Posted in Crohn's Disease, Crohns, IBD

Your Guts Shouldn’t Kill You

 Generally speaking, people take the act of eating and digesting for granted. It’s just something you do 3-5 times a day more or less. In fact, many people don’t eat consciously without one iota of concern about what they are consuming.

For the 1.4 million people like me that live with an Inflammatory Bowel Disease, eating is a completely different story.

We think twice before we consume anything: analyzing if it has potential to cause pain; if we can actually digest it; how long it will take until it leaves our body and where we will be when that happens. After living with the disease for long enough, these things happen mostly subconsciously. The thoughts around eating become just part of the process – like chewing and swallowing. We just have a period of analysis first.

What is surprising about bowel disease is that it can cause problems severe enough that people can die from complications of this disease. I’m not talking about “old people”…I’m talking people in their 20s and 30s. This day in age with our modern medical miracles, medications, surgeries and more ,it seems incomprehensible that someone should die because of something going whacky with their guts. But I can tell you – it happens. It nearly happened to me. Thankfully I made it (barely). But I’m saddened by those that don’t, especially someone so young. It affects our community.

So while cramping, diarrhea and pain are a big part of these diseases – there is so much more to it. That’s why I’m thankful this is CCFA Awareness Week. Hopefully there will be many people like me sharing their stories and getting the word out that these diseases not only severely affect your life – but they can also be the cause for the loss of it.

I hope if you know someone with Crohn’s Disease or Ulcerative Colitis, please take this opportunity to learn more about their disease. Support from our loved ones is so important and appreciated.  Let’s help ensure research continues and ultimately a cure.

Posted in Crohn's Disease, Crohns, Hope & Inspiration, IBD

WTF God….Bowel Disease???

Image

When I first got sick and heard the words “You have Ulcerative Colitis” my reaction could have been “WTF God?” Unfortunately, the cool acronyms we live with now, and take for granted, weren’t around yet in 1989. So instead, it was mostly “can you say that again, slowly” simply because the words Ulcerative Colitis were just unpronounceable at first; and unfathomable to my 19 year old brain. Little did I know what the next decade would bring – surgeries, pain, Ankylosing Spondylitis, kidney stones, and a new diagnosis: Crohn’s Disease. I guess all those years I was thankful it wasn’t Crohn’s bit me in the ass – literally. Never wish for something to not happen…the universe just doesn’t work like that!

Today the Crohn’s & Colitis Foundation of America kicks off a week of awareness of this disease that I share with 1 in 200 people. And to think that 70,000 new people every year get diagnosed is mind-boggling. Yet no one talks about this in the main stream, why? Well because it’s just not sexy to talk about a pooping disease!   Continue reading “WTF God….Bowel Disease???”

Posted in Book Writing, Crohn's Disease, Crohns, Living with Pain, Writing

The stories we tell ourselves about #2

Last night in my “Bring Your Book To Life” book writing & coaching class it was my turn to read a piece from my book. I stressed about what to read all week leading up to the class, finding holes in every section I thought about reading. I was so concerned that the day before class I drafted up an email to my book coach Lisa Tener asking her to remove me from the reading option, I just didn’t think any of it was good enough to share. Then I realized, that is the whole point of being in this class – to learn.  I’m at the point where I’m still only writing, not editing. So I know there are a lot of edits in my future. As I read in someone else’s blog not too long ago (I apologize because I don’t recall who it was) she had a great little piece of art that said “writing is when we make the words. editing is when we make the words not shitty” – That pretty much says it all!

Here is an edited version of what I read in class and I am looking for constructive feedback. As Lisa said in class once, “Spare the Reader, not the Writer.” This is just a snippet from my book section leading up to talking to someone for the first time about your Crohns/Colitis/Bowel issues.  Thanks for your help, I really appreciate it!

****

When you have bowel disease, you forget what it is like to sit down at the table for an entire meal without ever leaving your chair. I don’t mean getting up to the stove to refill your plate, I’m talking making a mad dash to the bathroom as soon as your saliva starts to work and your digestive system realizes you are about to eat.

Here’s the scenario: You are going out to dinner with a new friend who doesn’t know yet about your inner truth. Feeling pretty good you head out the door, your guts have been quiet for a few hours, likely just laying around noiselessly for once, allowing you to enjoy your day. You are enjoying drinks and conversation with your friend at the bar, then you are told your table is ready. As you sit down you are immediately greeted with a warm loaf of bread and soft butter. It is now, at this moment, those guts that have been quiet all day sound the internal alarm “DING DING DING, she’s about to eat!!” The guts look at each other and start to talk about what might be coming. A discussion ensues if the meal (no matter what it is) will be easy to send through or if they are going to have to struggle with it every inch of the way? As this internal belly conversation goes on, the rest of the world only hears a grumbling tummy and assumes you are hungry. The reality…there is a conspiracy happening inside of you, a decision is being made of how long your food will be allowed to stay inside. Now the stories inside your head start, you can tell just from the rumbling that you will be getting up from the table at least once during the meal. That means it is time to prepare our story or stories for what is about to happen. As you cross your arms across your abdomen in a vain attempt to reduce the sounds of your guts, you choke back tears of yet another stressful outing. Mealtime, generally a social occasion, is one of the most stressful times of the day when you live with the  “Invisible Illness from Poop Hell.”

This part of life with Crohns or Colitis gets particularly tricky when you are out with people who don’t know your story yet. is Just how do you explain why you keep getting up and running out of the room during a meal. There are, of course, several options you could choose from. These few suggestions are of a time old tradition that should work just fine….

A) You saw a spider spiraling down from the ceiling and you are deathly afraid of them, so it was just sheer panic that caused you to get up and run;

B) You could have sworn you heard someone calling for you from somewhere; or,

C) You can also use the good ole’ line “Oh my god, I left the iron on, I have to go!” and then make a run for it.

Those probably work better when you return to the room immediately, which of course you don’t because you are already squatting on the toilet bowl, utilizing the “courtesy flush” in order to not stink the place out as well as not offend anyone else who might be in there.

We get awfully worried about what other people think, don’t we? I’ve created entire scenarios while taking care of business. I analyze possible thoughts of other people, automatically assuming they are sitting outside the bathroom door with a timer giving each other disapproving glances, and sighing as the minutes pass by. I just know they now realize I haven’t dashed in for a quick pee. They know now that I’m “doing #2.”  I imagine what the looks on their faces will be when I finally emerge knowing full well I will be avoiding eye contact with everyone.

In the meantime while you are on your 8th flush, your brain now is considering what story can you tell if they look at you with questioning eyes. Did the toilet not want to flush? Nope, can’t use that since they likely heard the toilet flush 14 times by the time you were done. How about “Gosh, what a line in there to wait on!” could work just long enough to get you away before they realize no one else has walked in there. Of course we just want to slip out quick without anyone seeing us. For me with the long red hair, I’m not so easy to hide in a crowd so I’m pretty sure everyone in the restaurant has tracked my progress and will all walk past me whispering “there she is, that’s the one that was in the bathroom 45 times tonight!”

All of these scenarios take place while still on the throne, so when you finally walk out those people you expected the disparaging glances and whispers from are gone. That stress is gone, but you still have to return to the person or people you left at the table. Now, if it’s your family you left, they know why you did so your worries are over. You can run and poop just as much as your little guts desire. However, if it’s a first date (romantic or otherwise) who has no idea yet about your disease, time to figure out what you are going to say. If the date is already a dud, then having an “upset stomach” is the perfect get-out-of-jail-free card! Problem solved! However, if you think the date is going well and you like this person or people, you have to decide how much you want to share. It’s time for you to decide your own comfort level and how much you want to say and, how prepared you are a question and answer session. If it goes the Q&A route, I recommend taking that conversation outside the restaurant!

Posted in Ankylosing Spondylitis, Crohn's Disease, Crohns, Feelings, Hope & Inspiration, Living with Pain, Writing

Who said farts aren’t funny?

I’m at the point in my book where I’m writing about the times I nearly died from my disease. My background in the book is particularly on Inflammatory Bowel Disease; Nerve Pain; Ankylosing Spondylitis; and the depression that comes along with living with those diseases. I know, totally sounds like a bummer of a book, doesn’t it? Well, that’s just a small part of it, but necessary. The good stuff comes after that ugly stuff!  The whole point is that where I am today is because of all the shitty stuff I’ve lived through – literally! As you come to the topic of shitty stuff, inevitably it all comes back to gas. In my family, that means fart jokes.

Seriously….you can’t tell me that people in your circle of friends or family don’t make fart jokes. I mean, farts are funny after all. How in the hell does our body manage to digest our food and then squeak out gas in such a myriad of tunes? They have to be funny to enough people because you can download fart apps for your smart phone (admit it, you’ve either done it, thought about doing it, or know someone who has). You can also buy props like The Pooter.

the-pooter

 The Pooter is a handy little device you hold in the palm of your hand and at just the right moment you give it a squeeze and voila!! Fart = laughter. These items of course are all the modern day version of the whoopie cushion.  We had a lot of fun with the pooter at a convention once…we even had someone take the blame for the “fart.”

When you live with Ulcerative Colitis, Crohn’s Disease or any of the other digestive disorders and diseases, farts no longer are funny. They don’t exist anymore for fun, they are just part of the disorder. As I sit here writing about the time I came very close to death because of my Crohn’s Disease I am having a difficult time focusing. So much of that time period was buried in my subconscious, layered in between copious amounts of narcotic pain medications. I’m reliving the really shitty parts of this disease, when my body seemingly turned against me. It’s not easy to think about, and definitely not easy to write about. It was two years of my life that I have varied memories, many of them humorous in spite of the awful stuff happening.  So in the midst of the ugliness that I’m writing about today, I am taking a little break to share some humor.

Remembering and sharing are ways to let others know they aren’t alone. I know I’m not the only person that has ever dealt with this, and unfortunately I won’t be the last. What I do hope is that people will learn that life is tenuous, short and full of surprises. Sometimes those surprises come in the form of a little toot from the nether-region. So next time, go ahead and laugh about it, you have my permission.  Seriously, farts are funny.

warning-you-are-entering-a-fart-zone