purple awareness ribbon with wings that says 'warrior'

What to Keep in Mind if You're the Friend of a Crohn's Warrior

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To the friend of a Crohn’s Warrior:

Being diagnosed with Crohn’s disease is a life-changer. One that, if not handled properly, can be fatal. Many do not understand the effects of the disease. Some say and think, “Oh, it’s just a pooping problem.” But dear reader, it is not. And others will say, “At least it’s not cancer.” Correct. But it is an incurable disease that progressively worsens and has severe and life-threatening complications. This disease makes one find out who their real friends are. It makes friend groups go from 20+ to not more than five. I, dear reader, am a Crohn’s Warrior. All of this you are reading is true.

 

Being called a “Crohn’s Warrior” is a proud statement; however, it also comes with its own problems. Being a Crohn’s Warrior means you have sat through incomprehensible amounts of pain. Exploded either on or near a toilet (sometimes more than once). Bleeding by the ounce into the toilet. Constant fear of when the next flare will hit. Anxiety from not knowing where the nearest restroom is. And being around people who cannot simply understand without actually having firsthand experience. But being called a Crohn’s Warrior means you are badass. You are able to sit through a full 15 out of 10 pain scale straight-faced. Being in excruciating pain and being able to hide it. Being able to fake being normal. Even though we all (us Warriors) know we are the opposite of normal.

Enough with the meaning behind Crohn’s Warrior. Dear reader, let me tell you what it is like to have Crohn’s.

The problem with Crohn’s is that it is an autoimmune disorder. Meaning that the immune system that is supposed to keep you healthy is literally trying to kill your digestive system. An additional problem with Crohn’s is the disease is invisible. You have passed people in public that have had Crohn’s. You just don’t know it. The only way you know is if the Warrior tells you. The only visible signs to you might be weight loss, loss of skin color, fatigue and the general ill look. The visible signs for the Warrior in addition to the previous listed might be foul smelling and/or bloody stools, diarrhea, joint and eye pain, severe stomach cramping and pain, using the restroom too many times to count. But these aren’t what every single Warrior has. It varies by severity. The Warrior writing to you has Crohn’s from his mouth to his anus. That’s as involved as it gets.

Dear reader, if you think going through that is bad, try not knowing what is wrong for months (I went six months), and having countless tests done all coming back negative. You give up. But that one final procedure figures it out. Months later, a colonoscopy. But even after you are diagnosed, you’re not out of the woods yet. You still need countless tests and medication. That’s if the medication works. You go on a steroid, and you get better. But Imuran that’s supposed to take over doesn’t work. You get worse. Maybe hospitalized. Your doctor wants Remicade. You go on the $18,000 treatment. An IV in your arm every few months and something finally works. It’s about time because the pain medications aren’t working and all you feel is straight pain and diarrhea.

Since you are nearly symptom-free you think you are out of the woods. But you’re not. Friends leave and you get lonely. The ones you do keep rarely have time for you.

The one symptom nobody talks about. Not even many Warriors. Depression. Crohn’s makes you realize who your friends are. And even those “friends” don’t always make time for you. Dear reader, when I got to this point I relied on my dog. The one “person” who I knew wouldn’t leave.

Reader, if you haven’t stepped into your Warrior’s shoes, please do so now.

Imagine having a disease that has complications that can kill you. That’s right. Death. Complications from Crohn’s can kill you. If that doesn’t, then the treatment could. Remicade is an immunosuppressant. While on Remicade you are at a very high risk for getting hospitalized and/or cancer. The simple chest cold to the normal person is pneumonia and fighting for my life in the hospital for me. I have to avoid sick people; it is my new job that I’m not payed to do. But that’s nothing compared to cancer. Colorectal cancer, skin cancer, lymphoma… Now, dear reader, imagine having that in the back of your mind every second of every day. Not knowing if today is your last.

Now that you have seen their perspective, think to yourself, “Would I need support from my friends?” The answer is likely yes. Once a Warrior gets lonely, they may be afraid to reach out to people, for they feel they are a hassle. But in reality they are calling for help.

So do the following for your Warrior:

Check on them, whether in person or over the phone (because they might be crying in the corner like I was). Plan a get-together with them. If they aren’t up to the weather, go to their house and help them feel better. And most of all, don’t let them get lonely. Having to fight your own body is bad enough; don’t let them fight alone. Also try to understand them. Research Crohn’s, ask them questions, ask them what you can do for them. But understanding is the biggest part. Understand they are in pain, anxious and can’t hold their bowels.

Now reader, I can’t tell you everything. Ask your Warrior. Tell them you are there for them. So go find them and hug them (but not too tight) and tell them “I love you.” It will put a smile on their face.

Sincerely,

A Crohn’s Warrior

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How I Experienced Anger in a New Way When Diagnosed With Crohn's

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Since being diagnosed, there is one emotion I have experienced that has surprised me the most out of all the emotions on this roller coaster ride. That emotion is anger.

I have never been an angry person. I’m usually always pretty positive and happy. Even when I’m having a bad day, my first inclination is towards sadness, not anger. It really takes a lot for me to get to the point where I am angry. I very much consider myself an introvert, so I tend to bottle things up and then I need to let it out every so often. Blow off some steam. Not gonna lie to you – that is where curse words can be therapeutic! A lot of you may not understand that, and that’s OK. But it has always been quite a therapeutic tool for me. And when you are in a flare, you gotta curse at something. It’s just how it is.

One thing I have always been hard on myself. I hold myself to unreasonably high standards. I’m a perfectionist in certain aspects of my life. I always tend to beat myself up first before assuming anyone else is to blame. Needless to say, when I was diagnosed back in 2015 and I started experiencing this very real anger inside myself… I didn’t know what to do. It was very new to me – and it felt unhealthy. I was worried about what was going on with me. I was ashamed that I couldn’t put myself above it or let go of it easily. I expected better of myself. I did not like it and that made the anger even worse. Anger is not something I happily invite into my life, but apparently it was something I needed to go through at the time.

What do I mean when I say “anger?” I mean I was angry at myself and blaming myself for everything that was wrong in my life.

Why didn’t I do things differently? How could I have stopped this from happening? Did I make bad choices and this is karma biting me in the butt? Do I deserve this?? I forgot to take my pills! I can’t do anything right! Why do I suck at life??

I was just angry that I had to deal with this disease in the first place. I didn’t want it.

It didn’t stop there. I was angry at the outside world too. Here I thought I was dying and no one seemed to really notice or even care. How dare the earth keep spinning.

The world stops for no one and everyones lives kept going forward, while it felt like mine had come to a halt. People were having babies, getting married, buying houses, getting new jobs. The list goes on, while I felt stuck in a medical trap. How was I supposed to move forward ever again? I would never have a “normal” life again. It didn’t seem fair that everyone else got to just go about their daily lives like normal, like nothing even happened. I felt like all the people around me were taking the simple things in life for granted. They are lucky and they don’t realize how blessed they are to be healthy. I was angry at the world.

Sometimes the emotions would literally surge through me and I would have to physically let it out. I’d want to punch a pillow or just throw something across the room. However, I would usually just tighten my muscles, mainly the legs and feet. Sometimes I’d ball up my fists really tight too.I would tense them up as hard as I could and then release the tension. Usually followed by teary eyes and a very audible “RRRRrrrrrrrr” sound out of frustration.

The writer showing her feet tensed up.

Loss of control at its finest.

One night I’d just had enough. A ton of little things had been going wrong all day. I was at my breaking point and then I received a text message from family. They were very blatantly giving me a guilt trip, because I wasn’t doing what they wanted me to do. That was the final straw. I actually smashed a small nightstand to pieces in the basement.

I was completely ashamed of my behavior, but I felt better getting that bad energy out of me. Afterward, I just curled up in a ball in the corner and cried. My husband just quietly came downstairs to the basement to see if I was OK, and then grabbed a broom and dustpan. He cleaned up the mess. Once he saw I had calmed down he said, “Ya know, if you didn’t like the table you could have just said so.” Of course I laughed with tears and mascara running down my face as we hugged it out.

Looking back now, I know it was just a part of the process. I was grieving. My entire life had just changed and I didn’t have one bit of say in the matter. Old Jana’s life was gone. This new Jana was being re-born and she had to figure out what was going on. What was this going to mean? How exactly was my life changing? And that is all something that just has to be figured out as you go. Especially since this disease effects everyone differently. But I can say with certainty that I never in a million years thought that I’d see myself go through anger like that. It’s amazing what this disease will bring out in us. Just know that you are human, and it’s only normal to have an emotional reaction to a big life change like a Crohn’s disease diagnosis.

I sought professional help when I felt things got too hard emotionally. I was in therapy to work through a lot of the feelings like this that came up during my diagnosis. If you experience anything similar to what I have mentioned in this blog post, I strongly recommend seeing a medical professional and/or mental health professional. You don’t have to do this alone, and you shouldn’t. You deserve a better quality of life.

What is the most surprising emotion that you have experienced during your diagnosis?

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When a Doctor Dismissed My Crohn's Diagnosis Because I 'Looked Nervous'

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I went from the best care…to being discounted.

I finally got insurance after my college graduation and I think my body decided for itself “now you shall discover what has always been wrong.” I have suffered from “stomach issues” (digestive problems such as constipation, diarrhea, nausea, etc.) my entire life. Thankfully, I found a wonderful gastrointestinal specialist who listened to me. He prescribed tests… Endoscopy, colonoscopy, barium x-rays, CT-scan (which I found out the hard way I was allergic to the contrast), sonograms…to no avail. He could not figure out what was wrong. He suggested a small bowel enteroclysis.

 

Dr. M. prepped me by saying it’s not the “nicest” of exams but he thinks it may lead to answers. He was right, on both accounts. The exam was awful. The scope hurt. It burned my nose…it was painful. Due to my digestive problems, the barium did not fully digest. To assist the barium’s movement, the doctor, the assistants and nurses shifted the table, scope in place, positioning me upright. I felt like Frankenstein. And rather than the estimated two to three hours given to me pre-exam, the enteroclysis in all, took eight hours.

It was worth it! Dr. M. discovered Crohn’s in my ileum. Finally I had an answer. I had a chronic autoimmune disease with a name. And I finally had treatment options. Dr. M. listened to me, had great bedside manner and helped me – the definition of a great doctor. I stayed with him for years.

Unfortunately, the time came when Dr. M. decided to give up private practice and go back to hospital work.  This meant I had to find a new GI doctor. And at this same time, my insurance changed and I was right in the middle of a Crohn’s flare and needed a GI specialist, ASAP. A nightmare for a person with Crohn’s disease. I found out soon enough it was just the beginning of the awful dream.

My PC recommended a new GI within the practice, Dr. G. This new gastroenterologist was perfect…on paper. Problem was from the start he did not believe me. The moment he set eyes on me he pre-determined everything. Even with my records, he did not believe me. Dr. G. said I was so visibly nervous, I must have a delicate system. He diagnosed, without examining me, irritable bowel syndrome (IBS) as opposed to inflammatory bowel disease (IBD).

I was terrified by this easy dismissal of my pain, which in turn, made me more nervous. Dr. G. even dismissed the enteroclysis test results from Dr. M., my former doctor, because, he said, “That exam is archaic.” Dr. G. scheduled a capsule endoscopy so he could examine my ileum.

For the results, I brought my husband into the office with me. I felt the doctor treated me differently with my husband present. Never in my life had I been made to feel so defenseless with a doctor. And then things changed. When the outcome of the capsule endoscopy backed the original diagnosis, Dr. G. apologized to me. I was actually crying with relief. But I also felt empowered again.

I took my newly re-diagnosed self and found a newly competent on all levels doctor… Dr. K.

I wish I had been healthy enough to put Dr. G in his incredibly insensitive place but fact was I needed him. At one point, when he said to me, “Are
you always this nervous?” I said to him, very pointedly… “You know, I had a baby by C-section and this pain from the Crohn’s is much worse than that.” Dr. G. had no answer. He had no reference. I wonder if in his mind he thought childbirth was archaic too. It is one of the worst feelings when the person who is supposed to help you makes you feel worse.

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When a Nurse at the Infusion Center Asked Someone Why I'm 'So Skinny'

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Words hurt. They cut deeper than we often give them credit.

I have had a very rough year. It started with a C. Diff infection that we didn’t discover until February. My health went downhill fast. I was then hospitalized. They found more problems. Ulcers. Bleeding. All of this because of my Crohn’s disease.

 

And all the while I would go to the cancer center to get my infusion. That’s when the words hurt.

She was the registration tech behind the counter with false smiles and polite tone. She asked someone I know, “Why is she so skinny?”

I wish I didn’t know there are people who wish for those comments. Yes, over the six months plus that this tech has seen my face, I’ve lost weight. A scary amount of weight. But in that moment I felt reduced to nothing more than a number. My worth downgraded to a number on a scale.

I know I’m too skinny. I’ve faced the reality. But in that moment I decided to fight for others and myself who felt judged and confined by society’s idea of weight. That it’s acceptable to make unwanted comments.

I wanted to remember I can get better. That all bodies are beautiful. And healing take place when there is support and positivity.

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My Fighting Words for Crohn's Disease

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Once I received the news of my diagnosis, my life view began to change. The disease was turning my life into something I didn’t want to live and me into someone I didn’t want to be. I had to call off work many times due to sickness. I was missing a lot of family gatherings and social outings with friends. I spent a lot of time at home just trying to deal with all the symptoms and side effects that each new day would bring.

I was experiencing anxiety about just leaving the house for fear I would need a bathroom and not be able to make it to one. But what bothers me the most was that I couldn’t keep my commitments or do the things I enjoyed doing. I’m a very independent, self-sufficient person to begin with and I value sticking to my word. But then enters Crohn’s, ready to teach me a life lesson –  I’m not in control.

Crohn’s was making me focus my attention on all things medical, leaving little room for anything else. That can get really depressing, really fast.

I remember looking into the bathroom mirror one day at work and I didn’t recognize who was looking back at me. I didn’t recognize myself at all, in fact, I was sure I was seeing someone else. My color was gone, cheeks shrunken in, and deep dark circles under my eyes. I looked like death. It felt like I was dying before my very own eyes and there was nothing I could do but watch. Almost an “out of body” experience. It was horrifying!

Truthfully, all I could think was, “This isn’t what I asked for! This isn’t what I wanted my life to be like!” Even when I was in the hospital, both times with the most excruciating stomach pain ever, I remember saying out loud, “I don’t want it! Make it go away!” Looking back, I laugh. As if for some reason, saying the words, “I don’t want it!” really would make a difference. Psshh! Like the inflammation in my body cares what I want!? Silly Jana! But, I realize now, those are fighting words. As long as I am saying, “I don’t want it!” I know there is still fight in me and I intend on giving this disease a run for its money. That’s all it takes –  that one little ounce of fight in you.

Woman looking down seriously.

So, I began spending all of my free time researching Crohn’s disease so I could understand as much as possible about what was happening to my body, and in turn, my mind. I wanted to learn everything I could in hopes of having a better quality of life. I used the Crohn’s and Colitis Foundation website as my go-to resource for everything as my doctor suggested. I requested all their materials on treatments, diet, etc. and I joined their online support group to hear from others about their experiences.

I saw something I didn’t want to see in the mirror that day and it was terrifying. But it took that scare and it took all that pain I’ve been through to get me where I am now. It’s those moments that motivated me to seek knowledge about my disease and support. It also motivated me to be a more active participant in my own healthcare. I would call the nurse when I was experiencing symptoms or side effects and we would address the issue head on. I began working with my team of doctors, keeping everyone in the loop about my condition. It’s the best thing I could have done for my health, and for my peace of mind too.

This disease may take us through a really rocky ride – depths of depression, breaking points of pain, and it might even make you face your fears. I truly believe that it’s only during those lows that we find our strength time and time again. So, next time you feel those familiar feelings of sadness and disappointment that come with a flare, say to yourself, “I don’t want it!” You might laugh, which is good – but you might also find your fight… And that is something I wish for all of us. To keep fighting and pushing for that better quality of life that we all deserve.

Follow this journey on The Jana OWLF Blog.

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What I Really Need You to Understand About Life With Crohn's

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Think about the last time you were really sick. When you had a fever or nausea and couldn’t even pull yourself out of bed because you were so weak.

Now think about a time in your life when you were in pain – maybe a sports injury, a really bad headache, or a recovery from surgery.

What if you experienced both that illness and pain at the same time? You would probably take time off work and stay in bed, or at least modify your life for a few days while you recovered, right?

Think of the last hard day you had. Maybe you were reprimanded at work or your kids were particularly difficult or someone close to you betrayed you. Now imagine going through that day all over again… while also sick and in pain. Really think about it.

Imagine that you feel that kind of illness and pain most days, but instead of staying in bed, you have no choice but to go to work, to school, to church, and to family gatherings. And you do this not just for a week or two, but day in and day out for months, and maybe years.

On top of it all, you find that if you talk too much about not feeling well, you’re labelled a complainer. But if you repeatedly back out of plans at the last minute and don’t tell people how sick you are, they assume you’re just a flake and undependable. You feel anxious about how people are perceiving you and this anxiety, mixed with the energy, demands of being in pain and sick all the time, makes you extra sensitive (and if you’re like me, you’re a sensitive person to begin with). You don’t have the energy to filter your thoughts. Sometimes when your friend complains about his long work hours, you just want to scream, “At least you’re healthy!” And sometimes that resentment comes out in half-joking sarcastic comments… You feel bad because his problems matter too. But you also feel kinda justified. After all, you have all of life’s “regular” problems, but you’re sick on top of it.

You feel like people are judging you – for not doing enough, for doing too much, for not doing things the way they would, for sharing too much, for not being real enough, for all the things you do on your good days. And for every text or phone call you don’t answer because your arms are too heavy to pick up the phone on your bad days. Unsolicited advice about diets and procedures abounds. You somehow manage not to snap at people even though it feels like they are blaming you for being sick. If only you did this or that, you would be better. Why aren’t you trying harder to get better?!

You spend a day curled up in a ball on the bathroom floor and someone is upset because you didn’t show up at the school picnic. You take some painkillers and force yourself to go to church on Sunday and someone is upset because you didn’t mingle enough after the service. You feel halfway decent one day so you put on some makeup and go out. You laugh and talk and look pretty normal. It makes everyone wonder if you’re really as sick as you say you are. If you push yourself through the pain to do the things that are really important to you (like take your kids on a family vacation), people expect you to push yourself through the things they think are important too. Things that may or may not be worth the pain to you. Sometimes it feels like you can’t win.

Imagine that one night, you’re up all night with what I like to call “pain-somnia.” You finally give in and take your pain medication around 5 a.m. and fall into a drugged sleep. The next day, you are really groggy and exhausted. On top of it, you’re still in pain, but you have a million errands to run. You feel a bit guilty for sleeping through the morning routine with the kids, but you’re eternally grateful that your husband is so kind and capable. You literally crawl from the bed to the bathroom, take a hot bath, throw on some sweat pants and head out. Every. single. step. you take sends a shooting pain through your entire body, but you manage to get through most of your errands, which include grocery shopping, buying a birthday card for your mother-in-law, and picking up food for the guinea pigs.

You bump into a mom from the kids’ school and she asks if you’d be willing to volunteer in class next week. You want to say yes, but you know you can’t commit to anything. You learned long ago that class trips to the museum and diarrhea do not mix. You question whether you need to explain, but in the end you just say you’re too busy. You can tell she’s not impressed with that, but you’re pretty accustomed to being misunderstood at this point. Her judgment hurts, but you’ve got bigger fish to fry.

Just as you are on the way out of the pet store, it hits. Your stomach is churning. You have to go to the bathroom. Right. Now. You make a beeline for the restroom (of course, you made a note of its location immediately upon entering the store) and get sick. It hurts so much that for 10 or 15 minutes afterwards, you can’t stand up. You just sit there on the edge of the toilet with tears streaming down your face, waiting for the pain to subside enough to walk. An employee comes in and asks if you’re alright and you crack some joke as though the whole thing is just hilarious. She can’t see your tears through the closed stall door.

When you finally get home, you just want to lay down, but your son needs your help to fix his broken helicopter (you promised!) and your daughter is upset about something that happened at school and needs to talk. Dinner needs to be made and the house is a mess from everyday life. You pop a couple more pills and hope that they will help you make it to the end of the day. You snap at the kids more than they deserve. You feel guilty, but promise that you’ll make up for it on your next “good” day. Hours later, you find some relief by soaking your sore body in a hot sitz bath and crawl into bed around 9 p.m. You feel guilty because you realize that your husband took the kids to school in the morning and put them to bed for the third time this week.

Your phone beeps. Jennifer wants to know why you weren’t in class tonight.

It beeps again. Your mom. She misses you and wants to know if she can call tomorrow. That’s sweet. You’ll call her from the car on your way to your doctor’s appointment downtown. You try not to feel anxious about being stuck in the car on the highway for an hour with nowhere to poop if it hits. You make a mental note to make sure you’ve got some toilet paper in your purse in case you have a side-of-the-road emergency.

You close your eyes. The pain is back. You can’t afford to be groggy when you drive tomorrow so you try to sleep without medication. It’s not working. You think some distraction might work so you pull out your laptop and open up Netflix. Right in the middle of an episode of Shameless, your son comes into your room for his 27th hug of the night and, in a sweet, sad, little voice points out that you said you were sick and needed to sleep, but you’re just watching TV. There’s the guilt again. You try to explain, but this 11 year old doesn’t really do the whole empathy thing very well. Eventually, you get frustrated and make him go to bed. You feel like a total failure.

Imagine this is your life. Not just once in a while, but every week. All. the. time.

I’m at a place in my life and in my illness now where I really need the people in my life to understand how sick I am. For the sake of our relationship, I need you to understand that I cannot keep up with the demands of life the way a healthy person can. I have to make choices that “regular” people don’t have to make. If I go to that pool party or family function, I will spend the entire next day recovering, which means I’ll have to give up something else. I can’t do it all. If you place the same expectations on me that you place on a healthy person, you will be disappointed. And I’m afraid you will come to resent me.

So friends, classmates, family… I’m not asking for practical help (not today anyway). I’m not asking you to bring us meals, watch our kids or hire a house cleaner (although I won’t say no to any of that if you offer!). What I really need from you at this point is your understanding and grace. I need you to lower your expectations. I have kids and a job and I know it’s hard to understand because of everything I do and because I look “normal” on the outside, but the truth is, I am not like everyone else. I am sick. Please, please… go easy on me. And I’ll try to go easy on me too.

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