Letting You In On A Secret

There’s a part of my past that I haven’t really shared with you.


I’ve been pretty irresponsibly open about the anorexia in my past, but there’s also another part of my history that was equally defining, perhaps even more so. And that’s Ulcerative Colitis.

If you don’t know what that is, it is the “sister disease” of Crohn’s disease, which is more well known — they just affect different parts of the intestine. Basically, it is an auto-immune disease, meaning the body attacks itself, and it affects your digestive system. And there is no cure.

And the reason that I haven’t really shared much about this is that it is so intertwined with my development of anorexia.

I was diagnosed with Ulcerative Colitis when I was sixteen, and subsequently developed anorexia shortly afterwards – in large part because of the pain from eating due to the UC. The UC made me lose weight, as I was unable to absorb nutrients because my intestines were lined in ulcers and I had developed gastroparesis (paralysis of the pyloric valve in the stomach), but it was exacerbated by my fear to gain weight from the anorexia.

They were happening simultaneously.

Which also allowed me to use UC to my anorexia’s advantage.

Top it off with having to take literally the highest dose of the steroid, Prednisone, which made me hyperactive, and you’ve got the recipe for disaster. And fun fact, Prednisone is nicknamed the “dirty drug” because of its negative mental and physical side effects.

The thing about UC is that you go through periods of remission, and periods when you’re in an active flare, which can range from anywhere from 1 month to -as I found out, 10 months. I don’t need to go into detail, but flares are excruciating. My mom always jokes that childbirth will be nothing for me after the pain I’ve had to endure.

So I was actively flaring when I developed anorexia. The steroid did work after about 3 months, and put me into remission, but it left some long lasting effects that I still deal with to this day.

Fast forward five years later to 2012, and I started to flare again. And it was worse.

This time, I went to a different doctor. The highest rated GI doctor in the midwest. He was appalled that my previous doc had put me on Prednisone, given its dangerous side effects for young women in particular. Namely, the mental side effects, and the fact that it significantly increases your risk for osteoporosis. So he will not prescribe it.

That was music to my ears, because after the episode with it in high school, my parents and I vowed that dirty drug would never cross my lips again. #ItNearlyKilledMe

But this second flare, it was out of control. I had to move home from NYC. I was on bed rest for 10 months. Nothing was working. I went to probably 5 different GI doctors within the tristate area, I went to naturopaths, specialists. Took mega drugs, natural medicines, pills, powders, drops, homeopathic remedies, experimental drugs that were still in trials, herbs, supplements, chlorophyll. We even tried faith healing. Nothing worked. My condition kept getting worse and worse.

Hospital Visit for UC ~2012

Given that UC is an auto immune disease, in the most severe cases, the symptoms can become extra-intestinal, meaning that they show up in other areas of the body, outside of the ulcers in my intestines. During this flare, I was experiencing erythema nodosum. Google that shiz. For two months, I was getting nodules the size of oranges and grapefruits on my knees and shins, making me unable to walk. Mine spread to my forearms too. Unsightliness aside, it was also excruciating. The ulcers in my intestines also spread to my mouth, and for several weeks, the sides of my tongue became covered with ulcers, and I was unable to eat. Period. Additionally, given the fact that UC is an inflammatory disease, I would get fevers of 104 degrees, as fevers are the body’s way of fighting inflammation. Nights consisted of cold compresses to break the fever, followed by debilitating, tooth chattering chills.

Things were dire. And my family and I were becoming more and more desperate as the days and weeks went on and on.

The last and final option was to undergo surgery to remove my intestines.

During all this time, I had been researching. Reading different books and looking into different studies on the internet about UC and how people have gotten better and even healed from it.

And the one thing that I had been reading – and also experiencing – was that none of the doctors were talking to me about what I was eating. None of them were talking about my diet.

Which, when I stopped to think about it, was really odd. Ulcerative Colitis is a digestive disease…shouldn’t the food I was eating be the first thing you look at?

I’m not a doctor, but that just made sense to me.

And so I got to researching.

During one of my early visits to the naturopath, he suggested that I go on the Specific Carb Diet, an anti-inflammatory therapeutic way of eating.

He explained it as a very restrictive diet: No grains, gluten, dairy, sugar, soy, beans, legumes, potatoes or corn. But although very rigid, has produced promising results in people with Crohn’s, UC, and autism, surprisingly.

But I am in recovery from anorexia. There’s no way I could adopt a restrictive diet. I do not want to be restricted again. I am free from restriction in my life. I am not going back to that place.

So I put it out of my mind.

That is, until I was facing the last option of getting my intestines removed.

So I tried it.

And you know what? It worked.

It put me out of my flare and into remission. For good.

Ten months after starting that horrible flare, I was back in NYC, living vibrantly and abundantly.

I have my health back. I have my life back. I have my future back.

And it’s thanks to the Specific Carb Diet – SCD.

But let me give credit where credit is due – I know that it was truly God who healed me.

When I told my doctor that I wanted to wait on the surgery and give the SCD a try, he “poo-poo’d” it, saying it would never work. That I was writing my own death wish. He literally said that my healing was a miracle. Something that he’s never seen.

God facilitated my healing through the SCD. And for that, I am forever grateful.

But obviously, it’s hard to talk about food on an anorexia recovery blog, when a person could look at the way I’m eating – following the SCD – and proclaim that I’m not truly in recovery, when I’m still eating a restrictive diet. That I’m a “faker.” That I’m disingenuous. 

Especially given the fact that I used my UC in the past to my anorexia’s advantage.

So up until now, I’ve left it out of my story.

But the fact is, it is a huge part of who I am. And how I live my life. And the roles God and faith and trust have played in my life. And in what I’ve had to overcome.

During that time, I never lost hope. I knew that God was going to heal me. He had gotten me through my anorexia, He would get me through this flare too. He was going to teach me something, make me grow, give me a perspective that I could have only gotten through that suffering.

While I was sick, I began documenting the foods I was eating. The recipes I was making that ultimately healed me of my UC. What started as a blog for my own personal records quickly took off and developed into a pretty highly trafficked blog. I even published a e-cookbook.


But I haven’t talked about it for fear of people doubting my credibility. Doubting the authenticity of my recovery.

So I’m just addressing it head on.

Being home this week, inhabiting the setting where I have so many memories – from the dark days of my anorexia, as well as the dire days of my UC flares, I can’t help but reflect on my journey so far. The journey that hasn’t always been the road I would have chosen. But it’s the road that has gotten me to where I am today. To who I am today.

I don’t know why things happen, or why we have to endure the things that we do, but I do know that we are never in it alone.

I can safely say that I could not have gotten through those periods in my life without God. He held me up. He supported me. Gave me the grace, moment by moment to endure. And ultimately overcome.


So thanks for letting me share that with you tonight.

I know there are no funny cat gifs or flashy Ryan Gosling appearances, but you guys mean a lot to me, and you deserve to know my whole story.

Consider this one step closer to me working up the courage to fully introduce who I really am.

Sending the biggest hugs and love.

Advertisements

Published by

beautybeyondbones

BBB: Because we're all recovering from something. // For speaking/business inquiries: beautybeyondbones@yahoo.com

408 thoughts on “Letting You In On A Secret

      1. Amen, and there is healing in His creation.. If you research extra virgin pine nut oil (EVPO) for UC, it is 1 teaspoon 1/2 to 1 hour before meals.. it is also helpful for other stomach ailments. God Bless, thanks for the hug 🙂

        Like

  1. I think you are not only beautiful, but very brave. I felt when I started my blog that it was an anonymous way to clear the clutter in my brain and life. I’m glad it is not as anonymous as I thought. Your story has helped me be more open.

    Everyone struggles and we can learn from each other and encourage one another. Thank you for your story.

    Like

  2. Thank you for liking one of my blogs (lifevolumeone). I’ve read several of yours now and I’m following. I’ve had my share of digestive issues over the years. That’s where God finally got through to me about trusting Him, really. Thank God for you and your testimonies. That’s what we’re put here for. Bless your heart! Tex

    Like

  3. This is so incredible. My sister is struggling with anorexia and trying to get over it. Thank you so much for giving me hope that she can get over it and live freely💛💛

    Like

  4. As I read this my mind went back over the 40+ years my brother suffered from crohn’s disease and I just “knew” that gluten free was going to be a part of your solution. My brother didn’t find this until he was in his 70’s. It’s not perfect after all that time, but it’s certainly beneficial. I applaud your perseverance and love that you, too, have a solution. Sounds like God has already blessed you, but I’ll say it anyway. God bless you and good for you for keeping the faith. Also, I appreciate that you find something worthy in my blog. Perhaps it’s not that but more of “wonder what he’s going to say next?” Truth is, I just never know. Peace to you.

    Like

  5. I was worrying about you for a while. glad to know that you are getting better. I also remember my prayer on the verge of dying from my cancer. I am living an extended life. I know there is a purpose. And you know that there is a purpose for your life. It was beautiful that you open up, so that other people don’t feel that they are alone. Thank you for liking my new post. That was real, it was not imaginative. I believe in angels!

    Like

  6. I am so glad the diet has helped you! I can relate, as I deal with IBS with diarrhea, so I am on a gluten free, dairy free, corn free diet, and I am doing much better, too. I also take a probiotic that is helping (Garden of Life, Dr Formulated probiotics once daily Women’s). I am so glad you did not have the surgery!

    Like

  7. I’m really sorry that you have to deal with UC… it’s such a debilitating, relentless and unpredictable disease. My beautiful daughter was diagnosed with Crohns when she was nine years old. She’s now thirteen, and we’re having a lot of trouble. She, like you, is used of high levels of pain and constant issues. Ellie also endured Steroids in the early days and my goodness, they were horrendous. She’s vowed never to let a doctor put her on them again (and she has my full support). Good on you for trying such a difficult diet. It’s certainly provided food for thought for my daughter. Thank you and may you continue to heal and enjoy long periods of remission. Bec x

    Like

  8. […] There was no sporting event, dance recital, play, parent-teacher conference, or family dinner that my dad missed. We joke that he’d literally change clothes in the bushes to make it to my brothers’ football practice after work at the office. (He was their little league assistant coach). He turned down job promotions that would have moved our family to the Philippines, Germany, China. Don’t get me started on the dedication he had to helping me heal from my anorexia and ulcerative colitis. […]

    Like

  9. […] There was no sporting event, dance recital, play, parent-teacher conference, or family dinner that my dad missed. We joke that he’d literally change clothes in the bushes to make it to my brothers’ football practice after work at the office. (He was their little league assistant coach). He turned down job promotions that would have moved our family to the Philippines, Germany, China. Don’t get me started on the dedication he had to helping me heal from my anorexia and ulcerative colitis. […]

    Like

  10. Ok so I know this comment is mega late but I HAD to read this post because you linked it up in your most recent post so well and I was curious. I wanted to cry, this is so beautiful and touching and I’m on my period and I shouldn’t be reading emotional stuff like this…! I’m just so happy for you after reading this like your life is literally and figuratively a miracle and I’m lucky enough to be able to witness it here on this blog. Thank you so much for writing this, I can’t even express how I feel right now. Just know that you’re a beautiful soul and your blog has and always will be my favorite. (Just don’t tell anyone I said that! C:) I don’t want to detract the attention from you but I just wanted to say that reading that part where you talked about starting your blog as an anorexia recovery thing and feeling weird talking about food really reminded me about how I started my blog. I was just about a month into recovery from my jaw surgery, and I still was eating mush for food, and my blog was sort of like a way for me to get away from that. Sorry this comment is so long but I just had to say something!

    Like

    1. Hi again my beautiful friend. Gosh, thank you for this. I am so touched by your kind and affirming words. Thank you ❤️ I was so afraid to publish this post and I so appreciate how you’ve made me feel so accepted. I’m grateful for you. And I’m so glad it hit home with you. Lots of hugs and love xox

      Liked by 1 person

  11. Hello BeautyBeyondBones! My name is Gabi and I also suffer from UC. It’s a shitty disease – literally and figuratively. I just started my own blog as a way to provide myself with a therapeutic outlet for my personal struggles, UC being one of the biggest. Stumbling across this post has made me so happy. Being open about this disease, our disease, is one of the hardest things I’ve ever done but every day that I accept it a bit more is so freeing. Your courage for writing this post has inspired me. I am so sorry that you had such a horrible battle with UC. I am SO glad to hear that you are doing so well now in recovery. Beautiful words like yours make remind me that everything gets better in time and to never lose hope. Thank you ❤

    Liked by 1 person

    1. Hi Gabi! Thank you so much for this kind note of encouragement. I’m so sorry that you can personally relate to UC…I’m so glad that our paths crossed! thanks 🙂 yes – there is ALWAYS hope to be found. Can’t wait to read along with you on your journey 🙂 big hugs xox

      Like

  12. Your story is so inspiring. I’ve happened upon your post as I desparetly search for cures for my husband who has suddenly been diagnosed and been flaring horribly for four months. Hea down 20 lbs in 30 days and was close to hospitalization today. He’s not responding to meds and the changes we’ve made. Once he’s able to do more than sip Ensure, this is the diet we will begin. Thank you!!

    Like

    1. Thank you Abby. Wow, what a kind note of encouragement. Oh gosh, I am so so sorry that your husband is going through that. I will keep him and you in my prayers. Yes, this diet is what is keeping me in remission. I hope that it will bring healing. Hang in there. Big big big big hugs xox

      Like

  13. I followed a link here today and was blown away by the honesty in this post and the incredible bravery it must have taken to write it. It’s inspiring to know that despite what others may “label” you, you still put it out there. I’m sure it gives encouragement to others who are struggling with similar emotions, even in different circumstances.

    Like

    1. Hi there! oh good! I’m so glad our paths crossed! thank you so much for your kind words and encouragement. you’re right – we are all more than just a “label.” grateful for you!! have a great night! hugs and love xox

      Liked by 1 person

  14. wow, that is quite a story. At 56 years old I have had digestive problems for years, but never knew what the problem was. Various doctors prescribed antidepressants and other medications with no improvement. Exasperated I finally went to a naturopath who suggested I have food sensitivities, predominantly wheat. Wheat free for almost 5 years now, I feel much better. If you get a chance, read some of my earliest blog posts, this journey inspired me to start my blog.

    Like

  15. hey, thanks so much for this wonderful post. I suffer from IBS and I thought that was hell! But reading this has made me realise that I am comparatively in such a better condition and given me a lot of strength. Though my health has improved over the years I still have its fear in my mind that I am unable to get rid of. Also, I am totally unable to open up about my issues and reading blogs like yours is so inspiring. Kudos to you and lots and lots of best wishes. Perhaps you can write a piece on how you found the courage to open up about this. I am still staying anonymous .. hehe .. 😛

    Like

    1. Thanks so much, Sylvan, for sharing some of your story. I’m so sorry that that connects us. But I’m glad you’ve found encouragement and hope here 🙂 Know that I am in your corner. “tummy troubles” are the worst, and I find it’s nice to know that someone else out there can relate 🙂 thanks for stopping by! hugs xox

      Liked by 1 person

  16. Wow, I am so incredibly happy you were able to turn your UC around. I am dealing with some “maybe auto-immune” issues of my own and would appreciate if you could read my first entry. Thanks so much ❤

    Like

  17. My dear friend,

    How much you had to suffer – your words have touched me deeply and filled my eyes with tears. I am very happy that you made your way back to a healthy body, to a life of living it consiously. You are right – all credit and thankfulness goes to God 🙂

    Allow me to hug you, dear friend
    All the best for all time to come
    Didi(Artist)

    Like

    1. Hi Didi, thank you so much for your kind words. I’m glad this resonated with you. You’re right, it’s been a bit of a journey, but I am grateful to God for His goodness, because it brought me to where I needed to be. Even though the hard times, He was always there. Thanks for the encouraging words and hugs 🙂 Sending some right back atcha! have a great week. xox

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s