There is concern about your weight. You lost eleven pounds in ten days. When admitted to the hospital you tipped the scales at a whopping 120 pounds. After yet another colonoscopy they come back with the dreaded “S” word. Surgery. It is highly recommended you have your colon removed. At the moment it is not an “emergency” situation but they clearly inform you that if you leave the hospital and the medications that are barely helping you hang
Together you sit quietly and listen to the cacophony that is the hospital: Machines in every corner of the room that beep incessantly; speaking to no one. The squeak, squeak, squeak of the nurses’ white shoes on the polished floors as they walk down the wing attending to someone else. Other people stuffed uncomfortably into ill-fitting gowns that reveal to much of your backsides and tiny hospital rooms with nothing but a shower curtain
They come in shifts. Mostly during the day. Sometimes at night. When you wake they are there at the foot of your hospital bed. Crammed into those uncomfortable armchairs with the worn finish and tattered, stained fabric. You think to yourself that even a death row inmate receiving his injection should not have to sit in such ugly chairs. Or, they stand next to the window looking out onto a freedom they could so easily
“Two point eight miles to go, Ryan.” my coach, Eric, calls out from atop his kayak.
He steadies himself using his paddle to counteract the waves that keep coming at both of us from behind. The waves are frequent, huge and unpredictable. Unpredictable because of the pitch blackness of night that has descended upon us. Honestly I have no idea what time it is. I just know the sun went down a long time ago and
(Written in the bathroom of FIVE GUYS during lunch with my son.)
I turn to glance into the mirror,
Two years a ghost.
Curled up in the fetal position on my couch.
A puddle of shadows. Just vapor floating between the walls of my home.
Two years haunting my own life.
Three years since they wheeled me out of an operating room with fewer parts than when I had gone in.
Five years in a blink.
and hold the gaze of the man
I draw back my window shade and happily watch our garbage man toss into the back of his giant truck the six bags of crud that I had, last evening, dragged to the curb. There is something else out there on my lawn though. I know what it is. The garbage man ignores it. I do too, and turn my attention instead to the lone cloud working away across this blue sky.
I was recently invited
and now all of the cosmos swirls here beneath my skin…
Okay, not really. But you have to admit my arm kind of looks like one of those deep space pictures that NASA takes of the universe. What really happened, according to the folks at the ER, is a venous injury. Just before my scope last Friday the nurses administered medication through my I.V. At that exact moment I felt a horrible burning sensation in my
I’ve been sort of trepidatious since my scope last Friday. Overall my Doctor was quite pleased with what he saw. Appears Remicade® is working its magic and I have shown signs of healing in the areas that just three short months ago weren’t looking all that great. Of course it wasn’t all unicorns frolicking on magic rainbows… the inflammation has shifted, as is typical with Crohn’s, and is now targeting a different region. So, we
“What I wouldn’t give for only one night / A little relief in sight…”
Every Little Kiss by Bruce Hornsby & The Range
Dear Remicade …. well, I am still waiting. Waiting for my super powers. Buttttttt …… Last night I did actually sleep through the ENTIRE night. I didn’t get up once. So, thank you for that. Yesterday was my third dose. I am now on the regular every 8 weeks schedule. I just hope it
If you look at the top of this page you will see a new link titled CALMOSEPTINE. There you will find a story about how I was first introduced to this product. Calmoseptine has graciously agreed to advertise on this blog. I promise that only products that I personally use and trust will be advertisers on this blog. Don’t worry, you won’t find ads for Canadian pharmacies promising to supply you with every single prescription
So, February 28th is my start date for Remicade® (Infliximab). I’m pretty excited! But probably not for the obvious reason (that being it hopefully will stop the inflammation and quiet my Crohn’s a bit). No, I’m excited because I have another chance to develop super powers. I was pretty bummed it didn’t happen with Humira®. Cimzia was a bust as well. But Remicade. That’s the ticket. I mean this stuff so mirrors the super-serums from my
(Or “I’m getting an F in Chronic Illness”)
Back in my school days I wasn’t the sharpest tool in the shed. Don’t get me wrong, I wasn’t a horrible student by any means (unless it involved math – couldn’t stand math!) but I also wasn’t “Mister 4.0”. Fast forward to my adult life and my Crohn’s diagnosis and I sort of feel like I am back in school. Only this time around I am a foreign
“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says “Go to sleep, darlings, till the summer comes again.”
The following is a guest post from Rebecca Kaplan.
Rebecca’s husband has Crohn’s disease and Rebecca writes a very informative blog: Caring for Crohn’s & UC which can be found here:
Clearing the Air About Crohn’s & UC
There’s been a lot of confusion recently inside and outside of the IBD community on the differences between Crohn’s disease, ulcerative colitis and colitis and whether or not you can have both diseases or not. Because of all the confusion,
I had the distinct honor of being on the IBD Round Table last evening. Frank Garufi is the creator of the Round Table and hosts a new discussion each month. Frank is an IBD advocate and has a young son with Crohn’s disease. Please subscribe to Frank’s YouTube channel. His contact information is as follows:
Frank Garufi Jr.
Crohn’s and Ulcerative Colitis Advocate
The Crohn’s Colitis Effect
Website / Google+ Page / Facebook / Twitter
The IBD Round Table Discussion
Subscribe on YouTube / Subscribe on iTunes
Frank’s core panelists include:
The Crohn’s and Ulcerative Colitis Diaries: Living with IBD
(The things that prednisone does to me. The field where I lay my body. A snake. Coming to grips with that thing called mortality).
Pills everywhere. Lined up on the surface of my coffee table. I count the pills. Stare at the pills. I take the pills. Shove them into my gullet and let them start their journey. Water them. Feel them disperse in the void that is my body. It’s just before midnight. I’m sitting
… or back to square one …
“Between the searching and the need to work it out / I stop believing everything will be alright / Broken / We are broken”
Broken – Tears for Fears
Back in the mid-nineties ABC aired a highly-successful yet barely-made-it-through-one-season show called “My So-Called Life” starring Claire Danes. My celebrity crushes go like this: #1) Keri Russell. #2) Claire Danes. My wife’s celebrity crushes go like this” #1) Adam Levine. #2) Adam Levine. #3) Adam
Taken directly from their website:
“Stealth Belt Ostomy Support Belt gives people who wear an ostomy or urostomy pouch better ostomy care options after colectomy, ileostomy, urostomy and other colorectal surgeries. Stealth Belt Ostomy Support Belt provides twenty-four hour comfort, protection and support. Stealth Belt is a real solution for your ostomy care needs.”
I owned two Stealth Belts. I used them for swimming. I used them mainly to hold my pouch so that it didn’t just
So, please don’t think I am cheating for my personal challenge on day 3 of IBD Awareness Week. Any IBDer who has been on or who is currently taking HUMIRA® will tell you it HURTS. Here is a short video showing how to inject it. Believe me, I would rather do the pull-up challenge again.