Words of Wisdom From a Crohn's/Colitis Warrior
Since the age of 14, I have battled Crohn’s disease. Later on in life I developed sarcoidosis and just recently colitis. For those people who are reading this to get educated, pull up the old comfy chair while I dispel some of those nasty, ill contrived beliefs about Crohn’s/colitis. And while I am at it, I’m going to fill you in on some other important stuff you really need to know. I’m hoping your IBD special one will casually drop this list right in front of you so the next time you feel helpless to help, well, here you go! You can actually carry it in your wallet so you can always be at the ready. I figured since my own body has been attacking itself from mouth to belly to bum for over 47 years, I could call myself an expert of sorts but only as far as my own body is concerned. I am not a doctor, nurse or even an aide. Bless their doctor and nurse hearts but I stay strictly on my side of the street.
Humor
This is my oxygen. When you are hurting every dreaded day and night and your only friend is a heating pad and hopefully a warm toilet seat, life can be tough. Humor can bring the humanness back into our lives. I mean, who doesn’t love a big old belly laugh to help what ails you? So yes, humor is the perfect salve for “those” kinda days.
Just Do It
Please don’t say, “Call if you need anything” because really, some of us do need everything but we may be afraid to ask. Some of us may have lost friendships because this disease takes over whenever it wants. It doesn’t care if you have a really hot date lined up for Friday night. It just rips that calendar right off the wall, takes a red Sharpie and crosses off the entire weekend. It doesn’t care about those fabulous new shoes you bought, you know, those killer heels. They will stay right in the box as you search for your favorite socks. You know the scruffy ones that keep your feet perfectly comfy. The only thing killer you will be experiencing this weekend is the pain in your belly. It is just these kind of days that we would be ecstatic if you just showed up with a great movie or just to hang with us. Friends who will hang out with us even if we look like something the cat dragged in: we love you for just being you and showing up. Nothing special, we just love your presence in a life that can be, well, lonely at times.
Pay for a Cleaning Person
This is the golden fleece of all gifts. There are times when I walk into my kitchen for a cup of tea and all I can do is shriek. It looks like small green creatures have moved in and made their home in my sink, throwing dishes here and there. Dear Lord, I say, why can’t the kitchen be self-cleaning like my oven? Just the thought of having to put the clean dishes away and load the dishwasher makes me exhausted as I take a clean cup out of the dishwasher full of clean dishes. For now, I’ll just use the dishwasher as a place to keep the clean dishes, like another cupboard. But to have someone come in and clean my kitchen, vacuum my rug and change the sheets on my bed, is heaven. It’s the Disneyland of gifts, it’s better than ice cream, better than diamonds… wait, I’m not sure on that one, and we need more research. But to have someone clean my house I’d be deliriously happy. I’d love you for life…honest engine.
Food Shopping
I mean the real, whole list kinda shopping, not just a quick grab of milk at the convenience store. I’m talking staples here, like toilet paper, bread, cat food and frozen food dinners. The real nitty gritty of food shopping. Just call us and say, “I am going to go do your food shopping today. I will be at your door in a few hours, so make a list and I mean the real, hardcore list and I’ll get it done.” Scary, I know, but I’ve experienced this and I can tell you having someone go to Costco and get me a giant package of toilet paper is so amazing. Almost better than the holidays. Just knowing I am fully stocked up with toilet paper gives me the freedom to poop without anxiety, no gingerly pulling that last piece of toilet paper off the roll because you know you – this could be the last roll. We’ve all been there. Having to think strategically on what bathroom you’ll need to use next due to a pending shortage of toilet paper. Being well stocked with toilet paper gives us such freedom, so freeing…like butterflies on a summer day… well, not really, but you get the picture.
Just Call and Say Hello
Just a quick check in call can do us a world of good. To me, it means I count. I may be stuck in bed looking and feeling like a gargoyle but your phone call makes me feel instantly human. I know you cared enough to make a call. Your contacting me brings me back to the real world, the one I may have not seen for a while. Tell me anything, fill me in about the wicked hairball your cat deposited by your bed as a gift, or I want to hear about your mother-in-law who is beginning to sound like a screaming goat, or when you try to hug her she turns into a fainting goat… I really don’t care, I am loving every minute of hearing your voice. Plus, my heart swells a little because I know you care.
Prescription Pick-Up
One could argue that this belongs under food shopping but it doesn’t and here’s why. Just this past week alone, I have had four different prescriptions called in on different days from four different doctors. Different aren’t I? Well, not so much. Those us who have these dastardly diseases pretty much keep the pharmaceutical companies in the black. I could probably have my own pharmacy – well, at least a little one. But to have someone grab those for you is unbelievably fantastic. I live alone so when I can’t drive, which is a lot of the time, my totally uber cool neighbor grabs them for me on his way home. I feel like he’s my secret genie. I wish I could give him like a million dollars to say how incredible lucky I feel that he does this for me. I did tell him he is never allowed to move, though.
Twisted Untruths About Crohn’s/Colitis
“It is contagious.”
Tell this only to people you’d rather not see again. Then try to shake their
hand.
“It’s only a bathroom disease.”
What does that mean anyway?
“You get it from a toilet seat.”
I think the same person who said the above may be responsible for this one.
“You can cure it if you just eat right.”
Really? Wow… the cure was right there and our millions of doctors/specialist we see didn’t know about it?
“There’s this new drink called (fill in any name) and it is supposed to cure Crohn’s, and lucky you I just happen to be selling it.”
Oh really? Well I just happened to be broke and you’re full of dog doo-doo, so go away.
I do hope these little remedies help you.
We warriors must band together and support each other. I’d love to hear anything that helps you. Because we all know when you feel like you’ve become one with your bed, it’s time for a little reality check. I warn you though, do not look in the mirror alone. I did once after a 14-day hospital stay and I’ll tell you Medusa had nothing on me. Be strong, or not… it’s all OK. We’re in this together. Honest engine.
I was diagnosed with Crohn’s disease when I was 13 yrs. I was a tomboy who rocked party dresses. I was curious, loved my big Siamese cat called Shabooey and Surf, my soft shelled turtle. Curly Auburn headed, petite and topped off with enormous dark chocolatey brown eyes. The day the pain began, that little full of life girl, went dark...no one believed me. First bowel resection was in 1973...I had no idea how sick I was because back then or at least in my family, you did not speak of anything that wasn’t all shiny and bubbly. Thru the many, many years of confusion, denial and ignorance...I survived by skating on the surface of my life. Married, two beautiful children, a divorce and a successful career I loved, hit the fan and all 4 tires blew at once. In 2002 I became officially disabled. I had to stop working so I left the big city of SF and moved back to my hometown. I bought a pretty Victorian home and went from Corp executive to jeweler. After my 8th bowel resection, and blasting thru every drug on the market, tacking on more delightful diseases; sarcoidosis, primary immunodeficiency, Sjögren’s, and the list goes on I decided enough is enough, for Pete’s sake. I opened Heartandhammers.etsy.com and became a tiny business owner. And then I rescued a ginormous, sweet 110 lb dog, Greater Swiss Mountain dog who I named Ollie, a darling little sprite of a kitten, aptly named Skeeter and my older, mature Ruby. She is a calico with all the grace of a queen bee. We are happy some days, others too much pain. Bearing the weight of too many diseases takes the wit right outta me. I’m single so I do my best to balance everything but plain and simple...it’s really damn hard. I’m writing this from the hospital..I’m a little drugged up, sleep deprived and feeling lonely but...I’m a warrior now. So I’ll do what needs to be done and get home to my little family of 4 legged loves....rinse and repeat.
pamelasquires