to the thousandth email that has made your inbox look like a tidal wave of 'must-do's'.

Flaring humbles me that the world goes on without me.
Friends remind me that while they miss me, they understand.
True friends pick right back up where things left off, as if time had never passed.
If the supper club, book club, PTO, mom's yoga class, or other group doesn't understand everyone needs a break sometime, maybe it's time to re-evaluate their place in your life. Or for us over-achievers, maybe it's time to create a NEW group of more like-minded individuals.

"there are often many things we feel we should do that, in fact, we don't really have to do. Getting to the point where we can tell the difference is a major milestone in the simplification process.”
― Elaine St. James, Living the Simple Life: A Guide to Scaling Down and Enjoying More

-- Saying "No" at the gym

I almost cried in toning class my first time back after missing weeks of workouts due to my latest flare. Exercising has become a source of stress relief and assurance that I'm helping to mitigate the bone loss from steroid use and IBD deficiencies. Despite that, my efforts are often baby steps forward, giant steps back. Last week, I unknowingly walked into class with the hardest instructor, who I call GI Jane, and struggled through the entire session. I found myself collapsing during planks, having to decrease my weights, and tending to throbbing knees during lunges. I felt so self-conscious, like everyone knew the girl in the back was a failure. The instructor kept yelling for us to keep going, which I took as a personal attack since everyone else seemed ok.

I said 'NO' to the last fifteen seconds of plank, burying my face in my hands and certain I was the only one who failed.

I said 'NO' to jumping jacks on sore knees and created my own modification.

At first I felt so sad. Then I said 'NO' to my tears. I said 'NO' to feeling self-conscious. Instead, I chose self-love. I imagined if everyone in the class, especially the instructor, knew what my body had just been through I would be held up with love, not judgment or competition.

Having an invisible illness means we appear normal, yet can be in so much pain on the inside. I long to shout to the world that even if I look ok, I am so far from ok it's ridiculous!

Listen to your body and it's limits. Be patient with your limitations. Love yourself and praise your body for what it CAN do, rather than scold for what it can't do.

-- Saying "No' at work

Does anyone else have a job that requires some significant physical demands at some points, or perhaps daily? How do you manage with IBD - please reach out and share through an email or the comments section, because I struggle with this one. I am in a season at work that involves a lot of weekends, nights, and physical work. Last weekend before heading to an event, I started crying while telling my husband how afraid I was of stretching myself too much with exertion. After all, I'd just spent the better part of 8 weeks resting every moment of the day possible. Hours of manual labor seemed daunting.

He reminded me of my strengths in setting boundaries and helped me talk through different scenarios. After all, with some people you don't necessarily want to discuss IBD, am I right? Like that coworker you aren't really close with - why share if you don't want to? He helped me talk through some generic "boundary settings," like "I'm sorry, I am not able to do "x" or lift "y". I have some health problems, and while I'm happy to help with "a" and "b", I'm just not able to do "x" and "y".

Period. No additional explanation or apologies. If they ask, just say "I'd rather not discuss the specifics, but thanks for your concern!" Only your manager or HR staff lead needs to know the specifics.

Check out my post on job considerations with tips on the ADA for more!