Fighting Flare

How To Plan, Prepare and Pack A Week's Worth of SCD Meals for Camp Oasis Without Going Insane

Worried about sending food to Camp Oasis this summer?  It doesn't have to put you over the edge.  In this post, I'm going to share how I planned, prepped and packed a week's worth of SCD-legal camp meals without going insane.  You can do it too!! 

1. PLANNING.  Review the camp menu for the week and then create your meal plan.

If a menu isn't provided, ask to see one. We are very lucky here in the northwest, to have a progressive CCFA chapter that is a great liaison between SCD parents, Seattle Children's Hospital and the local YMCA camp that hosts Camp Oasis.  A month prior to camp, CCFA-NW sent us a copy of the camp menu so we could review and plan our SCD menus.  The first thing I did was review the menu, cross off anything my daughter could not eat, and then figure out how to provide legal substitutes that would be as close as possible to what the rest of the campers would be eating. 

I did this for two reasons...

1. It took less effort to copy an existing menu than think up a whole new one. 
2. I wanted my daughter to have the most authentic camp experience possible and that meant dealing with crappy camp food...LOL!  I guess I shouldn't say crappy, but you don't get catered to at camp, and I wanted her to experience that.  Like a "normal" kid. 

Feel free to approach this however you like, but the point is to make a meal plan.  You will need to account for every breakfast, lunch, dinner and probably 2 snacks per day.  Keep in mind that a some of the meals will be kept in the freezer, so make sure to pack things that freeze well.

For your reference, I'm attaching copies of the 2014 Pacific Northwest Camp Oasis Menu, my adapted SCD-Menu, and the Camp Food Packing Instructions.  If you click on these links, you can download word documents of the menus that you are welcome to cut/paste/adapt for your own use.  The packing instructions will help you organize and label your food so that it's as easy as possible for the kitchen staff to get your child's meals out at the right time. 

I'm also linking to a blog post from Gut Harmony, written by one of my SCD friends that contains 4 years worth of SCD menus that she has sent to camp for her son: Diet in Summer Camp.  (This blog is also a great SCD resource, so be sure to look around while you're there!)

Please keep in mind that the process for sending food may be different at your camp, so be sure to check with your camp organizers before proceeding.  If there is no firm SCD policy at your camp, you may be able to use these guidelines to help set a precedent.  :)

2. PREPARING. Batch cook the week or two before camp.  Freeze portions as you go.

Once you've created your meal plan, you need to prepare the food.  This does not have to be a major ordeal.  The way I approached it was to make my camp menu to feed our family the week or two before camp.  Each time I made something, I would double the recipe so that I'd have leftovers to send to camp.  This takes very little extra time and you can build your camp food "inventory" one dish at a time instead of having to make everything at once. As you are putting away your leftovers, simply freeze them in the containers you will be sending to camp, so that you don't have to re-package later. 

For breakfast, I sent mostly the same things every day, so I made big batches of pancakes, breakfast sausage, breakfast cookies and bacon over the course of a week, froze things as I went and then boxed them up all at one time.   Fresh fruit was provided at camp to supplement.  To keep things simple, I got some honey packets at Starbucks to send for the pancakes. (I asked to buy some, but they were nice enough to just give me a bag-full when I explained why I wanted them.)  If you do this, be sure the packets contain 100% honey, not "honey-sauce" or some other made up condiment.  If you can't get packets, or don't trust the contents, consider sending spun honey in little condiment containers...this will be less likely to leak and spreads on like butter. 

FYI...We use Hempler's Applewood Uncured Bacon. (Ingredients: natural pork, water, sea salt, organic honey, celery powder.) Yes, the celery powder is probably illegal, but we have not had any trouble with this bacon, and since any bacon is legal once a week if cooked until crispy, I figure this is waaaay better than any other bacon we could be eating.  And no, I don't usually feed my child bacon 4 times a week, but it's camp!  Crappy food, remember??  ;)

I don't have photos of my other meals, unfortunately, but I sent a variety of things from chili, to hot dogs to jambalaya...matching meals as best I could...sending other things when I couldn't find a good sub.  Keep in mind that food will be nuked to reheat, so anything that is supposed to be crispy, will end up soggy.  I couldn't figure out a way to send a decent SCD-legal pizza, so I just made something else for that meal.  I want my daughter to have that "normal" experience, but not at the expense of her happiness and soggy pizza is just sad.  For everything I sent, I included all toppings, sides, condiments, etc. and utilized the salad bar and camp-provided foods as best I could to supplement what I was sending. 

3. PACKING. Stock up on inexpensive food containers. (The dollar store is your friend.)

I hit the dollar store for most of my food containers because I wanted to keep this affordable and suspected many things would not make it home.  I chose these 2-section containers that were 2/$1.  I liked that I could put the main course in the larger compartment and extra condiments, etc. in the smaller section.  And yes, they probably leached BPAs into the food when being reheated in the microwave, but I felt like this was ok for one week.  The boxes of ziplocs were also just $1 each.

The dollar bins at my local drug store were also a good source of small containers for snacks. Some things could go straight into ziploc bags, but I was worried about baked goods getting crushed and wanted hard-sided packaging for those.  I was also cognizant of having "fun" packaging for snacks, hence the colorful containers and treat bags.

The hardest thing to find was tiny leak-proof containers for condiments, so I found some little pots with screw on lids in the travel-size bins at Target. They were about 3/$1. I honestly do not know if they were food safe, but I figured that for the tiny amount of ketchup going into them and the length of time they would be in use, it was a minimal risk.  Consider yourself warned.  ;)  Sistema also makes great condiment containers that are food safe, but are kind of spendy for what they are.  I bought some of those too. 

Finally, be sure to pack everything in a cooler to take to camp.  We had a 1.5 hour drive to camp and we never know what traffic will be like.  You do NOT want your food to go bad on the way to camp. 

A FEW EXTRA TIPS:

Here are some of the pre-packaged foods I sent as snacks.  You can find a wide variety of aged cheeses that are individually wrapped.  Larabars are also easy to find...just be sure to check ingredients and only buy the ones that are safe....duh.  I've also had luck with Wholly Guacamole...as with anything processed, it's probably not technically legal, but we haven't had any problems with it.  I sent these to go with carrot sticks the camp was providing.  I also included a variety of dried fruits and home-baked muffins and cookies.  If you are able to send nuts, those are good too.

All of the snacks got bagged up and labeled and they all went into one jumbo ziploc.  I asked that this bag be kept in the fridge the whole week, instead of the freezer, so the cheese wouldn't get funky.  As I packed, I put end of week snacks in the bottom and packed start of week snacks on top, so they would be easy to find.  (FYI: You'll notice that there is Moon Cheese in one snack bag...this is not SCD-legal, they do dust their cheese cubes with some kind of starch to prevent the cubes from sticking together before freeze-drying, however, my daughter hasn't had problems with them...as it turned out, she doesn't really like them either, so we don't buy them anymore.)

I usually make my daughter an SCD yogurt smoothie for breakfast every day, so I wanted to make sure she got those at camp.  I had no luck finding an inexpensive container to put them in, so I just used some of my glass jelly jars.  These worked fine, but my daughter said that the smoothies were kind of gross by the end of the week.  I think in the future, I would just send a few for the first few days or skip them all together.

My daughter reported being very happy with her meals....and most of the containers made it home!  She was one of about a dozen kids at her camp on SCD last year.  This year, there are going to be about 25! 

We won't be sending food to camp this year due to the higher number of kids on SCD.  Instead, the CCFA-NW chapter has actually hired personal chef, Travis Bettinson, to cook for the SCD kids this year. If you are interested, here's what Chef Travis will be cooking: 2015 Camp Oasis SCD Menu.  This menu has been approved by Seattle Children's Hospital and was reviewed by all SCD parents prior to camp.  Families who can, were asked to contribute an extra $100 to offset the cost of hiring the chef, but most are more than willing to do so...we would have spent far more than that on food for the week anyway. 

LAST BUT NOT LEAST...

Please keep in mind that any camp that is willing to accommodate a special diet is doing you a favor.  Make it as easy as possible for them to implement your meal plan and your efforts will be much appreciated.  That means being organized, respectful of how much space they have in their fridge, and polite.  In most cases, the kitchen staff will not know the rules of SCD, so you need to be as clear as possible in your instructions, without being rude.  They want to be helpful, so help them help you.  :)

I hope this post has been helpful for families who don't have quite as much support for SCD in their area as we do here in Seattle.  I would love to know what other questions you have or what tips you've come up with for sending food to camp.  Please feel free to leave comments below, drop me a line or start up a chat on Facebook.  I love to hear from you!  Thanks for stopping by!!  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

 

Now where was I?

Hey everyone! How are you doing?  What have you been up to?  I hope this post finds you all feeling well and ready for a great summer.  That graphic above sort of sums up the past few months for me...ok, maybe the past 40+ years, but who's counting?  Let's just say it's been a busy spring. 

Last I chatted at ya, I was explaining why every kid with IBD should go to Camp Oasis and now it's almost time for camp...where does the time go???  If you're not in the Pacific Northwest, you'll probably be blown away to hear that there are so many kids on SCD going to the WA Camp Oasis this year (20-25 kids) that the Northwest chapter of the CCFA has hired a personal SCD chef to cook just for those kids at camp this summer!  Holy Wow!  I find it incredibly inspiring that the number of kids on SCD this summer has almost doubled over last year.  That is a great sign that more and more people are becoming aware of the merits of SCD and are starting to embrace this "alternative" treatment.  And for the CCFA to acknowledge this trend and step up to add this service is wonderful.  So, huge thanks to our friends at CCFA-NW!

If you are not in the Pacific Northwest, you will likely be facing a camp that does not make such luxurious accommodations for your little SCDers.  Or possibly a camp that doesn't even know what SCD is.  Do not despair!  I packed all of the food for my daughter last year and I'm going to share what I did and what I learned in an upcoming post.  It takes a bit of coordinating, but it can be done.  You can do it!  :)

We're also rapidly approaching the CCFA's Western WA Take Steps For Crohn's & Colitis walk on Sunday, June 7.  I'm really excited to be attending my first walk this year and will be tweeting and sharing pics from the event.  Did I tell you I'm also the Volunteer Coordinator for the event?   I'll be stationed in the volunteer tent before the walk, so come say Hi if you're there!  I'm also still looking for day-of volunteers to help the walk run smoothly, so if you're in the area and want to help out...click that little button below.

In addition to those two big updates, I hope you're also ready for a full-on brain dump because I've planned a bunch of new posts on topics including our protocol for adding back non-SCD foods, packing lunches for camp, a new SCD bakery, tips for camping with IBD & SCD and, of course, a bunch of great summer-ready recipes.  If there's anything else you specifically want information about, please feel free to reach out and let me know what you are curious about, what you struggle with, what you wish someone had told you about IBD or SCD...what do you want to know?  Looking forward to hearing from you!  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

 

Make a Splash at CCFA's Camp Oasis

Registration for CCFA's Camp Oasis is open!  Have you registered your child yet??  If not, what are you waiting for??  Trust me when I tell you that you don't want to miss camp. 

For those who don't know, Camp Oasis is a signature program of the Crohn's and Colitis Foundation. With 12 camps across the US, they make it possible for kids with IBD to leave their IBD worries at home and just enjoy a care-free week at summer camp.

When I first heard about Camp Oasis, I am ashamed to admit that I thought it sounded very sad. I thought, no way am I sending my kid off to a camp for sick kids.  Turns out, I could not have been more wrong.  There is NOTHING sad about Camp Oasis...except maybe that it is only a week long.  In fact, Camp Oasis ended up being the best thing to come out of my daughter's diagnosis.   Honestly, I can't say enough good things about camp. 

For a child with IBD, the experience of being surrounded by other kids with IBD is a game changer.  It normalizes the disease.  It helps kids know they are not alone.  It teaches them that they can go out and do anything they want and their disease does not define them.

IBD can be very isolating to people who have it.  The topic of guts and bowel function is not one that people regularly choose to discuss in polite conversation.  It can be hard to explain how bad you feel when you don't look sick.  It is hard to be the kid who has a different diet or who misses a lot of school or can't participate in gym class because her tummy always hurts.  Being surrounded by 100+ other kids who "get it" evens the playing field.  Everyone understands because they're ALL going through the same thing.  It is so positive and so supportive on so many levels.  But don't just take my word for it...check out this video and hear what staff and campers have to say...

So, now you know that your kid should most definitely go, but you may be wondering what goes on at camp.  Fair question.  The answer: camp stuff.   It's that simple.  They do the same stuff kids do at camps anywhere else.  They hike, swim, goof-off, do crafts, sing songs and build bonfires.  The difference is, they are supported by a staff of GI doctors and nurses who are there to administer meds and handle any health problems that may come up.  Oh, and sometimes rock stars stop by...yup, that's Pearl Jam's Mike McCready at camp in 2013.

I can honestly say, I could not have felt more secure in leaving my child anywhere than I did the day we dropped her off at Camp Oasis.  We were greeted by the doctors and nurses who treat her at Seattle Children's, as well as, people we've met through the CCFA and even some other parents and kids whom we'd gotten to know prior to camp.  It was the most reassuring thing in the world to know that if something happened, she'd have her very own doctors there to help her. Doctors she already knew and who understood her IBD.  You can not beat the medical staff at Camp Oasis.  They are the very best there is.  And they VOLUNTEER their time to be there. 

Another thing I really liked about our Camp Oasis experience was that fact that the camp kept in touch with us throughout the week.  We got an e-mail at the end of the first day letting us know that everyone was all settled in and having fun.  We also got two phone calls later in the week just to check in and share news about how things were going.  And if that weren't enough, the camp posted photos to a private website, so we could see with our own eyes what was going on at camp.  This put my mind at ease the most.  I loved being able to see what my little one was up to without her knowing I was keeping tabs.  ;)

And check out the view from her cabin!  Ummm...yah.  My Girl Scout Camp didn't look like that.

For people who are unsure about how their little ones will do away from home for the first time, rest assured, they are prepared to handle any homesickness that comes up, although the kids are kept so busy that they hardly have time to think about it.  As one of the youngest campers, I worried that my daughter might get lost in the shuffle (or the woods!), but the counselors were with her every step of the way and became some of her favorite people at camp.

Meals were the trickiest part of our experience, and I will go into much more detail about that in another post, but for now, just know that we were able to maintain SCD for the week by sending food to supplement the core camp menu.  This involved a lot of planning, but it was manageable and there were 14 other kids at camp who were also on SCD!  Talk about normalizing!  Even though my daughter had to eat something different, for once, she wasn't the only one. 

So what did my daughter think of the whole experience?  She wished it lasted longer.  She came home with a newly forged independence and a much improved comfort level with her IBD.  She sang camp songs for weeks and can't wait to go back this year.  My daughter was an awesome kid before she went, but she came home an even better, stronger version of herself and I will always be grateful that she had the chance to participate in Camp Oasis. 

If you're still not sold, let me tell you one more thing.  Camp is surprisingly affordable!  A large portion of the cost is subsidized, but if it's still out of reach, there are options for financial support.  It is worth it to make every effort to get your kid to camp if at all possible.  There is nothing else like it.  :)

Now go get registered!!  Find a Camp Oasis near you. 

Feel free to ask questions or share your own thoughts about camp.  I know every camp is a little different so it would be great to swap stories and compare notes.  All of the photos in this post are from the WA camp, so if you are in the Pacific Northwest, this is what your child has to look forward to.  (When do the parents get to go???)  Thanks for stopping by and hoping to see you at camp!  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

 

Photos courtesy of CCFA, Camp Colman, Nurse Apple and myself

 

GI Doctors at Seattle Children's Hospital Want to Know. Does SCD Work?

Does SCD work?  That is the question GI doctors at Seattle Children's Hospital are asking.  Please help them find the answer by clicking the link below to participate in the survey. 

SCD Survey Here ---------> https://redcap.iths.org/surveys/?s=7YLY9489CE

What's in it for you?  Well...the fact that doctors are even starting to consider the idea that diet has an impact on IBD symptoms is a huge mind shift.  It's a very exciting time for SCDers and IBDers alike!  Very little research has been done on the impact of diet on IBD symptoms, so this survey is a step in the right direction. 

Imagine if SCD became a mainstream treatment and instead of toxic drugs, doctors prescribed delicious, healthy food to treat IBD.  Imagine if toxic meds became a last resort, or even better, a thing of the past.  Imagine if we find out that certain illegal SCD foods, don't need to be illegal!  Imagine if the demand for SCD-legal foods increased and you could just swing by the local grocery store to pick up 24-hour fermented yogurt or SCD-legal snack foods.  Imagine if restaurants had SCD-legal dishes mixed in with their gluten-free and vegetarian options.  Just imagine...

Take the survey today and help doctors help us to make those dreams a reality.  And be sure to chime in if you've tried SCD and it didn't work for you.  Understanding what doesn't work is just as important as understanding what does.  Everyone's input is valuable.

And, by all means, please share this survey with anyone you know who is using SCD to treat IBD symptoms.  Knowledge is power, people!!  Let's use this survey to become more powerful!!  Thanks in advance!  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

Letter images via Leo Reynolds on Flickr

My Child Has IBD. Now What?

My child has IBD.  Now what? 

That was the question I asked myself in the days that followed my daughter's Ulcerative Colitis diagnosis.  How could I explain to her in terms that a six-year-old could understand what was happening to her body when I barely understood it myself.

I knew she was scared and needing to regain some sort of control over her world.  She was very angry about learning that she would need to take medicine for the rest of her life.  I worried that she would not be able to cope with or understand her emotions and was feeling inept in my ability to help her.  What she needed was a safe place to express herself, learn about and keep track of her IBD.

Enter the 3-ring binder. When we first received the UC diagnosis from our daughter's GI, he handed us a massive 3-ring binder that was chock full of everything we would need or want to know about IBD... treatments, medications, procedures, life at school, life while traveling, diet and charts for tracking everything from prescriptions to hospital stays. Quite frankly, it made me want to vomit.  And that is saying a lot because I have always been a fan of 3-ring binders.  Usually, nothing makes me feel better than organizing a project neatly into sections with perfectly labled tabbed dividers. But this notebook...this burdensome thing made my physically ill with the dreadful reality of it's contents.

The point of the notebook, we were told, was to keep track of every detail of our daughter's disease so that she would have a record of it when she was older.  We were to keep this on her behalf and give it to her down the road.

As I flipped through the binder later that day, it hit me!  Why not make a kid-approrpirate binder for my daughter to actually use now?  She could bring hers to all her appointments just like I was bringing the other one.  As the idea took root, I realized that this could be the safe place for my daughter to express herself and a place to keep track of her disease in a way she could understand.  Not only did it make me feel insanely useful to put this together, but my daughter loved it!  3-Ring binders and I were back on speaking terms! 

The first thing I did was treat myself to a shopping spree at the office supply store.  (Retail therapy...never a bad thing.) I picked out a hot pink binder, colorful plastic dividers, some pocket folders, and a hot pink pencil bag.  Then I rushed home to put it all together.  

Here are the sections and what's in them:

PENCIL BAG: We spend a lot of time in waiting rooms, so I wanted to fill this little bag with things to entertain.

• fresh crayons...the waiting room always has coloring pages available.
• dry erase markers...for the clinic rooms...they have whiteboards, but don't always have markers.
• tiny deck of cards...nothing like a game of WAR to pass the time.
• itty bitty tape measure...because what kid doesn't love to measure stuff? 

CALENDAR: At the very front I placed a calendar for keeping track of doctor's appointments, meds and happy things to look forward to like holidays and vacations.  I downloaded the calendar from Doodle Art Alley which had cute free printable calendar coloring pages.  The coloring pages are great for passing the time while waiting for doctors.

  

JOURNAL: There is another section of blank white paper for journaling.  At 6, my daughter was expressive, but unable to fully write and record her thoughts.  She loved to draw pictures though, so my hope was that she would be able to draw out things that were bothering her or that she wanted to keep track of.  The first picture she drew was of her medications. 

Over the past year and a half, I would say the journal section has gotten the most use.  I've encouraged my daughter to jot down her feelings when she is upset or feeling stressed out about her IBD.  She's drawn many pictures, that range from angry to sad to cheerful.  I've also given her permission when she and I are together to say that "IBD Sucks" - although don't tell her dad!!  She's allowed to write that "swear word" in her journal, which may sound like bad parenting, but c'mon...we all know that sometimes a good swear feels really satisfying.  Giving this kid a bad word to say really helps her vent her anger in a way that I feel is safe plus she feels like it's a treat to be allowed to say a bad word.  Ya gotta find the perks where you can.  ;)

SCRAPBOOK: Another section full of colorful cardstock serves as a little scrapbook.  Now, I know at first this sounds morbid, but I wanted her to remember the good things that came out of this, not just the bad.  When she first got sick, her whole kindergarten class made her cards and her teachers actually brought them to our house because she was missing so much school.  I, of course, had to take pictures and after being displayed in the living room for a while, the cards went into a pocket in the back of the binder.  The flowers she received after her first hospital visit were also documented.  We even took a few pictures in the hospital so that she could look back and see how far she's come.  My hope is that she will draw strength from these things when she looks back and sees how much people care about her and how much she has already overcome. 

It's also a great place to save her favorite coloring pages and stickers from all those clinic visits...

We are starting to have quite a collection of kittens and princesses!

ACTIVITY BOOK.  In another section, I printed out an activity book from the Crohn's & Colitis Foundation (CCFA) website called "IBD and Me."  It is geared towards kids 8-12, but there was a lot my 6-year old understood and could do.  We worked on it together to answer her questions about her body and what was happening to it.  This was a great way for us to learn that she had some sick parts, but that they were just a small part of who she is.  Learning what was going on inside her body really relieved a lot of the fear of the unknown. 

PLASTIC POCKETS: As I mentioned above, these are for cards and keepsakes or just for holding on to things for later scrapbooking.

 

So, that's the binder.  As she outgrows the crayons, stickers and activity books, I see this being a great place for my daughter to keep track of her favorite SCD (or IBD friendly) recipes, photos and letters from Camp Oasis or whatever other things she wants to keep track of.   It truly has been a very useful tool for giving my daughter back a wee sense of control in an otherwise out of control situation.

I hope that you find this useful and if so, I'd love to hear your thoughts or ideas about this or your own tricks for helping kids feel more in control of their IBD.  Feel free to share photos too!  I'd love to see how this translates to other families or teens.  You can post photos on my Fighting Flare FB page or tag them with #FightingFlare on Instagram.

Thanks so much for stopping by.  Be sure to check back soon for some playful ways to explain digestion to your kiddos and important information about Camp Oasis!    XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

Lead photo via Pinterest

The Best SCD Resources on the Web

As a follow up to my last post, The Best IBD Resources on the Web, today I want to share my go-to sources for SCD support.  Like my last post, this list is by no means exhaustive...there are lots of inspiring websites out there...these just happen to be the ones I find myself referring to most often. 

Breaking The Vicious Cycle

This is my SCD home away from home.  Not as informative as the book, but it does have a great alphabetized database of legal vs. illegal foods.  I keep this site pulled up on my phone at all times so that I can easily reference it if I encounter a questionable ingredient...and in the beginning, every ingredient was questionable...LOL.  In addition to the ingredient database, their is also a knowledge base, which provides expanded information on many topics.  The website is NOT a substitute for the book...you need to read the book, but it does supplement with easily accessible information on the go.

Pecan Bread

This website is dedicated entirely to kids on SCD.  You'll find tons of useful information including easily understood explanations of the science behind the diet, tips for success, useful links, recipes and more.  I still haven't made it all the way through the extensive amount of information on this website.  For people who are just getting started with SCD, the information about the Intro Diet and Stages can be especially helpful. 

NOTE: As per BTVC, the intro diet should only be used for 2-3 days, never more than 5.  Also, understand that the "stages" that are suggested on the Pecan Bread website are not "official" or necessary for success with SCD.  They can be helpful if you are having trouble getting symptoms under control but they are not required and in fact, can be detrimental if you linger for too long in the beginning stages because they significantly reduce nutritional intake. 

SCD Families (Facebook Group)

This is a small, private support group on Facebook that is only for parents or caregivers of children and teens with IBD who are using SCD as a therapeutic treatment.  I can not even begin to explain how supportive this online group is.  I've come to think of this group as my IBD family and have no idea how I would survive without them.  If you are interested in becoming a member, please request an invitation to join.  

SCD Group (Facebook Group)

This is another private SCD support group on Facebook with over 3500 members.  The wealth of knowledge in this group runs deep, however, the moderators are strict advocates of following SCD to the letter...with fanatical adherence.  I find this frustrating because I know for a fact that different things work for different people.  That said, I do find the group to be a fountain of knowledge and for that reason I am suggesting it as an excellent resource.  If you would like to join, just request an invitation to be added to the group.

Pinterest

Yes, this is your license to clock some hours on Pinterest...do a search for "SCD" and you will get more recipes than you will ever have time to cook.  Do be aware that not every recipe that is tagged "SCD" is necessarily SCD legal, but you will get many that are along with tons of ideas and inspiration.  Another term I frequently search is "Paleo."  It is different that SCD, but follows many similar guidelines.  Just be sure to reference your legal vs. illegal list from BTVC to ensure that the Paleo recipes are SCD-safe.  To start you off, here are a few boards I've created: SCD Mornings, SCD Recipes, SCD Snack Attack, SCD Sweets and SCD Kids.

Nourish Bakery

This is a brand new bakery that makes and SHIPS delicious SCD legal baked goods from breads to cakes to pizza crust and crackers  Check it out and save yourself some time in the kitchen!

 

BEST SCD FOOD BLOGS

Against All Grain

When we first started SCD, I came across this blog and it was the first sign of hope that we could do this diet and still eat good food.  Author, Danielle Walker, has UC and successfully managed her symptoms using SCD for quite a while.  As she learned more about what her body could tolerate, she did evolve out of SCD and into Paleo, but many of her recipes are still SCD legal or easily adapted.  I definitely encourage you to check her out.

Elana's Pantry

Elana's Pantry has become my go-to source for baked goods.  Her muffins, cupcakes and cookies all just seem to "work."  She really seems to understand how to best utilize nut flours to make wonderul SCD legal treats.  Be sure to also check out her cookbooks...I really like the cupcake one and the almond flour cookbook.

Comfy Belly

Although not strictly SCD, Comfy Belly is a great source for many grain-free, sugar-free, dairy-free foods that if not SCD legal, can be easily adapted.  Written by Erica Kerwien, a mom who's son was diagnosed with Crohn's in 2005, she's been doing this for a while and has two great cookbooks that you can also look for on her website.

Gut Harmony

Written by an SCD friend of mine that I met through the SCD Families Facebook group...this is a great blog written by a VERY experienced and knowledgeable SCD mama.  She has done wonders for her teenage son and speaks to the unique challenges of sticking to SCD with a teenager. 

Whew!  It feels so good to get these lists out of my head and onto my blog where they can be useful to other people!  At least I sure hope they are useful!!   Let me know what your favorite SCD websites are and where you draw your recipe inspiration from.  Happy cooking!  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

Photo via Pinterest

The Best IBD Resources on the Web

Today's post has been a year in the making.  I intended to post this last January when I first started my blog, but I held off for some reason and I'm glad I did.  I've spent the past year fine-tuning this list and am excited to share with you some really helpful resources.  When my daughter was first diagnosed with IBD, specifically Ulcerative Colitis,  I had many, many questions and far too few answers. I spent hours glued to my computer, scouring the web for anything I could find that would shed light on how she had gotten sick and what was to come.  Much to my dismay, most of the information I found was either redundant or irrelevant.  I could find very little that was specific to children and absolutely nothing about how to help a six-year-old (and a 40-year-old!) come to terms with what was happening to her body.

 

After weeks of relentless searching, I found a nice collection of trustworthy sites with useful information and over the past year and half, have continued to evolve that list. Today I'm sharing my current list of favorites in the hopes of saving you some of the frustration I experienced. I want you to spend less time digging and more time learning how to help your child, yourself or someone else you love.  My critera for making this list was that the site had to offer solid information to patients (as opposed to medical professionals) and have a heavy slant towards pediatric care.  Each site also had to offer unique information not published on every generic IBD site out there.   This list is by no means exhaustive, but it’s a great place to start.

 

BEST GENERAL IBD RESOURCES:

 

Crohn's & Colitis Foundation of America

This is the mother ship of IBD research and support.  There is a section for people who have been newly diagnosed, current research information and numerous ways to get involved in the IBD community.  Local CCFA chapters are also linked to this page, so you can find resources in your own community.  And if that weren’t enough, this is the home base for several great programs that are particularly helpful for people who have children with IBD:

• Camp Oasis: Nationwide summer camp opportunities for kids with IBD...a great place to connect with other kids who understand what it's like to live with a chronic disease.
  

• Power-of-Two: This link is for the CCFA NW chapter, but be sure to look for this program on your local CCFA chapter website. Power-of-Two provides short-term mentoring support to patients and their families coping with IBD. Individuals participating in the program are matched to volunteers who have had similar challenges and experiences for phone or e-mail conversations.  I signed up for this when my daughter was diagnosed and found it to be very helpful.  Since then, I've become a volunteer for this program.  You can read more about my experiences here.
  

 

Where To Wee App

Download this sweet little app to your phone, so you can always find a loo when you need one.  There are actually lots of apps like this, but I found this one to be most helpful.

 

Restroom Access Act (Ally's Law)

This is an article about the Restroom Access Act which, at the time of publication, has been passed in 14 states and requires retail establishments with public employee restrooms to allow access to customers who suffer from IBD.  Check it out and see if your state is covered.  Delaware just recently joined the list.  For the most recent information, check with your state's Department of Health.  If your state is not covered by the law, consider advocating for legislation in your area.

 

WA residents can download passes here: WA Restroom Access Pass

OR residents can download passes here: OR Restroom Access Pass

 

 

BEST PEDIATRIC IBD RESOURCES:

 

Pediatric IBD Foundation  (Sponsor: Pediatric IBD Consortium)

If the CCFA is the mother ship for all things IBD, this website is the mother ship for Pediatric IBD. There are areas of interest for parents and teens.  Especially helpful are the resources in the parent section about school and travel, as well as a nice list of fact sheets in the multi-media resource library.  I don't know how often this website is updated, but it is a great source if you are just starting to learn about pediatric IBD.

Seattle Children's Hospital Gastroenterology Clinic

This is the clinic we go to, so I feel very comfortable with this hospital.  I also feel they have one of the best pediatric IBD websites.  They have some great resources online including brochures, videos and learning activities to help children understand IBD.  Most of the larger children’s hospitals have their own GI clinic information, so be sure to check out your local hospital's resources as well.

Kidshealth (Sponsor: Nemours Foundation)

This website is a popular resource for all things kid-health related, with areas for parents, kids and teens.  There is a lot of basic health information along with IBD specific articles.  The kid areas also have great information about how the body works, which can be helpful in explaining what is happening with the body parts that are sick.

 

IBD U  (Sponsors: Starlight Children's Foundation and Children's Digestive Health and Nutrition Foundation)

This is a site for teens transitioning to college.  Obviously, with a young child, I’m not really in need of this information yet, but I believe knowledge is power and being prepared is half the battle.  If I can keep a few steps ahead of where we are now, I feel more in control.  And although I don’t spend a lot of time reading this site, I like knowing it’s there.

 

BEST BLOGS

 

Inflamed & Untamed

This is a blog written by a brutally honest, Sara Ringer, who has been through just about every miserable aspect of IBD that a person can go through.  She is a passionate advocate and tells it *exactly* like it is.  There is no sugar coating on this blog, and although it is upsetting at times, it is nice to have an honest look at what this disease can do.  I also find Sara to be incredibly inspiring and really appreciate the time she takes to advocate for this disease, including as a counselor at Camp Oasis.

 

I Have UC

This is hybrid blog/forum written by a guy named Adam, who has UC and started his site back in 2010. He has created an impressive and supportive community here with many shared reader stories, surveys, videos, resources and more.  Some of the stories are sad and quite scary, but there is also a celebration of success going on...definitely worth a visit.

 

The Great Bowel Movement

This site may not be for everyone, but I like that it takes a different approach to activism.  They claim to be “Making Crohn’s and Colitis Cool” which, honestly, is a stretch.  But I appreciate the use of dark humor to help people make it through the tough stuff.  Sometimes you do just have to be able to laugh at things even at the worst of times.   And for people who are not familiar with these diseases, a lighter approach can help take away some of the “ick-factor” of IBD.

 

My Not So Normal Life With Crohn's Disease

Written by 21 year-old Sarah Brocker, who was diagnosed with Crohn's when she was in 6th grade.  The blog talks about the realities of life with Crohn's, but Sarah is a fighter!  She is nothing but positive and will show you how she makes the best of a bad situation.

 

Kids With Colitis

This is a blog written by a mom whose daughter was diagnosed with UC at a very young age.  It hasn't been updated in a while, but has good info, nonetheless.  I felt that it was very relatable.

 

So, that's my list.  I hope it helps you find the answers to some of your questions.  If you know of some great online resources that I have missed, please feel free to leave comments and links in the comment section below.  I will constantly be updating and am always eager to learn more. 

If you found this post useful and would like to stay in touch, I hope you'll  subscribe to this blog and have posts automatically delivered to your inbox.  You can also find me around the web at the sites listed below:

Facebook | Twitter | Pinterest | Instagram

Thanks for stopping by and joining me in Fighting Flare.  XOXO, Cindi

Photo Source: Flickr

 

 

 

 

Happy New Year!

Just a quick note to say Hi and Happy New Year!  I hope you are all well and had wonderful holidays.  I, personally, am so happy that the holidays are over and am excited to do some blogging.  I've had so many ideas running through my mind over the past few months and I can't wait to do a brain dump on the internet.  LOL! 

The holidays for us were the usual whirlwind of events, visitors and travel with the added drama of an unexplainable flare that started in early December.  I'll go into more details later, but the good news is that we seem to be getting it under control. That said, it totally threw me off in more ways than one, hence my lack of posts over the holidays.

In happier news, I recently reached my 1-year anniversary of starting Fighting Flare...hard to believe it's already been a year since I launched this project.  I never could have imagined when I started last January, how gratifying it would be for me to work on.  I've gotten some really nice e-mails from people around the country who are fighting the same battle, made some amazing friends and learned so much from the IBD and SCD communities I've connected with via social media. 

If there's one take-away that sums up this past year for me it's that we are all in this together.  From day one, my mantra has been "Knowledge is Power" and that is constantly reinforced for me by all the support and generous sharing of information that goes on among the IBD and SCD communities.  What works for one person may or may not work for someone else, so the more we share, the more options we provide for each other.  Patients, doctors, researchers and caregivers all over the world are coming up with new ideas every day and I am hopeful that we will see some new and better treatments soon and maybe even a cure within my daughter's lifetime. 

Until that happens, I'll continue to share what I can via this blog and my other social media platforms.  I am so happy to be riding this rollercoaster with all of you...it's so comforting to have the support of so many other like-minded people who get what we're going through.  Please feel free to reach out and e-mail me or comment on blog posts any time.  I love to hear from you, read every comment and always respond to e-mails.  And if there's anything in particular you think I should blog about, tell me!  I want this to be helpful for you! 

Thanks so much for a great first year!  Wishing you all good health, a deep, sustained remission and, of course...lots of delicious food in the New Year!   XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

Photo via Pinterest

Fighters of the Week: Addy + Nicole Kittelson

It's been a while since I featured a Fighter of the Week, so I'm gonna double down today and introduce you to not one, but two fierce IBD Warriors...a mother-daughter duo I am proud to say are my friends.  I met Nicole through an SCD support group on Facebook last winter.  Her daughter, Addy, had recently been diagnosed with Crohn's and was really struggling with her symptoms.  As it turned out, she lives in Seattle and her daughter is being treated by the same doctor as my daughter.  We eventually met in person along with several other SCD/IBD families in our area for an afternoon of bowling.  Our girls hit it off as fast as we did and even ended up bunking together at Camp Oasis this past summer. 

Addy and Nicole are two of the sweetest, yet toughest people I have ever known.  From hospital stays to tube feedings and a seemingly endless struggle just to be able to keep food in her body, Addy has fought for her health with everything she has.  During the spring & early summer, she spent four and a half MONTHS on enteral nutrition (ENT)...that means nothing but liquid protein "shakes" as her sole source of sustenance for 18 weeks...and she still managed to have fun at camp.  How many adults do you know who could do that, let alone do it with a smile and a thumbs up?

Nicole has been fighting just as hard to help get her daughter into remission.  With the blessings of their GI, she started Addy on the Specific Carbohydrate Diet (SCD) shortly after her diagnosis. Unfortunately, Addy's entire GI tract was so extensively ulcerated from her mouth to her anus, that she couldn't tolerate any solid food and as I mentioned above, needed to be stabilized via enteral nutrition.  Once Addy's gut had healed, solid foods were reintroduced and SCD has helped to keep Addy in remission for the past six months without ANY medication.  If that's not an SCD success story, I don't know what is.  

Ultimately, Nicole wanted to do more, so she signed up for the Crohn's and Colitis Foundation of America's Team Challenge program and will be running the Star Wars Half-Marathon in Disneyland on January 18 to raise funds for IBD research.  She has been training and fundraising for months and has raised an impressive $4,600 to date with several weeks of fundraising still to go. 

In her own words, here is why Nicole is running:

"Almost 8 months ago my youngest daughter was hospitalized for 8 days. She had lost a ton of weight, wasn't eating, couldn't eat, hundreds of ulcers lined her entire digestive track. 8 days in the hospital, feeding tubes, invasive procedures, and days that were so frightening we worried we would lose her. The diagnosis....Crohn's Disease. A life long, life changing, autoimmune disease. The battle - fighting to find a cure.

As I write this, the images of my baby fighting in the hospital brings tears to my eyes. I know the fear I felt, I can only imagine the fear she felt. Today she continues to live with this disease. Some days are amazing and she feels "normal". Other days she lives the life of a little girl wishing for some normalcy and no pain. I am not a runner, but I am training to run and raise funds to help find a cure for this disease. I don't have control over how this disease affects my child's life, but I have control over fighting on her behalf. She isn't alone."

If you would like to help Addy and Nicole in their fight to find a cure for Crohn's Disease and Ulcerative Colitis, you can make a tax-deductible donation to the CCFA via Nicole's fundraising page here: http://www.active.com/donate/starwarsdisney/swnKittel

Another way you can help is to purchase an IBD Warrior t-shirt or hoodie like the one Addy is holding below.  I designed these especially for Nicole and Addy, and you can purchase yours on TeeSpring here: http://teespring.com/remissionisnotacure  You can also purchase a more masculine version that Nicole designed here: http://teespring.com/myguts   These campaigns will run through December 17th, with all of the proceeds going directly to the CCFA to support research and patient programs.  These would make wonderful holiday gifts for the IBD Warriors in your life...just sayin'.  ;)

I am so proud of Nicole and Addy and am grateful for their inspiration and massive fundraising efforts.  Awareness is a wonderful thing, but truly, money makes the research go 'round.  Even though Addy is in remission now, she is not cured.  Her body could decide to launch a new attack on itself at any time.  The ONLY way to put a stop to Inflammatory Bowel Disease is to find a cure.  And that takes money.  If you have been touched by Addy and Nicole's story, please consider donating to Nicole's Team Challenge campaign...every little bit helps: http://www.active.com/donate/starwarsdisney/swnKittel

Thanks so much for stopping by and for supporting this week's Fighters in any way you can.  If you're unable to donate, please take a minute to leave some supportive comments for Nicole and Addy. 

XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog

Hanukkah Bento Lunches (SCD & Paleo)

Woo Hoo!  It's time for another round of fancy holiday themed lunches...this time for Hanukkah!  And I'm even sharing these BEFORE the holiday??  Can you believe it??  LOL

These are all based on the traditional Hanukkah colors of blue, white and gold, but I've also added some purple and orange accents, because there's a limit to what you can do with blueberries as the only blue food option.  ;)

In the first lunch up top, I've used gorgeous purple carrots which have the added bonus of a gold center...love those things!  For the gold gelt, I wrapped a few dried apricots in gold foil candy wrappers that I picked up in the baking aisle of my local party store for less than $2.  You could really wrap up anything to make it special, but dried apricots, cookies or round slices of cheese look most like gelt to me.  I made the applesauce purple by mixing in some blueberries.  The blue gelt are 3-Ingredient Honey Peppermint candies that I found at Trader Joe's...these things are the bomb!  They are made up of unsweetened chocolate, honey and peppermint oil.  The chocolate is not technically SCD legal, however, we have been able to add cocoa back into my daughter's diet and she LOVES these candies. 

In the bento below, I used carrots to make a giant purple candle with an orange carrot flame.  The orange bag of gelt and dreidle are a fun nod to a favorite holiday game.  Fruit, nuts and a cheddar cheese dreidel round things out.

This fun lunch features an assortment of fruit, cheese, nuts and veggies...and, this time the applesauce is garnished with some pulverized freeze dried blueberries.   The Star of David cheeses were cut free-hand using a paper star that I traced as a guide.

In keeping with the candle theme, I used a large white carrot, sliced in half to make two white candles with carrot flames...I have made these with mozzarella cheese sticks in my pre-SCD life and they are always a hit.  You could still make these with SCD-legal cheese if you want. 

This lunch features a pinapple menorah with mandarin orange flames, surrounded by blueberries and a mini yellow bell pepper filled with white and orange carrot coins.

And last, but not least, this lunch features a trio of yellow carrot candles and a colorful fruit salad.  Cheese, nuts, a mini bell pepper and some sweets make up the rest.

Oh, but wait! For those of you who don't have a Planetbox, I didn't want you to feel left out.  You can still make fun bento lunches!  This is what you can do with a dollar store container and a few silicone muffin cups.  Just pick some color coordinated food and have fun!

I hope these lunches have inspired you to make something special for your kiddos for the upcoming holiday!  I'm actually one lunch shy here of having one for each day, but I figure you've got a weekend in there, so you really don't need eight lunch boxes, do you?  Maybe you can share some of your ideas with me.  Feel free to leave comments or post photos on my Facebook page or tag photos with #FightingFlare on Instagram.  Thanks for stopping by!  Definitely check back tomorrow for my lastest inspirational Fighter of the Week feature...you're not going to want to miss it.  XOXO, Cindi

Facebook | Twitter | Pinterest | Instagram | subscribe to this blog