Coping with a Crohn's Diagnosis
Crohn's Disease.... Sucks. Let's get that fact out of the way. I could go on my own personal rant about my experience - but I'll save that for another post.
I will say though, that for months I was in complete denial for MONTHS. I still think back on my gastroenterologist's face when I'd do the most ridiculous mental gymnastics to work around how I DIDN'T have Crohn's.... He absolutely wanted to tell me I was gobshite. Eventually I did accept it and once I got an official diagnosis, there was no denying it. But the idea of having Crohn's was a death sentence for me. I already suffer badly from Endometriosis. and I could not cope with the idea of having a more serious - and often deadly - disease on top of that.
I'll basically preface with this. you are NOT gonna die. Well, someday you will, but it's not existential crisis o'clock just yet.
Here's tips and bits of knowledge for coping with a diagnosis of Crohn's Disease.
When it comes to Crohn's. Do not consult Dr. Google.
For Endo, I found the internet was full of really helpful information to help me understand my disease much better. For Crohn's this was not the case. On Wikipedia it says Crohn's reduces your life expectancy. This is not necessarily true. Can you die from a complication of Crohn's Disease? Well, yeah. Loads of ways! Is it common? Not really. If you become aware of your patterns and your typical symptoms, you'll become pretty good at knowing when something is off. You're gonna see a lot of conflicting information online. It's best to go to reputable websites such as Crohn's & Colitis UK or The Irish Society for Crohn's and Colitis.
Find out your own diet. Every one is different.
You are going to get a lot (and I mean A LOT) of people telling you that if you cut out dairy or meat or fizzy drinks you'll be cured. While your diet can definitely impact things, it is really, really subjective.
I'm gonna make this incredibly clear. You did not give yourself Crohn's Disease because you ate too many sweets as a kid. Crohn's is an autoimmune disease. There is no concrete scientific evidence to back up anyone telling you you did this to yourself. It's not because you ate McDonald's, it's not because you drink. You just got extremely unlucky. Sorry bud!
You might find what triggers other people's Crohn's you can eat just fine. For example, I love lasagna. It's never triggered me, even when I'm flaring. But red meat mixed with lots of cheese could put another Crohnie down. Just do you!
My IBD nurse (Hi Arthur!) gave me a few pointers on drinking responsibly with Crohn's.
If you're having a can (of anything fizzy for that matter) poor it out into a glass first. This will help the bubbles settle and be easier on your stomach
Probably just avoid Tequila and Sambuca altogether.
A hot whiskey is the evening is OK! (Thank God).
And obviously, don't drink excessively. If you're taking certain medication (like steroids) make sure you take a Nexium if you're having a drink - I don't have much evidence to back it up but for me it's prevented any gastritis or stomach issues.
Do work with your hands.
Joint pain is no joke with Crohn's. If you're typing or writing, take those few seconds to stretch your hands or use a stress ball. Try baking or clay making! Just keep your hands busy cuz the last thing you need on top of everything is MORE pain.
TALK ABOUT IT.
And be unapologetic for talking about it. Crohn's is life altering, and completely crippling at times. It is perfectly valid to talk about as much as any other illness. Confide in people around you about how you're feeling. Rant about it until you can't cry anymore with people you trust. It's hard, but it feels so much better that bottling it up.
Be weary of online forums.
This was another bit of advice my IBD nurse gave me, but I already kinda copped this from my experience with Endo. It's great to meet and talk to people who have a similar illness to you, but sometimes you end up in a whirlpool of negativity you don't need.
You're likely to find people who blame everything wrong in their life on their chronic illness. They can't maintain their relationships because of Crohn's, they do X and Y because of Crohn's... etc etc. Just be cautious of what you choose to take on board.
People will make snide comments. Try to let it go.
It's a pain in the ass. But they will. I've had strangers make rude remarks about my weight (I dropped 30lbs when my symptoms first onset). Some might accuse you of having an Eating Disorder. Or on the other hand, if you're overweight they will say you're sick because of that. They're not doctors. You do not have to take unsolicited advice from anyone.
On a side note, don't let any weird people try and sell you essential oils to cure you. That is 100% a scam. Sorry Karen.
Things Get Better.
Trust me, they will.
I could make this list go on forever, but I'll leave it at that for now. Anyone who has questions is always more than welcome to contact me through my website or social media!
Happy Crohn's and Colitis Awareness Month. It takes guts.