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.

Pot.

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.

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