The Dreaded Pouchitis: Not as dreadful as space scurvey

You see, it took me 2 years and a trip to Argentina to get pouchitis. While there on a business trip, a steady diet of meat, more meat, and some meat, coupled with small breakfasts, very late dinners and no snacks in between, all upset my plumbing. I might have gotten a tad dehydrated as well and yes, I am now 34% fluent in Spanish. My last two days and the flight back was like an attempt at setting a world record for most bathroom visits. They should have punchcards for bathroom stalls where ten visits gets you a free sandwich, but I secretly hope that they will never sell sandwiches in bathrooms. The first thing people told me when I got back to the office (aside from “oh we thought you left so we divvied up your stuff”) was that I noticeably lost weight. Well, I did. Like 12 pounds.

In hindsight, Argentina gave me plenty of clues that they had it in for my j-pouch. This stall at a soccer/football stadium didn't even have toilet paper roll holders, let alone toile paper. An omen, if you will.

When I had this increase in frequency and odd pressure associated with the urge to push (you know, when you need to give a little push to gently remind your bowels that it’s showtime), I thought it was just a souvenir of Argentinean culture and not anything too bad. On behest of my friend (who happen to have been one of my nurses), I went to visit my surgeon to get it checked out. A cold finger poke later and she said yep, all signs point to pouchitis. Pouchitis is inflammation of the ol’ j-pouch, so it might feel like colitis again. Oh j-pouch, you trickster you. There was no something-something-osis (where there is some tightening, which I took as being bad), so I got a short dose of Cipro and I was fine literally two days later. Seriously, this is a cake walk compared to everything we’ve been through.

Pictured: me doing pushups in the middle of nowhere with pouchitis. See, still better than UC. Not pictured: a bathroom or a sea monster.

Scars: A roadmap to victory!

The scars themselves are minor footnotes in my journey to recovery. I could tell people that the scars are from when I was in a bar fight with a grizzly bear, but I take pride in where they come from and what they represent.

15 pounds heavier; it all went to the cankles.

It’s The Little Things: Being an undercover “Normie”

“Normies” are normal people. Having this newfound sense of health, I’m going in deep undercover into their shady, secret underworld of “physical activities” and “not being too concerned with where the bathrooms are”. And I have to say, it’s the little things that make you appreciate being healthy. This point really hit home for me when I recently went to a Rammstein concert and spent the entire show trapped up front in a wave of bodies, able only jump around and bang my head to rock out. I didn’t once get that sense of urgency or accompanying anxiety, and it was awesome. You know when I pulled this off last? 2001 when I was still pre-UC. I feel blessed to have this additional sense of perspective.

Supporting the Cause: Poop

Do you happen to live in the San Francisco bay area and want to be part of a supportive group but don’t like the idea of a sterile, boring support group and your expectations aren’t too high? Well we’re trying something different. I have joined forces with Gwendolyn, a friend and Team Challenge mate, to create a supportive social group for people who are affected by Crohns and/or Colitis. Check us out at http://www.facebook.com/SFSSG!

The SFSSG!

Progress, yo!

I censored the mooning. You're welcome.

These posts might also help out:

• March 27, 2010 -- Colston Thomas Mills (4)
• February 25, 2010 -- Commenter with Questions (13)
• April 5, 2010 -- Home from Surgery #1 (1)
• February 19, 2010 -- Blood, Poop, and Tears (3)

I came in at 151lbs right out of the hospital in 2009. I used "Avatar" quality CG to replicate the picture with me coming in at 191lbs today.

I posted my 6 month anniversary here, and not much has changed aside from my new addiction to adrenaline and endorphins (and Vitamin C chewables because they taste like candy. Don’t judge me!). But I’ve been busy living life and supporting the cause! Instead of typing a lot of silly nonsense, I’ll just share silly pictures of my accomplishments with nonsense-filled captions!

I raised over $4000 for the Crohn's and Colitis Foundation of America (CCFA) by completing a half-marathon with Team Challenge. I started training right after I came out of the last surgery by walking small distances and eventually ran 3 of the 13.1 miles. I now run about 5 miles twice a week and continue to support Team Challenge. I expect everyone on this site to attend the next Vegas Half-Marathon in December dangit.

I haven't been to the snow since 6 years ago when I poo'ed all over the place. Way to ruin nature, Colitis! But this past April I finally enjoyed an epic trip to a cabin, complete with snowmobiling at night and staring Mother Nature right in her beautiful eyes. In this picture you DON'T see a bathroom and I didn't even freak out by that. Does a bear crap in the woods? Probably, but for once I didn't!

That is a ^%#$ing cart of meat. I hope this will convey my current lack of restrictions in diet.

The scarring is such a non-issue. Seriously, who cares. The sweet irony remains that the largest scar on my torso isn't even from getting an intestine removed.

So for anyone who is trying to accept surgery as a final means or is already horribly scared by this ordeal, please know that it does pay off. Yes it’s scary and yes it’s a change to your world but you adapt and the world simply adapts with you. I’m healthy again and I feel blessed that I even received this opportunity. This J-Pouch community has been incredibly supportive to me and I will always be supportive in return. Always. Except while Lost is on, but that show only has two episodes left and then I guess I have to go cold turkey.

Thank you.

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

Weight: When I had UC, my weight would fluctuate as I had flare ups. When I got out of the first surgery, I was coming in at a 152 pounds. Now, I’m sitting around a 183 pounds and, here is the best part, it no longer fluctuates all over the place. I’m super proud of this achievement. It means my body is stable for the first time in 8 years!!

Poop: I still go more than an average person, but come on, people. Come on. During UC I had constant pains and had to run to the bathroom every hour or so. I now don’t have to rush or anything. It’s all rather casual now. My stool is also more controlled now (you know: solid, smells like flowers, wins awards).

Diet: I have less restrictions now than when I had UC. I started slowly, sampling various foods and transitioning my diet to new food groups. So far, everything is good. I do avoid a few certain styles of food because, well, the results were mixed. Leafy salad, corn, and Mexican food aren’t on my Favorites List, but there hasn’t been a food that totally wrecked me. For those concerned about Mexican food: no, you won’t have to sacrifice the deliciousness. But I do recommend you pace yourself ha.

Fiber: BeneFiber is awesome. I don’t have to take it as often. In fact, I haven’t’ taken it in over a month. Instead, I just take it when I’m going to try a new food or eat something that I know will cause issues (looking right at you, soup).

Meds: Aside from the occasional Pro Biotic (VSL #3) and multi-vitamin, I currently don’t take any medicine. For someone who used to take 12 Asacol tablets a day on top of other fun pills for many many years, this is extremely liberating. Weird, almost. But I feel like I earned this freedom by going through with the surgery.

Exercise: I go the gym 6 days a week. I’m not trying to get buff or win World’s Strongest Man, regardless of what my previous claims might have implied. Instead, I’m just really, really, really excited about being healthy again and am trying to maintain my health by helping my body out.

Scars: Check it out:

Aside from the large scar that I've had since I was a wee baby, you can barely tell.

Team Challenge: I learned about this from fellow j-pouch community member Elise. Team Challenge is having a fund-raiser half-marathon this December in Las Vegas for the CCFA and I’ve been training dangit. When I had UC, I couldn’t run unless it was straight to the bathroom. Now, get this, I can drive to the city, train, come back, and THEN use the bathroom. And when I say “train” I mean pretty long distances. This past weekend was 5 miles walking and 5 miles running. I’ve never run 5 miles in my life, ever. It’s soooo motivating to be surrounded by a team members all gunning for the same cause: finding cures for UC and Crohn’s. And yes, I’ve been raising funds. All of my fund raising goes straight to the cause: YOU. I’m doing this for everyone affected by UC or Crohn’s. I hope to make you all proud! Here is my fundraiser page. Lizz you better donate a grand or I’m sending you “questionable” pictures.

Training for a %$#ing half marathon.

These posts might also help out:

• February 25, 2010 -- Commenter with Questions (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)

This 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.

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• February 11, 2011 -- Belladonna Wars? (7)
• September 12, 2010 -- I suck at being sick (24)
• December 21, 2009 -- Update (6)

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 calf implants.

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.

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.

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!

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

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

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)
• April 5, 2010 -- Home from Surgery #1 (1)

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• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)
• February 13, 2010 -- Take a walk in my shoes (93)
• February 10, 2010 -- Making Ostomys HOT! (3)
• November 23, 2008 -- HI EVERYONE! (3)

Once in the actual appointment, it went pretty fast. To be honest, the only complications I currently have are not related to the J-Pouch at all. The two biggest issues I have right now are my irritated skin (I have super sensitive skin that loves to flare up when I’m within a thousand yards of anything that remotely resembles a seasonal allergy) and one lapro scar that isn’t fully healed. The doc can’t do anything about my skin of course, but she did look at my lapro scar and isn’t too concerned. The wound just needs to heal up, since it seems that it pulled open a little, unlike the other ones. The skin just needs to close up. I currently cover it with a saline-soaked gauze thing, but the doc recommends I use a vitamin A and D topical on it. Just as she said that, she went “Oh wait here’s something better! Try honey!” Apparently you take honey and mix in sugar until it’s the consistency of a paste. Cover the wound in that, cover with gauze, and let it heal. I then added “Sweet! I can then finish off the left-overs!”, at which point we both laughed and high-fived each other. Ok, we didn’t high-five, but she did look at me weird when I mentioned I could eat the left-overs. I just hope I don’t attract bees and … and bears. Or even worse, bees the size of bears.

She then, how can I put this, used her finger to see how my J-Pouch was feeling… from within. As I lay there on my side, wondering why I didn’t have a rape-whistle handy, she said I’m healing up well and seem to be on track for takedown. Not too shabby, methinks. The first week in July I’ll go in for an x-ray and they’ll verify if everything is where it should be, progress-wise. The take-down will then be scheduled the week afterwards, so the rough plan right now is I’m going back for round two in the second week of July!

So yeah, a pretty successful post-op, except for the part where I forgot to ask about my diet. When can I eat sausage again?!
Until then, my stoma and I will continue to solve mysteries each week. This previous week’s adventure is below:

On a side note, a special shout out to Elise, who is about to escape the hospital.

These posts might also help out:

• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• June 10, 2009 -- The First Surgery: One Month Later (9)
• June 6, 2009 -- Let’s just call it … IBD (8)
• July 20, 2011 -- 2 Years Post TakeDown (6)

The Scars:

I’m amazed by how well the laproscopic scars healed up. They look like tiny papercuts. Well, except for one. The largest of the lapro scars (on the left, below the previously existing scar) is still healing and has a long way to go. It might get infected, so to avoid this I have the band-aid on. This particular scar is a jerk when you compare it to the other ones. The large, main scar above the pubic bone is healing up nicely. The small purple spot is where the JP Drain was. Not too shabby, considering they shoved a tube in there. All in all, I welcome the 6 new scars (it will be 7 once the takedown surgery patches up the stoma). I’m still bloated and lost some definition, but I think it’s hilarious that the LoveNox injections I give myself in the love handles (for a tiny blood clot incident) are leaving more marks than a massive surgery. Yay, fear of needles!

1) Lapro: super tiny and disappearing; 2 and 3) Lapro: almost gone; 4) JP-Drain; 5) The Big One; 6) Oh look an intestine sticking out; 7) Lapro: Band-Aid protecting scar

The Stoma:

Do you feel left out for not having an ileostomy? Do you get made fun of for not having a stoma? Well I’m here to help! Simply glue a red Dots candy to your stomach! It’s pretty much the same. Expect my Dots candy likes to poo when startled. And to poo just for fun.

The medical community is telling me that my stoma is fairly tiny. I guess there are varying sizes? It’s between 7/8″ and 1″. The stoma’s opening itself is close to the surface of the skin, so this causes skin irritation close to that area. I haven’t named my stoma yet, although the name Stomie “Squirt” Stoma, P.I. is winning so far. I’m open for suggestions! I do have a character profile in place. Stomie “Squirt” Stoma, P.I. solves mysteries each week with it’s crazy detective and observational skills. Sort of like Murder, She Wrote but with more.. poo. Last week we solved the mystery of the missing Pringles! It turns out I ate all of them.

Left: Eww gross yuck ewww; Right: Yay!

The Ileostomy Bag And J-Pouch:
One month, zero leaks. Yes, I realize the leaks are inevitable and I came close to getting leaks. But I have had no emergency patch jobs yet. To make up for this, my body (who is holding a grudge against me for not enjoying cheese cake during my hospital stay) is sometimes leaking through the bum when I sleep. Apparently when you sleep, your muscles are relaxed and you can have discharge through the J-Pouch. It’s not regular clock-work leakage, and it’s not exactly gallons of fluid, but I play it safe and have a pad thingy available when I go snore away. How common is this for folk with the j-pouch? Will the leakage stop once my bum clenching muscles wake up?

The Home Nurses and Costco:
For some magical reason, my insurance covered all of the surgery and hospital bills but won’t cover the actual ileostomy bag supplies. I’ll have to pay out of pocket for these goodies, but until then am blessed with Home Nurses and what I can only describe as the equivalent of Costco’s sample stations, but it’s Ileostomy Bag samples. They bring in all of these samples for me to try. I’m still finding out what works best for me (a convex two piece velcro baggy seems ok so far), and I’m enjoying the free samples while I can. When I’m going to buy the supplies, I’l be dang sure it’s the kind of supplies I like. I have a belt strap thing that helps keep the bag hugged to the body, but are there any other crazy goodies I should know of? Any hot tips? These bags don’t seem to hold their shape, so I’m always cautious about half holding the bag when I walk around. And for those with ileo bag experience, how did you uh… exactly empty it? If you’re too high up from the toilet bowl, it will splash toilet bowl water everywhere. In order to get close to the bowl, you have to kneel or aim veeerryyyy carefully. What gives?

Left: Newly changed bag with the awesome strap/belt thing; Right: My interpretation of 30 minutes later

Diet
Oh Bratwurst. I miss you. And any sausage with casing, for that matter, which just happens to be my favorite food. But nay, I shall not become depressed! Instead, I’ll drown my sorrow in meatloaf. I’m still having inconsistencies with my poo. Sometimes it’s thick-ish, sometimes it’s pretty liquidy. I’m still finding that balance as to what works, but out of curiosity, what fiber supplement works best? BeneFiber? MetaMucil? Colon-Blow?

The healing process is an amazing thing. I can’t wait to see what my progress is a month from now.

These posts might also help out:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• February 25, 2010 -- Commenter with Questions (13)
• December 21, 2009 -- Update (6)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)

Day 1:
Progress: Felt excited going in to surgery, mostly because I couldn’t wait to get rid of UC after all this time. I remember a bit of the prep, but not much afterwards. I do remember hearing my manager’s distinct laugh at some point, and it was later confirmed that he visited while I was in recovery. How weird is that? Lameness: I was in the recovery room for 3 to 4 hours, instead of 90 minutes. I apparently didn’t respond well to the pain, but I don’t recall. The doc also later said that my entire large intestine was in pretty horrible shape. Fun Fact: They have this inflatable blanket filled with hot air called the Bair Hugger. It heats you up fast, and so help me I want one for home usage. Hot Tip: If you have arm hair, shave it off before hand. One of the most painful things during my entire hospital stay was tape removal from body hair. So many, many tears. They shaved part of my left hand during the beginning, but ended up using my right hand for the IV. Dangit.

Left to Right: Excited to get in for surgery; A Kodak Moment censored; The Awesome Bair Hugger

Day 2:
Progress: Upgraded to ice chips. I love you, ice chips; you really helped out. Had a short painful walk to across the hallway. I really don’t remember much else, except I briefly made it to a chair. Lameness: Beats me, I can’t remember. Probably a lot of pain. Fun Fact: I don’t see how I can ever do bowel prep again. Bwahaha!

Left to Right: Testing my lung activity; Somehow made it to a chair; My first walk

Left to Right: Ileostomy bag and JP-Drain; Close up of JP-Drain that accumulates excess fluids

Day 3:
Progress: Walked a bit more, felt more aware of where I am and what’s going on. First popsicle! Lameness: I had bad nausea that night and couldn’t sleep. I also dropped the nurse-call button and was stuck without help until they did the rounds. They didn’t want me to drink any water when nauseous, so I was thirsty as well. Didn’t sleep much. This is exactly why you don’t stay up to watch the Lost Season Finale in a hospital. Hot Tip: Tie that dang nurse-call button to your bed so you don’t drop the entire thing to the floor. Fun Fact: The patient is at an angle during the surgery, with the head a bit down. They pump you full of air to maneuver a bit better through the organs, which explains the gas pains and bloating afterwards.

Day 4:

Progress: Now on Pureed food! So long, horrible broths. First complete Ileo bag change! Hot Tip: I can’t stress this enough. The nurses can’t stress this enough. The people on this site who had the surgery can’t stress it enough. Walking is your friend. Do it, and do it often. If you can’t walk, the movement from lying to sitting to standing is a huge, huge win. Bonus Hot Tip: Heparin shots (used to prevent blood clots) feel like wasp stings after the wasps were dipped in poisonous lava. I recommend you take them in the shoulder (you have a choice to where they go, so don’t go for the stomach!).

Left to Right: First Ileo bag change; Stoma still to be named; Attempt to escape from the hospital

Day 5:
Progress: By complete surprise, the nurse removed my catheter. I was caught off guard (press the pain button! press the pain button!) and holy cow. It didn’t hurt, but it was rather uncomfortable for that quick pull. Super Ultra Lameness: Saturday was a low point. I was starving and wanted to learn more about my ileo bag, but my assistant nurse was a “floater” from a different hospital just helping out. She didn’t know what the bag was called and hasn’t emptied one in 10 years she said. I was horrified. I needed reassurance from the nurse, not questions. The UCSF nurse group is awesome, so I hope you understand my disappointment with that one loose-cannon nurse. To top it off, my lunch was a little thing of mushroom soup. Mushroom soup? It’s on my Avoid Post-Surgery list of foods. What gives? I was pretty unhappy. I’m glad my mum was there to lift my spirits. Fun Fact: I can’t be disemboweled at this point, or, at the very least, the serial killer who tries to disembowel me will be very disappointed with the results. In your face, serial killers!

Left to Right: Blood clot from JP-Drain (creepy); Stoma swelling is down; Very happy to upgrade in food

Day 6:
Progress: My first full shower! They had to cover the hand with the IV-tubes in a glove, but I had horrible horrible freedom for 20 minutes (no attachments to the IV stand!). Haven’t pressed the pain button in a while. Cleaned my own bag! Finally got a menu! Got solid food! Lameness: Getting up at 4 a.m. to pee. This is a funny complaint, considering that with UC you had to get up every 2 hours in an emergency rush. It’s just weird to get up for a normal reason now : ). Fun Fact: According to the Discovery Channel (which I watched, a lot), horse meat is less fatty than beef. Just so you know. Hot Tip: The food at UCSF Mount Zion is actually delivered from the main hospital on Parnassus. This explains why the menu choices doesn’t exactly fit your dietary restrictions and they can’t pull last-minute favors. This also explained the mushroom soup incident.

Day 7:
Progress: Discharged! Lameness: Didn’t fall asleep until 2a.m. that morning. Walked 6 laps to get tired. Just as I started dreaming about resetting Terminators in each movie and how it would affect the box office for each (yeah, seriously), a nurse woke me up at 4 in the morning to weigh me. Really?! My weight couldn’t wait? The doctors then made rounds at 6, so I didn’t sleep well. Super Lameness: Whoever said laughter is the best medicine is a filthy liar. Laughing post surgery is incredibly painful. A few minutes before discharge, my spirits were up and there was silly talk involving a 90 year old magician, gypsy singers and the movie “Outbreak”. I ended up laughing, which caused so much pain I was on vicodin. Hot Tip: Don’t watch funny shows for a while. It really hurts. This is also a great indicator to tell you what you find really funny (based on my pain level, American Dad turned out to be funnier than Family Guy). Fun Fact: Try blowing your nose after surgery. It’s hard to do.

Day 8:
Progress: I slept in! Home nurse visited, she patched up my JP-Drain tube with a nice water-proof setup. Felt productive. She’ll bring in ileostomy bag samples on next visit (hello, velcro!). Lameness: Home nurse’s paperwork took forever. Thankfully that’s done. Fun Fact: For those with ileostomy bags: iron supplements will turn the stool black, but this is normal. Don’t freak out. Hot Tip: We should convince the ShamWow! guys to make medical supplies!

10 pounds lighter, tagging an Ileo bag and JP-Drain, and wondering how the body reacts to 5 feet of missing organ.

What’s Next:
I have to work on my posture. I can’t straighten all the way out, since my mid-section is still too sore and tight. I also soiled my pants on my first night home. The leakage through the bum is “normal” discharge, but I was caught a little off guard. I have a follow-up next week, and hopefully they will remove the JP-Drain by then (I have to have less than 80CCs of drained liquid, I’m currently at 200 or so, which is still better than the thousands of CCs I had immediately post-surgery). Let’s heal this up already.

Zzz…

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