Happy cows come from Michigan...and are named Jackie

I’ve made a new update on my blog, Blood Poop and Tears, about my second surgery out of three, and how I’m struggling to get healthy enough for it even to happen. Ugh. Being fat is stupid.

Here’s a preview.

“So guess who has set a date for surgery #2? Yea, its me. Shabam! I was so excited I almost crapped my bag.This is far more exciting than setting a wedding date…though faaar more terrifying. You think committing yourself to someone for the rest of your life is terrifying…try letting someone cut you open and mess with your poop chute.

So while this new surgery date is awesomely excitingly rad…its also SUPER depressing. The reality has set in that I’m wicked fat.”

Check out the rest, and I’m going to do another post here shortly with some poop bag reviews. I’ve tried a lot and have some good stuff to share. Thanks!

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)

This is not me in this picture. But it was so ridiculous I couldn't pass it up.

I’m so over this colon. Its like a pair of jeans that I’ve had forever that I refuse to get rid of. They were great and useful, but now they have a ton of holes in them. But for some reason, I’m hesitant to throw them out. Granted throwing out my favorite denim is a tad different than removing my colon, but you know, same principal. With all the problems and discomfort that I get from this dang thing, you’d think that I’d be more than jumping at the bit to get rid of it. But I’m not. I’m not at all. I’m more than pumped about the possibility of getting rid of it and feeling healthy and maybe getting part of my life back, but the road to get there just seems so daunting. It feels endless. Not only does it feel endless but the road has a damn colostomy bag involved with it. The road is gross. The road is filled with potential problems and questions and uncertainty.

Can you tell I like metaphors?

I have been pondering this surgery for a few weeks now and in that time I have talked to a few nurses and asked a few people at various stages in their surgeries a barrage of questions. I’m pretty sure my last Q an A session ended with “Did you wake up with a butt tube?”  So I’m not afraid to ask questions, but am I a little afraid of some of the answers? Affirmative.

Every time my stomach grumbles, I think about chopping old the ‘ol colon. Every time I sit on the toilet. Every time I second guess eating something. Every time I worry about the location of a bathroom. Every time I am humiliated in one way or another by this disease….I know I need this surgery.

Much like many people out there who are in my diseased bowel shoes, the surgery sounds like a god send. It sounds like an answer to all of our problems, aside from one thing. The one thing that makes me and I’m sure others second guess the WHOLE thing. The one thing that makes me consider living like this for the rest of my life because I can’t even fathom it. You know what I’m talking about. I swear I could just not even say it and we’d all be on the same damn page. But for those of you who are reading this with your head cocked to the side in confusion….its the colostomy bag. Yea, that thing. That super gross thing that makes us all feel disgusting and subhuman. It terrifies me. Its ugly, its stuck to you, and its def a damper for intimacy. I mean seriously, I know people get around it, but how? How do you even think about sex with that thing attached to you.

Yea I said it.

I think I’d probably swear off sex for the entirety of stage one of my surgeries. I cannot imagine living like that permanently.

Yea, I said that too.

I’m not one for sugar coating. I still don’t know what I’ll do just yet. You know, through all of this, since the very beginning of diagnosis I have told myself it can’t get any worse. And without fail, every single time, it has gotten worse. I have had the most ridiculous UC journey, that if it wasn’t me, I might point and laugh. (Eh maybe not, but I would probably talk about me behind my back). It almost seems fitting that I go out with a bang. That this redonkulous ride called UC would end with the removal of a large organ and the attachment of a colostomy bag. Everyday, slowly but surely, I’m getting over this…but I’m not gonna like it.

P.S.  I’ve found the overwhelming urge to write about this crap probably more than usual. So I’m gonna do Jpouch double time and update every so often here and more frequently over here:  http://BloodPoopTears.wordpress.com/

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)
• February 25, 2010 -- Commenter with Questions (13)
• December 20, 2009 -- New website for gay people who are affected! (5)

After that the goal was to get me on an effective therapy to get my UC under control. I was and have been on steroids since June of ’09 and have tried Asacol, 6-MP, and Methotrexate. I can’t take any of the biologics because of my MS. My UC has never been in remission since diagnosis and has proceeded to get worse the last few months. My home GI referred me to Cleveland clinic to talk to a specialist who gave me good advice and advised that I should consider surgery. My home GI them told me that the doctor at CC was an idiot and that no surgeon would ever preform surgery on me. Needless to say  I was a bit conflicted.

I met with Dr. Remzi last Monday in regards to surgery against the advice of my home GI. Dr. Remzi was great and urged me to consider surgery. After throwing myself a pity party for a few days, where my only guest was myself…and I didn’t even get cake….I decided he was probably right and I should schedule my surgery. He said most likely he’ll be doing a 3 part surgery over 9 months with my first scheduled for March 25th.

So I’m just at the start of this journey…its going to be a long super sucky one…but I know there are a lot of you out there with me.

oh. Ps. I’ve attached a picture of what I USED to look like…you know before 8+ months of steroids….I hope to revisit this again someday

p.p.s. I make typos a lot. Deal with it.

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• February 13, 2010 -- Take a walk in my shoes (93)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)

The Pre-Op:

The pre-op went well as far as I could tell; it was a lot unexciting waiting mixed with even less-exciting waiting. I had the tests done, vitals checked, and got my stoma marked:

Left: Stoma marking. Right: Me leaving surprises for the surgery team.

The nurse who marked my stoma made the extremely bad judgement call of sending me home with a marker designed for surgeons (see image above), but she also slapped on an ileostomy bag for me to get used to the placement and feel. I’ll be honest, it wasn’t that bad. I’m a small skinny dude and was worried that I had to start wearing XXL t-shirts to cover up the baggy (I’ll look like I’m preparing for pregnancy), but you couldn’t tell when I was wearing my “normal” clothes! I was very happy with the test run… until I tried to take it off. You see, the glue went on my body hair. Glue + Body Hair = Brevin’s Hot Tip of the Day: Softly sobbing tears over the area doesn’t really help as much as you would hope.
The CAT Scan went Ok I think, except for the three bottles of prep liquid I had to down. Dear Medical Science, can’t you make horrible prep liquids taste like grape soda? Is it that hard? The CT Scanning machine itself is pretty cool. It’s a giant robot donut that spins around you, and yes, having one in your living room would be a great conversation starter. Some of you might be irked by my simplification of the technology, but CUT ME SOME SLACK! STRANGERS ARE ABOUT TO SEE MY INSIDES!

The New Painting:
This piece was a coping mechanism to embrace the idea behind having an ileostomy baggy for three months, so I named it “3 Months”. The ileostomy bag in the middle of the painting is life size, but for some reason the painting’s colors look a bit different in the picture. Yes, the plumbing is inevitably leaking : )

"3 Months", 20" by 24", acrylic and ink

A Question For The Community:
I’m reading on the site about people who are having long term complications after takedown. I know it’s not a cakewalk, but how common is severe discomfort for people who had the j-pouch? I’m just curious if everyone is having discomfort, or are we only hearing from the cases that need help. I’m hoping to get my quality of life back, so I hope you understand when I get nervous reading posts like these. Also, you refer to j-pouch BMs and how people have to adjust to them. Can you please clarify? What do I need to adjust to and what makes j-pouch bowel movements different? Thanks in advance!

The Take Steps for Crohn’s & Colitis 3K Walk:
Last but not least, a charity walk specifically for us. Stolen from their pamphlet: “This walk raises much-needed dollars to fund cutting-edge research and to support patients and families in our area. Take Steps will be held on June 7, 2009 at 5pm in San Francisco at Justin Herman Plaza.  There will be free food, drinks, a live band, and kids entertainment! Everyone is welcome to join in the fun and help us raise awareness about Crohn’s and Colitis.”
I’ll be there, limping along (or doing backflips on a unicycle while lit on fire, depending how recovery goes). I’m there to support the community, so if you’re in the area: http://online.ccfa.org/goto/teamucsf

This is the official logo/banner, not a personal art project

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)

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)

Thank you all at jpouch.net for providing a source of insight and sense of community to these conditions I thought were non-existent outside of my own experience. Knowing there are people who can relate to your circumstances is a much needed relief. And I mean exact circumstances, not ball-park figure guesstimates like “oh, sometimes I get tummy aches, is that like your thing?”, well intentioned as they may be. This support is a blessing I can’t thank you for enough.

My name is Brevin and I want to punch my Ulcerative Colitis in the face.

It’s not like I just met Colitis the other day, hitting on the girl I was going to ask out and now I want to engage in fisticuffs. No, we go way back. This is a scuffle years in the making. I was diagnosed back in early 2003 and I dealt with it pretty well, all things considered. We would sometimes have slap-fights and call each other names, but nothing that made me cry foul. But given my current condition, ongoing medication, accompanying side effects, and constant need to use the bathroom, it… it gets old. It does. I miss my quality of life. I have had so many medical complications because of my Colitis that I’m on a first name basis with the ER. That’s not something to brag about. I’m at the point where I consider the rest of my life and where I would like to see myself and my well being. I don’t like what I’m seeing with Colitis’s smug face in the picture. But I know the cure, that steak through the heart of the vampire Count Von Colitis, is surgery. Who’s afraid of surgery? Me.

Back in the early days of my UC diagnosis, my GI referred me to Stanford to go check in with a surgeon. Wow. That was the most horrific sync up ever. The doctor was cold, blunt, and scared the crap out of me (being a Colitis patient, that doesn’t take much effort, but still). I left that meeting convincing myself that surgery is not the way to go and I swore that I would try all of the possible alternatives before even thinking about the surgeon’s knife. Well, here I am. All alternatives? Check. Maximum dosage? Check. Progress with my condition? Nope. In my own cowardly defense, there weren’t supportive communities like www.jpouch.net back then, and if there were, I didn’t know about them through utter stubbornness.

Recent events with my health have me seriously considering the surgery. I’m using this opportunity to share my experiences, starting at the decision-making process. I hope these contributions help others in the same circumstances, even if only in the smallest of ways. Getting to write these thoughts down are therapeutical in a weird way, and hopefully current UC patients can relate. It’s a tough decision. It’s not something you sleep on; it’s something you hibernate on. I appreciate your support and I’ll share as much as you would like to know.

Thanks.
-Brevin

These posts might also help out:

• February 19, 2010 -- Blood, Poop, and Tears (3)
• February 8, 2010 -- A little insight on my insides. (13)
• July 20, 2011 -- 2 Years Post TakeDown (6)
• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)

For those of you who have had takedown surgery, how will I be feeling the day before surgery? I’m assuming I’ll be on a liquid diet but I haven’t gotten all the presurgery info yet (I have a pre-admitting appointment on January 19th).

These posts might also help out:

• January 4, 2009 -- Planning (5)

Mark had a two step surgery.  Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction or in doctor talk Ileal Pouch Anal Anastomosis (IPAA) or Ileoanal anastomosis (J-POUCH to us common folks). with a temporary loop ileostomy until the jpouch heals (’takedown’ is 2nd surgery).   See J-Pouch Illustrated to understand how the temp ileo works until takedown is done.  His surgery time frame were:

July 2007 – lapro IPAA.

July-October – Lived with Temporary Ileo.

October 2007 – Takedown surgery, temp ileo gone.

We are asked to clarify why it seems the U.K. and U.S. do surgeries different. We don’t have the technical reason, but this is how we explain it when asked:  I’m not sure in the U.K. why it is done in so many steps. I do know in the U.S. that some people have one step, two step or three step depending on their health status (really sick people have 3 steps b/c their health can’t handle the more advanced surgery all at once so they do it in pieces to help the body heal).  Also, doctors do the steps via what their training is and what they are comfortable doing. Here we have two camps: surgeons that do lapro and those that do open surgery.  Since we’ve had some international attention to the blog, we’ve learned that the surgeries although the same really do vary between countries.

Photo via: J-Pouch Illustrated

These posts might also help out:

• June 19, 2008 -- Most FAQs: Elective Surgery? (0)
• 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)