shit.

Shitty….Literally 

I was diagnosed with Ulcerative Colitis in 2005; I was 19. This was soon after high school. I moved to San Leandro, started school at City College of San Francisco for photography, and worked at Starbucks in downtown SF on Mission & Main street. I was living the dream; exploring the city, visiting museums, making new friends, doing homework at Cafe Puccini (long before it burned down), drinking and eating mini tacos at Beal Street Bar & Grill with coworkers (even though I was under age). The city life was so fun, full of adventure, and everything I hoped it would be. 

Every few months I would feel very run down, stomach sick, and find myself rushing to the bathroom. One day, I looked into the toilet to see blood in my stool and I was TERRIFIED! But I dealt with it like any 18 year old would, I went back to class, ignored it, and definitely did NOT tell anyone about it. Quickly, I felt the urge to go becoming more and more urgent and with my daily commute, most days I feared I wouldn’t make it to the toilet on time. It was insanely stressful. I got so bad, I couldn’t go to work or school and finally went to the ER. I remember laying on the floor in the emergency room for 6 hours in excruciating pain until I was seen. The Dr. gave me pain meds and a $15 ginger ale (Seriously $15 fucking bucks. When I looked at my bill later I wanted to punch someone) and sent me home. I went to a different ER a couple days later. I was given an IV, some pain meds and again, sent home. I wasn’t getting better and no one really cared to actually figure out what was wrong with me. I also racked up about $1,200 in ER visits WITH insurance. Damn that $15 soda.

My dad realized I qualified for Kaiser Insurance through his insurance (since I was under 25) and I’m super glad he took me in, as it was there I was diagnosed with Ulcerative Colitis. But I had never heard of it, nor did I know what to expect. My doctor described it in a way he thought a 19 year old would understand. He said, “Basically your body thinks your intestines are foreign and your body is attacking them.” Oh goody. But how did I get it? It’s a mystery. No one knows the cause of UC. It’s also something that can come and go your whole life. Yaaaaaaay. I was given 18 pills to swallow a day (12 Asacol pills, 4 Prednisone pills, 2 Iron pills) and released from the hospital.

I went back to work at Starbucks in San Francisco for a little while and one of my regular customers (Alex) asked where I was because he hadn’t seen me in a while. I told him I was diagnosed with UC and he said (with all seriousness) that he had UC and it’s emotionally exhausting and if I ever needed to talk to anyone he was there for me. I said thanks but kinda brushed him off not realizing just how right he was. 

I soon realized that the city was too much to handle with UC and moved back to the valley. I transferred to a Starbucks in Modesto (Briggsmore & McHenry) and moved in with my best friend. I soon began to feel normal-ish again. We lived in the ultimate party house on College Ave, took classes at Modesto Junior College, and I got all the free coffee I needed from Starbucks to keep us going. I temporarily forgot I was diseased for the most part. Until I didn’t. This disease will creep up on you and there will be good days and bad. There was one particularly bad day I’ll never forget, which I have never shared with anyone…In this house, I had three other roommates and we had ONE bathroom. I had to go SO bad and someone was in the shower. If it were my best friend, I would have just told her I’m coming in, deal with it, but it was one of our older male roomies and I was not about to shit in the same room as him. There was literally NO holding it, so I ran in the laundry room, grabbed an empty fast food box and shat in it. Better than shitting my pants right? I just remember crying A LOT that day and being mildly devastated for a while after.

I eventually met a super cute dude (spoiler alert, he’s now my husband), we moved in together, and scored a fantastic two bedroom rental house on Hackberry Ave. Everything was going great. I had a fancy job at the City of Modesto, we’d been together for over a year, and he accepted me (disease and all). In March 2008 I ended up in a super bad flare (flare is code for shitting blood all the time (by all the time I mean like 10-20 times a day) and everything and anything you eat makes you sick), My UC got so bad it landed me in the hospital for 2 MONTHS. Not two days, not two weeks, but two MONTHS. Kaiser in Modesto didn’t exist, Kaiser in Manteca fucking suuuuucked (and they didn’t have a full-time GI Doc- one would come on Wednesdays-what a joke!), so I ended up taking an exciting, fun, and bumpy ambulance ride to Fremont Kaiser. Honestly, it really fucking sucked. I just focused on trying not to shit my pants the whole bumpy, hot ride over the Altamonte in front of the hot EMT. I just kept losing blood and nothing helped. Around week three I had a heart attack from blood loss, had a couple of blood transfusions and by the end lost over 70lbs. My sister flew home from New York to help advocate for me, my dad slept by my bedside in a cot EVERY SINGLE NIGHT because I was too scared to be alone. I had so many IVs and blood draws, the last week they FINALLY decided to put in a PICC line IV. I thought I was going to die.

My GI Doctor eventually suggested a biologic that was not commonly used but was experimental for UC patients and asked if I was willing to try it. Obviously, I said YES! What choice did I have? The drug, Remicade. It’s given through IV for four hours every 4-8 weeks. The simple explanation of what this drug does is it significantly lowers my immune system so my body doesn’t attack itself, but the risk is that my body can’t attack anything else either. Oh, and I can’t forget the two paged, tiny printed list of possible side effects. Luckily, this drug worked miracles for me! I was released from the hospital but I could hardly walk, it was exhausting to brush my hair or teeth, I had Dilaudid withdraws (which made me a not so nice person), and I was TERRIFIED to eat anything. I lived on cream of rice cereal for almost a month because I was too scared to eat and get sick again. I also joined a support forum on www.healingwell.com for UC that helped SO SO SO much. I became a little obsessed with it, just knowing that I wasn’t alone. This disease can feel very debilitating and lonely. I don’t know many people in the non-digital world who suffer thru this disease. 

People sometimes ask me what Ulcerative Colitis is and if I’m feeling light-hearted, I’ll just tell them it’s a shitty disease. If I feel like they might not understand, I’ll give them the definition the doctor gave me when he broke the news of my disease over 14 years ago. If you google Ulcerative Colitis……..

Ulcerative colitis (UL-sur-uh-tiv koe-LIE-tis) is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your digestive tract. Ulcerative colitis affects the innermost lining of your large intestine (colon) and rectum.

This definition of UC is too easy. This definition doesn’t cover the mental toll it takes on you, the life alterations you’ll have to make, the strain on relationships, the embarrassment of it all, the fear and anxiety of potentially shitting your pants any time you go anywhere (not wanting to be the diva who needs a campsite next to the bathrooms), the prednisone rage, prednisone moon face, prednisone weight gain, the hospital bills, fighting with insurance companies to try to get them to cover the medications prescribed by your doctor, the look people give you when you say you’re sick but they say you don’t look sick (the joy of having an “invisible” disease), the fear of eating out and getting sick immediately. Or the people who mean well but don’t understand with the have you tried this diet or that diet?…blah blah blah. The list goes on.

I’m in the Ulcerative Colitis Support Group on Facebook and there are over 27k people in this group going through the same shit, worse shit, different shit, shitty shit shit. 

I asked a few of them if I could share some of their posts.

“I hate this disease, I hate it so much, it makes me hate myself and I’m so tired of it. Nobody understands how much it takes a toll on me. I can’t even take my dog for a long walk with my family without feeling like I’m dying.” -Lexi

This disease causes all sorts of depression and anxiety. For some, these are fleeting moments but for others, the feeling can last a long time. 

“Infusion time a week late. Had a hard time with the IV today. Had two people trying to get it to work, stuck me in the same place three damn times. I’m done with today.” -Becca 

It once took two nurses two attempts each and they couldn’t get an IV in my arm, so they called the ER nurse up to infusion. He tried twice also and couldn’t get it. By the last attempt, I was having a full blown panic attack and had to go home with no infusion. Sometimes they get it the very first time.  

“My favorite reaction when I try to explain UC to a co-worker or friend.

“Oh yeah, My tummy hurts when I eat the wrong stuff, too.”

Nope. No. Not that. But I can’t get super graphic with them, so they just think that I have a “tummy ache” often and that’s that. Maddening.” -Tom

I wanted to tell Tom to explain that you shit blood and your intestines are full of ulcers. Explain they’ll see you running to bathroom often trying not to shit your pants. Explain that it’s not a fucking tummy ache and you feel like dying from the pain. But Tom just started a new job, and I don’t think any of that would go over well. 

“It’s been just over 6 months since my body turned [on] itself. I’m now taking 6 different things to try to get me body to heel. [One] for pain. The other for gut health. I hate this. I only took pain killers occasionally before.” -Brandton 

“Needing to vent with people who understand. My son was told…that he needs to either start infusions or injections. His doctor tried for infusions and after many weeks of waiting, insurance rejected it, saying he would have to fail injections first. So the doctor tried for Humira and again after many weeks we found out…that he would have to fail immunomodulators first. When I talked to the nurse…she said that insurance wants him to try Imuran for 12 weeks and if he fails that then we will move on. She also said that the dr. doesn’t like to put young males (he’s 26) on it because of the increased risk of lymphoma in young males with this med. She just called back and said we will have to play the insurance game and have him on it for the 12 weeks so he can get on Humira after that. I am so upset and angry at the insurance people who make these decisions about our health. I feel so lost and like I am letting my son down because I can’t fix this for him and I’m his mom, that’s what I’m supposed to do…I feel so defeated.” -Jean

This is just heartbreaking and infuriating to me. That this poor kid has to try a medication he shouldn’t be on based on the insurance company’s rules and not the doctor’s decreed Rx. Unfortunately many people have to suffer thru this same bullshit with any illness. 

“my last boyfriend left me right after I was diagnosed. It destroyed me…he just wasn’t mentally stable and when he found out how nasty this disease can be he dipped. Better sooner than later I guess.  But I haven’t dated since.” -Samantha

Talk about a disease that will absolutely fuck up your love life. I guess if we wanted to be positive we could call it a “blessing in disguise” to wean out the fuck heads and save you from relationships potentially doomed to fail, but this disease is HARD to deal with and I don’t fully blame anyone for running the other way. I’d run from it if I actually thought I could get away. I think these people are shitty (wink) but so is UC. 

Luckily this disease has only caused me setbacks. I refuse to let it consume my life. I married a total hottie who loves me disease and all, have a kick-ass kid who is now seven, am pregnant with kid #2, hold down three part-time jobs that I love, take my kid to karate 3 days a week, baseball 1-2 days a week, to art camp, tennis clinics, baseball games, camping, graduated college with 4 degrees, bought a house all by onesie when I was 24, co-write for Creative Collective with so many amazingly strong and encouraging women. This list will keep growing. I’ll keep growing, learning, expanding my family. This disease is something I’m living with but it is NOT who I am. It controls aspects of my day-to-day, but I refuse to let it control my life. 

This disease is really tough and anyone new to it, you’re not alone. For those in the back, YOU’RE NOT ALONE! Find a support group, surround yourself with people who give a shit, advocate for yourself because eventually you’ll tell your GI what you need and they’ll say, “you know your body better than I do, you’ve had this over a decade.” For those of you who are close to anyone with UC, try to help by being supportive. Suggest a movie night in or be sure to always reserve the campsites near the crappers. 

Thanks for reading through my shit and if you suffer from UC, I’m here for you.