J-pouch Life » laproscopic

The Post-Op Follow-Up Round-Up

Brevin — Sat, 27 Jun 2009 07:27:28 +0000

I had my post-op appointment Friday over at UCSF. My surgeon saw me as I came in through the hallway and said hi, so my natural reaction was to impress her with an impromptu Irish jig. My reasoning at the time was to show her I’m perfectly healthy (note my joyous footwork!) and am so totally ready for the take-down surgery. I think at this point I just embarrass her in hallways.

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 First Surgery: One Month Later

Brevin — Thu, 11 Jun 2009 05:15:59 +0000

It’s been exactly a month since the divorce. To clarify: Divorcing from my colon. My colon doesn’t phone, it doesn’t even write letters to me. I guess it’s over. The break-up was pretty bad I suppose, considering they had to sedate me for all the pain. So here we are a month later and I barely miss that drama queen of a diva. I have a few questions scattered through out the update, and I would appreciate any input : )

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)

Let’s just call it … IBD

Lizz — Sat, 06 Jun 2009 15:15:12 +0000

After receiving an interesting letter from my new GI yesterday, I’ve found myself in a rather contemplative mood. I was diagnosed with unquestionable serious UC when I was 16. The GI who diagnosed me recommended immediate surgery to remove the colon. I declined, preferring instead to take meds for years and try my hand at that. They sort of worked for a while, but a time came when surgery was the only option, so I had a successful 3 step laproscopic surgery. Many tests were performed before the surgeries to be sure I indeed had UC and not CD. All supported the UC theory. Post surgery, I had problems with stricture and “pouchitis.” However, the pouchitis was above the pouch and unresponsive to antibiotics, so I ended up with a diagnosis of Crohn’s. This rocked my world, and not in a good way. Philosophically, I finally came to realize that it didn’t really matter what they called it, it just mattered that my symptoms could be treated enough to allow me a “normal” life. So, this letter yesterday sort of pissed me off because it said, essentially, that the blood work he performed said that it looked like I had UC. I thought we’d already been though all this about a billion times…

“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)

The Surgery Attack Plan: Part 1, Volume 1

Brevin — Tue, 14 Apr 2009 04:05:55 +0000

May 11th. That’s my surgery date. Now I know what you are thinking: “But Brevin, you accredited rocket scientist slash professional gunslinger, isn’t the Lost Season 5 Finale on May 13th?” Why yes, yes it is, but my priorities are shifting around. May 11th also gives me enough time to plan everything I need to address, like flying my mom out, taking care of the teams at work, and breaking up my 27 year old love affair with Kentucky Fried Chicken (it’s not you, it’s me. Although, you really let yourself go when you dropped the TransFats. Just saying.).
I had my surgery consultation this past week at UCSF and I was fully prepared going in. I had medical records, a collection of color-coded questions broken down per category, you name it. But the thing that helped me out the most going in was doing research and getting support from this community. The surgeon super squad pretty much told me everything that I thought I was going to hear and yeah, while it’s still overwhelming and scary as hell, the preparation lessened the shock value. I received a lot of pamphlets on what to expect, what the surgery entails, how to care for it, etc. I haven’t read all of it yet, but I’ll bet money it’s better than Twilight fan-fiction.
I’ll try to summarize as best I can on what they plan on doing with me. I’m still digesting the details, but this is what I gathered so far regarding the first surgery:

I’m Getting a Loop Ileostomy:

Poop comes out here!

I’m not quite sure why some people get an End Ileostomy and others get a Loop Ileostomy, but I’m getting the Loop one. I bet they explain in my information booklets, and Eric mentioned that it’s usually based on the patient’s health and urgency. I doodled the two types for review (and conveniently did not include poop in the drawings, free of charge).

Where The Scars Will Be.
It seems that I’ll get a few lapro incisions with a 4 centimeter horizontal slice right above the pubic bone, similar to what Mark had. I’m amazed how medical technology can remove five feet of organ with these tiny scars. The more I think about it, the more I get creeped out by the mental image. The more I get creeped out, the more I appreciate the fact they can actually pull it off. My biggest concern was the already-present scar on the right side of my stomach (had it since I was a baby), but the surgeon said it shouldn’t factor into the surgery since I’m male (I guess this might have been a slight obstacle if I were female). I don’t know where the ileo-baggy will be placed yet, but at least I mentally blocked in the surgery scars:

The J-Pouch in Surgery One.
I’m set up for a two part surgery. The first will remove my large intestine and create the j-pouch, with the loop ileostomy configured for my ileo-baggy. I then heal up for three months and go for the second surgery, which should be the Take-Down.

What’s Next.
Pre-op is May 5th. That’s when they will check my tummy to see where the ileo-baggy will fit best. I’ll also be going for a CT scan of my small intestine to confirm that it’s not Crohn’s. Until then, I’m still shooting for my 2,500 to 3,000 calorie diet and trying to increase my protein intake. I’m allergic to peanuts so I can’t eat most of the protein bars, but I did find a giant box of chocolate chip Cliff bars at Costco. I also found an industrial size tub of mayonnaise, got some jerky samples, and regretted both 10 minutes later.

These posts might also help out:

June 27, 2009 -- The Post-Op Follow-Up Round-Up (14)
June 10, 2009 -- The First Surgery: One Month Later (9)
June 6, 2009 -- Let’s just call it … IBD (8)
April 1, 2009 -- My Tongue VS Surgery: Round One (18)

UC to J-Pouch Surgery

Mark — Sun, 11 May 2008 09:15:32 +0000

Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedown’ is 2nd surgery). Step 1 was done in early July 2007 and he was in the hospital for 5 days . Thankfully, he experienced no complications from this major surgery. Step 2 surgery will happen after step 1 recovery. See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal

Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery. Many dietary and herbal options were tried as well. Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets. It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted. The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy. This has been the best decision for his health and quality of life. Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..

In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency. Then the related symptoms from those main symptoms were of both physical and emotional in nature. The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch). Go to this site here if you want more info: J-Pouch Illustrated. And Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.

These posts might also help out:

January 25, 2009 -- Jessalynn (10)
December 28, 2008 -- Sarah’s Permanent Ileostomy (8)
November 23, 2008 -- HI EVERYONE! (3)
June 17, 2008 -- Getting Healthy Story #3 – Jeff (0)