It is probably true for most of us with autoimmune disorders that it was pretty much like taking a crash course. For most of us it wasn’t gradual… It happened in a total panic and thinking something was horribly wrong with your body. All of a sudden things that were so easy had become impossible and things that were routine now took so much longer. The idea of exercise such as walking my dog, Zumba, and rock climbing now were impossible. And little tasks like getting out of bed or opening bottles seemed to take so much longer. And things about my body seemed just wrong.
I feel that this is a good time to explain my diagnosis and my crash course into the autoimmune life. March 2016 I started having trouble eating and had such intense pain with swallowing that food had become my enemy. Looking at food made my eyes water in pain. After two months I was scoped (upper endoscopy) and it was found that lots of little ulcers littered my esophagus. At the same time I was accepted into Physician Assistant Graduate School. Feeling like I had won the golden ticket and with my physicians being stumped, I was sent off to P.A. school with an anti-viral medication even though a tested negative for anything viral. I went on my way to P.A. school leaving behind my favorite job as an Education Specialist for an Upward Bound program, my fantastic students, co-workers, family, friends, and my faithful dog companion. About two weeks into school my pain had subsided and I was told that hopefully they would never come back. 7 months and a very large school loan later, severe pain in my esophagus came back. Shear panic arose and there was no time to see a doctor. Finally, not being able to bear it, I called my doctor and scheduled another upper endoscopy. And there they were again… bigger and badder. And with that my life changed forever.
I left P.A. school to begin a crazy amount of testing. In January 2017 I was finally diagnosed with Esophageal Crohn’s: one of the rarest and most aggressive types of Crohn’s (only 5% of Crohn’s patients or less have this disorder). Absolute shock entered my mind. “I was fine only a couple of months ago” was all I could think. Then, the next thing that popped into my mind: “could this be treated with diet and could I go see a holistic doctor?” This question flew out of my mouth in my doctor’s office as soon as it entered my mind, which is pretty accurate for everything I say. I pretty much have no filter and that has only gotten worse with my condition (more on that in another post). To my surprise I was LITERALLY laughed at by my doctor! If you are reading this then you have no doubt experienced this or something similar by a medical professional (definitely a whole post for this topic later) and this probably doesn’t shock you at all. Medical gaslighting has become a popular topic of discussion. I didn’t get why this wasn’t a legitimate question. I had no idea how I had offended my doctor. But this laughter whipped me into compliance and I accepted the intense medicine treatment he was offering. If you are someone with Crohn’s, then you know there are different treatments and treatment levels based on your severity. Lucky me… I got to skip all the levels and go straight to the top: the biologic shots and infusions.
Thus followed months and months of trials of these biologic treatments with none successful or tolerable. The reactions I had were so severe. I was left in crippling pain for weeks only to discover that by time I returned to my “normal” state that it was time for another infusion. (I now know this was due to an allergy to the polysorbate 80 that was used as an emulsifier in the biologics. I will expand upon medication allergies and new allergies I have developed to fillers and preservative in another post. I hope this can be of help to people who have experienced similar situations to mine). At the same time start these biologic treatments, I tried to return to the job that I had loved so much and had become such a big part of me. However, I could not function even for short periods of time to do my job. I was utterly devastated. I now felt totally striped of my identity, purpose, and self. It became the loneliest year in my life. I soon found who my true friends were and my family support, and they became the biggest blessings in my life. And ironically, being striped of everything… I have found myself.
Several months later and visiting my third rheumatologist, I was diagnosed with a Lupus-like-syndrome. I am so rare that this was the best label for my second autoimmune disorder. The only place you don’t want to be rare and unique is in a doctor’s office as you all know so well! My symptoms had not added up for so long, but with so little being known about Esophageal Crohn’s many doctors were more than willing to blame all the symptoms on this and get me out of their hair. I finally saw a G.I. doctor who was brave enough to say this was not all just Esophageal Crohn’s as bad as the condition could be. So my second autoimmune disorder was found in September 2017 and I have started to praise the magical medication called Hydroxychloroquine. (Unfortunately, I started with the brand of this medication (Plaquenil), thinking that the brand would be better. It contained polysorbate 80 so I only saw some of the benefits from this medication. When I switched to the generic (Hydroxychloroquine), then I started regaining more quality of life. Being exposed to an allergen can make a huge difference in your conditions and quality of life. I hope to expose some of the in future posts so that others can identify allergens and regain better quality of life as well). All of those with lupus can most likely relate. I began to get some relief from this medication. Unfortunately, no treatment has been found to help my Esophageal Crohn’s. Clinical trials are the only thing left for me to try medically. Even then, I am only eligible for about 2 out of 9 clinical trials and none of these trials have Esophageal Crohn’s patients to compare success rates. My doctors are totally in the dark and I have entered into very uncharted territory.
However, the things that helped the most were not prescription medications (besides the Hydroxycholorquine), but they were natural remedies such as baths, rest, lifestyle changes, natural supplements, avoiding allergens or triggers in food and medication, natural products, yoga, massages, essential oil, and a HUGE change in diet. I became gluten free starting in February 2017 and have never looked back. A P.A. in the beginning of all my digestion trouble had suggested it and my first G.I. doctor had laughed at the suggestion. Googling ways to help Crohn’s I found that eating gluten free was one of the top suggestions. With the advice from the P.A. in my head from many months earlier I decided to try this diet. Without this change I truly believe I would be in a hospital on a feeding tube (Many thanks to that kind P.A. who took the time to think about ways to help me)! And with the knowledge from some very good friends, who took the time to educate me on another new diet, I began to receive help from a diet similar to the Autoimmune Paleo Diet. I call my diet a tweaked autoimmune Paleo diet. That's the closest thing I can call it. I will be outlining my diet in future posts to try to help others.
I believe this saved my life. And I just want to help as many people as I can that are struggling as I did. There I was 25 years old and thinking I may not have very long to live. I thought I was looking at multiple surgeries, painful treatments, feeding tubes, IV liquids, and not a very good ending. All the cases of this condition that my doctors had seen before did not end well and the decline was quick. I finally found someone else with my condition on Instagram after searching for years. They are alive and well thanks to a treatment that worked for them. This has given me hope that I could one day find a treatment as well to help regain even more quality of life and that I can live with this disorder. However, I believe that changes in my diet have saved my life and the other changes in my life have helped me regain quality of life. Thus, I will be passing on what I have learned in these areas on this blog. The things that helped me the most I hope to share with you and I pray that these things will help you too! I have learned that mindset is a huge factor and that mind over matter is a real thing. You must be determined to find ways to help yourself. There is a lot of research that comes with autoimmune or chronic disorders and you will have to be the one to put in the time and energy in to do this research. You MUST ADVOCATE FOR YOURSELF! A resident said this to me recently at Vanderbilt and it has stuck with me. He that I must continue doing what I was doing and continue to advocate for myself. There will be medical gaslighting (people that think you're crazy or don't believe you), there will be doctors that laugh at you, and there will be doctors that don't want to treat you because they don't know or they're scared to mess up. But you must keep trying and keep advocating for yourself! There were so many times I wanted to give up. I never thought I would be where I am today. Three years later I have regained some quality of life and I am alive without support of feeding tubes and surgeries. I believe it can happen and I believe that you can heal yourself naturally. It's not easy, but it's worth it! If natural remedies and diet changes can work for you or at least give you more quality of life, then it is worth it. I hope you find some help and relief from this blog. Never hesitate to reach out to me through the blog. I am here to help and I truly want to pay it forward for all the kind people that took time to help me. I have learned a lot from other people, from the kindness of other people, the research I have done, and my experiences. And I am ready to help and pay it forward!
I feel like I have written a novel… Sorry for the long post. I wrote the first post nervously and now can’t stop writing. lol. Please share your story! If anything here relates please share that as well! I am here to listen and support!
May you be well :)
~Brooke
– For I know the plans I have for you “declares the Lord,” plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
P.S. The story behind this Bible quote for me. I went to McAlister’s with my mom quite a bit in the first year of my diagnosis. (I no longer eat out and make my own food from scratch. It is a rare occasion that I do eat out and I have learned tricks that I will share to be able to do so). It was one of the few places I could eat that had gluten free options. I quickly learned that one of the employees had Psoriasis. We would talk and share our autoimmune struggles. She greatly helped me with different aspects about autoimmunity, but she also would provide hugs and share Bible quotes when she knew I was especially down. It was this kindness from a stranger that greatly inspired me. It isn’t often that you find this shear compassion and warmth in a stranger. She used to tell me that God had a bigger purpose for me than just going to doctor’s appointments. A stranger believed in me and it instilled that belief in myself. It will never be forgotten and I hope to pass along the strength and belief that she imparted in me with the quotes she shared through my blog. I also wish to pass on her compassion and incredible positivity.
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