sarah's experience with crohn's disease
Monday 01.16.12 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.
Reader Comments (81)
can't believe it's been a year! all the more, how healthy you have been since. you are one gutsy woman, sarah.
congrats to this wonderful anniversary!
Sarah, thank you for sharing your story... I can't imagine how difficult that was for you to go through and then re-live in a tiny way while writting this post. I do not have anything like Chrons but I do have stomach problems from time to time and Chris and I have started juicing & I've literally noticed a huge difference. thanks for sharing today sarah...
thank you so much for sharing! I have had very similar experiences with western medicine for another auto-immune disease... My favorite experience is when they prescribed me a drug that is was developed for treating schizophrenia!
What an incredible post! So well-written, so touching. You are so right about how diet affects us...although I haven't had symptoms that you've suffered, I'm interested in seeing how a healthier diet changes how I feel/look. Thank you for sharing such an inspirational and heartfelt post!
Xoxo Alison
Thanks for sharing your experience and your insights!
There's a lot of really useful info to absorb.
So glad to hear you are starting off 2012 happy and healthy!
All the best to you and Lou : ) Angela
thank you so much for the support everyone!
kiko, i remember you helping me into the car to bring me to a last minute dr appointment! i am so lucky to have all of you amazing wangers in my life.
sarah, that's so great! i know you two travel a bunch and it's so hard to get healthy food on the go, especially in less urban places. i'll post more soon about exactly how/what we eat and what we do when we travel!
thanks again everyone! xo
So glad to hear you are doing better, your story is a blessing, my prayers are with you and lou.
Miss you guys.
Dustin.
Hi Sarah... Thank You sooooo much for sharing. I was diagnosed with crohn's dis-ease when I was 14 years old and had a similar experience for a period of 18 years! I had a section of my intestine removed when I was 27 and was on 30 pills a day at one point. About 4 years ago, I started chiropractic care and eating healthier and symptoms subsided. I also started working with a holistic doctor and take organic enzymes and probiotics every day, which really help with digestion. I believe that stress is the cause of ALL dis-ease... Working to release anger, fear and doubt was the first step for me in the true healing process.
I wish You ALL the BEST in your continued healthy Life...
In Love & Light,
Jess
Wow! Go Sarah! This is so inspiring!
Sarah,
Thanks for sharing - I know it is a difficult topic. I'm sorry that you've had to go through this but I'm so happy to hear that you tried alternative therapy so quickly! I was diagnosed with Crohn's disease at 15 (I don't think too many people knew - I hid it for a long time). I was unlucky enough to have a colonoscopy without anesthesia...something I wish I could forget but never will. I struggled for 10 years and was also on steroids and other medications that I was supposed to be on "for the rest of my life"... no way!! Since my mid 20's I've been able to control everything with diet - I'm a big fan of probiotics, antioxidants, anti-inflamatory foods and FRS energy drinks (that one's kind of odd, but it seems to work). I really think there needs to be more research for alternative therapy for this and other diseases. I believe you're on the right track.
Best wishes,
Kelly
Wow Sarah - I didn't know the full extent of what happened last year in the least - I am so glad you are doing so great now! I love that you sent back your hospital food - the picture of the roast beef creation made my stomach turn and this is coming from someone who likes it! It makes me so happy that Lou was right by your side the whole time and that you have found a way to deal with this through diet and lifestyle - you are truly amazing my sweet friend!
Thanks for sharing this Sarah. I have been dealing with sometimes severe digestive flare ups for the last 8 years - and of course, the doctors never can figure out what they are. It is uncomfortable talking with people about these problems, so I applaud you at this bravery. I am working very hard at eating better and taking care of my stress, which are certainly leading causes. Thanks for being so honest and encouraging. ♥
Thanks for sharing your story Sarah, I have just started following a more plant based diet, phasing out meat, dairy, and all sorts of processed nasty food. I am feeling better already. So glad you are feeling well and I am loving your blog. BTW I made the beet hummus for friends last weekend and they loved it despite not being beet fans.
this is such a touching and honest story. it made me cry. you're such an amazing, brave and inspiring person. all this advice is so great. every time i read a food/diet related post on your blog, it makes me get off my butt to go grocery shopping for fruits and veggies. thanks so much for sharing :)
I am suffering with UC and have been now for 6 years. I have tried all the drugs and nothing is working. I am contemplating taking out my colon which will leave me with a bag for the rest of my life, UGH!!! Would love to see more about the diet you are referring to and what you exactly eat on a daily basis. I will try anything at this point!
hello b!
I am going to work on a post with all of the details of what i eat /did to get better. it might take me a bit. In the meantime:
My first recommendation is that you buy the book I read http://www.amazon.com/Controlling-Crohns-Disease-Natural-Way/dp/1575668319/ref=sr_1_3?ie=UTF8&qid=1326738544&sr=8-3
It's such an inspiring story, I think you will believe like I did that what she wrote makes more sense than steroids or surgeries.
the basic principles are that organic whole grains and organic vegetables should be the majority of your diet.
brown rice is my go to. when you're not feeling well all grains/vegetables should be very lightly seasoned and eaten in small amounts, just at mealtimes (breakfast, lunch, dinner, maybe a light snack or two if you're hungry)
all food must be very well chewed (start counting, chew at least 50X per bite). food should be liquid before your swallow. this allows the enzymes in your saliva to break the food down before it ever gets into your stomach.intestines. it will make it easier for your body to break down food and absorb the nutriets.
please consider reading the hip chick's guide to macrobiotics as well. http://www.amazon.com/Hip-Chicks-Guide-Macrobiotics-Philosophy/dp/1583332057/ref=sr_1_1?ie=UTF8&qid=1326823880&sr=8-1
don't be overwhelmed by the details of macrobiotics, just start by learning how to make brown rice (if you don't know how) and eating vegetables and beans. avoid all processed foods, absolutely no sugar, no caffeine, no white flour (that turns to goop in your intestines, it's so bad!), no dairy!, no meat, white fish occasionally (once every couple of weeks)
for healing:
two things that really help me when my stomach is getting bad is kuzu root (it's been used by the japanese for thousands of years for healing)
http://www.google.com/products/catalog?q=kuzu+root&um=1&ie=UTF-8&tbm=shop&cid=15163219239265605212&sa=X&ei=muUUT7O2K9TJiQKs4sjLDQ&ved=0CH0Q8gIwAw
if you mix a couple tablespoons of this with a little 1/2-3/4 c unsweetened organic apple juice and heat it (Stirring constantly) will become a thick pudding. i swear by it.
the other thing i would recommend incorporating into your daily diet is miso soup. this was a huge staple in my healing diet, something i still eat at least once a day and believe is so good for your intestines/stomach/digestion.
here's a quick recipe for miso:
thinly slice one scallion
bring 1 cup of water, scallion to boil
dissolve 1 tablespoon miso in a little water, mix into a paste .
reduce heat on water (it's important to not let the miso boil, it ruins the beneficial properties in in). i use a heat diffuser to keep my water from boiling once i've added the miso. let cook for additional 2 minutes or so.
tear up pieces of toasted nori (seaweed) and add to soup
eat it up.
(heat diffuser : http://www.shop.woodwardcrossingscountrybasics.com/Heat-Diffuser-Simmer-Ring-Prevents-Scorching-Overheating-5068.htm?gclid=CKbuwMGW1q0CFQ9qhwodEDP5mw )
both the kuzu and miso can be found at whole foods (most whole foods have kuzu) and on amazon.com
lastly, i want you to know that when your body is healing your diet needs to be very strict, but after you get better it becomes less rigid and you will be able to eat little treats every once in awhile. you will also start to enjoy eating a more simple/healthy way, i promise!
i will post more soon! please take care and get in touch with any questions.
thank you so much for sharing. it was so scary seeing you so weak. even seeing these pictures brings tears to my eyes. i am so glad you found your way back by educating yourself and, most of all, trusting your intuition. what a year it has been! so happy to see you have your vitality back!
I love your story because the beginning sounds like mine. However, even though you were one of the luckiest Crohns sufferers only being sick for less than a year, people such as me and so many others suffered for years and some still not being able to achieve remission. So many who are so much worse off refrain from telling there story so I commend you for doing so. I wish you would learn how to spell the name of this horrible disease. I'm sorry for the harsh words and people should be inspired by your story because I would never wish Crohns on anyone and I'm sure you feel the same. I hope you realize how lucky you really are.
Wow Sarah, I just read this whole story--thank you for sharing! It is so sad to hear about your diagnosis, but I am really glad that treating it through conscious diet helped. I've seen documentaries about how profound of an effect eating properly can have on your body and diseases (Forks Over Knives is a great one), and it's good to see that you're living proof of that! It is unfortunate that Western medicine isn't always the best way and shame on your doctor for not offering you other options!
I appreciate you taking the time to share something so personal and I'm glad that you are feeling better!
thank you so much everyone for your responses and support!
kim, i am so sorry to read that you've been suffering so long. i cannot even begin to imagine the hell you have been through. i do have hope for you and everyone else in your position though, i have read so many inspiring stories from people who have suffered as long/longer than yourself finding the answers. i wish that for you as well.
(and thank you for the heads up on my spelling! i think i corrected all the errors)
Hi Sarah,
Thanks for sharing such a personal story. My husband has UC and it is a daily struggle. It is so hard to see him suffer when there is not much I can do to help him. I'm glad you have found what works for you and that you're feeling better. My husband unfortunately has to take a myriad of prescriptions as the only thing that helps (and even then it's still bad even with a tremendous amount of dietary restrictions and strict attention to what we eat). I myself have IC (not an IBD) so I can somewhat empathize with the frequent bathroom trips. Sadly, diet did nothing for my condition; it only aggravated my symptoms. I wish diet was the cure for us but sometimes, for some people, it isn't.
These IBD illnesses are more common than we think but sometimes people are too scared or embarrassed to share, even with those closest to them. I commend you for sharing and wish you well on your journey to healing and wellness!
hi Kristen!
thank you so much for sharing. i feel for you and your husband, all of these diseases are so cruel and there's just not enough information out there. it's frustrating that there aren't more answers.
if you would be open to it, i'd love to talk to you a bit more. i'm trying to learn more and hearing other people's stories is so helpful. i have a great platform here for talking about this and i'd love to be better informed. if you're willing to talk to me please email me at [email protected] (and i totally understand if you'd rather not, it is an extremely personal issue)
thanks again!
Sarah, I think it is absolutely amazing for you to dedicate your thought and time to this part of your story. I'm sure that your honesty in our public world has already eased the minds of many out there and will continue to do so. Keep it up-- you have a great story to tell. Much love.
Thank you so much for sharing. I'm so glad I came across your blog. This is a wonderful collection of posts and this particular experience you shared was really impactful. Thank you!
Bee
Wow Sarah - so glad you shared this story. I met you last year in Palm Springs at the Fabulousity-thingy and I think you had recently started on this diet - but I never knew the reason why! I had severe stomach issues from age 15-28 - I went to every specialist in LA, had many emergency trips to the doctor, only one to the ER. No one could figure out the reason for the problem. At age 28 I went to acupuncture for a totally unrelated health issue - and she asked if I had any other health problems. I mentioned my stomach issues. After that visit, my stomach has improved amazingly. Right now I'm back to seeing an acupuncturist regularly, but I can take months off from acupuncture with no issues. I'm even able to reintroduce some foods that used to make me sick.
So glad to hear you are following your "gut" and making decisions about how you want to live your life, rather than what the doctors say. Wishing you good things this year!