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)

“The blood markers were more leaning towards the diagnosis of ulcerative colitis rather than Crohn’s disease. How do I interpret these results in light of your history? I am not sure, but these blood markers were chosen by likelihood of association. The way I look at it, if you are responding to current therapy, then we will continue it.”

My favorite part is, “How do I interpret these results in light of your history?” ie:  Um…you don’t have a f&cking colon, how can you have UC?

So much of these diseases are based on location.  Gastrointestinal real estate. Location! Location! Location!!!

So, the more I experience “Life w/ IBD” the more I realize that the experts in the field really know very little about distinguishing these diseases.  I don’t think this means that our doctors are utter morons, I think it means that this disease, UC, Crohn’s, whatever…Let’s just call it IBD, are seriously complex and confusing. Even though the tests they rely on for diagnosis are advanced and very specific, they are still  not perfect.  I mean, how can I have ulcerative COLitis without a COLON?  For all of my years researching and living with this, it was like the ABC’s of IBD to know that UC only lived in your colon.  I’m pretty sure mine is disintegrating in a jar somewhere…

But, does it really matter what I call it?  There are some in the medical community who believe that chronic pouchitis may be a new form of IBD.  Maybe I have that…Maybe it really is Crohn’s, maybe it doesn’t matter???

It just comes down to the power you give a name.  Does it really matter if what I have is Crohn’s or a new manifestation of UC, or chronic pouchitis?  It shows how much we begin to identify with “what we have.”  I really don’t want this disease, whatever it is, to become a part of my personality or my identity, and I know that to some extent, it has.  Hearing that I had Crohn’s was somewhat liberating because it was what I’d always feared the most.  Realizing that it didn’t much matter what you called it as long as it was treatable, was liberating.

This new information is confusing, but also puts it in perspective for me.  I know, without a doubt, that I have an auto-immune disease that attacks my intestines and causes some other manifestations (sinus, arthritis, etc.)  I guess there is some comfort in naming it, but all that does is give it power.

I now realize why my new GI never previously differentiated between CD and UC; he just always calls it IBD.   I may never know what “I have” but I know something now…I’m not going to make this who I am.

These posts might also help out:

• June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• August 26, 2010 -- “My Hole” (4)
• April 5, 2010 -- Home from Surgery #1 (1)