i’ve been wanting to find a way to share my experience with crohn’s disease but a blog post isn’t enough. and this is so important that i don’t want it to disappear into the archives either. so here we go, a page dedicated just to this. it’s a very personal story, and somewhat painful to recall, but i hope more than anything that someone who is going through something similar will read this and be inspired, find hope and get better. so here’s what happened to me :
in january 2011 lou and i were packing up our house to move. we had a nightmare landlord who put the house we were living in on the market 5 months into being there and was having open houses, showings, etc for 6 months before we moved. it was a very stressful time. we packed up the whole house a couple of weeks before the move because lou was going to be traveling for a job. which meant we were living out of boxes and surviving on takeout / pre-packaged food.
i always had what i would describe as a squirrely stomach and periodically would have stomach pains. in january i started having stomach pains different than i’d ever had. they’d double me over, last for a minute or two and then go away as unexpectedly as they came. they started increasing in frequency and intensity over the course of the next few weeks. i couldn’t keep food down. i tried eating {and not eating} anything i could think of, following my general practitioner’s instructions to eat the brat diet (bananas, white rice, apples, toast}. i would eat and then dread the time following as food moved through my digestive tract, curling up in a ball on the floor. my doctor ran tests for parasites, blood tests, and ordered an ultrasound. they all turned up nothing.
this continued through all of january as i got weaker, lost crazy amounts of weight and became progressively more frightened. i had seen my doctor at least 3 times and paid a visit to the ER once, all without answers. they were sending me to specialists, drawing blood, running tests and coming up blank over and over again. i felt like my body was turning on me. i stopped working, stopped seeing friends, barely ate, and couldn’t sleep because of the pain.
the first week of february lou brought me back to the ER and after examining me they said that i was so severely malnourished/dehydrated that they would have to admit me. i’d never spent the night in a hospital before, so it was scary but i was so thankful that they’d finally really have to pay attention to what was going on with me and get to the bottom of it. i was becoming a shadow of myself, too weak to do much of anything and too sick to do much about it. i was so scared.
i spent a full week on an iv at the hospital. after i had a traumatic experience the first night lou moved in with me and we spent the next week sleeping together on a twin bed, woken up by nurses for blood drawing at 6 am every morning. lou brought me things from home to make me more comfortable, my dearest friends came to visit and i watched a lot of daytime tv. the experience bonded lou and i in a way that we had not been before, we were in this nightmare together. he tried to hide it but i could tell he was scared to see me so sick. we joked about all of the things that were the most horrific: the allergic reaction i had that made me look like charlize theron from “monster”, the colonoscopy and endoscopy (yikes!), the way my body looked as i grew thinner and lost all of my muscle tone. it showed me how strong lou and i can be together in crisis: when all else fails we make jokes and crack eachother up.
during my hospital stay they ran a myriad of tests on me, but the gastrointestinal specialist was confident that i was sick with crohn’s disease. they ran a test specific to crohn’s while also testing to rule out any other possible illness. i had a colonsocopy and endoscopy that showed my entire instestinal track (including my esophagus) covered with sores. it was a textbook case of crohn’s but the technician who looked at my MRI results told my doctor that he wasn’t convinced.
a week after i was admitted, they released me. but not without first serving me the first solid food i’d had in 7 days. they plopped a “pot roast” in front of me and told me to eat up. i sent it back with a confused nurse, telling her that i wouldn’t be eating pot roast and didn’t think it would be the best thing for a first meal even if i wasn’t a vegan. this was my first light bulb moment that maybe our medical system did not really have a grasp on crohn’s disease and the treatment for it.
when i got home i was so weak that i couldn’t walk into the house by myself. i required constant care by lou, but i was so happy to be home! i was still without an official diagnosis, but at the time i left the hospital my gastrointestinal specialist told us that i’d probably been suffering from a “virus”. it didn’t make sense, but we were still waiting for the crohn’s test to come back and so we didn’t have a definitive answer either way.
i have a friend who has crohn’s disease, but i didn’t know much about it. so of course i started googling like it was my job. the more research i did the more scared i got. i learned that crohn’s is an incurable autoimmune disease in the same family as ulcerative colitis and IBD. i was horrified to learn that i would live with this for the rest of my life, experiencing “flare ups” like the one that had landed me in the hospital. that frequently people who suffer from crohn’s wind up in the hospital many times over the course of a year. i was even more terrified by the treatments which my doctor told me were standard, the only option i had: steroids & immune suppressors.
a week after my release i was still very ill, weak, scared and confused. i tried to go for a walk and only made it 3 houses before i had to sit down and rest. i didn’t know if i’d be able to make it home. i had never imagined that i could feel this way, it was a very dark time. i had a follow up appointment with my GI specialist at the end of that week. lou and i sat in his office as he explained my serious diagnosis: i had scored higher on the crohn’s test than he’d ever seen (always an overachiever!). i felt relieved that i had a diagnosis finally but horrified by what he proceeded to tell us. he said that there’s a 50% chance i would need to have parts of my intestines removed in the next 5 years, that i had a moderate/severe case of crohn’s and that i would need to go through a round of steroids/immune suppressors and then take other medications in between flare ups, indefinitely. i asked him if there was any special foods i should be eating. he advised me to start eating red meat because i was so iron deficient and that besides for that, his only advice was to eat canned vegetables and avoid fresh fruits/veggies. he told me that diet has no effect on the disease. i told him i had no intention of being on medication for the rest of my life, and he told me that there was no other option.
lou and i left the appointment with mixed emotions. we were relieved to have a diagnosis and a treatment plan but really scared about what the treatment plan involved. i knew steroids to be brutal, but we felt so hopeless with the doctor’s grim diagnosis and lack of alternative treatment options. so i committed to trying it out. i also asked my mom to come out from the east coast to help take care of me and help lou.
three days into the steroids i felt worse than i had before i started. my symptoms were the same but i had also swollen up like a puffer fish, developed a lumberjack’s appetite and started feeling like i could crawl out of my skin with anxiety. i felt much worse, not better. meanwhile i was following the doctors orders and eating beef and canned veggies. it felt counterintuitive to be eating things i believed to be unhealthy but i was a good little patient doing as i was told. i called my doctor to discuss the side effects from the steroids (by this time i had the medicine cabinet of a senior citizen- i had so many different pills prescribed to treat my different symptoms i couldn’t keep track of them all). the doctor told me that he would send me to a psychiatrist to put me on anti-anxiety medication to treat the side effects of the steroids. i knew it was crazy- i was in a never-ending cycle of taking medications to treat side effects of other medications. i hung up the phone and told my mom i was done, i wouldn’t be taking any more of the steroids or any of the dozens of other medications they had prescribed.
it was serendipitous that a book arrived that day from my dad called controlling crohn’s disease the natural way. i devoured the book; the woman’s story and how she healed herself made sense to me in a way that eating canned veggies and taking steroids never would. i commited to healing myself through diet and even though it was scary to veer away from western medicine, i knew that i was facing a quality of life i could never be happy with. i felt i didn’t have any other choice but to go with my gut {no pun intended} and do what made more sense to me. i was fortunate that both my mom and lou immediately got on board and supported me. we were all very worried that i would end up back in the hospital but also believed that western medicine doesn’t hold all the answers. this book and it’s methods for healing gave me real hope and i saw a light at the end of the tunnel for the first time. i had been sick for over six weeks at this point, my life as i knew it was long gone and i was desperate to get better.
the basic idea behind the book is that diet plays a direct role in the treatment of crohn’s disease, which seems so obvious it’s crazy. so i started following a macrobiotic diet. i’ll write in more detail about what exactly that means another day, but if you’re interested my favorite book to get a basic understanding of it is this one. i started doing exactly what the doctor had told me not to do- eating veggetables, brown rice, avoiding meat & dairy. within a week i was better. it felt like a miracle, but now a year later, i know it wasn’t. i have managed the crohn’s since the day i quit taking steroids without another “flare up”. i do have to pay attention to my body, and when i feel myself starting to go down the path of not feeling well i cut back on my stress and get back to my healing diet.
there are two things that i believe caused my crohn’s flare up: stress and poor diet. as i mentioned when i started this post, we were moving houses and eating takeout for every meal. even though i was a vegan, i really had no idea what a healhy diet was. i thought as long as i was eating wheat bread and avoiding animal products i was a healthy eater. this nasty combination of stress and poor diet threw my body into a tailspin. i’ve learned so much since then. i’m a huge believer in “you are what you eat” and i truly understand what my body needs to stay healthy.
this was the best and worst thing to ever happen to me. let me explain. on paper, it was by far the worst: being sick for two months and in the hospital for a week was like nothing i’ve ever been through (i had been lucky enough to have had a pretty healthy life up until that point). it was scary and i went through the gamut of negative emotions during the course of it. my hospital stay was traumatizing, i still cry when i think about it. BUT, i truly believe i’m a happier and healthier person now than i was before i got sick. lou and i are closer and have a bond that can only be made by surviving something terrible. i love the way we eat and the way we live so much more now. and then there’s all the should-be-saved-for-talk-shows clichés about how much more i appreciate my life, my loved ones, my health, etc. i feel so lucky to have gotten sick and gone through that experience. it sounds crazy, but i promise it’s true.
if you are suffering from crohn’s disease, ulcerative colitis, IBD or any disease for that matter, i encourage you to look into natural healing/dietary changes. i saw this macrobiotic counselor when i first started learning about alternative healing, she is amazing. i believe that so many of the answers we are looking for regarding our health can be found in examining the things we are putting into our bodies. more than anything, i want you to have hope.
if you are completely healthy, i still recommend learning more about diet and health. i know that had i been eating better i wouldn’t have gotten sick. there are so many modern illnesses that can be directly linked to our diet. and preventing disease is so much better than healing from it. so, spread the word: whole grains and organic fruits / veggies are where it’s at!
thank you so much for reading this. please leave a comment or email us with any questions. i will post more later about what we eat, the nitty gritties of how i got better.
