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)

http://grantsucstory.blogspot.com/

These posts might also help out:

• June 10, 2009 -- The First Surgery: One Month Later (9)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 3, 2010 -- University Research on Jpouch Social Support Sites (7)
• February 25, 2010 -- Commenter with Questions (13)

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)

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)

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• January 4, 2009 -- Mark’s 15 Month Jpouch Update (16)
• June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)
• June 16, 2008 -- % of UC patients have surgery (0)

Chewable multivitamins are better absorbed

After I had Step Two of my three surgeries, I was expelling waste rather quickly. Too quickly, it seemed. I was afraid I couldn’t adsorb anything so my surgeon recommended chewable vitamins. Although they seem childish, you can absorb them better because you’ve chewed them first!

Even now, after takedown, I still take 2 chewable vitamins a day, and, if I feel I need it, I take a chewable Imodium as well.

And, in case you’re wondering about the safety of taking Imodium after takedown (this is important, you should NOT be taking imodium if you are having a flare without your doctor’s approval), my surgeon said that some people take it 10 times a day! If you take it twice a day, like Mark, this news should make your morning and night routine seem a little better.

If you are concerned about your vitamin absorption, then, don’t be shy, grab the Flinstones and chew away!

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• January 6, 2009 -- Learn From Experience: Easily Find The Right Medication (0)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

Below are some photo updates at the 15 month point about what my scars look like. The little bulge on stomach around the ex-stoma area seems to be settling down and not as bulbous as it was in the 9 month photos.

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• November 10, 2009 -- 6 Months Later: Jaypouchirifical (22)
• January 28, 2009 -- Meet My Hernia (2)