Two Things Everyone With UC Needs in Their Bag or Purse…

Sephora perfume and cologne samples double as emergency air fresheners.

Sephora perfume and cologne samples double as emergency air fresheners.

Don’t leave home without them!

I’m not going to claim this is ground-breaking, but these are handy tips – one, if you’re a Sephora addict like me, your bathroom or your bedroom (or both) are probably overflowing with unused fragrance samples. Though there was a dark time when I was known to carry a Bath & Body Works room spray or other legit air freshener whenever I left the house, these days I’m all about packing light. The fragrance samples I receive and don’t like become mini emergency air fresheners for if ever I’m out in public and Colitis attacks. I’d rather chase away everyone in the restroom with a cloud of Dolce & Gabbana than a smog of intestinal dragon rot. And while the other ladies are choking and breaking out in hives, I’m pulling out a lovely little pack of Scott Naturals moist wipes. They’re soothing – because let’s face it, once you have IBD you don’t merely shit, in the words of my G.I., you “pass barbed wire” – and they do the job better than that tissue-thin abrasive commercial sandpaper they call toilet paper. Bring these two life-savers with you everywhere you go and about fifteen-to-twenty minutes after you burst through the bathroom door, give or take, you’ll walk out feeling halfway human again.

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Road Trips…

UC + Road Trips = Bad Scene

 

Nothing earth-shattering this week (not that there ever is) but just wanted to share the above pic, courtesy of Leonard Talbot via The Glitch Mob’s Facebook page. If a picture is worth a thousand words than that’s all I need to say about taking a 9-hour drive while still in some incalculable remission phase with ulcerative colitis. I will add, however, that it’s not quite what you think – while yes, there’s always the restroom-whereabouts anxiety, just sitting for hours on end, involuntarily clenching your abs while the vehicle brakes, accelerates, swerves, et cetera, as well as the inevitable stress of idiot drivers out to kill you, will do a cumulative number on your tummy. Furthermore, when you bookend helping your mother-in-law move out of her duplex with a 9-hour drive the day before AND the day after the move day, it really sucks. Top that off with meager food options (i.e., going without lunch two days in a row and snacking on gluten-free Kind bars for energy) and you have a thing called involuntary weight loss. Passenger (and well-intentioned mover) be warned.

Love In The Time of Colitis

thisiscolitis

This is Colitis.

It’s not glamorous. A Friday “off” together involved one 4-hour Remicade treatment at my new doctor’s Infusion Unit. I was chair-bound, pinioned by my I.V., and my husband made use of the time by getting some work done. Still, we had fun. He ate the gluten-loaded cookies they left for us, we chatted, and when he had to make a call I got to read the magazine I’d saved for this very occasion. Afterward we went out to lunch and ran some errands. It’s nobody’s dream romance, but it’s reality. It’s making the best of the situation, it’s carving out quality time wherever we can find it, it’s being there together and there for each other. Do I envy my friends’ Facebook posts showcasing their exotic and adventure-filled dates with boyfriends/girlfriends and husbands/wives? Sure. I sigh wistfully, imagining that one day I won’t have to post photos like the above to let those closest to me understand what I’ve been up to. My love life isn’t all ski trips, Broadway shows, glitzy new restaurants and beach vacations. Maybe at one point it was, but things change, and now “dates” are squeezed in around doctor’s appointments, infusions and the out-of-nowhere day where my UC wants to keep me couch (or toilet) bound. Social life? Um…well, it’s hard to plan for the following weekend when you have no idea what you’ll feel like by Friday. Will you even have the energy to want to eat out, never mind to go dancing? Will you have energy enough to even want to see your friends if they opt to come over? It’s tough for the partner with Colitis, and I’ve begun to understand that in many respects, it’s tougher for the partner without it–a.k.a. The Saint. When you exchange vows you hope for the best, and while you know that shit happens, on your wedding day you assume the difficult times are only for other people, or at least older people. On your honeymoon you think paradise will last forever. You can hardly conceive of a marriage that isn’t white picket fences, champagne bubbles, lazy Sunday mornings, cruise ship balconies, puppies and roses. And then the universe smacks you upside the head and tells you to wake up. It piles on vet bills and taxes, student loans, car accidents and injuries, blizzards and hurricanes, long hours and layoffs, stress, stress and more stress–and even sometimes Ulcerative Colitis. So here’s a shout-out to my wonderful husband for caring enough to want to be there with me, for making an otherwise boring treatment fun, and for having my back when the going got (and stayed) tough. You are one in a million, babe.

Don’t Let Your Fears Decide Your Fate

Jay Moriarity at Mavericks, about to survive the worst wipe-out in the history of surfing...only to get right back up on the board to do it again.

Jay Moriarity at Mavericks, about to survive the worst wipe-out in the history of surfing…only to get right back up on the board to do it again.

Motivation and inspiration come in many (unexpected) forms. I certainly wasn’t looking for either, I was too busy feeling lousy and being stuck in my head, worried and depressed. Then, about a week ago, I watched the movie “Chasing Mavericks” for the first time. I’d been dragging my feet about it; the DVD arrived from Netflix and sat by the TV for almost a month before my husband convinced me to “just watch it already” so it could be returned. Admittedly I didn’t realize it was based on a true story, I’d just heard mixed things about it and had a vague sense of what the story was about – crusty surfer takes troubled kid under his wing, they surf monster waves together. I knew Gerard Butler damn near died while filming it, and that was about it. (Boy, was I wrong!)

Now, let me clarify that “Chasing Mavericks” is not about Ulcerative Colitis. It’s not even about overcoming illness. Yet it resonated with me, and where (thanks to this stupid disease) I find myself in life right now. Continue reading

There Is Good Hidden In Everything

Not saying it will be obvious, you might have to search (or wait for it).

Not saying it will be obvious, you might have to search (or wait for it).

So in the beginning, at my first colonoscopy (for this), not only did they find the ulcerative proctitis that would eventually become full-blown UC, but they found a pre-cancerous polyp. And not a good (aka mild) kind. One of those if-we-hadn’t-found-this-now-you’d-have-full-blown-cancer-in-10-years kinds. Read: way before the required screening age of 50. The doc was so alarmed, she asked if I had any siblings. I said yes, a younger sister. She said for her to get in for a colonoscopy as well, because these tend to run in families. Well, long story short, her results came back and she has the same type. The both of us now need yearly screenings for life. So where is the good in this, you ask? Just ask my sister. In her words: “As much as it’s not fun to admit, your UC might be a life saver, for both of us.”

I’ve been so caught up in managing this flare, I’d forgotten all about the polyp. Her email to me was a splash of cold water. And you know what? As rough a road as it’s been, I’ll gladly take this bullet if it means she and I both dodged a worse one. So, thanks UC. You just saved two lives. Continue reading

Where Did I Go? – Regaining Substance

depressed

What made you “you” before ulcerative colitis? The disease strips away the bulk of who you are—what you like to do and when you do it, what you eat and drink, who you socialize with and how often, what dominates your conversations, right down to how you feel (and I’m not talking just about feeling sick) and how you regard yourself. I thought I’d managed to retain a chunk of the “old” me, or at least, had invented a “new” me, until I realized that lately, all I am is this stupid disease despite doing everything not to be. Continue reading