If I’m gonna be doling out IBD-related information, I figured I ought to share my own story with the infamous disease. I’ll be honest, it’s still hard for me to think about those early days – my life is pretty great right now, despite lingering symptoms, and I have great optimism for my future, but it’s uncomfortable recalling such dark times.
But I want to preface this post by saying that I’m incredibly grateful for all of it. Even the surgery – I would have chosen differently if I’d had more information, but I don’t regret it.
When I started this journey, I was smart, hardworking, and good-natured, but rigid and perfectionistic – I had no give to me. When things went wrong, I didn’t bend; I broke. I was so caught up in oughts I couldn’t see how things actually are (much less enjoy them), I became angered and impatient easily, and I took everything so very seriously. A good quality when things are serious, certainly – but not conducive to a happy life.
Perhaps from the outside, the change wasn’t so dramatic, but to myself, I’m almost unrecognizable now.
The girl who so identified with her beliefs (food, religious, or otherwise) that she would feel threatened by those who believed differently – she’s gone now. The girl who thought exclusively in black and white now delights in the whole spectrum of gray.
I’ve learned that good and done is better than perfect in my head, and that there’s no award for trying the hardest or suffering the most – in a fight with reality, reality always wins.
I’ve also gained access to the eternal playground of ideas and discoveries that is human health, and the endless wonder and fascination that affords. And much to my previous dismay and current elation, health is indeed so much more than the state of our physical bodies.
But enough of my philosophizing. Please enjoy the chronicles of Alyssa and her colon.
Table of Contents
Background
The diagnosis
The brief disastrous raw vegan stint
The fanatical Specific Carbohydrate Diet days
The ultimate failure
The surgery: colectomy and ileoanal anastomosis
Post-surgery health
Post-surgery diet liberalization
Extreme microbiota war-waging
The Great Garlic Experiment
More antimicrobials and fecal microbiota transplant
Current and future directions
The short version:
- Diagnosed with UC in 2008 at age 14
- Tried raw vegan diet (briefly) then the SCD, which I stuck to religiously
- Tried and failed mesalamine, azathioprine, and Remicade over the span of ~2.5 years
- Prednisone managed my symptoms, but gave me anxiety, insomnia, moon face, and osteoporosis
- Life was rough, and I missed so much school they didn’t want to let me graduate high school
- With nothing else to try, had a complete colectomy and ileoanal anastomosis (j‑pouch) surgery in 2011 at 17 years old
- Continued to struggle with chronic intestinal bleeding from the j-pouch surgery site, bloating, diarrhea, and occasional pouchitis, but mostly resumed normal life as a functional human being
- Have continued experimenting with various approaches to resolve my lingering health issues, and am currently most focused on non-food things like circadian rhythm and nervous system optimization
The long version:
Background
Ever since I can remember, I’ve eaten an extremely healthy diet. That is, healthy by the USDA’s standards. My friends in middle school would make fun of me for having Triscuits and cheese and a bag of raw veggies for lunch, while they had muffins or pizza.
Sometime during middle school, I decided to be vegetarian. I also meticulously removed as much saturated fat and cholesterol from my diet as possible, and I rarely ate anything that wasn’t whole grain. Now keep in mind, I was never overweight. In fact, I’ve been underweight almost my entire life, and I got even skinnier after these self-imposed dietary changes. But whenever somebody told me that I didn’t have to worry about eating a little ‘unhealthy’ food, I would fiercely reply that skinny people can die of heart disease, too.
At this point, I should have been glowingly healthy. I ate two pieces of whole wheat Ezekiel bread every morning, I always threw away my egg yolks, I didn’t eat meat, and I ate lots of soy protein. I was doing everything right!
After about six months of this, I started having diarrhea. It became a daily occurrence, and the doctor guessed that I might have parasites. Apparently a guess is good enough to justify a course of antibiotics, so I went home with a ten-day supply of Flagyl. And it worked!
The Diagnosis
Or so we thought. A few months later, the diarrhea came back, and this time, lots of blood came with it. I also started losing weight. The next few months are kind of a blur; I remember having a lot of blood drawn, crying on a bench outside the doctor’s office, having a colonoscopy, and then being handed a huge packet of information with “Ulcerative Colitis” on the front. I also remember being told that I would be on drugs for the rest of my life. Even at 14, I knew that wasn’t okay. Drugs are something you take until you get better, not something you take forever!
The Brief Disastrous Raw Vegan Stint
I started looking online for different things people had done to cure their ulcerative colitis. Somebody gave me the book Self Healing Colitis and Crohn’s by David Klein, which espouses a raw vegan diet. I started the diet immediately, and followed it to a T. We made fresh juices multiple times per day, and the bulk of my diet was raw fruit.
After a couple weeks, I looked like a skeleton. My diarrhea hadn’t stopped, and I kept getting weaker and weaker, but I refused to give up on the diet. It’s working, I would tell my concerned parents. I’m just detoxing.
At this point, my anxiety reached an all-time high. I’d always had minor anxiety issues, and it was worse after I became vegetarian, but this was far more serious. I couldn’t sleep alone anymore, so I slept in my parents’ room. I always felt shaky, and my head felt…wrong. I couldn’t describe it then, and I can’t describe it now, but I knew I wasn’t okay. But I never thought to blame it on the diet. The diet was going to heal me; I just had to try harder.
One evening, I started shaking uncontrollably, and I couldn’t control my muscles anymore. I couldn’t walk or make my hands work. I didn’t know what was wrong with me, but I remember telling my parents, “I need to go to the hospital.”
An ambulance came and I remember them struggling to get an IV in my arm, but I don’t remember anything else. My mom told me later that it took them seven hours to stabilize my condition, which had been caused by severe dehydration and electrolyte imbalance due to inadequate diet and constant diarrhea.
The Fanatical Specific Carbohydrate Diet Days
After that incident, I slowly transitioned to a gluten-free, dairy-free, citrus-free, nightshade-free, caffeine-free, sugar-free diet. I ate a lot of quinoa and boring vegetables.
Throughout all of this, my diarrhea never went away, unless I was on prednisone. The prednisone blessed me with a fat face, stretch marks, lightheadedness, insomnia, and anxiety, but I have to hand it to them: they worked. All of the other UC meds – mesalamine, azathioprine, Remicade – made me worse instead of better.
Eventually I discovered the Specific Carbohydrate Diet, which is essentially an uptight version of Paleo. I remember being relieved that I didn’t have to deal with grains anymore, because trying to make gluten-free “healthy whole grains” taste good was challenging.
Again, I followed the diet to a T, and even though my diarrhea still didn’t go away, I somehow felt better on this diet. And at least it had a little bit of science behind it. (This was my first introduction to the idea of “bad bacteria.”)
There’s much I could say about this phase of my life, but when I call my adherence to the diet “religious” – I mean it. I vividly recall one appointment with a naturopath who suggested that I try adding white rice or white potatoes to my diet. I had a full-on panic attack right there in the office, and out into the parking lot – sobbing, hyperventilating, the works.
She was only trying to help, but she was threatening the entire belief structure that was my only source of hope at the time.
The Ultimate Failure
Fast-forward two and a half years. I was still on the SCD, and I never once cheated, but my UC was still not in remission. I’d had a bone scan, and I was diagnosed with osteoporosis at 17 years old. Long-term steroid use and malnutrition will do that, I guess. I’d also never had a period. I was still underweight, and I had been anemic for as long as I could remember.
I’d had numerous iron infusions, and had tried all the drugs the doctors had to offer. I had tried probiotics, enemas (fun times), herbs, acupuncture, electro-acupuncture, low dose naltrexone, and scores of other supplements, and I couldn’t restrict my diet any more than it already was. (Of course, at the time, I had no idea that adding food might have been what I needed.)
The only thing holding me together was prednisone, and I clearly couldn’t stay on that forever unless I wanted to lose my skeletal system. (Really though, what’s wrong with being a puddle?) So during the summer of 2011, my doctors, parents and I all agreed that surgery – a complete colectomy – was my only option.
The Surgery: Colectomy and Ileoanal Anastomosis
I’m glad I didn’t know how bad the surgery was going to be, because I would never have gone through with it. The pain meds all made me throw up, which is more unpleasant than usual when you’ve just had an organ cut out of your abdomen.
I couldn’t sit or stand up without blacking out, thanks to a three-day rapid taper off of the 40mg of prednisone I’d been on for months. I also had my brand new ileostomy to deal with, which was a learning experience. Not many people can say they’ve touched their small intestine!
On at least four different occasions during the first month after my surgery, my ileostomy would get blocked, and we’d have to make the 45-minute drive to the hospital so the doctors could watch me dry-heave and writhe in pain while they scratched their heads and wondered what to do.
After a few occurrences, they finally took me into emergency surgery to see what was going on, and they discovered that my small intestine had repeatedly decided to twist itself into a pretzel. Apparently, this complication crops up in less than 1% of patients.
Referring to my symptoms and then the unexpectedness of the actual cause, my surgeon said, “When you see hoofprints on a beach, you expect to see horses, right? Well, you’re a zebra.” Cool.
I somehow made it through the two months with my ileostomy, thanks in large part to a flexible red tube that I could shove up my intestine to keep the intestine-pretzeling at bay. Then I had the ‘take-down’ surgery to attach my small intestine to my new j‑pouch, which is basically a wannabe colon that the surgeons create using a section of small intestine.
I am so incredibly thankful that this surgery was easier than the first, and that I will never again have a bag of poop hanging off of my abdomen. Clearly my anatomy was not cut out for it, so two months of bag-life was plenty, thank you!
Post-Surgery Health
While I can’t say the surgery “cured” my ulcerative colitis (except in the semantic sense of there no longer being a colon to be ulcerated), I was able to return to some semblance of a normal life, and the decade since the surgery has seen my quality of life improve slowly and steadily.
Unfortunately, my remaining physical symptoms have stuck around pretty much unabated. The most concerning is the chronic bleeding from my pouch – even in the absence of active inflammation, there’s an ulcerated spot in my pouch that has refused to heal, for reasons that my GI doctors could never figure out.
I’ve also had occasional bouts of true pouchitis, which is basically just ulcerative colitis without the colon. (Close a door, the body opens a window…)
Aside from that, there’s also the persistent bloating, made worse by the fact that my new anatomy doesn’t really allow for, um, passing gas (ikr? things I wasn’t warned about). There’s also the loose stools and diarrhea, and pooping upwards of 10 times per day. Of course more frequent pooping is normal when you don’t have a colon anymore, but some people with j-pouches only go like 4-5 times per day. I want that life!
There are also other things that a GI doctor would never pay attention to, but to me, are obvious signs that something isn’t quite right. Hair thinning, skin wounds taking forever to heal, scalp psoriasis that seems to wax and wane along with my gut symptoms (hey there, lingering autoimmunity). Poor recovery from workouts, and difficulty building muscle. Persistent insomnia, and occasional shortness of breath and pounding heart.
I also had a new symptom to deal with: all of a sudden, I was having cyclical depression that eventually led me to a diagnosis of bipolar II.
Post-Surgery Diet Liberalization
Once the threat of losing my colon was no longer hanging over my head, I found myself gradually de-restricting my diet. There’s a certain beauty to life once the worst case scenario has happened – what more do you have to fear?
I stuck with a pretty standard Paleo-type diet for a while, but then went through a “pro-metabolic” phase (initiated by Matt Stone’s internet writings) where I basically ate a pint of ice cream every day. For…a while. My skin wasn’t a huge fan, but my insomnia was greatly improved. (After years on a strict low-carb diet as an undernourished young girl, I guess this wasn’t too surprising!)
I continued experimenting with food and supplements, of course, but I was so burnt out from the 3 frantic years trying desperately to save my colon that I didn’t really have much left in me.
Extreme Microbiota War-Waging
The three biggest interventions I tried during this time were a fairly intense natural antimicrobial protocol, a fecal microbiota transplant (FMT), and something I’ve dubbed The Great Garlic Experiment.
The Great Garlic Experiment
The Great Garlic Experiment happened in 2013. I do not believe I’ve written up that experience in detail anywhere on this website, which is a shame, but the results were exclusively bad.
In short, I had deduced that my persistent bloating must be the result of SIBO, because bacteria produce gas, and and I only had a small intestine left. Airtight logic, right?
I certainly thought so. So I proceeded to self-medicate with absurd amounts of raw garlic for several days, and I did an American Gut microbiome profile before and after:
Before raw garlic:
After raw garlic:
Not only did this experiment not help my digestive symptoms and do arguably bad things to my gut bacteria, it tanked my mental health. Tanked. Like, standing at the counter wrist-deep in salmon patty mixture sobbing for no reason.
For the next several months at least, regular intake of probiotics and fermented foods was absolutely critical to my mental health, and I have no idea how long it look my gut bacteria to recover some semblance of balance, if it ever did.
Never say you can’t fuck yourself up with raw garlic.
More Antimicrobials and Fecal Microbiota Transplant
I talk about both of these things in much greater detail in my post about my experience with FMT.
In short, a stool test soon after The Great Garlic Experiment uncovered an infection with an organism called Plesiomonas shigelloides (which was either present before, and survived, the raw garlic, OR took up residence post-garlic in the gaping hole I had created in my gut ecosystem).
Because my GI doctor wasn’t “comfortable” treating it, I embarked on an herbal antimicrobial protocol (late 2015 – early 2016) with a functional medicine doctor. Which didn’t work.
Then, I may or may not have given myself pouchitis so that I could qualify for an FMT clinical trial. And then I lived in San Francisco for a couple months to participate in said trial.
If that’s not desperation, I don’t know what is.
The FMT got rid of the Plesiomonas shigelloides (yay!). But, it didn’t do a darn thing to move the needle as far as my symptoms.
Current and Future Directions
I’m very grateful to have had some recent “aha!” moments pointing me in the direction of non-gut and non-food interventions for my lingering symptoms. Things like sleep and circadian rhythm, nervous system tuning, and overall brain posture (a term of my own coinage – let’s make it catch on!).
Sometimes I wish I had one of those success stories where the SCD, or probiotics, or [insert magic protocol here] cured me, and now I’m healthy. But hey, where’s the fun in that??
My life is pretty great right now, physical and mental symptoms notwithstanding, and I’m excited about all of the new directions I have to explore. You can follow me on IG if you want the play-by-play; otherwise, I expect that next time I update this post will be to report some breakthroughs!
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