So I know I created this blog to talk about food from other countries, but because of the challenges I go through because of my “condition” I feel like readers (whoever happens to stumble by and my loving friends) have the right to either hear about it, from the gritty parts to the hope-filled ones, or they can just pass it by and wait for the next food-filled, recipe-crazed blog. But maybe, just maybe, someone who is terrified by their diagnosis or knows someone who is will read this and know that they will get through it and eventually it really will “be ok”.
Let’s start with my story and move on to the things I’ve learned from other people and from trial and error, shall we? That’s what blogs are built around, I suppose.
But first, please go to Google or your search engine of choice and type in “crohn’s” and click to the image results. Do I have your attention now? Are you grossed out yet? Yeah, me too.
My story was one of abrupt awareness… sort of. I had a friend while I was a teenager, actually we are still very good friends, who had this mysterious thing called “crohn’s”. I didn’t have the internet back then and there was no visible physical clue as to what this thing was, so I just assumed that he’d tell me if he needed something or someone. That was pretty much my understanding of it all the way up until I was diagnosed with it myself. And then, all of a sudden, I wish I had known; I wish I had been kinder and more understanding of the things he couldn’t say. Well, here I am to say out loud all of the gritty things that people with crohn’s don’t say to you. Watch out now – here comes some truth that normally remains in the bathroom…
I got sick one day, in one of those weird ways that I can’t explain. I just knew, really knew, that something was really wrong with me. I didn’t have a temperature, or a cough, or searing pain, or any other symptoms that we are taught means: Go to the Doctor Right Now. But I did. Go to the doctor that is. And I explained that there was this pain, sometimes, in my side. She thought it might be appendicitis. It wasn’t. She didn’t know what to do with me at that point other than to send me to a specialist. Fortunately, because the people that are in the medical field really do care about other people, she got me in to see him THAT DAY. On a Friday afternoon. Right before Valentine’s Day, which happened to be right before a 3-day weekend. I know, right? Some sort of miracle, really. This specialist talked to me and got worried, but not really worried. Because it could either be: A) something not really terrible that we would be able to figure out fairly quickly, or B) something really terrible that needed to be dealt with ASAP. So I went into the hospital for some tests just to see if they could figure out how bad things were. Turns out, they weren’t really terrible, but I probably had meckel’s diverticulitis, which meant I had a pocket (or pockets) of built up poop or infection in my intestine (or at least that’s how it was explained to me). They let me go home, with the strict instructions that if ANYTHING, anything at all changed – less pain, more pain, moving pain, etc. that meant that I had to check myself into the hospital right away. In as few minutes as possible.
So I went home and spent some quality lounging time on my best friends’ couch (being next door neighbors made that really easy). And the pain wasn’t more or less, it just was. Then, as I was waking up in the morning, I decided to eat breakfast and the pain went from “well, that’s annoying” to “holy sh*t, someone call for help, I’m going to die”. My parents got called, I went to the hospital, and then pumped me full of drugs to wait out an open time slot with a surgeon. All this time they believed that I had diverticulitis. The surgery came and went (quite painfully, I might add) and late that same night the surgeon came to visit me. He said (to the best of my memory, mind you, I was very full of mind-numbing drugs) something like, “I don’t know what got you to the point where you knew you needed help, but I’m glad that you came here. We took out two huge blockages in your intestines and if we hadn’t done that soon they might have ruptured.” I know, from what little medical knowledge I have, that poop floating around freely in your body is bad, very, very bad.
Flash forward through the healing process from the surgery (thank you again and again to my parents and my friends that got me through all of that mess) to the hard part – understanding the diagnosis: crohn’s. I went through every, yes, every drug that they could give me. Some of them pills (so many pills that I had to buy a bigger purse to take them with me so I could have enough at the right times of day), some of them shots (sticking goopy, honey-like liquid into your stomach through a needle the size of a pen is LAME), and some of them infusions (sitting in a hospital for 2.5 hours is relaxing and nap-inducing, however, leaving looking like a junkie because I have small veins isn’t really that much fun).
The pills: Were just enough oomph to make me think they were working, when they weren’t really, unless I was taking a million of them 8 times a day. (Yes, I exaggerate, but not by much…) That is except for steroids, which I will save as a topic all by itself.
The shots: Were actually really terrible because it turned out I was allergic to them. Not pretty. I do know a few people who manage really well on these, but I just couldn’t handle the rope-welt-across-my-skin type reaction that my body had.
The infusions: Were wonderful, easy, and I wasn’t allergic. I was, however, really allergic to the price it cost to get them. No insurance? $18,000 a bag. (Infusion every other month, making 6 bags a year makes you want to cry, right? Yeah, me too.) With insurance? $2,000 deductible up front and then the rest of the bags are free. I just don’t have that kind of extra money to throw away at this point in my life, so it turned out to be a huge headache/gut-ache and I don’t take them anymore.
The steroids: Are scary because of the damage they can do to you if you use them too long, but they are a great jump-start to get your body going again. For those people who are figuring out the meds or trying to go without, don’t be afraid to ask for a taper of steroids. They can keep you out of the hospital and maybe even away from surgery.
What am I left with? Diet. All throughout this mess I was fighting the “how to make my body not hate me” fight with diet. What did I learn from talking to a lot of people and reading as much as I could find on the internet? That everyone’s restrictions are different, everyone’s reactions (also known as flares) can be more or less severe, depending on how bad their reaction is. The things that matter the most seem to be sleep, water intake, exercise, and keeping a food log. That seems like pretty basic stuff for the majority of humans, right? Nope, you all take for granted how you can stay up partying all night, eat late-night happy hour greasy food, go to bed still drunk, and wake up with just a hangover. I’d take a hangover over a full blown flare any day.
Diet truths: The common basic crohn’s food truths that I have found are: Don’t eat red meat and eat very little dairy. Be cautious of uncooked veggies like cabbage and celery, and even cooked ones like beans and corn. Some will tell you to not eat leafy greens, some will tell you to not eat meat at all. I say keep your food log, figure out what gives you heartburn or painful pooping experiences and stay away from them. That’s really the only truth you’ll ever find or need.
Flare truths: Here’s the gritty part. People (sometimes) want to know what it’s like. They want to understand more about it because they aren’t thoughtless teenagers like I was and they want to be understanding humans about something that’s hard to understand. Whew, that’s a whole lot of “understanding” – and really, that’s what it takes. Flares can be flashes of pain that leave you breathless wherever you are standing, cold sweat broken out across your whole body. Flares can be the need to poop RIGHT NOW without even a chance to figure out where the closest bathroom is. (I haven’t pooped myself yet, but it certainly felt that way a couple of times.) Sometimes the constipation is so bad that you wake up at 3 a.m. and sit on the toilet for HOURS, probably sleeping while you’re sitting there but never admitting it, praying for the poop to come out. Sometimes the diarrhea is so bad that your butt burns for days afterwards. Sometimes your stomach is so unhappy the only thing you can drink is broth and water. Sometimes you feel like you can eat the world (quite often paying for your folly later).
That said, I come back to the idea of being an understanding person for people who have crohn’s. I would tell you to be patient if they have to go to the bathroom a couple of times during trips. Let them go to the bathroom first if you see panic in their eyes. Be willing to talk to them about poop and the way they feel without making them feel uncomfortable. (I got really lucky because most of my friends think poop is a hilarious topic, but I know not everyone is that lucky.) Ask them what they can’t eat and don’t judge them for the weird list they might give you. Tell them to keep drinking water and keep exercising. Understand that for some people it will make them really skinny because they aren’t processing their nutrients well and for other people it will make it even harder to lose weight. (I got that end of the stick and I hate it with a passion.)
I will also tell you the same thing my doctor told me in the beginning: The first year is terrible, the second year is a little easier but there may be some terrible moments as you’re figuring your body out, and the third year you will probably start giving other newly diagnosed people advice. I’m just over my 3 year mark now, and I feel like I’ve been through hell to get here, but I mostly know what my body is trying to tell me.
Don’t be afraid to talk about it, to ask questions, to be understanding. If more people learned to be sensitive to things like crohn’s, MS, fibromyalgia, and other “conditions” that we live with permanently, maybe we’d be better at being understanding to other humans around us even if they don’t have “something wrong” with them. Don’t underestimate your body’s ability to tell you what it needs; all you’ll ever need to know about getting through this is what it is trying to tell you. I am not on any meds for my crohn’s now and I intend to stay that way (with steroids as a fall back if I absolutely have to).
Eat what you want to. Go around the world if you can (even if it’s only in your kitchen). Live the life you dream of, just listen to your body along the way. Thank you for listening.