Feeling Ulcerative: Colonic Artwork

Inflammatory Bowel Disease. For those of us who live with it every day, it has a massive impact on who we are. It can reach deep into our soul (and gut!) and affects us both emotionally and mentally. Often times, these struggles can be challenging to convey to others.

Matthew Lee, an Ulcerative Colitis patient, portrays his life with UC through creative artwork. He has generously allowed us to share his colitis sketches below:

Thanks again to Matthew. We found his visual impressions of UC inspiring.

GUTS is always looking to share creative work by members of the autoimmune disease community. Feel free to contact the editor at heltzect@gmail.com if you would like to share your work on GUTS.

A Colitis Warrior, Part I: Cherry Kool Aid

Hello, all! GUTS is back and running after a holiday break and we are continuing our contributor content with our first post from Reddit user /u/Hunhund. She is an Ulcerative Colitis patient who chooses to approach the condition with an awesome sense of humor that we think many of you will enjoy and relate to.

WARNING- The article below contains explicit language

Her story begins:


What a Shitty Disease!


Well, hello there! I’m going to tell you a little bit about myself and my weird “journey”, we’ll call it, over the last two years. I am an Ulcerative Colitis sufferer, warrior, woman with many talents and stories to tell. I hate saying “sufferer” because it implies defeat in my opinion, but it’s a label anyone afflicted with a chronic disease is given. Warrior is a term I love to use because we fight with our own bodies every single day, and my favourite martial art is humour.


So I started off with a remarkably nasty case of food poisoning from a reputable wraps and sandwiches franchise (which I will not name), and ended with a diagnosis that changed my life forever. The first 24 hours of running to the toilet, sitting on the toilet, feeling the hot lava fire of Hades erupt from my backside was brutal. But it didn’t stop. It continued for 36 hours, then 48 hours…then I noticed I was passing cherry kool aid.


“What the f*ck? I didn’t drink any cherry kool aid…”


I remember the car ride to my parents’ house (I was living in an apartment with a room mate at the time); my darling father wrapped the passenger seat with garbage bags and drove a good 30 km/h under the speed limit, took the smoothest roads and looked as tense as my asshole was trying to keep the hellfire inside. His knuckles were white. I mean white. And I’ve never seen that stoic man look so worried in my entire 27 years of knowing him at that point.

So I was sitting there, looking down at the lines on the road to pass the time as my gastric system burbled and gurgled violently, contemplating what it meant for my food poisoning symptoms to be lasting as long as they were. Was it a parasite? Did I somehow catch dysentary? Did I shit SO much that I pulled something or rendered my bowels defective?

The second he put the gear into park, I bolted out of the SUV and ran for the door. My mother had unlocked it knowing that I was going to need to marathon it to the toilet. And I pulled a Usain Bolt…


Cherry kool aid. And there was nothing else to it. As that day progressed, I was lazy boy chair bound. My darling father went to the store and bought me some adult diapers to wear, which I made quick work of and went through half that package by dinner time. The next day I had no energy, was barely awake for any conversations my mother tried to have with me, and it was only the beginning…


I ate Tylenol with codeine like they were M&Ms, and managed to make my way to my doctor’s office. After two trips to the bathroom I was finally able to sit on the examination table for her to listen to me and look me over.

“This sounds like Crohn’s Disease”, she told me. “I’ll refer you to a specialist. In the meantime, try to stay hydrated with…” she gave me a list of so much stuff. Told me to eat plain white rice and chicken stock.


She gave me requisitions for blood and stool samples, and I made my way to the nearest collections clinic.


“And this is called a ‘hat’, you will need to collect the stool in the bowl, here. Try your best to not get any urine in…”


I blinked as the technician handed me that plastic bowl resembling a Mayan headdress.


“I…I”m sorry, I have to poop in this?”


“That is correct. And use this wooden stick to scoop the sample into this cup. Be sure to write the time of collection, and bring it back here as soon as possible.”




That was embarrassing.


So I got home, went to the toilet and lifted the seat to position the “hat” as per the instructions. I set the cup on the counter and opened the packaging for the wooden stick (over sized popsicle stick, really). Two more cups inside the big brown bag caught my attention and I brought them out. I later found out that these cups were for C Diff (Clostridium Difficile) and parasite testing, but was quite baffled at the time. They had little sporks (I kid you not, they are mini sporks) attached to their lids. I was going to collect my shit with sporks…What has my life come to?


In the not-so-distant future I returned to deliver my sample. I couldn’t quite figure out how I was supposed to poop in the hat so there I was awkwardly straddling the toilet because it just felt weird to sit down properly. It was like peeing in the woods, but far worse.

After a couple of minutes it was done. That was it. I made it. I accomplished what I felt was the impossible at that time, and what I had to do next was even worse.


When my brother was a baby, he decided it was a good idea to reach into his diaper and fingerpaint his room with his own poop. There is nothing cute about that, and there was nothing cute about what I was about to do, either. I gagged and teared up, but with shaking hands I managed to get my samples into their cups and take it all back to the lab in that brown paper bag.
At this point I can imagine you’re either grimacing, laughing, or feeling a little sick. Well just you wait until I tell you about the colonoscopy prep…next time.

Thank you, again, to /u/Hunhund. We all look forward to tales of your further adventures!

An Invisible Disease

Reddit user /u/ProfessorChaos_ shares her story of her recent Crohn’s Disease diagnosis as an adult, and how it quietly effected her years beforehand:

Almost 2 years ago, I started feeling really intense abdominal pain. The pain was so intense that I was unable to walk without hunching over. The next day I went to urgent care and was lucky enough to see my primary care physician. After an examination and a few tests, she sent me to another clinic across town to get a CT scan. After several hours of pain and vomiting (the contrast they made me take for CT scan did not agree with me), she called with my results. They were inconclusive, but she said that they showed pretty bad inflammation in my bowels. She said that I needed to get to the ER immediately.

My then boyfriend (now husband) and I waited for over 5 hours in the ER. 5 hours. Eventually, my name was called and we went to my little bed. Nurses and doctors came in and out of the room asking me what was wrong. All I could say that I was in really bad pain and I had a CT scan earlier, my results should have been sent earlier. Eventually, I was admitted to the hospital. I had my own little room where I was poked with needles all night. I have a heart palpation, so they were also checking my vitals every hour. Doctors kept telling me that they thought I have Crohn’s Disease but I’d have to have a colonoscopy for sure. So at age 23, I had my first colonoscopy.

I stayed at the hospital for 5 days. By the 5th day, I was officially diagnosed. I had 6 medications, a new diet, an outrageous hospital bill, and Crohn’s disease.
According to my doctors, my inflammation indicates that I had been living with the disease for years before I was diagnosed. Most of my health issues can be traced back to Crohn’s Disease. It is often called the “invisible disease” and for good reason. I might look completely healthy but feel like I’m dying inside. CD also affects other parts of my body. I stopped getting a regular menstrual period for over 2 years because I was so anemic and my body decided to use my blood cells to fight off the disease. As my doctor put it, “having babies becomes a luxury”. I am tired, ALL OF THE TIME. Fatigue is probably one of my worst symptoms, apart from the almost constant need to go to the bathroom and the pain.

Crohn’s is quite the lifestyle to get used to. I’ve been on all sorts of medications, none now, thanks to insurance complications. I am a firm believer in the medicinal properties of marijuana. I have a wonderful GI doctor, an amazing support system, and am a part of an online support group (the Crohn’s subreddit has been my go-to through all of this). Everyone has been so wonderful and helpful. I couldn’t do this without you. Thanks for reading my wall of text! 🙂

Thanks again to /u/ProfessorChaos_ for sharing! 

Interested in Being a GUTS Contributor?

Hello, dearest readers!

Are you interested in being a contributor to the GUTS blog? Do you live with autoimmunity, treat or research these conditions, or have loved ones with these issues?


We want opinion pieces, life experiences, interviews, research, lifestyle postings. Its all fair game and its all for the cause.

Email me at heltzect@vt.edu and let me know about your interests and what sort of contribution you would like to make and we will see about making it happen!

Best to you and yours,

Hard to Accept: An IBD Soldier

I recently had the honor of talking to Reddit User /u/JustSomeoneWhoCares, who is submitting the first Contributor Content for GUTS.

His story about his struggle with Ulcerative Colitis, as previously posted on /r/CrohnsDisease:

I’ve just recently started using reddit. I’ve used it for awesome videos, funny pictures, interesting facts and tidbits of information, but I never thought about using it to vent until now. My story is one of disappointment, frustration, pain, agony, defeat, destruction, and finally, redemption.

I was diagnosed with Ulcerative Colitis when I was 16. It started out as a little pain. Then a little blood. Then more pain. More blood. I was embarrassed. I had no idea what was going on. I’ve always been a quite person. I flourish in social scenes, but I keep my cards close to my chest. I didn’t tell anyone. Not even my mother who is also a UC patient. I suffered in silence.

When I was a boy, I had always dreamed of being in the Army. Not the Marines, or Airforce, but the Army. My father was in the Army. My uncle was an Army medic who was killed in Vietnam. My grandfather had just been drafted into the Army during the Korean War until his experience as a car mechanic made him eligible to work on a thing called a “computer”. I had always dreams of being a military man. Back straight. Eyes forward. Chin out. I wanted to be something that little kids gawked at. I didn’t want to join for any other reason other than that was what I felt I was born to do.

I began physical training when I was 14. I began running to school, going to football practice, then running home. I mowed lawns to buy a weight set and began lifting. I was focused on becoming the quintessential picture of a soldier. I had dreams of being Special Forces. Those unnamed faces. Those shadow warriors. I wanted to lead the fight against my country’s enemies, because I felt, and still feel, America is the best place on the face of this Earth. I had already become a regular at our local recruitment office, just hanging out, getting to know the slang, seeing the way soldiers bred soldiers. I wanted to be them.

When I turned 16, nothing had changed. I was in top physical form. I had a wonderful girlfriend, fantastic grades, and was on track to joining straight out of high school.

Then I got sick.

It started as some pain in my abdominal region. I shrugged it off as the stomach flu. But the pain persisted. Become worse. Then the blood came. Just a little at first. Barely a tinge of red. I’m ok I told myself. It’s nothing. I’ll be ok. It’ll be ok. The first month passed with no relief. The pain only got worse. The water more red. After three months, I was barely standing. The body I had worked so hard to perfect was a shell of its former self. I had lost 35 pounds and enough blood that I had a yellowish tinge to my skin. My mother finally took my to the doctor where I came clean about when I had been suffering through. While relating my story, my mother began crying. She knew the reason for my pain. She had suffered through it herself. She knew I had Ulcerative Colitis.

How could this have happened? I wasn’t meant for this. I was meant to be a warrior. I was meant to be that man on the poster, that soldier on your campus. I was meant to be a soldier. I wasn’t meant to get sick. To bleed from invisible wounds. I was meant to defend my country. To fight for what I believe in. I wasn’t meant for this.

After a few tests, the admitted me into the ICU of the hospital. This was the first time I had morphine, and god it was delicious. The pure rush of nothingness and everything all at once through IV and into your soul.

I laughed and laughed.

Then came the blood transfusions. A stranger’s blood is all the stranger when it’s slowly sliding its way through your veins, becoming part of you. And oh the delicacies of hospital chicken broth. I was miserable. I longed to run. To jump. To fight. But “no” says the doctor. You need rest. “No” says my doctor. You need these tests. “No” says my doctor. You have Ulcerative Colitis.

What the f@#%.

And oh god, the tests. I can’t quite remember any of them save one.

The berium enema.

I’ll make a long story short.

They make you drink metal 7-up that makes you have to crap acid. “Just try to keep it down.”

They tell you not to use the restroom. “But I have UC doc, I shit regularly!”

They stick a plastic tube into your rectum. “…”

They inflate the tip of the tube that’s in your rectum. “!!!!!!!”

Then they have you walk over to this space age torture device that’s made out of the shiniest metal.

“Hold still”, says the technician. “And try not to move.”

I’ve never though myself a great multitasker, I usually focus on one task till it’s done. But trying to focus on not moving, while a balloon is inflated inside your inflamed rectum, while lying on a cold, flat, metal surface, while it’s rotating to various 45 degree angles, you tend to learn to multitask.

Because after all of that, you just really don’t want to shit yourself.

One thing that kept my spirits up in the midst of all of this, were the visits from Angie. Her raven hair. They way she always smelled of cocoa butter. Her shining, newly braces-free smile. She was the best part of my day. A kind word. A kiss on the cheek. She always was the best.

She brought me a giant card made out of a brown paper bag you get from the grocery store that a bunch of people from school had signed.

The greeting in it said, “Sorry you have leukemia.”

I laughed and I laughed.

Fast forward to graduation. I’m not as strong as I was, and I get winded a little quicker, and I’m still bleeding here and there, but I’ve got stranger’s blood. I’ll be ok.

I miss going to all the grad parties because I’m so weak. Angie falls asleep with me on the couch. She always was the best.

Two weeks later I stretch my legs and slowly make my way down to the recruitment office. My birthday was a week ago and I’m 18 now.

“Hello Sgt. Mendoza.” “Jesus, what the f@#% happened to you?” “Leukemia. Can you believe it?”

I open up about my diagnosis. The medications I’m taking. The stranger in my veins. My immune system that’s so bad ass it tries to f@#% me up. I lay it all out.

“Ok”, Mendoza says. “Let me talk to the doc and we’ll see what we can do.”

“Sounds good sir.”

We shake hands. It’s last time I’ll see him.

Two weeks later I get a call.

-beep- You have one missed call. -beep- Hello. This message is for Jacob. This is Sgt. Mendoza. I spoke to the doctor and unfortunately you will not be able to join. If you have any questions, feel free to call. Goodbye. -beep-

I sit in that 6 o’clock haze. The kind when the sun and the night are battling for dominance, and everything just gets grey.

But what am I supposed to do now. I call him back.

“But I haven’t planned for anything else. Is there anything I can do?” “Kid, you can’t even join the Coast Guard.” -click-

Fast forward two years. The decent was quick. I blamed myself. I blamed my mother. I blamed God and all of his f#@%ing infinite bullshit. I blamed Angie and the stress she caused. She left me. She always was the best.

Whiskey became my compatriot. My brother in arms. Marijuana became my unwinder. My chill mode. Ecstacy became my f#$% yeah. My OH F@#% YEAH.

I partied. I boozed and schmoozed. I laughed and I laughed.

The pain was constant, but I had accepted that it always would be, so why the f#%@ try.

I still read up on the war. I still called everyone “sir” and “ma’am”. I tried community college, but I couldn’t stay focused. It always seemed as if the classes were quieter. My stomach liked to party and wanted everyone to know.

I raged. I beat myself up. I stared at a knife, and wondered what it would be like to bleed from somewhere else.

I had been taking prednisone since being diagnosed, since there wasn’t much else to take.

I raged. I roid’ raged. I beat my fists and cursed the world. I spit and slavered. I shouted and seethed. I was frustration incarnate. I was crazy.

I had become a shell of my former self. Skinny and sad. Weak and wicked.

I stayed up late and slept in later. I thrashed and pushed my way to a greater high. A better time. All to escape the pain.

It all came crashing down around me one night. We were in L.A. We were f#$%#@ up on ecstacy. And I just remember holding hands with this girl while watching the paramedics try to revive this little raver girl who forgot to breathe. She didn’t make it. Something inside me cracked that night. I left the next morning with no word.

I told my mother of my drug-fueled rampage of self-loathing and remorse. She said it’s ok. We’ll get some help.

“So, tell me how you feel.”

That doctor wasn’t prepared. My fear. My hate. My sadness. My happiness. My crazy side. My compassionate side. My wild side. My calm side. “F#$% the world and f#$% UC.”

After a while, I finally got all of the hot air out of my lungs and finally had time to listen.

She was right. I shouldn’t blame myself. She made some sense. I’m not the first person to feel crazy because of things that are out of my control. She tried to talk to me about God. “Not really my bag doc, but I’ll listen if you talk.”

And listen I did. And it helped.

I quit the drugs. I quit boozin’ every night. I stopped hanging out with people who promoted my craziness. But most of all.

I stopped blaming myself.

Fast forward to now, I’m 3 years sober, with only the occasional Johnny Walker Black neat.

I smoke cigarettes, a nasty habit leftover from the crazy days, but I’m hiking every chance I get.

And lo and behold, my UC has been in remission for 2 years. It seems that my own blame I had placed upon my shoulders caused my system to get all screwy. I had nowhere to turn to send the blame. Blame for getting sick. Blame for losing Angie. Blame for all of the bad things I had done. But most of all, blame for not being able to pursue my dream. I wanted to be soldier. I wanted to be that man that kids stop and stare at. I wanted to be someone that could be idolized. Yes sir. Yes ma’am.

So I do, everyday.

I’m polite to everyone I meet. I open doors and offer it to anyone who’s behind me. I lead by example. And just because I don’t have a uniform, it doesn’t mean I can’t act like I do. I try to do my best in every aspect, in every way. Every single day.

Because that is what being a soldier means to me.

Thanks again to /u/JustSomeoneWhoCares for allowing GUTS to share.