The Price I’ve Paid

Colorful capsules and pills on plate with fork and knife, isolated on white

It all started with one, tiny little pill. It was the first pill I was prescribed when my pediatrician suspected that I had Crohn’s Disease; it was called Prednisone. I still remember the date on the pill bottle, May 23, 1997. I was 12 years old. I knew nothing about the medication I was taking, as I was really too young to understand. Within 24 hours, the side effects started to set in. At first, it’s a welcome relief, after hardly being able to eat anything for so long. My appetite was huge, so much so that my mom told my doctor that feeding me was a full-time job. She wasn’t exaggerating. I would be dreaming of lunch while eating breakfast. I was never, ever full. Suddenly my energy also increased, which was also a great feeling, after being so exhausted for so long. Prednisone kept me up all night long, which wasn’t really a change considering I’d already been running to the bathroom 10-15 times every night, clenching my stomach and praying for the pain to stop.

Prednisone is no doubt a miracle drug, as it saves lives daily (mine included), but it can also come at a very high price. If you do a quick internet search, you’ll find that Prednisone has nearly 100 listed side effects. These include an appetite that’s impossible to satisfy (in my opinion), insomnia, anxiety, high blood sugar, increased pressure in the eyes, acne, headaches, increased hair growth, depression, mood swings, and my least favorite, what’s called the “moon face.” I experienced them all, some are worse than others. It gets even more serious, as Prednisone can also cause issues like osteoporosis and diabetes. Compared to the other side effects, most would think that a round “moon face” would be the least of my concerns, but it wasn’t. It’s not easy when a medication changes the way you look, especially as a child. Prednisone made it impossible to hide my disease, something that I wanted so desperately to be able to do. With Prednisone, everyone could see that something was different about me. I didn’t want to be different; I wanted to be “normal.” Whatever that is.

Prednisone also causes something that I’d never once been told about, the side effect that would haunt me long after I stopped taking it. It’s the incredibly high price I’ve paid for taking such a “miracle” medication.

Adrenal Insufficiency.

Adrenal, what? If you’re like I was, I honestly had no clue what the adrenals were, or what they did, until they stopped working. To keep it short, Prednisone is synthetic cortisol, which is the hormone that your adrenals produce. When you take high doses of Prednisone for extended periods of time, your body recognizes that you’re getting cortisol from somewhere else, and your adrenals stop producing it. It is with hope that when you taper off of Prednisone, your body will recognize this, and start producing cortisol again. I never had an issue with this before. I’ve taken Prednisone countless times during the past 17 years. I had never been warned that this could even happen.

During my last surgery, I was placed on 100mg of Prednisone, an extremely high dose. About a week after tapering off of the Prednisone, I started to become very sick, out of nowhere. I didn’t consume much more than a sip of a smoothie everyday for about a month, as I would become extremely nauseous when I tried to eat. I knew something wasn’t right, but I wasn’t ready to admit it. So I waited for a month, as I got worse and worse, and finally got to the point where I could hardly walk up the stairs in my house. I knew at that point that something was terribly wrong.

After a few (super not fun) tests, my Gastroenterologist still couldn’t figure out what was wrong. Another doctor (resident) happened to look at my file, noticed the pattern of Prednisone use, and suspected that my adrenal glands weren’t functioning. Her suspicions were confirmed after a few more blood tests.

I was admitted to the hospital, and also found out that I had yet another infection in my blood. It was the lowest of the low points in my life. Now I’m so thankful for how far I’ve come. Not producing proper cortisol levels caused the deepest, darkest depression I have ever experienced in my life. It had been two months since my surgery, and I was back in the hospital, incredibly sick. It was the first time I really questioned if my immune system would ever rebound, or if I would ever find true health. I regretted having surgery more than anything. I had surgery to get better, to save my own life, and yet my life only felt like it was getting much worse.

Slowly but surely, life started improving again. Changing my diet has helped my adrenals considerably, as I’m no longer “taxing” them with food that my body cannot handle. My Adrenal Insufficiency was caused by Prednisone, and is also only treated with Prednisone, which is pretty interesting when you really think about it. When someone with functioning adrenals becomes stressed for any reason (physical, emotional or just getting sick) their body will produce more cortisol to compensate. My body isn’t currently able to do this, so I have to work incredibly hard to control my stress. It’s a constant learning lesson!

Over three years later, I now know the real course of Adrenal Insufficiency. I’m still learning to take it easy, as I’m someone who wants everything “done yesterday.” It’s not in my nature to slow down, and I’m still learning to take it easy on myself when I don’t get as many things accomplished, as I had wanted to. I never realized just how important my adrenals were, until they stopped working. It’s funny how life seems to work this way, as we sometimes don’t know how much we “have,” until we no longer have it.

My adrenal insufficiency has been a constant learning experience, and it has taught me some deep lessons that will stick with me for the rest of my life. One of my greatest lessons was learning about and experiencing the serious consequences that prescription medications can come with. Medications have destroyed my immune system, and then they destroyed my adrenals. One of the biggest lies I’ve ever been told is that I have no control over my disease, and that I couldn’t heal my immune system. Well, I have healed my immune system through real food, and I have no doubt that I will heal my adrenals as well. Never again will I simply take a medication just because a doctor says that it is okay.

My story is long and has so many layers. Although I have found incredible healing through real food, I am also well aware that my body has deeper healing to do. I didn’t get “here” overnight, and I’m well aware that healing is a process that takes time. Just a few years ago, I wanted to completely give up while lying in a hospital bed, because I was so exhausted due to the constant fight for my life, and at this point, I wasn’t even sure that I would ever get better. Yet, something deep inside of me kept me going, and deep down I knew that I would find true health again. This was my last hospital stay to date, and now I’m full of strength and hope! I have so much to be thankful for! I’ve been told many times that my adrenals will most likely never heal. All I have to say is, watch me!

20 Responses

  1. Slightly Lost Girl
    | Reply

    Thank you so much for sharing…..someone commented about prednisone not being “that big of a deal” on one of my posts….they said that prednisone has been used for years to control all kinds of diseases and is much safer and more tested than other drugs that people with autoimmune disease are given. More tested….yes, but safer no! I am so glad you told us your story, now I know where to point people when they ask about prednisone. I am lucky to have been able to wean myself off of prednisone after only three years of use (my doctors considered me cortico-steroid dependent too)! Moon face and craziness are devastating in the moment….but the osteoporosis and adrenal fatigue are longer battles. Keep up the good work and thank you!!!!! HUGS

    PS other not so commonly told fact…..if someone who has taken prednisone frequently (or is taking it) is in an emergency situation they might need a super dose in the hospital to save their life! I have been told by Dr.’s to wear a bracelet advising of my prednisone use so that the ER docs will know…..could be a life or death bit of info!

    • livinglovingpaleo
      | Reply

      Thanks for giving me the motivation to share this, Mika!! Prednisone sure is a crazy medication, so necessary at times, but people do need to understand the full impact that it can leave. I made the mistake of trusting my doctors way too much 😉 I had NO idea regarding the prednisone use in an emergency situation! Great info that people also need to know!

  2. Jen
    | Reply

    You are healing inside and out!!! Love you sweet sis!

    • livinglovingpaleo
      | Reply

      Thank you so much, sis!! So are you!! 🙂

  3. adashofmeg
    | Reply

    So proud of you for sharing, love! I love you so much!

    • livinglovingpaleo
      | Reply

      Thank you, Meg!! Love you too!! 🙂

  4. healthyleanfit
    | Reply

    I remember you telling me about this. When I was in stage 3 adrenal fatigue, it was an incredibly hard time in my life! I’m still working to heal my adrenals. I never had full insufficiency, but I have had a lot of help naturally while healing. Have you tried seeing a functional medicine dr, a naturopath or someone similar? Have you ever been for acupuncture? Perhaps they could help you with this! ❤️❤️

    • livinglovingpaleo
      | Reply

      Adrenals sure are fun, eh Deanna? 😉 I did acupuncture for a few years and loved it! Right now I’m feeling like I’m at a really good place with my adrenals, which I’m soooo thankful for!!

  5. Kiersten
    | Reply

    You have such an amazing story and I know it will help so many people who are struggling with their health to know that you can take charge of your own health and find true health as you have! Thank you for sharing 🙂

    • livinglovingpaleo
      | Reply

      Thank you so much, Kiersten!! You’re incredibly sweet, I love all of your comments on here and IG 🙂 I didn’t realize you had a blog (I’m slowwww at this stuff ;)) I LOVE it! I’m reading through your posts now, they’re really amazing!!

      • Kiersten
        |

        The blog is brand spankin’ new so you’re not slow at all 😉 I’m glad you like it. I’m still learning!

  6. Cami Hubbard
    | Reply

    Wow! Thank you so much for sharing your journey! I too was told that there was nothing I could do to control my Crohn’s except to “take the pill.” I have no history of Crohn’s in my family so it was shocking to my science-focused, carb-loving, nineteen-years-old mind on July 9, 2013 when I suddenly experienced severe abdominal pain. 24 hours later I was in the ER and four days later I was released with two very strong antibiotics. In August I had some “fun” tests done that revealed the Crohn’s. I never filled out the prescriptions my doctor gave me. A dear friend recommended that I use nutrition (which had recently interested me…but only in an anti-whacky, non-wholistic way). It’s been 10 months of being on an organic Paleo diet and no medications! The first 3 months were not easy and included falliculitous, extreme low blood sugar, and shingles. I’m so very thankful for the advice I received early on! God has been so faithful in guiding, providing, and strengthening! This journey has drawn my heart to Jesus–the only healer and the one who satisfies even when the healing doesn’t come. Stress too plays a huge role in my condition. I am learning how important it is to control my thoughts and to set aside time to breathe. Hearing your story motivates me to stick to the lifestyle (some days require more encouragement than others)! Thank you for sharing! Hope you have a sunny, stress-free day filled with yummy, healthful food!

    • livinglovingpaleo
      | Reply

      Wow, Cami! That’s so incredible to hear that you took the natural route towards healing! I learned the very hard way that the quick fix pill doesn’t always work out in the end 😉 That you so much for sharing your story with me!! Wishing you nothing but perfect health! <3

  7. Bethany McDaniel
    | Reply

    Loved reading this post and all about your story, Kristen! You’re clearly inspiring and motivating LOTS of people through your recipes and life! 🙂 My best friend is dealing with complications very similar to what you went through with Crohn’s, except that they’re from Ulcerative Colitis. And at this point (unfortunately) she isn’t willing to explore options outside of what her doctor is telling her to do (take this pill until it stops working, then try this one, etc.). I want so badly for her to explore a paleo lifestyle, but can’t force the issue any more than I already have. It’s just so hard watching her go through this when I know that she could find relief from eating real food! Any advice? 🙂

    • livinglovingpaleo
      | Reply

      Hi Bethany! Oh, I soooo know where you’re coming from. Not only was I there at one point myself, but I’ve seen others go through it as well. Unfortunately, I’ve come to the realization that sometimes people have to hit their rock bottom before they’ll change their diet. It’s really unfortunate, because the odds are she would feel a lot better if she changed her diet, and it can be a lot harder to heal your body once it’s been damaged by the meds. From my experience, taking the meds is the easy way out at first, although they usually catch up to you. It’s hard to see that when the meds actually work. I learned the very hard way. 😉 I wish I had better advice for you, but I know from approaching others with health issues, it just doesn’t work. The more I tried to get them to change their diet, the more the resisted. Ugh, so sorry you have to go through this, it’s especially hard when it’s your best friend! I know it’s heart breaking. Hoping that she’ll come around!

      • Bethany McDaniel
        |

        Thanks so much for the reply, Kristen! I think you’re right about having to hit rock bottom in order to change, unfortunately 🙁 I just hope that too much damage hasn’t already been done by the time that happens!! I feel for her because, like you said, the meds do provide her with some immediate relief – which can be deceiving! I think all I can do at this point is keep hoping and praying that she comes around! 🙂 Thanks again!

      • livinglovingpaleo
        |

        I couldn’t agree more, Bethany! I know from personal experience just how hard it is to have to stand by and watch. It can be really frustrating! Your friend is very blessed to have you! 🙂

  8. Melissa
    | Reply

    Thank you so much for sharing your story. I was diagnosed at 13 and struggled at first and I too have been on an off prednisone for many years in and out of remission till 2013 when nothing was helping. My doctors answer was lets just bump up your prednisone dosage and “‘see what happens” 8 months late I was 40 pounds heavier still sick wanting better answers. I went to see a doctor in May at the Cleveland clinic and got a lot of answers. I learned that the estrogen in my birth control was causing an imbalance in my body so we got off that ( which 4 months later I’m still adjusting) . I also learned about another steroid called Budesonide ( common name Entocort) which is only released in the gut with less side effects then prednisone. The doctor in Cleveland also told me of a stricture I had that my home town doctor was not aware of. I had a procedure done to dialate the stricture and the pain when away. It’s been 4 months and I’m still not 100% so I’ve been looking for diet options to improve my health and I stumbled upon your blog on Pinterest and it has given me hope to try . Thank you so much for sharing your success. I don’t mind taking the meds I’m on right now but I just want to feel better Daily.

    • livinglovingpaleo
      | Reply

      Thanks for sharing your journey, Melissa! Sounds like you’ve been through a lot, prednisone is never fun. I was also on Budesonide years ago, although for much longer than it’s intended for. I’m so glad you got some answers, sounds like you found the right doctor for you. Wishing you perfect health! <3

  9. […] and yet I’m still experiencing one last side effect from one of these medications. If you read my post awhile back about the price I’ve paid from these medications, you’ll know that I developed […]

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