Today is World IBD Day, which seeks to raise awareness of Irritable Bowel Diseases. What a fuckin FUN topic!! I'm soooooooo HAPPY and I wish you a HAPPY WORLD IBD DAY
I'm not someone who is going to "look at the bright side" of anything, I'm going to tell you what IBD is, and why it sucks, and I'm also not looking for pity. I guess I'm just telling my story or some bullshit like that. And maybe you'll learn a little bit if you don't know much about this group of FUN diseases.
I'm writing this mostly so that other people with IBD who may read this don't feel alone, and so they might read my badass prose about it and feel understood and maybe even cool about their triumphs just living another day with a smile on their face and loving and living and laughing through the challenges.
Disclaimer: There's so many causes and so many reasons to demand better healthcare, to demand better treatment, to demand civil rights, to demand x y z. I'm not advocating for more attention to this than anything else. It's one of those "let's feel not alone together" things. Life is hard for everyone in different ways and this is part of the challenge of mine, and many others.
Disclaimer 2: I'm not a doctor. Surprise, surprise. But I do understand a lot of medical terminology because of my day job, and I've heavily researched IBD since I was diagnosed when I was 17. I will be explaining things in my own words.
These rates are fixed, and rent controlled. My awning is under construction.
Here's the educational part.
Irritable Bowel Disease (IBD) encompasses one of two major diagnoses: Crohn's Disease or Ulcerative Colitis.
Crohn's Disease = When your small intestine, sometimes duodenum (connector between stomach and small intestine) and large intestine (aka Colon) and maybe your rectum are FUCKED and your immune system tries to fight all of them because they're confused and they attack your normal body processes because they think your own organs shouldn't be there and they MUST BE DESTROYED.
Ulcerative Colitis = The same as Crohn's but it doesn't affect the small intestine, just the colon and maybe your rectum.
Crohn's is named after some dude. Ulcerative colitis is much more descriptive of a name.
Ulcerative = ULCERS = bloody sores like you scraped your knee on cement but it's inside your intestine
Colitis = DISEASE OF THE COLON
If Crohn's were more aptly named, it would be called Ulcerative EVERYTHING AFTER YOUR STOMACH-ITIS
Dr. Burrill Crohn, discovered (?) Crohn's disease in 1932. Good job? Neat? What kind of name is Burrill? Did kids call you Burry? Barry? No one called you Burrill your whole life....right? Like....right? Maybe they called you Pops or Champ or Dick but...Burrill??
Very little is known about the cause of either of these diseases. 20% of all cases have family members who also have it, so we know there is at least a slight genetic component. Scientists and doctors say it's not caused by any particular diet habits, however, your diet may exacerbate your symptoms.
For my own proof of this, my father was diagnosed with Ulcerative Colitis *after* I was. Several years after in fact. And my cousin was diagnosed a couple years after me and has had a worse go of it so in my personal experience, genetics does appear to apply.
Ok that was fun and learning.
Here's my story. Trigger warning: I'm gonna talk about shit. I told you this was a fun disease.
When I was 15 I noticed blood in my stool. Stool is a fancy word for POOP.
This kid gets it. Natural bio processes in action. Look at this inspiring acceptance. You and me, grull. Till the end.
I was scared to tell my mom. Fun fact, I noticed blood in my stool before I noticed blood where it *should have been* so that was also fun.
When I finally told my mom about it we went to the doctor, and I was misdiagnosed with IBS, which is Irritable Bowel Syndrome. That basically means you need more fiber. It's not a chronic disease, it's an annoyance.
So I was prescribed Metamucil and little baby wipes for my little butt so I didn't get infections and stuff. Because...I don't even know why.
When I didn't get any better, I was ordered to get a colonoscopy. That's a procedure where you EMPTY OUT YOUR WHOLE DIGESTIVE TRACT and then get sedated and a doctor sticks a scope up your butt and looks around in there. The prep for a colonoscopy used to be HIDEOUS and I had to gulp down 2 gallons of this medicine called "Go Lightly" and it tasted like rancid lemonade. You can only have light-colored liquids for 24 hours before the procedure. Nothing red or purple because that could be mistaken for an ulcer or blood during the procedure. This stuff had to be drank extremely cold, and I had to drink a glass every hour for 10 hours. By the end of the day I was so cold I was wearing multiple sweatshirts and blankets to stay warm in the house. Not to mention going to the bathroom and peeing out of my ass for the whole day, and feeling so hungry that I felt like a ghost.
Slimer enjoys lots of food, but does he digest any of it? Who is to say.
And this is the ghost movie that I actually watched first because I'm a millenial and an only child raised by a single mother so I was on my own for establishing a cultural canon. Casper was .... more of an impact on me than I should admit.
Then you have the procedure. You have to be accompanied by someone because you're completely sedated. I'm 17 at this point = old enough to be completely embarrassed. My mom accompanied me of course. So you get into your hospital gown and they inject anesthesia and then you're out. Sleepy times McGee. Then you wake up in a room with some nice curtains and all I hear is "pffffft" ..... "pbbblbbblbbblt"..... "pffffblbbblt" and I realize I'm surrounded by fellow colonoscopy patients "passing air" post-procedure. It's an entire hospital wing of farts. Mostly humans older than 45 because that's when you get a preventative colonoscopy to make sure you don't have colon cancer. So there I am, 17 years old, singing along with the beautiful chorus of post-procedure toots.
Yes, this is Peter Griffin and animated Michael Moore performing an original fart musical composition and it's beautiful.
Then comes the results. 2 years after my initial symptoms we realize I have worse than IBS. I have IBD. I was diagnosed with Crohn's disease. Rad. Now what. Put me on an immunosuppressive agent = suppresses my immune system targeted to a certain area. Guess which one? Yep. My EVERYTHING AFTER MY STOMACH area.
My first medication was Asacol. I was on it throughout college.
I started at UW-Madison in the fall of 2004. I was stable enough.
Sophomore year, I relapsed. And I relapsed badly.
What does an IBD relapse look like?
You become an infant. It's quite...humbling.
So, I was hoping to find a slam dunk meme for "teaching moment" but I found this kid, and she slayed me so hard I had to use it. Wow. She is *ashamed*. I feel you. I had a side pony too.
Symptoms (aka the most fun list you're about to read):
Suddenly and very urgently needing to use the bathroom because your body tells you "I HAVE TO SHIT RIGHT NOW" whether you do or not, and this happens OFTEN
Most of the time your body is just signalling your that you HAVE TO SHIT RIGHT NOW but you don't. But you can't take that chance because WHAT IF YOU DO?! It's utter hell
Blood coming out of your ass (scary right? It's like consumption but out the wrong hole...I wish it was more romantic)
Severe and sharp pains in your lower stomach (that's where the ulcers are! aka where your OWN BODY IS ATTACKING YOURSELF)
Fatigue and anemia because of the blood loss and iron deficiency = dizziness and lightheadedness. One time I fainted in my boyfriend's shower because we were about to have sexy time but instead I passed out. FUN. fun. Fun.
So I'm in college, taking classes where it is not fun to get up and leave, sometimes MULTIPLE TIMES during a lecture, and then come back and try to catch up. Especially not during FINALS when you have to ask a particularly mean-looking proctor if you can use the bathroom and make it seem like you're not trying to cheat.
So I had another colonoscopy, and then I had this cool thing where I SWALLOWED A CAMERA. It was about the same size as Miracle Max's chocolate-covered pill in The Princess Bride. I had never swallowed anything that big before, and I was scared I wouldn't be able to do it. But I did. And it was a CAMERA. Then I was hooked up to sensors, and I carried a battery pack. I think I wore this for about a week. I feel like my doctor was kind of using me to have fun with his camera toy, but honestly, I did feel pretty special about it.
Full clip of Miracle Max. I had the esteemed pleasure to re-watch this delightful movie recently. May you all have the opportunity to come back from feeling "mostly dead" and if not, the autonomy to decide how you'd like to die.
From there, my doctor deduced that I didn't have Crohn's, I had Ulcerative Colitis (hereby abbreviated to UC), which means only my colon was affected. He moved me to Sulfasalazine. Another type of immunosuppressive drug. That worked better than Asacol. For awhile.
My senior year of college my mom convinced me to try a nutritionist because my western medicine doctor had misdiagnosed me and now prescribing me a different drug, etc. = The trust was waning. It was mostly because so little was understood and available medicine-wise about IBD at that time. But my mother was referred to a nutritionist who specialized in helping people with Crohn's and UC. So we signed up. I believe we paid her $100 per phone call. And of course my insurance didn't cover nutritionists.
This woman had me on a strict diet of only white bread, rice, pasta, and water. Basically a prison diet. These foods are easy on the digestive tract and allow for the ulcers to heal. They're like fluffy blankets for your colon. While they don't give you any nutrition and make you tired as hell. I was in college, and tired, and it was difficult to stick to this diet when I was used to coffee and sugar to get me to the next class.
Bread and water. There are worse things. But not many. In jail, they give you bread AND CHEESE. So. There's that.
I felt like Natalie Portman in V for Vendetta. Ok, not really. But it was fun to pretend.
I had only white grain foods for a month.
Then I slowly started incorporating eggs, white meat, and cooked vegetables into my diet.
Then I slowly started introducing raw vegetables, fruits, whole grains, nuts.
No alcohol ever, no coffee ever, avoid sugar, avoid dairy.
My white grains diet did stop the bleeding. But it didn't stop the whole I HAVE TO POOP RIGHT NOW feeling that is just....what beauty is made of. So my journey with a nutritionist was a neat and exhausting experiment for me. I do believe that nutrition is important to pay attention to and I do believe that what we eat helps and hurts us. I don't believe that my disease can be managed effectively without medication.
In 2008 I graduated from college. I was lucky enough to get a job right away at a healthcare software firm called Epic. Where I didn't need any experience, I just had to be pretty math smart, agreeable, and hard working in order to succeed. In other words, it was very stressful. But it paid off my student loans, and I had insurance, and I was grateful.
Ok, so I've worked in the healthcare IT field for almost 10 years now. This image is over the top, but I have to tell you, sometimes doctors get REALLY MAD at people who work for them. And for good reason, I get it. You're under a lot of pressure. Patients get mad at you for not fixing their bodies. When they've smoked and eaten like shit their whole lives and just want drugs to fix it. It's this poetic cycle for me personally of doctors being under lots of stress and then exhausting at me, the poster child of the computer system, and then me being stressed out by the interaction and having GI exacerbations, and then seeing my own GI doctor to prescribe me meds to help me deal with the HIGH STRUNG DOCTORS I WORK WITH. I don't have answers only observations.
IBD medication is very expensive. There's no way that I could manage to pay for any immunosuppressive medication without insurance. Otherwise, given my personality, I may have dropped out of college to do music, or not pursued a job like Epic. Who knows. But my disease has been a deciding factor for many of my life choices ever since I was diagnosed at 17.
The first Thanksgiving after I started at Epic I went to visit my mother. I slept for almost 20 hours straight and then I got a strange version of the common cold where I had shivers, vomiting, was extremely tired, and just couldn't really function. Oh yeah, and I was relapsing.
I adore sleeping, and I adore a sense of peace with imminent death. So of course I adore Wednesday Adams.
The second place winner of the "I love sleeping" meme contest was this adorable face plant kitteh. May she awaken to wet food and pets to make the world of the living worthwhile for now.
This is a good time to mention I was always in denial about my disease. Always. I never wanted to admit it was a problem for me, I never wanted to admit I needed help, I never wanted to admit it was something I struggled with. I just dealt with it. I was me. Nothing stops me. *graphic warning* If I had an accident, just deal with it. Take off your underwear, wrap it in paper towel, throw it away, go commando back home, or stop at Walgreens and buy more. Thank god for Walgreens. It's not embarrassing, it's fine. Everything is fine. Look, I handled it. I'm fine.
It's fine. You know, you've rationalized it all you can. You have complete perspective over your reality. It's fine. No, it's fine.
After this relapse, I was ordered another colonoscopy and given steroids. They made me better and I went back on my maintenance meds. I got back into remission. Life was good...enough. For awhile. Of course I still had moments, but it wasn't an every day struggle. And that was good enough for me. That was great for me.
I decided Epic life wasn't for me anymore. Travel was burning me out, having had customers in all 4 U.S. time zones, and I had been purposefully sabotaging myself to quit by being in 4 different bands. This was 2014.
Epic had this awesome incentive program for employee retention called a 5-year sabbatical. If you stayed in the company for 5 years, you got a month-long sabbatical in addition to your vacation days where the company would pay for your travel to another country for a whole month. I chose to record an album in Canada...because of who I am. Most people went to New Zealand. Nope, not me! Let's go to Canada in November. It was one of the best experiences of my life.
My mother was very about my employment at Epic. She was thrilled I had landed such a nice job and she wanted me to stay there until I died. Err, sorry, retired. And she really wanted us to do a mother-daughter trip together for my sabbatical. So I did what was natural for me to do with my mother...I lied to her. I lied about my quit date at Epic, I lied to her about my sabbatical, and I took her on a trip to London with my own money after I had already left the company. I am supremely neutral about my actions related to this. Part of me feels bad, the other part doesn't. It's just....what happened.
In London, I relapsed. Badly. Was I stressed out that I lied? Was I stressed out because I was around my mother? Was I stressed out because I was in a new country? Was it just the normal progression of my disease? My mother was worried about me. In the awfully oh no way that mothers worry about their children, and they can't help it, they have to, it's part of the job description. But I didn't have insurance, and I couldn't admit that to her. I had left Epic to try to be a musician full time. When I left the company, I was in remission. A few months later, I was relapsing.
I promised my mom that when I got home I would schedule a doctor's appointment. But I didn't have insurance. So I looked up Obamacare. It was 2014. I could do that.
I really believe from my own experience that Obamacare helped me. HOWEVER, our health care system is crazy. I know this as a patient and as someone who works in the industry. The whole insurance dynamic is complex and dumb and even my own job serves to increase healthcare prices to the point where everyone needs insurance through an employer to even have a chance. TANGENT SAVED FOR ANOTHER TIME.
Healthcare.gov. Both helpful and maddening. Because of my chronic illness, my premium was higher than the average human. No, I wasn't denied coverage, but I had to pay more than healthy people of my age. It was about $350 per month. And when I was trying to make a living as a musician...ha! HAHAHAHAHAHA OH MAN *slaps knees* GOOD LUCK *falls to the ground cackling* HOO HOOOO *breathes through it* HAHAHAHAHAHA
Staring into my financial ruin, I had yet another colonoscopy to help my doctor assess my relapse situation. I was prescribed a different immunosuppressive. This time, Lialda. A brand new drug with big promises. It was a miracle. Truly it was. A....very expensive miracle. Without insurance, Lialda costs over $1,500 for a month's worth of medication. And for my colonoscopy, which I had to have in order to justify my new medication, I paid out of pocket over $3,000 in medical expenses that weren't covered under Obamacare. Please understand I'm not denouncing Obamacare. I have complicated thoughts on this and they will be saved for another day.
Back to basics, if we've learned anything from this particular journey, this med was a miracle for me FOR AWHILE. IBD progresses when it wants to and you have it for life.
I was determined to make it as a freelance musician, but I lacked the discipline needed to truly be self-employed. I like sleeping, I like going out, I like friends, and...I had gotten used to a certain lifestyle. And I was paying for a very nice studio that I could record in and be creative in 24/7 and I refused to give it up. And my insurance was a lot. And and and and.
In 2015 I relapsed again. Another colonoscopy. I was prescribed steroids to get me back on track. This time Prednisone. A drug known to have nasty side effects including but not limited to weight gain, vomiting, nausea, acne, increased sweating, dizziness, insomnia. Fortunately for me, I only experienced insomnia, and because I'm a night owl anyway and was without structured employment, I just stayed up all night at my studio writing and mixing. It was awesome. I loved Prednisone. So much so that I refused to go back to my doctor at my regular follow up and I ended up staying on Prednisone for 6 months.
This is.....bad. Being on any steroid for a long period of time can mess with your bone density, your ability to absorb nutrients, lots of bad things long term. So when my guilt caught up with me and I went to see my doctor again, and I was weened off slowly. This is called a taper. If you suddenly stop something like a steroid, you can experience withdrawal symptoms. Imagine that.
And I was lucky. Some people experience what is known as "moon face" or extreme appetite increase so they gain weight like crazy, or they have super swingy moods. On the other hand, it is a miracle discovery of science to help a multitude of diseases. Life is an amalgamation of contradictions.
In 2016, I moved to New York City to pursue music. I wanted more connections, more opportunity to take my music to "the next level" as we call it in the biz. It's the dream. And if you don't pursue the dream, you either learn how to be a real adult and settle down and have a family, or you remain delusional and keep trying to achieve the dream even though you're 30 and decide to uproot your whole life. I sold my house. I left my chosen family. I decided to live a risky adventure. With a chronic disease...that I decided to never let stop me. I realized NYC was way more expensive than I even budgeted for. I couldn't find a consulting job like my Plan B spelled out so fool-proofly. I took a job as an IT manager at the #1 orthopedic surgery hospital in the country: HSS.
My boss was a confusing demanding nightmare. I had new insurance and a new doctor. My new doctor put me on a "maintenance" dose of my miracle drug Lialda. I relapsed. Was it the stress? Of having moved cities? Of my job? Was it the maintenance dose of my drug? It certainly wasn't my lack of exercise because I was biking 10 miles every day commuting to work. That might have been the only thing saving me.
I found another doctor. She prescribed me back to my normal dose of Lialda and prescribed a new steroid to get me back on track. Uceris. Another miracle.
I was fortunate enough to be able to leave HSS a year later and found a new job at Bluetree. They value their employees and care about creating a culture that doesn't stress people out or burn people out. A very novel concept in the world of healthcare IT. I feel very fortunate to work for this company. I work from home every other week.
However, this chronic disease will take its toll and progress despite stress, despite lifestyle. I've relapsed again and am currently back on the steroid Uceris. I have another colonoscopy (my 7th? I've lost track) scheduled next week. The prep for colonoscopies has gotten better over the years. Now I only need to gulp down 2 large glasses of medicine, and it doesn't taste quite as gross as "Go Lightly". But I still can't eat anything for 24 hours and need to be accompanied to the procedure. I'm grateful that I have health insurance, I'm grateful that there are new medications for IBD coming out that help us. I'm grateful to insights regarding nutrition and I pledge to pay more attention to what I eat after I'm stable again to see if my diet can help keep me in remission in addition to my medication.
Ultimately, I've learned to be gentler on myself. Everyone deals with something that isn't "normal" unless you're Zack from Saved By the Bell. I've realized I put a lot of pressure on myself to do and work and produce and x y z even when I'm relapsing. When what I need the most is to admit to myself that I need help. And to prioritize the fact that I need help. I think we can all relate to something like this.
Oh, Zack. Never change, Zack.
I hope that my post has shed some light on what IBD is, and if you have IBD or something similar that you feel less alone in your struggle. And if you are struggling with a chronic illness that is something different, that maybe you can still feel less alone reading my story. I know that through my illness I have more empathy for those who struggle with health problems and I wish us all advancements in treatment, emotional support, permission to heal, empathy without pity, and a full life.