Get Ready For a Food Fight!

Until recently, I only kinda-sorta knew what IBD was and had never even heard of Ulcerative Colitis.  My awakening came last spring when my little girl suddenly became inexplicably ill.  Four doctors in four weeks and numerous tests yielded no answers, so we were referred to a gastroenterologist.   After more testing and several procedures, the diagnosis was confirmed...my six-year-old had Ulcerative Colitis.

Ulcerative Colitis is a chronic autoimmune disease that causes inflammation and ulceration of the colon, creating pain and misery for anyone who has it.  The disease falls under the umbrella of Inflammatory Bowel Disease (IBD), which affects 1.4 million Americans...700,000 of whom are suffering from Ulcerative Colitis.  (The rest are mostly suffering from Crohn's Disease, which is no picnic either.) When the disease is in it's active state, it's called a flare.  Flares can be triggered at any time for no apparent reason. Some subside quickly, others can last for years.  Triggers and length of time between flares vary from person to person.  The goal of treatment is to minimize the symptoms of a flare and to induce and maintain remission.  There is no known cure.

I couldn't believe that my daughter's strong, healthy body had turned on itself and was now attacking her from within.  She was bleeding, in pain, anemic, losing weight and missing weeks of school.   My sweet little girl, who up until that point rarely even had sniffles, was suddenly facing an uncertain future and a lifetime of health problems.  How did this happen?

As disbelief gave way to sadness I wondered about her future.  Would she always be this sick?  How would her disease progress?  What did the future hold for her?

I also questioned myself.  Everything you think you know about yourself as a parent changes when your child gets sick.  Did I do something to cause this?  Could I have done something to prevent it?  Were there earlier signs?  Is this my fault?

The answer to all of my self-doubting questions was, of course, No.  I didn't cause this.  My daughter didn't cause this.  No one knows why it happened.  It just did. 

My rational brain tried not to imagine the worst or curse myself for things I had no control over, but my heart was not so easy to comfort.  There was a definite grieving process taking place and I felt broken.

Anyone who has ever grieved knows that eventually, you come to a point where you stop being sad and start to get mad.  Really mad.  Like mad enough that you want to punch something and maybe you do.  That urge to fight is grief's gift, really.  It is the spark that helps you pick up the pieces and keep going.  And that fight is what inspired this blog.  Cures and solutions don't come from wallowing in self-pity and sadness.  They take action.  They take persistence.  They take a healthy dose of optimism.  And in my daughter's case...they take groceries.   

Shortly after her diagnosis, my daughter's first round of meds failed and she began to flare again.  Her doctor suggested stepping up to a stronger drug, the potential side effects of which were disturbing and in many ways, worse than the disease itself.  My husband and I struggled with the decision of whether or not to go ahead with our doctor's plan.  It's so much easier to live with choices you make for yourself, but not so when making choices for a child who will have to live with the results of those choices no matter the outcome.  Ultimately, we weren't ready to take the next step until we had exhausted every other possible treatment option first.  We simply couldn't imagine how we'd be able to live with ourselves if we gave her this drug and it made her sicker, unless it was as a last resort. Fortunately, we have a very open-minded doctor who was willing to work with us to test diet therapy in conjunction with a different (milder) medication to see what we could accomplish.

There are many people who don't believe that diet can cure IBD, but there are many who think it can.  There is very little research being done and not much to go on other than testimonials from other IBD sufferers who have had success in managing their disease through diet.  After some internet and soul searching and with a heavy dose of optimisim laced with skepticism, we (as a family) decided to embrace an IBD diet called the Specific Carbohydrate Diet.  I will go into a lot more detail about this diet later in this blog, but first, I want to reiterate that we are doing this under the care and supervision of my daughter's GI doctor and a registered dietician, with regular testing being done to carefully monitor my daughter's inflammation markers.  This is a very serious food fight.

Through this blog, you will get a behind the scenes look at our experiences with this disease, this diet and this lifestyle...meaning you will hear a lot about what goes on in our kitchen.  We also love to entertain, eat out, travel and take roadtrips in our camper van, so you'll hear a lot about that too and how we make it all work. The SCD is not an easy diet to follow, but if we can make it work, anyone can.

My hope is that this blog will inspire you and possibly open your eyes to something new.  At a minimum, I hope to help spread awareness about IBD, Ulcerative Colitis and the role of diet and lifestyle in managing this disease.  We all know that knowledge is power, so the more we know, the more powerful our fight against IBD becomes. 

Thank you so much for stopping by and sticking through this very loooong first post.  I have lots of delicious things in store for you, so I hope you'll come back often.  Your comments are always welcome, so please feel free to introduce yourself and share your stories.  If you would like to stay up to date on blog posts, be sure to subscribe to this blog and have posts automatically delivered to your inbox.  You can also find me socializing around the web on Facebook, Twitter, Pinterest and Instagram

If you or someone you know has IBD, I hope you'll join me in Fighting Flare.  XOXO, Cindi

Photo Credit: Flickr

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Comments

[Juliet]

Hey Cindi,

I hope your daughter is doing ok and currently flare free. I'm glad you turned to diet to help control symptoms. I was diagnosed with UC many many years ago. I have been laughed at by specialists in the past when i had bought up the subject of diet changes and alternative treatments. It's only recently that a specialist agreed with me regard some dietary changes. The best things I have taken from my personal research and experiments is going sugar and grain free really helped. Not just with the UC but an entire list of other problems from acne to endometriosis. I've also been reading in to magnesium and all the problems a deficiency can cause. You seem very resourceful so I'm sure you have come across this too.

Best wishes,
Juliet

[Cindi]

Hi Juliet! Thanks so much for your note. We've actually had a minor setback while trying to add oats back into our diet...my daughter flared over the weekend, but we are working to get her back on track. I agree with you on the sugar and grains...I've read so much recently about the many different diets that people are using to solve a myriad of health problems and the common "nut" among them all is usually sugar and grains/gluten. Sounds like you've had some luck with personal experimentation, so that's great. Have you tried the SCD? I had not heard about the magnesium, so thanks for the tip...I will definitely look into it. Best wishes to you too! I hope you are feeling good and living flare free. Keep in touch! Cindi

[Cat]

Came across your blog through a long process that started with veggie recipes. I'll try to make this as short as possible. But it will probably still be long.

I'm T1 diabetic and I have been for 19 years, had a pancreas transplant in 08 which failed in 09, making me diabetic again. After it failed I started having problems digesting food. I was going to the bathroom once a week, and it was painful. I also was occasionally bloated and throwing up. I eliminated gluten and tested for celiac and that wasn't the answer. Tried eliminating dairy and still was sick. I decided to give up on a second transplant, and went on an insulin pump. At 5'8 and 120 lbs I managed to gain 10lbs, which had been a struggle for years. The weight didn't stick and things didn't improve, but where worse. My blood sugar numbers where better, but I developed neropathy so I was put on Lyrica. Lyrica made me sleep 20 hours a day, made me depressed and break out in blisters. After I went off of Lyrics, which was hard bc of withdrawals my symptoms regarding digestion where worse.

As a college student I had a full scheduled, and internship. I was always tired, and didn't really care how I was looking bc I couldn't eat to be productive. I started drinking Glucerna as a meal replacement and high calorie starbucks for energy, and maintain my weight. I had class all day Tues and Thur, which was hardest because I was there all day and my last class everyone brought food for dinner. (The glucerna/starbucks didn't help my bloodsugar at all, but that's another crazy story.)

Anyway, I decided to see a gastro doctor. He did a bunch of tests. I can't recall the names but the first one I was asleep and they put a camera down into my stomach to see if there was food. The second was eating an egg ans seeing how long it took to digest. In the end the doctor concluded I had gastroparesis, which I wasn't sure about bc my symptoms didn't match. The first test was positive and the second was neg. I had a few symptoms, but stomach/gi problems are pretty much all the same, and hard to identify.

Gastro doctor put me on reglan, which didn't help. (I had been on that before for transplant, and you can't be on it forever, bc it causes twitching) I had pretty much given up hope for anything. I wasnt allowed to have a pace maker or my stomach bc the first test was neg. :( So I started eating on weekends when I didnt have school or internship, and small amounts but mostly living off of glucerna and coffee. I was about 115lbs.

Switched to another primary care doctor after my current one said it was all in my head/diabetes. My new PC doctor put me on a probiotic and talked with my gastro doctor. Abt this time I had a food infection and needed IV antibiotics bc bactrum wasn't working... IDK maybe bc I couldn't digest it? Well 3 days later and on clyndomyacin I started getting better at digesting food. Told my nurse and she looked it up, saw that it was related to Eritromyacin that was used to treat Gastroparesis. After I was discharged and not allowed on the drugs anymore I told my Primary care and she talked to my Gastro. I was put on Erithromyacin and it was OK, not as good as Clindomyacin but that was IV.

Still not a 100 percent, but I had gained some weight (now at 130) I looked for a solution with food again. Found out that people with IBS do better on veggie/vegan diets. So I tried that and along with the probiotic ans erythromyacin I'M OK!!

So far I'm ok, I've adjusted and I don't miss meat that much thanks to MorningstarFarms. I miss calimari and octopus, but I'll get over it.

I tried soooooo many things, and it took forever. I still have good and bad days but mine are much better. I'm still afraid to go out and eat on a date or with friends in case I get sick, and I'm afraid to get in a serious relationship bc of my health (even longer story, but I wont say it)

I just wanted to tell my story and if you want to shorten it/edit/ or w/e for your daughter great. I know it can be really hard for her, yourself, and your family. I'm sure she's in good hands and really appreciates it. There's tons of people who know exactually what it's like. We all have good and bad days, I have a great mother, and dog which keeps me happy. As hard as this whole thing was I did get my AA this last December, but there was a time I thought I had to drop out. I kept at it, and succeeded.

(Not sure if I spelled all the medical terms right, sorry.)

Hope you're having a good day, and that your daughter is having an even better one.

<3 Cat

[Felice]

Dear Cindi and sweet daughter,

My name is Felice. I was a mother of a 2 1/2 year old girl when I couldn't enjoy my Florida vacation (May 2011) because of a gut issue. One day I was as good as a daisy, the next I was in the "you know where" multiple times throughout the day. Atfter that vacation the symptoms would come and go repeatedly. Then, we got very suspicious. So I had a colonoscopy and it confirmed the dreaded diagnosis. I HAD UC! The first med they put me on was Lialda (that just worsened the symptoms, so my Mom, who is an RN) took me off that pill.Tthen Prednisone was my worst, but best buddy until April 21,2013. The next day I started the SCD and haven't had a flair since after I gave birth to my amazing son on April 22, 2014. Being pregnant was very surreal and unbelievable! Up until that point I thought the possibility of me ever being prego was impossible because of my skinniness, and my very-close-to-being-extinct colon. You see, my sweet son was born exactly a year after I started SCD! The flare I got nearly two weeks after he was born. I was put on 20mg Prednisone, when that dose age didn't work, so they upted me to 40mg. I took it right after my sons last feeding (he slept through the night for the first 2 months of his newborn life so I didn't have to worry about him getting any of this drug in his system. On July 11, 2014 I finished my last dose and feel great now! No issues since! Sorry for the long story, but that's MY STORY.

SINCERELY,
Felice

[Cindi]

Hi Felice!

Thanks so much for sharing your story. Sounds like you had quite a roller coaster of a ride before getting into remission. Happy to hear that you are feeling better and doing well! That is great! Do you follow any kind of special diet at this point?

[Cindi]

Hi Cat! Was just looking through comments and realized I never responded to yours - so sorry! Wow! What a story...you have been through so much. I am so impressed at your strength and your fight. And it's so great that you were able to finish your degree in spite of everything you were going through. Very inspirational! I am sure that your positive attitude was an asset to your healing. Hope you are still doing well. Have you been able to add any foods back into your diet or still sticking to veggie/vegan? Thanks again for sharing! I really appreciate you taking the time to do that. It definitely helps others to see that they are not alone. :)