IBD Journal: 70 Pills to Live

70 pills to Live

70 pills. Every week, a big countdown. 10 a day. 7 days a week. That’s how many it would take to keep me alive. 70 pills to bleed at a minimum. 70 pills so I don’t live curled up in abdominal pain. 70 pills so it doesn’t feel like my guts are going to spill out onto the bathroom floor. For me, that’s what it would take.

When I was diagnosed with Crohn’s Disease, this is the life I was given. It is a life many with autoimmune diseases know very well. It is a struggle, and an immense suffering that manifests itself in many more ways than anyone on the outside could even begin to imagine. For many of us, the story is the same. Our medical treatments are designed to keep us alive, but they don’t make us feel like living. That is a fight that we have to carry on ourselves. My 70 pills did a semi-acceptable job of keeping my body going, but the mental and emotional struggles of this life have been immense. Out of some sort of misguided pride, I often find difficulty admitting this aloud and do not present it as a problem to those in my life, but it is a struggle that I suffer from today as much as I ever have. The teenage depression and anger I felt at diagnosis have only become bad habits and deep-seeded psychological torment in my adulthood. I often find myself calm on the outside but constantly screaming internally. I feel such fervent disdain for the circumstances of my life. Even as I write for this website and conduct research, all these things to try and live by example and fight for a better world for those with Crohn’s, I do not feel like a person to be looked up to. My pain has turned me very bitter, and difficult to love. The emotional toll has left me drained, and otherwise unfeeling to many things others would be more sensitive to. It seeps into my personal relationships; connections and bonds I now fail to maintain. In life and for my website, I strive to demonstrate a warm and driven passion for my life and fight with Crohn’s Disease to try and help inspire others. But in reality, I like anybody else in the same situation, am not in control of this disease and not in control of the suffering it brings me. Most of the content I try to write is for uplifting this autoimmunity community and furthering the good fight. This is not one of those entries. This is a confession, that things are not alright, and that life is god damned hard.

My 70 pills were a chain and ball. All treatments are. That’s how I felt and I’ve carried that with me for a very long time. Ultimately, I was limited to what I could do with that supply. Constant thoughts of can I do this or go there and for how long with what drugs I have available. Will they be available? Will they do there job? You feel defeated, unable to navigate  the world with the freedom that others have and don’t nearly take advantage of enough. I, for 8 years, have continuously felt limited in ways that are both excruciating and horridly embarrassing. I can barely bring myself to go camping out in the wilderness. I have to worry about how I would manage my need to violently evacuate my inflamed bowels outside in the woods. Believe me it is not easy to be in the wilderness with an active, severe inflammatory bowel disease. A fully functioning restroom is essential and almost always has to be within my reach. I frequently dream of hiking long portions of the Appalachian Trail or the Pacific Coast Trail, and as it stands now, I don’t see myself being able to do those things. And it destroys me. The burning of your soul that occurs when you see these things you never knew you wanted and now it is as if you cannot attain them, is an unbearable inferno.

Sometimes, I just feel useless in life. I suppose everyone feels that way at one point or another. Recently it has been more often than not, though. In these times I often think of the song Helplessness Blues by Fleet Foxes, one of my favorite bands.

“What good is it to sing helplessness blues?
Why should I wait for anyone else?”

It suggests that it is useless to complain about the lack of control and nature of one’s life, and that you have to take it into your own hands. I try as hard as I can to do this. But as I type this I am in one of those time where I can’t help but feel deep inside me that there is too much to overcome. For many years, I have suffered chronic depression. I will stop everything, let the world go by, and just stay in my bed. Hide from the world. Unmotivated, and uncaring. To achieve any of my goals in spite of this has been the greatest tribulation of my life. There are days where I am a festering corpse. I lay there, intestines screaming, gut in hand, teeth clinched, incapable of normal human motor function. This position has become too defining of my life. Too familiar.

I have loathed myself. For a disease I can’t control. For depression I can’t overcome. For not seeking out better treatment. For not giving myself the chance to just “focus on myself and my health”. I wallow like a miserable fool. I am easily upset and have easily avoidable clashes with those that I love. When something awful happens, and It appears to me to be a result of my Crohn’s, I think about dying. I fear colon cancer will handle that for me someday before I am ready. Suicide has been far too casual a passing thought for me these past years. When I am really suffering, and life is not how I want it to be, I think how would it not be better to just die? I know that it is stupid and wrong. I know it is never the answer. But in the midst of it all, you just want it. I convince myself I don’t do it because I am strong, but really I think I am too cowardly to try.

Recently I applied for a scholarship to help fund my Master’s. It was $15,000 to 45 people with different autoimmune diseases. I didn’t think there were 45 people who would apply that were better qualified than me. Everything I have worked for. The absolute dedication I put forward these past years. I not only lived with my disease, but I have lived for fighting it. Research, advocacy, pushing a career path based around the fight against Crohn’s. And I didn’t get it. It was a very low point for me. It still is. It made me feel like my struggle, and all the fighting I have done was invalidated. Have I really achieved anything? Will I ever be able to overcome this life? The irony that I was suffering an intense disease flare up when this happened was a certain level of irony that felt unbearably tragic and painful. It was hard. And it is going to hurt for a long time. And my bowels are going to keep hurting for a lot longer. I continue to dream of a day where it gets easier.

I do not know what I really wanted to say with this entry. Obviously, life is hard. And Crohn’s is a B-I-T-C-H. I guess, I just really needed to vent. To not where my fighting the good fight hat for one night. That sometimes it is just too painful to act happy despite the disease. To let people know that I do have some problems, even though I’ll probably say I am fine when you ask. And that I am never in the business of asking for pity, but on this one occasion that even if I say that I am fine, that I will always appreciate it if you give and extra little encouragement when you talk to me. I think it could go a long way for a lot of people who don’t feel like admitting their problems, and they don’t have to have a disease. It just goes for everyone. We all have struggles.

If you wanted to know, I do not currently take those 70 pills anymore. At least not all of them. My treatment path has been a long and winding road, and I am traveling it looking for new ways at the moment. Despite all my sadness and frustration, I am hopeful that path will lead me to the life I want very soon. Hope is the best tool you have, even when they offer you 70 pills to live.

 

I am going to get some sleep now, thank you all for reading my vent, and I promise I’ll be alright. And to all of you with Crohn’s, or another condition, or anyone just suffering: Keep going. Find your reasons to fight. Know that the sadness will come and it is a part of who we are. And know that I and many other people care about you, and that you are worth something.

Much Love,

-CTH

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.