Pre-Takedown: Tales From Beyond The Stoma

by on Saturday, July 11, 2009 14:26
This entry is filed 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

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20 Responses to “Pre-Takedown: Tales From Beyond The Stoma”

  1. avatar

    trish says:

    July 12th, 2009 at 2:09 am

    Ha! Ooooooooh you makethe rest of us ostomates/j-pouchers feel sooooo normal! Even down to the marshmallows…I hoard them! And wearing the same pants all the time? Ha! It seems I’ve developed a relationship with my washing machine. I’m excited that you get your take-down. Hope things go well for you. I get the lovely enema/pr-test next week….but doubt I’ll have take-down (by choice) until January…Boohoo! So I am trying to be REALLY nice to my stoma….BUT my doc said I no longer have limitations on my food. I won’teat popcorn but I did eat a hotdog with no problems(and I’ve been vegetarian for 2 years….odd what I crave post-surgery),veggies now too…but not quite brave enough to do salads. Good luck with surgery, Brevin!

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    Brevin Reply:

    I just found today I can eat jerky. Today. Literally one day before takedown surgery. …sniff…

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  2. avatar

    Elise says:

    July 12th, 2009 at 7:05 am

    Brevin :) Yay for you, I will be thinking of you all day tomorrow!

    I have to check out this marshmallow thing! I have had just about everything, popcorn included! I must have super stoma, I wonder if it is because it is an end ileostomy and not a loop ileostomy? hmmmm. There are a few things I have avoided, like green peppers for some reason. I just don’t think they would be a good idea. I shared a little bit of a salad the other day with my boyfriend and I had no problems with that either. I also feel fantastic! I haven’t felt this good in years! I just wish I were off of the prednisone, this is the longest taper ever!

    Brevin you will do great on the second part of your journey :)

    Elise

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  3. avatar

    Emily says:

    July 12th, 2009 at 1:17 pm

    Hey Brevin…thanks for the TRUTH! I was told at Dr. V’s office that the x-ray/enema tube went into the stoma…liars! I guess they figure if we knew it went up our bums we wouldn’t show up! Anyway, thanks again for making me laugh and I will be thinking only the best for you tomorrow; you’ll do awesome. By the way, I’m next…6 A.M. August 3rd!

    Keep us posted and take care of yourself!

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    Brevin Reply:

    Maybe that procedure differs per person? It really wasn’t that bad ha. I would rather have it go up the bum than through the stoma, because I can’t physically see what they do in the back whereas I will see them poke stuff in the stoma.
    I’ll visit the week of the 3rd! I put Jamie through the horrible nightmare of me showing up with a guitar for a visit, so you can expect the same :)

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  4. avatar

    Erin says:

    July 13th, 2009 at 7:11 pm

    Hope everything went well. =)

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  5. avatar

    ml says:

    July 13th, 2009 at 8:24 pm

    Just got on today. I hope it went well. Thanks for you honest and humor. Cant wait for the second stage stories from You. I have picked a surgeon so the 13th looks like it was a good day for both of us. ML

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  6. avatar

    Lizz says:

    July 17th, 2009 at 11:26 pm

    You, sir, are a freakin’ riot.

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  7. avatar

    brevin via iphone says:

    July 18th, 2009 at 11:26 am

    My new, fully functioning j-pouch says hi to the community. Quote: “Hey what’s up yeah whatever” and then he goes to smoke with the cool kids in the school bathroom. I’m escaping the hospital tomorrow.

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    Megan Reply:

    Brevin, How is your jpouch doing? Sounds fully functioning so your bowels woke up – how quickly? How do you feel? Is your hinny skin doing alright , or are you having the infamous butt burn. Oh the details that I’m sure you wanna share with the world. Well , you can share after you’re done smoking in the boys room.

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    Elise Reply:

    YAY!!!!! No more surgeries for Brevin, all recovery from here Brevin, you are on your way to fabulousness!!!

    Elise

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  8. avatar

    Emily says:

    July 18th, 2009 at 7:54 pm

    Congrats Brevin! I’ve been thinking of you and hope that everything went well. Anxious to hear all about it! I have 16 days and counting until my takedown (not that I can’t wait or anything). Glad to hear you are escaping soon!

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  9. avatar

    Janet says:

    July 30th, 2009 at 1:19 am

    Brevin, u are an inspiration. What a fantastic attitude you have. Good for you. Hope u are very well. How are you feeling?

    I had the jpouch surgery 2 weeks ago and I have a temporary loop illeo at the moment while the jpouch heals. Only problem is recessed stoma which is causing very sore skin :( Have yourself or anyone reading this also had a problem with their skin while sporting a temp loop illeostomy? Thanks for reading all :) Also, “nice to meet you” to you and your jpouch heheheeee…

    [Reply]

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    Brevin Reply:

    Uhhhh… I …can still reply right? Suuuure it’s like almost a year later! But it’s because I’ve been out and about, fighting crime!
    How are you doing now, this far in the future?

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  10. avatar

    Susie O says:

    April 7th, 2011 at 7:17 am

    Hoping everything went well with your take down surgery. Your blog is fabulous. I think you only missed one thing….the hardest thing about having an iliostomy bag is finding shoes to match. lol I am scheduled for my take down in 8 days and keeping a sense of humor has been the key in my survival. Thanks for keeping it real!

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    Brevin Reply:

    Two words: Bare feet. Unless it’s cold. Scratch that. Slippers!
    Good luck on your take down! If you’re anywhere close to SF I will come visit and probably steal your hospital snacks.

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    Susie O Reply:

    I never noticed it before but my slippers do match!!! Now, if you look on a very small map we are real close…I would suggest not holding out for my broth though – writing from MN. LOL Days are ticking by and my bags are packed. I have had 2 additional hospital stays since my first surgery with some complications – few blood clots, high fevers, anemic/dehydrated, and reaction to low doses of Prednisone but other than that its been a great ride. : ) Seriously though, its still better than the UC. Looking forward to a MUCH easier recovery. Its blogs like yours that keeps the anxiety low.

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  11. avatar

    Dawn says:

    March 27th, 2012 at 9:55 am

    Brevin! So glad things went well. I wish I knew about the marshmallows. Now that I do, my next shopping trip will consist of the squooshie pillows of lusciousness. I haven’t really changed my diet much. They told me pre-surg not to eat pop corn or corn. I’ve had corn with no problems. I eat rabbit food until it comes outta my ears without problems, but like you, I have to remind myself to chew a gagillion times. Spewie doesn’t like little bits of lettuce squeezing its way out of his little hole. I have had “consistancy” problems with starches. Being italian, its hard to keep me away from pasta or a nice warm loaf of crusty bread. I find if I eat a lot of carbs, my poo gets too thick and collects around the opening. I’ve had problems with it not falling into the bag and causing the seal to break and well, you know what happens next. My takedown surgery is scheduled for April 11. I’m just glad to know there are others out there who share my issues and still maintain an awesome sense of humor (along with a lot of great tips!) Thanks!

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  12. avatar

    Antione says:

    February 12th, 2015 at 5:26 pm

    Changing lanes and lines is what captures me most of the topics you have posted

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  13. avatar

    Randal says:

    February 12th, 2015 at 7:35 pm

    I also like Flash, however I am not a good designer to design a Flash, except I have software by witch a Flash is automatically produced and no additional to hard working.

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