Letting You In On A Secret

Posted on by beautybeyondbones

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.

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beautybeyondbones

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

423 thoughts on “Letting You In On A Secret”

  1. Thank you for sharing. Can I send you a print for your open-heartedness? Let me know which image you’d like on my blog. I hope you are having a beautiful day! -Hope

    Liked by 1 person

  2. I appreciate your openness with sharing about your struggles and what you’ve gone through. I don’t have UC, but I do have an auto-immune disease (narcolepsy and cataplexy) and I can – to a certain extent – understand how it feels when no one really gets or understands what you have. I love how you said about God teaching us things through suffering. I think that’s so true. I know I wouldn’t be where I am in my walk with Christ today, if I had not gotten narcolepsy and cataplexy. Anyway, thank you for sharing 🙂

    Liked by 1 person

  5. What an encouraging testimony. My nephew has Crohn’s disease and is living an active life, currently a pitcher in college baseball, being wooed by major league scouts. But it’s been a constant battle.
    What you said about doctors not looking at diet (especially with digestive diseases) is sadly true.The same is true with how cancer is treated (people diagnosed with cancer should check out Ty Bollinger’s “The Truth about Cancer.”) The problem is, they’re not trained in nutrition, mostly in treating symptoms. I’m glad you went to someone who understands nutrition and healthy living.
    The good news is, God has designed our body to heal itself when given the chance with the right foods, exercise, etc. I think you’ve proven that! 🙂
    Blessings to you.

    Liked by 2 people

  7. I think it was a very good idea to share your U.C. story. You are able to reach out to other people struggling with that. To me it makes perfect sense that a certain diet could help together with God’s intervention.

    Liked by 2 people

  13. This is awesome of you to post. It’s crazy because I actually have Crohn’s disease, and I have gone through a lot of the ugly stuff you have. It was totally not a coincidence that I happened to click on your page. This was so encouraging!

    Liked by 2 people

  14. Knowing the “Complete” story of Beauty? There’s a phrase in the scriptures that says “be ye therefore perfect, even as your Father in heaven is perfect”. “Perfect”, in this sense, is not “flawless”. Rather, it is “complete”. And by Complete, it means “having all the necessary pieces that make you WHOLE”. All your struggles and successes, your sicknesses and life…these make up You…the Complete You…the Perfect You. No need to apologize for being more Complete in who you already are…as we strive to be a bit more like Him as well . It’s exactly what Father in Heaven wants us to be.

    Liked by 2 people

  15. Thanks you for sharing your secret, it’s really brave of you. I too am in recovery from Anorexia and have an autoimmune disease (I have SLE/Lupus). I was diagnosed in September of the year I graduated and a few short months later I slowly began the descent into Anorexia. The two were absolutely linked. For me I think it was a way of regaining some kind of control over my body, that felt totally out of control. It was also a way of beating myself up, as I blamed myself for my autoimmune disease, feeling I must have done something to deserve it. Like you, I’m now working hard at dealing with the illness and seeing the light at the other side, although I’m not a practising Christian so my methods are slightly different. Like you, I’m finding blogging about it very helpful. Keep up the good work! XX

    Liked by 1 person

    1. Hey Natalattef, thank you so much for sharing this. I’m so sorry that we have that that connects us, but I’m so glad you’re on the life-giving Journey of recovery. Know that you are in my prayers and that I am rooting for you. Stay strong warrior. Your courage is inspiring. Hugs and love xox

      Liked by 1 person

  19. Big hugs and love right back, Sister. And I thought Irritable Bowel Syndrome was tough to live with. Some people might say it’s not a miracle. It was just a change in diet. Not saying that’s true, but even if it were, I have no doubt the reason you found a diet that worked was because you were in prayer and seeking God. And hey, if being able to recover from both anorexia and UC and live a healthy and happy life is not a miracle, tell me what is?
    One suggestion: Next chance you get, put up a link to your ecookbook.

    Liked by 1 person

    1. Hey David! Thank you so much:) you’re right-God is good and he definitely had a hand in it! And yes! I’m working on it! Going to at least post a recipe here soon. I would attach the cookbook link, but it has my name on it … So I’m working on it:) but thanks for that suggestion! Noted!! 🙂 So glad you stopped by, Hugs and love xox

      Like

  20. Thanks for sharing this! I have had severe problems with eczema and have had to be on Prednisone several times. It is the worst! And finally, started to realize that it was diet related, too.

    thanks for sharing your story and your testimony of God. This was an inspiring post!

    Liked by 1 person

  22. Thanks for sharing! Your story is inspiring and it’s always great to read how God has worked and is working in a fellow sister’s life. It also goes to show that no one knows your body better than you! Doctors don’t know everything. Praise be to God you have your health and your intestines!

    Liked by 1 person

  23. I went through something really similar.. I struggled with anorexia in high school. Last year I started to get super nauseous. Nothing helped but taking enough meds like ativan to just put me to sleep. Even then I’d wake up and need to throw up… I got to the point where I was bulimic and eating just so people wouldn’t question me, and in fear of getting sick I’d just make myself puke.
    I randomly got better. None of the tests showed anything but I never had an MRI… after researching my gastroparesis might be ms or something… my entire body is affected, especially my nerves.
    It’s encouraging to know I’m not alone… it sucks being mentally/physically sick because your dr doesn’t see you as you really feel at all…
    I just started eating again and not as nauseous all the time… I’m thinking it’s not permanent though. Just trying to enjoy my time while I have it 🙂

    Liked by 1 person

    1. Hey Michelle, oh gosh I’m so sorry to hear that you’re going through this. That sounds really tough. I’m glad that thing are starting to get better though! I’ll be praying for you. Hang in there warrior. Hugs and love xox

      Liked by 1 person

  24. My daughter has been suffering for over a year and no one can seem to help her. You mentioned an ebook. Is there someplace I could get this from? She has been through test after test and no one seems to be helping. Her last medication only made it worse. I have been researching high and low but nothing seems to be pointing me too the right direction. Thank you in advance for any suggestions which might lead me to an answer for her.

    Liked by 1 person

  28. God really is good. It’s so easy to chalk it all up to our own efforts, but it really is God who takes care of us and heals us. And even when He doesn’t heal us or answer our prayers the way we want, His plan is perfect. It takes a real relationship with Him to recognize it. Thank you for your transparency and courage to share.

    Liked by 1 person

    1. Hey again friend! amen to that – He is the ultimate healer. We just have to trust in His perfect plan and timing …which is a lot easier said than done! definitely something I’m still working on! hugs and love xox

      Liked by 1 person

  30. Aw wow! Inspired by your honesty! Your life is a testimony to his grace and undying love for you! Thank you for sharing your heart! May your feel even more freedom as you open up! So grateful that I know you and have known you these past 15 years! I love you! Hugs

    Liked by 1 person

    1. Hi Liz 🙂 Aw it warmed my heart when I saw your name pop up on here. Thank you. I am so blessed to have you in my life and I thank God everyday for you. Seriously, you have been a source of such love and friendship. You’ve always been there for me, and for that, I am forever grateful. Love you Liz.

      Like

  31. I would love to chat sometime, your struggle with health issues driven by dietary issues is very similar to mine in some ways. Mine came out more as respiratory issues, but still, I’d love to hear more of your story. I always feel lucky when I find someone who’s gone through something similar. Even just swapping stories is awesome.

    Liked by 1 person

      1. I like the fact that God uses our past experiences for His own Glory.. and be a blessing unto someone else.

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  34. I believe your willingness to share your story is a gift you give to others — and to yourself — that will touch the lives of others in ways you will never comprehend. Thank you.

    Liked by 2 people

  35. BBB surely there are no secrets among friends and you know God knows all of our hearts. You shouldn’t have self doubt, or think about others questioning your credibility. Your truth, when spoken with a sincere and contrite heart relies not on the thoughts of others. Perhaps, God felt you were ready to share another aspect of YOU – to help and encourage others?
    I believe, we, when working TRULY in the Spirit of Jesus, are used by God as instruments of support; guidance; encouragement and inspiration to others. I have my share of auto-immune disease (and others), I suppose that’s why I have a lot of empathy for you -for again I know, God works in ways that are full of dignity, grandeur and at times mysterious. May you share in the abundant blessings of God and continue to encourage others who may be struggling with eating disorders or auto-immune diseases.

    Liked by 2 people

    1. This is such a beautiful reflection. Thank you. I’m sorry that we have ai issues that connect us, but amen to that-God works in all those ways, even when we sometimes don’t understand. I really appreciate your encouragement this morning. Hugs and love xox

      Liked by 1 person

  36. You are not a FAKE, Dearest. You are the real shizz. I mean that with the utmost love and respect. I’m sorry you had to go through all of that. It sounds like you are on definitely on the path. I admire you and wish you love and blessings.

    Like

  37. So glad you have recovered! I have colitis, but not the same kind. Was hospitalized more than once, but continued with symptoms. Recently my Dr. suggested I try Pepto Bismol. It has helped me, but I have Microscopic colitis. That is different. Praying for you…

    Like

  39. This left me astonished! Thank-you for sharing something so powerful but yet so practical! You are a true miracle indeed.

    J. Vagabond

    Like

  44. Obviously by being vulnerable and sharing you have connected with many including myself. I was sad thinking about the pain you have experienced. I am confused by the struggles that I have had and face when faced with statements about answered prayers. In my heart though I hang on on those days, and you did too.

    Like

    1. Thanks for this thoughtful response. Yeah it’s definitely hard to try and understand the unexplainable, especially when looking into the snarl of a lion. I don’t know if that makes sense or communicates what I was trying to say, but know that I’m sending you big big hugs my friend. Xox

      Liked by 1 person

  45. this would apply to your faith in GOD

    stories of hope series #2 the light

    He traveled all night anxious to get home
    He heard the familiar ring and picked up his phone
    With tears in his eyes he covered his face
    For it was his wife-Samantha-Samantha grace.
    Her doctor had told her that she was dying
    And seeing this specialist was worth trying.
    So she packed up her bags and was waiting for him
    But the doctor had said her prognosis was mighty grim.
    When he arrived she was ready, the trip they
    Would make would be fast and steady.
    She climbed into the cab and they were on their way
    She folded her hands and began to pray.
    Dear LORD “ this can not be? “
    What’s going to happen to my family?
    Choked up with emotion he could not control
    He asked GOD to save this beautiful soul.
    A better wife and mother could not be found
    She should not have to be laid in the ground.
    As they drove down that dark lonely road
    Thru the trees a bright light was shown.
    He knew it could not be sunrise
    He was shocked and surprised.
    He applied his brakes and slowed down to see
    But this light was a total mystery.
    They stopped the truck and got out of the cab.
    He looked at his wife and she had a smile on her face
    “ this was his wife- this was his grace”.
    There was an aura around her that he
    Had never seen before, and would not see ever more.
    They both dropped down to their knees
    as the light got closer, and in that light they could see
    An angel floating ever so gracefully.
    The angel floated down and touched the top of her head
    And then whispered in her ear:
    Do not fret for things will get better yet.
    And as quickly as he came he disappeared.
    And the light whisked back up into the sky.
    I looked at her and she looked fine.
    We arrived at the office of the specialist
    With the x rays they had given grace.
    The doctor looked at them and pointed to a spot
    And said the cancer had spread, but he would run
    His own tests just to see, if there was something
    That could give him some hope.
    He took more x rays and did a cat scan
    I sat there and held her hand.
    We sat there and it seemed like an eternity
    When he entered with a smile and said
    “You’re cancer free”. I can not explain
    For the tests they had taken were the best in the land
    This is something I can’t understand.
    We left his office with a new outlook on life
    With HOPE in our hearts, the LORD
    Saved my wife.

    HOPE IS THE KEY TO SET OURSELVES FREE

    louis rams :

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  47. Your writing is so very powerful and I love the images and words that you choose to add to your entries. Sending prayers for continued success on your journey.

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  49. I experuenced the agony of Crohn’s disease as a young woman and had surgery. I had a horrible time with the disease for two years 1996-7. I used to sit on the toilet and lie on the bed trying not to cry out in pain because I had young children. I asked God many times to heal me. The symptoms became less but I would still have agonising times. One night in 2002 a person prayed for me in the name of Jesus. Not a symptom in 14 years!
    I am a healthy eater but I haven’t been on any special diets:I avoid fried foods and any sucrose. I am grateful every time I remember the agony I used to be in. Thank you God.

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    1. Thanks for sharing this Genevieve. I’m so sorry that you suffered from Crohns. That breaks my heart to hear what you went through. Wow that is so amazing. The power of Jesus! So glad you’re doing better!! Hugs and love xox

      Like

  50. Thank you for sharing! One of my closest cousin’s also lives with UC so I can in many ways understanding what you’re going through despite having to go through it myself. Keep pushing forward and sharing your courageous story with others! It is needed.

    Liked by 1 person

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