Dear New Crohn's Patient: What they don't tell you

Growing up, I had never really heard of Crohn’s. In my first year of university, my friend told me about her ex who had the condition. She told me all about how he was in constant pain, was in and out of the hospital. She told me about how difficult his life was and how there was little he could do, mostly because he was too tired or in too much pain.

So understandably, when a doctor first suggested the possibility that all my problems were linked to Crohn’s disease, I was thrown for a loop. I knew next to nothing, and what I did know was not good. It didn’t help that the diagnosis has basically been yelled at me at the time. I was in shock. I was afraid. I thought my life was over.

What does having Crohn’s even mean!?

What is Crohn’s? – from a medical point of view, Crohn’s is an autoimmune disorder, like allergies or arthritis. Autoimmune disorders refer to a class of illnesses that result from your immune response mistaking a part of your body for a foreign invader. The antibodies attack this part of your body resulting in swelling which in turn causes a variety of related issues. In the case of Crohn’s disease, the antibodies can attack any part of your digestive system from your mouth to your anus, however, the majority of the disease is often centered on your colon and large intestines.

What does this mean?

The obvious result of this is pain resulting from the swelling. It also causes nausea as your body struggles with passing food. It may result in blockages of the intestines, and often leads to IBS like symptoms such as frequent diarrhea and watery stools. Swelling of the intestines makes them delicate and liable to tear. Many of the symptoms of Crohn’s are related to the resulting ulcers that appear.

What no one tells you is that is also causes exhaustion and chronic fatigue, it can cause your joints, and persistent inflammation can also lead to memory and recall difficulties. No one tells you that you will get used to the sight of fresh blood in the toilet. You will become sensitive to smells, like a person experiencing morning sickness, certain smells will have you running for the bathroom.

Most people learn early that Crohn’s often leads you not to absorb digested food, for some reason however, no one thinks to mention that for a lot of patients, you also stop absorbing oral medication. In the midst of a flare, anything you take orally may not work at all. This includes of course, any pain medication you are trying to take to get rid of the pain of the flare you are experiencing.

Saying hello to Crohn’s means saying good bye to trusting doctors while also being completely dependent on them.  You are a Zebra in world where they only really know horses. Not even zebra, more of a rampaging moose that gets named a zebra by someone who has only ever seen a horse. While you are at it, say hello to endless ridiculous suggestions about things that will absolutely cure you! They won’t.

No one tells you that anything that wakes up your immune system: allergies, a cold, if you menstruate, any of it can make your symptoms worse. Whether it is actually making them worse or they just feel worse because of everything else that is going on I cannot say, but I do believe it is not unrelated.

No one tells you that, no matter how extroverted you are before the diagnosis, when you are flaring your energy for socializing wanes dramatically. All you want to do is sit at home and watch TV or Netflix, or movies, just something low energy. You break invitations, because you just can’t know in advance if you will have the energy that day.

No one tells you that you will feel guilty for being sick. You might feel like a failure. This is normal. Many of us struggle with feelings of guilt. You are not alone, and let me repeat that it is not your fault.

We live in a world that prioritizes productivity and tends to dehumanizes people with disabilities. Living with Crohn’s means crossing over to the other side from normal to not.

No one tells you these things, and because they don’t they also don’t tell you the tricks that we learn over time.


I know I know, I’m starting to sound like a broken record. But honestly, I never would have looked at the stuff if not for Crohn’s and this is the case for many people I know. One eager little smoker I know grew up Mormon, and was positively terrified of the stuff. Now her still Mormon mother encourages her to smoke thanks to the relief she gets. That’s all I will say on the subject.

If you don’t want to turn to herbal treatments, *aren’t I hilarious!?*, there are ways that you can make prescription pain killers work when a flare makes absorbing them difficult. While this method needs to be used with care, you can grind up some of your pain killers and put them under your tongue. The veiny mucous membrane allows some of the medication to seep direction into your blood stream without needing to pass through your inflamed digestive system. It is advisable to use only a portion of the full dose at a time, since this method is a bit more direct than traditional digestion.

Some medications are also available in liquid form, although for some reason doctors often fail to mention this. You can request liquid dilaudid for example, which has more chances of success than a pill.

While alternative treatments are mostly bunk, there are some otc things that can help you get through a flare. Baby wipes with some witches hazel for example, help prevent your sensitive regions from chaffing horribly from the frequent bathroom trips. Also, don’t be afraid of baby rash creams.

Anaesthetic hemorrhoid ointment is a metaphorical godsend! The anaesthetic helps the whole area calm down when the inflammation gets particularly bad. In some places you have to get a prescription for it, but sometimes you can get it directly from the pharmacist.

Heat can be a great help. Warm baths can soothe all sorts of pains and cramps. If you are particularly dry because of dehydration, you can add some Aveeno bath oil to come out well oiled. A heating pack placed on your abdomen can help a lot in this regard. Ones like these, though of course you are welcome to explore other varieties that work for you.

It can be helpful to have a little emergency kit you carry with you: a clean pair of underwear, some wet wipes and lotion, anything that might make the experience of having an attack in public easier to deal with. They do often tell you this, but it helps to mention it anyway. That, and they won’t tell you to also pack a high tolerance for humiliation, some excuses as to why you are throwing up in public (Morning sickness works pretty well), and also the knowledge that most of the time, you are actually the only one who knows even though it feels like everyone is staring.

That’s something you will develop with time. Living with a disease like this changes you. It makes you learn more about yourself than you ever knew before. Your tolerance for things that others would find unbearable will raise exponentially. You develop a strength that cannot be understood by those who haven’t been through something like this.

This strength is there regardless of whether you feel strong or not. Regardless of whether you are bearing up well or not. Regardless of whether you are working and productive, or whether you are curled up in your bed determined never to get out. Whether you bear everything with stoicism and grace, or whether you go shrieking and weeping. No matter what, you have strength, and you are allowed not to handle it sometimes. You are allowed to have bad days. You are allowed to complain, and whine, and to be tired, and to take care of yourself.

Self-care is essential, because ultimately, the less stressed you are, the more time you spent making sure you are ok, will actually make your symptoms, if not better than at least, less exhausting emotionally.

Crohn’s mean that not only do you have a bad ass, you are a Bad Ass!

Welcome to the club Crohnie.

Dear New Crohn's Patient: What they don't tell you

Hospital Limbo

It pains me (ha! Get it?) to admit that I am in the midst of a Crohn’s flare. If the increased pain and nausea weren’t a dead giveaway, the swollen ankles and wearing a sweater on a day that was 30 degrees (that’s high 80s for you Yanks) make it kind of hard to ignore.

I really am not shocked. I suspected something was up when I realized I was blowing through my faced with the difficult decision of whether I could go without my meds or whether I should risk supplementing my prescription just this once with herb bought illegally. Of course with the Colorado trip having drained us financially, I may well face that decision anyway this month. If you are willing to donate a little extra this month to our paypal, we would be extremely grateful. Or get something from my Etsy store! Yes, it is that kind of month. Please consider helping. 

For most people, the decision of whether or not to go to the hospital is a relatively easy one. You are in pain, your leg is broken, the division between “well” and “need assistance” is clear. Yes, there may be some vacillating when you are sick, but the idea is still, there is a clear sign when something is wrong.

For people with living with chronic illness, it can be hard to tell when you are just experiencing worse symptoms or when you need hospital assistance.

Continue reading “Hospital Limbo”

Hospital Limbo

Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson

Dear Mayor Jim Watson,

My name is Anna “Ania” Bula, and I am a medical marijuana patient. I use mmj to treat the symptoms of severe Crohn’s disease.

I was diagnosed in 2008, after having lost nearly 60 pounds in the space of 2 months. Crohn’s disease is an autoimmune disorder that affects the digestive system. It causes inflammation of parts of the digestive tract which results in tears and ulcers. Among its symptoms are severe and frequent pain, exhaustion, nausea and vomiting, and diarrhea. The inflammation can get so bad, that it causes blockages which can lead to bowel death that require surgery. At times it feels like my body is trying to digest itself. Imagine, being able to feel your own intestines, simply because they are so inflamed that the pain outlines them for you.

Since my diagnosis I have been hospitalized several times as a result. I’ve had countless medical procedures. The severity of my pain and frequency of my symptoms makes it difficult for me to work. On more than one occasion I have lost employment or positions at work because of interference from this disability.

I have had to miss classes, and my grades which were always very good, dropped because I was simply unable to maintain the energy required to go to class.

There is no cure for Crohn’s disease. I will have to live with this for the rest of my life and I am only 27 years old.

Continue reading “Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson”

Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson

Can I write a Novel in 48 hours?

In New Eden, the Prophet Adam works to purify humanity and bring back the blood of the first man. 

Every impurity is tattooed across your skin, to identify you to the world either as a tainted Child of Eve or as a half-human Child of Lilith. Only the Children of Adam live with human names and untattooed skin. 

Thrush is the only daughter of a Daughter of Adam and Son of Lilith. Tattooed with the stained lotus of a tainted Child of Eve, she has until the age of 17 to prove herself a true daughter of Adam and be named? 

Together with her best friend Lynx, Thrush navigates a world where no flaw is invisible, and makes you less than human. That is until her best friend is kidnapped and the only way to get her back to volunteer to be a player in the Blood Hunt. 

 Will she be able to save her friend, or will she lose her chance at being human and her life?

Can I finish writing Hunting Blackbirds in 48 hours?

I am spending this weekend in a hotel. I don’t have to cook, or clean, or really do anything other than write and I plan on devoting my time to making this novel happen. I will start writing at Midnight, and keep working until I finish or my time runs out.

The money from this fundraiser will go to helping publish the manuscript by helping create Burning Bridges Blog Network.

Can I write a Novel in 48 hours?

Depression vs Art

I’d like to consider myself a bit of a visual artist but these past ten years with depression have almost completely sapped whatever ability I had. I think I’ve made about five drawings in ten years. When I do create something I’m told I’m talented. But I just cannot seem to keep the inspiration or even the motivation going.

You hear a lot about how mental illness contributed in some way to an artist’s work; that they channeled their pain into their art. Whether that art be music, painting, writing etc, the point is they channeled it to mean something. My depression just spirals and loops back into itself and all I ever get out of it is more pain.

Which then makes me feel even shittier for not “depression-ing” right. Which I know is ridiculous, I know it’s just depression shenanigans and troll brain talking. I know it all rationally, but I still cannot shake the feeling that I’m a failure at depression. Isn’t that sad?

Lately, I’ve had a few ideas for a drawing and I can see it in my mind’s eye, but when I try to actually make it happen I draw a blank. (At least I’m punny?)

That’s what hurts the most sometimes. I know I have some talent at least. I know that I can make something beautiful but depression is always there just waiting to tell me, that no actually I can’t.

I remember having a pastel charcoals set when I was little. I used up the sketch pad rather quickly. I loved just sitting on the porch and drawing whatever came to mind, blending colors and getting my fingers covered in multi-colored dust. Sometimes I think maybe I can do that again, sit somewhere quiet, armed with a sketch pad and pencil and just draw what comes to me. But the fear is there; taunting me. Waiting for the first pencil stroke to land on the page, so the depression can start its bullying: why bother?, nobody will like it. You aren’t any good.

Why can’t I just ignore that, especially when I know that what my depression is saying isn’t true? It’s a never ending battle.

Depression vs Art

Trying to Raise a Socially Conscious Child

The sex talk is not the hardest talk I’ve had so far with my kid. That conversation has been the easiest, actually. Everything was straight forward and easily explained.

Explaining poverty, racism and sexism along with other types of oppression is way tougher. How do you explain to your child who  is five years old and falls on several axes of oppression about the oppression they will face? Oppression they are facing right now?

Recently, my kid and I were reading a book about different types of dwellings around the world. One picture showed favelas in Brazil. Another showed a house made of scrap in India. My daughter noticed these houses weren’t as nice as some of the other pictures; like the farm house in France. When I explained a bit about poverty, she asked why those people were poor.
If I start explaining poverty, I have to explain all different forms of oppression. She asked why we live in a shelter; that would lead into a conversation about domestic violence, rape and systemic oppression. This is just focusing on the USA. If I expanded the conversation to include Brazil or India, then we get into colonialism and how capitalism needs poverty in order to thrive.

Another time we were playing an online doll dress up game and I made my doll Black. She said the doll was ugly. I asked why she thought so. She couldn’t articulate why. This is why it’s so important for diversity in children’s toys and media. She’s already getting the message that Black equals ugly/bad.

I explained why what she said was hurtful. I told her, in age-appropriate terms, about racism and how racism kills. I reminded her of a conversation we had about a month before:

In her kindergarten class, she was taught about MLK Jr. I doubt they went into much detail, other than him “having a dream”. We were in a store once, and she saw a special edition magazine about the 60’s. She recognized his picture, so she flipped through the magazine and saw that picture of him lying dead in the balcony of that hotel. She asked what happened to him. I once again explained in age-appropriate terms. She seemed to get it and apologized.

At school, she’s dealing with a bully who used ableist and misogynistic slurs against her. I explained to her what those words meant. This kid is a few years older, he obviously has no idea what those words mean but he knows that they’re used to hurt women and disabled folks. He knows they have power.
The school seems to be laying the responsibility of not being bullied on my daughter. Which once again takes me back to the conversation of systemic oppression. She’s a girl, she’s a POC (person of color), she’s of low socio-economic status; the school most certainly won’t take her seriously.

This is all heartbreaking and defeating. She’s seen so much already and I cannot shield her forever. These are ongoing conversations, that will have to be added to as she gets older and better able to understand.

Even as the sex talk gets expanded it will never be as difficult as every other conversation will be. I was lied to. The sex talk is a breeze.

Trying to Raise a Socially Conscious Child

A Day in the Life of a Crohnie

I woke up earlier than I meant to because of pain. I had to use the bathroom, again.

Even though I had my Remicade relatively recently, my Crohn’s has been acting up. A month of stress followed by a bad scare where I couldn’t medicate in response meant that even though I had had my meds, I was still pretty delicate. Combine that with working hard, and my body is making itself heard that it’s unhappy.

I did what I could to clean the balcony, before collapsing in the chair.  It was not even noon yet, and already I was exhausted. If I wanted to eat, I needed to take my meds. Until then, the nausea made any thoughts of food more than unpleasant.

Taking my meds is now laced with anxiety. Thanks to my upstairs neighbour, every time I decide to take it I am worried I will get another visit from the cops. The anxiety of course just aggravates my conditions and means that it takes more meds just to make the pain go away. Forget about anything more than that.

Lunch is a box of rice with some ground beef. Something simple and relatively delicate, and still it ends up being too much for me.

The next hour is painful. I can’t take more pain medication since I need to drive Alyssa somewhere, so instead I wait, and try to distract myself with Facebook. Finally, I ask her if I can drive her early so I can get home sooner. She agrees, and I can focus on something else for a few minutes.

As the weather shifts, my joints decide to join the party. My spine plays pop-goes the weasel as I shift around my chair, trying to find a less painful position to sit in. With the pain in both my back and my intestines, it is hard to tell which hurts worse. Back home, I smoke another marijuana cigarette, but it’s not enough, so I roll another. In between I try to distract myself with Facebook, wishing I had the energy to work on a story idea I have, let alone work on the blog network I’ve been trying to get funded.

By the time I manage to make enough pain to go away, it’s almost dinner time and I have to think of what to make. I can’t handle much and I know it. The leftover Pho I have sounds like a good idea. I should add some kind of meat, but when I start looking through the freezer my already inflamed skin just can’t take the cold. I’ve been spending more time in the sun, trying to make sure that next winter my depression doesn’t get as bad as this year. I don’t have a sunburn, but like many people with autoimmune disorders, I have sun allergic skin. It doesn’t happen every time, but often going outside can mean that I get hives or that my skin simply starts to feel full of pins and needles. Ironically, if I had a lounge chair, I could lay down and expose my back to the sun. While my skin might not like the sun, the patch of psoriasis hates it more. Sometimes sunlight can help make the patch go away.

I decided that broth and noodles is probably better for me given my sensitive stomach. Turns out even that’s too much.

I am in pain again. I look at my marijuana order from this month and worry. I cannot afford to buy more even if I hadn’t bought my full prescription this month.

It’s a bad day, but not the worst I’ve had by any stretch. I’m nauseated and coughing, but I haven’t yet been throwing up. My bathroom trips are painful, but not as frequent as they could be, and my level of exhaustion doesn’t exceed the usual. I can still stay awake, though naps are tempting. I need a sweater to deal with the cold though, even though it is still warmer than it’s been the last few months. I hope that with enough medication I can cut down this flare before I end up in the hospital, but it wouldn’t be the first time I wasn’t able. I hope not though. I really don’t want to end up on prednisone again.

Taking more medicine means that my mouth is constantly dry. My stomach can’t handle juice right now, and an unfortunate association with being badly ill makes nausea and water not a good mix. I’ve been guzzling pop as a result, just trying to make my tongue feel less like resin covered sandpaper. I’m hoping I can handle some tea.

Update 1: Not ten minutes after posting this, I started throwing up. And so it goes.

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A Day in the Life of a Crohnie

They Called the Cops on Me

For the first time ever, I had the cops called on me.

Ever since I started smoking my medical marijuana, I have done my best to be a courteous neighbour. I check in with those across the hall and adjacent to me to make sure the smell doesn’t leach through, and let them know that if ever it does to please let me know. During winter, it is too cold to go outside, especially with my balcony door freezing shut.

With the weather improving dramatically this week however, I have started trying to go outside onto the balcony when I smoke.

This is the first time I have had the cops called on me.

I checked with my neighbours again, which leads me to believe that it wasn’t any of them. That leaves my upstairs neighbour. It’s not the first time I have suspected that when the wind blows just right, the smell sometimes wafts towards her window. I’ve heard it slam shut a time or two. The woman who lives there is someone I know. Someone who she has come to for advice before.

So it comes as a surprise to me that her first resort would be to call the cops, rather than talking to me or even sending me an anonymous message.

If she doesn’t know that I have a prescription, then she just tried to get me arrested.

The cops, when they arrived were pretty relaxed. They made it clear that they had no real quarrel with what I did in the privacy of my home, before I had the chance to tell them that this was prescribed medicine. Though apparently the fact that I have a prescription was noted from having spoken to officers previously.

It was relatively a low stress event. I was told to be careful, so that they wouldn’t get called out again, and was otherwise just left marvelling over the fact that my attempt to be responsible and nice by smoking outside backfired so spectacularly. I went through a variety of emotions: amusement over the irony of the situation, irritation over the completely lack of necessity of it all, and underneath it all, a vague sense of discomfort.

I didn’t know why I was uncomfortable. The cop had been nice. Ultimately, nothing really happened other than a few minutes spent at my door. I hadn’t broken any laws, and my skin colour and relative affluence made it a much less risky scenario. True, if Alyssa had been home, there would have been the added stress of potentially dealing with a cop’s bigotry. I was pretty much safe, so why did I feel so anxious.

Like a pin in your clothing that you can’t find, it scratched at me and made my irritation grow.

Then a friend messaged me, checking despite my protestations that I was fine. She told me that sometimes, people will get this feeling of anxiety or feeling unsafe because of an interaction with authority such as this.

It was only a few minutes before I realized that she was describing exactly what I felt. Someone used the police against me, and might again. They were trying to intimidate me. They had no way of knowing if their actions might get me arrested and they did it anyway. The cops might be called again, and the next one might be less friendly.

Now every time I have to take my meds, I have to wonder whether this time I will hear another knock on my door. My balcony was no longer a happy sanctuary where I could sit back and smoke a bowl while reading or drinking my tea. Now I had to worry about whether the wind was creating a wind tunnel that would get me in trouble again? I keep my door open so that I can feel the breeze while I work. Now, I have to worry about a wind change creating a vacuum.

The one place where I should be able to medicate in safety and comfort, is no longer inviolable. Every toke could mean another visit from the police. For doing something that I am legally allowed to do.

If she had only spoken to me, or even sent me an anonymous note.

They Called the Cops on Me

Bees Knees


Cartoon Bee

I am terrified of bees, and wasps, and anything I think might be a wasp. Don’t get me started on hornets. I don’t just mean that they make me nervous, when there is a yellow jacket around me my mind descends into mind-numbing, gibbering terror. If I’m lucky, I completely shut down and stay as still as I can while shaking like an incontinent Chihuahua on a priceless Persian rug.  If I’m at my breaking point however, I shriek and run as fast as I can in the opposite direction, and towards the nearest door I can hide behind.

The fear is completely irrational. There are a couple occasions where it was possible I was stung. It hurt, but it wasn’t overwhelming. It was enough that I was never sure whether or not I had been stung.

I have no idea how it started. My parents insist that it was me trying to be like my best friend, an older girl that I thought was absolutely amazing. She was afraid of bugs and so I was afraid of bugs. I don’t know if that’s true, it might be. I remember exactly the moment that I became uncomfortable around crickets, but my fear of bees just always seemed to be.

It gets in the way of my life. My fear of bees keeps me from spending time outdoors. If we go out to eat and there is a patio, I come up with excuses about why it is better to eat inside. The sun is setting and the mosquitoes will be out soon. It looks like it might rain. Or maybe it’s too hot, and I would rather eat where there is air conditioning. I can’t let people know just how much this affects my life. How I avoid going for a picnic, or reading in the park.

Most of my time outside with people, I work hard to appear calm. My eyes dart around, locating every winged creature around me. If I spot a wasp, I watch it so I know exactly when it passes by me. I tense so that I don’t jump or run. I can’t relax because if I do, I know that I can be taken by surprise and my secret will be out. My ability to modulate my response always follows the same pattern: a the start of summer, the bees are too new again for me to be able to stay calm. After a few weeks, I can function just barely. I can sit still under an umbrella and slowly talk myself out of completely breaking down. But by the end of the summer, I’ve used up all of my reserves and I just cannot handle it. I stay seated for maybe the first five, even ten minutes, but after that I have to get away. I have to put distance between myself and the object of my terror.

The tracker-jacks in the Hunger Games series are my nightmare.

It’s one of the reasons I love water. Bees cannot live under water, so when I am in a pool I can be safe. I can swim away, I can duck under. Spending time in a pool is one of the few ways I get to spend time outdoors.

It’s why I love fires, where the smoke keeps them away and anesthetizes any that might be in the area.

For years I was terrified of wearing perfume, or deodorants with floral scents, convinced that the smell would attract them to me. I used to love the feeling of grass on my bare feet, but now I am scared lest I step on a fallen bee.

I know my fear is irrational. There is no basis for my fear. I’m not allergic. I haven’t been badly stung. I’ve never been attacked by a swarm, or even lived somewhere where bees are especially dangerous.

My fear is why even though I love plants and flowers, I despair of ever having a proper garden.

I look for solutions, since a life completely indoors is not healthy. One such innovation I managed last year, was putting up (albeit badly) a screen around my balcony. Effectively keeping a barrier between me and my winged terrors. Even the fact that some wasps had built a nest by our living-room window was ok, because there was a screen between them and me.

This year, I need to find the money to do the same thing again. Maybe this way I can finally spend enough time in the sun to take me through till winter.

This is what is meant by a phobia. It’s not just being afraid of something. It is a fear that actually impacts your life is significantly negative ways. It can mean preventing healthy social interaction, or being unable to perform healthy behaviour because of your fear. Coming in contact with your fear is not just a startle and a moment of fear. It is a traumatic event. I’ve hurt myself trying to get away, because the fear provokes a survival response. In my brain, that encounter provokes the same response as being attacked.

It’s not something I can just “get over”. It’s not something I can rationalize away. I know that bees are important to the environment. I heartily support community beekeeping programs, even as the thought makes my stomach plummet to my feet.

This is why it infuriates me when people think it is funny to call something a phobia. Or worse, when people think it is funny to respond to someone sharing a fear by scaring them. Like people who post spider pictures, when someone says they are afraid of spiders.

It is not a laughing matter. My heart stops and then races. I can’t breathe. I am like a deer in the headlights. I want to curl up in a ball and cry. I shake. My crohn’s acts up later. I become so cold. It takes me a while to recover.

I am working to get better. I have already improved, and in the meantime I find ways to reintroduce myself to the outdoors. With luck, I can install a better screen this year and spend more time on my balcony. And now you know.

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Bees Knees