Colitis by Numbers: Days Since Module Tracks Flares, Tapers, and more

by on Tuesday, September 8, 2009 21:46

File this entry under: technology

Screen shot 2009-09-08 at 10.32.07 PMPeople always used to give me strange looks when I would tell them that it has been 485 days since my first surgery. I’m no “rainman” or anything, I just use a bunch of different forms of technology to keep track of my health. I’d like to start sharing them with you. Starting with the first one, well, aside from graph paper the first one: “days since”. It’s a “module” for Google’s personalized homepage, igoogle. You can add the module by clicking ‘add stuff’ from igoogle’s page or by visiting the author’s site here.

Screen shot 2009-09-08 at 10.31.54 PMAs you can see by the screenshot, it’s really simple. Sometimes simple is better. Most of the time simple is better. I like watching the numbers go up, and this helps me feel better too. Other possible uses for this could be: tapering on Prednisone, keeping track of how long it has been since your last flare, or just remembering when you last mowed the lawn!

I have a bunch of these technology tips, so check back for more of what I call “colitis by numbers.”

From the WTF? Files: Man East Colostomy Bag Contents

by on Thursday, September 3, 2009 13:37

File this entry under: News

James Orr, 66, was on trial in Cincinnati, Ohio yesterday for robbery and kidnapping when he disrupted the hearing with an extreme act of grossness. Orr reportedly asked his attorney if he had any food. When the attorney told him no, Orr apparently put his colostomy bag on the table, squeezed out the contents, and then either ate, or pretended to eat, his own feces. The Sheriff’s deputy cuffed him and removed him from the room which the judge then closed for cleaning. Orr’s trial will continue next week. [ Link ]

Pure Citrus – Life saver

by on Tuesday, August 11, 2009 5:52

File this entry under: Living with jpouch

300Have I told you about our household love of Pure Citrus air spray.  As all of us have experienced more bathroom scents than non-colon challenged household, you’ll appreciate this product endorsement.  We haven’t been asked to endorse this product but I just have to rave about how wonderful it is. And how this spray saved our relationship.

For me it is offers 3 main things: 1) It eats up bad smell quickly and doesn’t just cover up the smell it removes the smell, 2) The scent of the spray goes away quickly in the air, 3) It is all natural, non-aerosol, animal testing free.

I highly recommend you try this product, you should be able to find it at your local drugstore.

Happy Thoughts 101

by on Thursday, July 23, 2009 19:58

File this entry under: success

This is really cool. 10 days post takedown-surgery. 5 days post hospital-discharge. Hiking a 3 mile trail with no bathroom in sight.

trailThis blows my mind, since I could not have done this prior to having a J-Pouch. My current level of energy is amazing. I don’t feel drained and exhausted anymore, so I’m pretty excited about feeling a quality of life I’ve long since forgotten.

Thank you everyone for your amazing support and I feel so blessed for being able to share this huge overhaul in my life. I can’t wait to see what I’m capable of when I’m done with recovery.

Jpouch Life is on Twitter

by on Wednesday, July 22, 2009 21:40

File this entry under: about this site right, we did it, I know I know… well, we’re over on Twitter now with the handle JpouchLife. Will you still respect us in the morning? All jokes aside, Twitter is a really great place to connect with new people and spread our community understanding and awareness. Hope you’ll give us a follow.

Takedown: 1 Lameness: 0

by on Sunday, July 19, 2009 15:51

File this entry under: Coping/Support

I feel great. It’s really that simple. The J-Pouch is functioning and settling in. I got discharged today before lunch and already feel a billion times better than compared to the same time after surgery one. It’s truly amazing and I feel blessed. This has been a long time coming. Below is some recap of how it went with the TakeDown Surgery, mostly in Question and Answer format so you can skip some boring stuff (like where I painstakingly re-cap 4 hours of Telemundo based on my non-Spanish-speaking powers of observation).

6AM at the hospital. Thriling, to say the least.

6AM at the hospital. Thriling, to say the least.

Q: What happened right before going in for the takedown surgery?
A: It seemed like the basic pre-surgery prep work from before, although this time I was a bit more familiar with the process. I had my Bair-Hugger reunion, rekindled my fondness for awesome foil hats, and was generally more excited to go under the knife. So much so that I asked not to take the “Amnesia Medicine”. Before surgery, the anesthesiologists give patients a medicine that induces amnesia-like side effects, mostly to calm the nerves and lessen the horror factor of seeing the actual operating room. They say that people going in for surgery under the amnesia meds are very compliant, talkative, and sometimes even flirty, only to forget everything. I opted out of these meds so I could see the operating room. It’s pretty much what you see in the movies and on TV, except that it was absolutely freezing in there. In case you are wondering, I tried to trick the surgery team in the room (about 4 or 5 people at any given time) to give me their bank account info, since I pretended to be on the amnesia meds and wouldn’t remember anyway. No dice.

Right: The Foil Hat and I decide to add some cosmetic surgeries to the menu. Left: Foil Hat and I immediately dislike the idea of chin implants.

Right: The Foil Hat and I decide to add some cosmetic surgeries to the menu. Left: Foil Hat and I immediately dislike the idea of calf implants.

Behold the return of the great Bair Hugger!

Behold the return of the great Bair Hugger!

Q: How did the actual surgery go?
A: It was supposed to be a 90 minute takedown of the ileostomy and reconnection of the J-Pouch plumbing, but ended up being a 2.5 hour surgery due to some extra work. The biggest obstacle was scar tissue. The doc had to work around and clean a large amount of scar tissue, more of what they usually see in these cases. I’m flattered. Also, the muscle in my abdominal walls were a bit thick, so it was harder to move around. I chalk this up to the imaginary crunches I did in the last three months with the ileostomy bag. Because I was under anesthesia longer than anticipated, I had some huge issues with waking up.

Q: Why are you such a big baby when coming out of surgery? Can’t you just wake up?
A: I don’t know! I’ve always had issues with waking up from anesthesia, and this one was particularly bad. I remember some nurses asking me stuff when I came to, but I was too drugged to reply. It was a bit frustrating, because they kept asking things and I couldn’t comply. Not fun.

Q: Any other complications?

A: I’m not sure if these are complications, but there were some other areas that needed attention. The skin around the stoma was inflamed going in, so they ended up using staples to keep the wound closed. No biggie on my end, I can’t feel them. When I came out of surgery and had trouble waking up, my oxygen level was too low. I had the available oxygen tubes for the nostrils, but for some reason kept breathing in through the mouth, not nose. So every now and then, while still trying to wake up, someone would yell at me to breathe through the nose. “Through the nose! The nose!” It wasn’t easy. I also now had a little draining tube from where the stoma used to be called a Penrose Drain, but I named it “the noodle”.

Q: What’s up with “the noodle”?
A: It really looked like a little piece of pasta just sticking out. Two inches of tube (total length of about 4 inches) just hanging out, chilling. I wasn’t looking forward to getting the noodle removed, since I’m still having flashbacks of the JP-Drain removal from surgery one. But this was a cake-walk. It sometimes even falls out by itself, ha.

Left: Taking out the noodle. Middle: The section below the red line was inside! Right: The hole it left behind.

Left: Taking out the noodle. Middle: The section below the red line was inside! Right: The hole it left behind.

Made it to the chair, but was still sleepy.

Made it to the chair, but was still sleepy.

Q: What was the most painful?
A: Potassium through the IV. Seriously. They gave me potassium through the IV and it burned. It’s this incredibly strong pain you feel just creeping through the arm. They ended up diluting it with saline, but wow, that was painful. Potassium does this to people who have little to no food (substance) in their systems, like dashingly handsome takedown patients.

Q: Did chewing gum expedite bowel movements?
A: Some studies say that colorectal surgery patients that chewed gum immediately post-surgery had bowel movements sooner than those who didn’t. Honestly, I have no idea. I chewed gum, and I had bowel movements (plural) by day three. But how do I know if the gum did anything? Maybe if I didn’t chew gum it would have been 4 or 5 days before a bowel movement, but I’ll never know. If only I had a twin with the exact same circumstances and one of us chewed gum and the other one didn’t? Did I just pitch a movie?

Where my stoma used to be.

Where my stoma used to be.

Q: Butt burn?
A: I … don’t think so? Not yet, anyway? Maybe it’s too early, but I only felt a little bit briefly. After having a bowel movement, I use the world’s softest toilet paper, finish with a baby-wipe, and then use butt cream. All while taking my sweet time. Eventually wear and tear might get to me, but until then the butt cream helps as a preventative measure.

Q: What’s awesome?
A: That Pringles mascot’s mustache. Dare to dream, kids. Dare to dream. That, and for now, I’m done. Success!

No, THANK YOU, Mount Zion!

No, THANK YOU, Mount Zion!

Don’t Ask, Don’t Tell

by on Wednesday, July 15, 2009 19:13

File this entry under: IBD

shhSo, at every previous job since I’ve had IBD I’ve been very vocal about my disease.  It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth!  Since I’ve been in remission and managed to get a job in Portland, OR in this crazy economy, I’ve decided that it no longer requires mentioning, or for that matter, broadcasting.  I tend to get up on my educational soap box when it comes to IBD, which is a good thing, and something I will certainly continue to do, however, I think many of us have learned all too well that even the most empathetic and understanding employer will, to some extent, always see your disease as part of who you are, and therefore, as a limitation.  I’d rather my work speak for itself.  I’m working as a paralegal, which basically means I do a lot of writing that the attorneys sign their names to.  It’s okay because I adore any chances to write and get paid for it 😉 I’d rather keep professional courtesies, well, professional.  I am a very open, friendly person and I definitely let that come out in my job, but I am also trying to work on that part of me that for so long made Crohn’s a part of my identity.  It doesn’t define me and I no longer want it to, so I’ve made a real effort to modify that.  It’s easy to not complain when you are in remission and not suffering or in pain.  So, for the past few weeks, I’ve overheard our secretary talk about her mother’s “colitis”.  I kept my mouth shut until today when another paralegal started talking to her about a friend of hers who had Crohn’s that was airlifted to the hospital.  At that point my IBD alarm went off and I thought, “Okay, I know a lot about this…maybe I can offer some helpful words.”  So, without an intro of, “I have that too!” I just asked if the girl was on any meds.  Sounded like she’d unsuccessfully tried everything, including Humira, which was my savior.  I had nothing more to offer, so I hushed.  The secretary then started talking to me about it more and I said, “I have an interest in GI disorders and know quite a bit about it, so I was curious.”  I was actually able to make some suggestions to the secretary about her mother, she then asked me, “So do you know someone with it?”  My reply, a smile and a, “Yes.”  I then went back to my work.

So what is your policy regarding IBD in the workplace?  It’s certainly nothing to be ashamed of, and I’m oddly proud of it, but I’ve lived and learned and am, for now, deciding to remain a mystery :)

Pre-Takedown: Tales From Beyond The Stoma

by on Saturday, July 11, 2009 14:26

File this entry under: positive thinking

Hey there. Hi. I’m Brevin and I’m about to blow your mind with this post, a roller-coaster ride of emotions and plot twists all involving the mystery of a missing colon. Mine! And now that I over-hyped it, be ready for a let-down. This Monday, the 13th, I’m going in for takedown, the surgery where they remove the temporary ileostomy and connect the plumbing back to the J-Pouch. I went in for a weird enema/x-ray hybrid as part of the pre-op so they can check if the J-Pouch has any leaks. The procedure wasn’t so bad, but of course the attractive radiologist just happened to be working that day. Nothing impresses a lady like softly weeping while they shove an inflatable contrast tube up your bare bum like it’s Balloon Animals 101 at a Clown College in Brevinville. My pride aside, the enema/x-ray thing had great news: No leaks. It’s surgery time.

Left: Hey, the J-Pouch is "J" shaped! Right: The red line is close to where everything is now connected. If I had a leak, the white contrast would be spilling out

Left: Hey, the J-Pouch is "J" shaped! Right: The red line is close to where everything is now connected. If I had a leak, the white contrast would be spilling out

Yeah apparently time flies, because it’s time to retire Stomie “Squirt” Stoma, PI from his day job as a wannabe Private Investigator, not to mention from his moonlighting gig as a temp loop ileostomy. His contract with the temp agency just ended. Check out what I learned from hanging out with Squirt, PI:
#1: Marshmallows are both lifesavers and delicious. Fellow J-Pouch site contributor Jamie once told me “Brevin, that’s illegal and I recommend you don’t ever bring that up again.” She also then told me that eating marshmallows before a bag change is a great, tasty way of preventing an active stoma. I don’t know the exact edible science behind this, but it slows down your digestive system and makes the bag change routine a lot less messy and complicated. So far this has worked wonders for me. The moral of the story is that marshmallows are awesome and the Ghostbusters are jerks for killing that big innocent marshmallow dude.
#2: The Perfect Bag Change. Everyone’s bag change process is different, but here is mine for a one-piece. I wake up, start eating three marshmallows (no breakfast), and lay out my supplies on a little table right next to the shower. Supplies include a new ileostomy bag (with the end already sealed up), the Wafer paste/caulk stuff, Stoma Powder, No Sting Skin Barrier, Kanalog spray, paper towel, and a trash bag. Sometimes I also have a sword nearby, in case a dragon shows up. While still chewing the marshmallows, I throw my awesome heat-sock into the microwave for 3 minutes. The heat-sock is literally an old sock that my mum filled with uncooked rice. When you microwave the heat-sock, the rice becomes heated and the sock allows the shape to be flexible. I throw it in for three minutes, because after the bag change it will be the right temperature, but we’ll get back to that. I get into the shower and wet some paper towel to start wiping/pushing at the existing wafer to take the old bag off. I don’t use Adhesive Removal wipes because my skin is a tad too sensitive. Once the bag is off, I throw it in the trash bag and say some one-liners from movies to it, like “See you in Hell, sucka”. I clean the stoma with a wet paper towel, while whispering sweet nothings to it. This appeases Stomie, and I then finish the shower while singing adult contemporary hits from the early 80s. With the shower done, I carefully dry around the stoma area and spray some Kenalog spray on the skin around the stoma (protecting the stoma by placing the paper towel around it like a wall). The Kenalog spray is for my irritated, itchy red skin, so you might not need this. I then put on a layer of Stoma Powder (spreading it out with a dry piece of paper towel, like evenly “painting” the powder on), followed by a layer of No Sting Skin Barrier. Once the skin barrier is dry enough on the skin, I put on another layer of powder and skin barrier. While that settles, I apply a very thin layer of paste to the inside edge of the wafer. I try to even it out with my finger to keep it smooth, but sometimes the paste loves to stick to my finger. In case you’re interested, I use Pre-Cut 1 inch opening bags, although I’m going to keep those little scissors for arts and crafts. With the skin prepped and the bag ready to be put on, I carefully place the new bag on over the stoma and press firmly. I also run my finger along that inner edge closest to the stoma and press down to make sure the paste is making full contact. At this point, I strap on the ol’ support belt to help keep the new bag in place and I get the heat-sock from the microwave. The heat-sock is now at a temp that’s warmer than my hand, but not a boiling hot sock full of lava straight form the sun. Please don’t put something too hot near your stoma, you’ll only cause damage. I plop down in the Lazy-Boy chair, recline all the way down, cover the new bag with the heat-sock and let the wafer and paste bond with the skin. The added heat source is a nice-hands-free perk. This takes about 15 minutes, consisting of me watching TV. So there you go. No fuss, no hassle, simple. And I’m zero leaks so far! This sounds great and all, but what makes it the “perfect” bag change? Because I then win the lottery. Twice.
#3: The Lazy-Boy and the Track Pants. When I escaped the hospital after surgery one, I spent a lot of time in the recliner at home. If you recline all the way it almost mimics a hospital bed, so you’re not completely flat. This feels better, and for some reason I just kept sleeping in it up to now. I’ve also been wearing the same Adidas track pants this entire time whenever I go out. The waist is nice and elastic to accommodate the baggy and people think you just came form the gym, so you automatically look cool. Don’t worry, I wash the pants very frequently. Sheesh.
#4: Poo: Variety is the Spice of Life. I’ve seen everything come out of that bag by now. From liquid that looks like iced tea to what can only be described as thick baby food that exploded in the microwave. Colors ranging from orange to yellow to green. Even smells that could kill a level 40 Tauren (for all you WoW nerds). And I’m glad. Because I know I will be an excellent dad one day, since I won’t be phased by diaper changes. Ever.
#5: Diet! I didn’t experience any blockage. Not once. Either I got lucky, or I can attribute this to my strict diet and chewing food a billion times per bite. I am very anal about what I currently eat (“anal”, ha! see what I did there? I swear every paragraph is about poo and butts over here). I did my best to stick with foods on the “ok to eat” list and avoided everything else. All you need is a vegetable peeler and a lot of chewing time. I ate plenty of yams and potatoes, sticking with fish and chicken for my meat at dinner. Yeah, I ate a butt load of burgers, but I took off the lettuce, onion, pickles and tomatoes. I also avoided the buns with sesame seeds on it. Pasta was pretty common too. I’m very proud of myself for somehow avoiding hot dogs this entire time, although the sweet irony with the diet is salad. I can’t stand salad and never eat it. But now that’s it a forbidden food, I’m craving it like mad. On a side note: I weighed myself today and I’m 171.5lbs!! This is a huge win for me, since this is the closest I’ve gotten to my pre-UC weight in over half a decade. I’m ecstatic. At my sickest (during a huge UC flare-up), I would drop down to 150.

So I’m ready for Takedown I suppose. Apparently there are supplies I should bring with, including: baby wipes, the softest toilet paper I can find with aloe, barrier cream (A&D ointment and other “butt cream”), a wooden stake to fight off a vampire, and chewing gum. I’m going to try the chewing gum tip (unscientifically references here). So until Monday morning 6:05 AM PST, I’ll be doing Kegel exercises. 1013… 1014… 1015… ngh… I’m doing so many… 1016… 1017…

Small Intestine/J-Pouch seen in its true form

Small Intestine/J-Pouch seen in its true form


Dave Barry’s Insight into the Colonoscopy

by on Friday, July 3, 2009 14:36

File this entry under: humor
Dave Barry's Colonoscopy Certificate

Dave Barry's Colonoscopy Certificate

Everyone’s favorite humor columnist, Dave Barry, has a great piece on Colonoscopies that a co-worker recently dug up and sent to Brevin. Too long to reproduce here, there are some highlights that I’m sure we all can relate to (especially in the case of his hospital descriptions). Since I was in the hospital 47,000 times last year, and I work as a web consultant for that hospital — I have to go to meetings there, too, eek — these are my favorite parts:

At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the hell the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.

Check out the full article over at the Miami Herald where you can download and print your very own Dave Barry Colonoscopy Certificate (displayed above),  and happy 4th everyone!