J-pouch Life

I’m off for the week to New York. My wife and I will be riding in the “five boros” bike tour where they close down the streets of NYC and thousands of bikes take to the road. Am I bragging? Yes! But dammit, I’ve been through hell in the last year, so I wanted to let you know that in just a few short months after my final surgery I’ve been skiing, biking, hiking, walking, running, camping, snowshoeing, gardening, building houses and building websites.

Sure, I’m a little concerned about sharing a hotel room with 4 other people (I still get up on average 2-3 times a night) and some other things, but hey, you gotta live your life. So here’s to it, see you next week! Cheers.

Having medically induced insomnia is unpleasant (you’re a jerk, Prednisone). Sitting there on the couch, wide-eyed at 2 in the morning, you can’t help but think of random, stupid things. I wrote some of them down, mostly to remind myself that people shouldn’t make serious decisions that early in the morning:

- I must wear a suit when having my first bowel movement with a J-Pouch.
- Kangaroo + Pouch = Super Long Jump Ability, Lead Role In Movie “Kangaroo Jack”.  Brevin + J-Pouch = ??? What super power and movie do I get?
- Mental Note: Learn the language of the kangaroos, start bonding with these pouch brethren.
- If you have UC, die, and come back as a zombie, will you be a zombie with UC? This applies to all medical conditions. I’ve never seen a zombie with asthma.

Lately I’ve been using the insomnia sessions to paint. Inspired by the Healing Art post, I’ve been painting things J-Pouch related. When you’re pre-surgery, creating art of any kind is very therapeutic and I highly recommend it. It’s distracting and productive at the same time, all while stalling my inevitable panic attacks. Below is my most recent finished painting. I thought some of you might appreciate it, since it’s pretty applicable to this community:

"The Surgery", 16" by 20", acrylic and ink

This piece is currently displayed at the Collective Individual gallery in Vallejo, CA.

So part 2 of my 3-part surgery was scheduled for March 4th, 2009.  As before, we headed out to Ohio two days before the surgery to stay at my aunt’s. On March 3rd, we went into the hospital for the pre-surgery appointments, which included a check-up, EKG, bloodwork, nursing check-in, and a talk with the doctor. It was during this talk that we went over the J-pouch procedure, but my mom brought up the ileo-rectal anastamosis (IRA), which was a procedure he had talked about at my one-month checkup but didn’t think it would have been an option. At that one-month checkup he did a quick scope to see how things were and when he looked over his notes of that day, he started to think that maybe the IRA was a good option.

He asked about the output from my rectum and said that I only had mild colitis in my rectum at the checkup but that it could have been healed over by now. I was starting to get excited, because this procedure seemed like it was going to be easier. An ileo-rectal anastamosis is where they just connect your small intestine to your rectum. With the J-pouch procedure, they take the rectum out, so it can’t be done that way. But few people are able to keep their rectum and so a IRA would seem like a good option for them. Since I had dysplasia in my rectum, I would normally not be a good candidate, but since he said I was young and had good overall health, he didn’t see the dysplasia coming back very likely. Plus, he knew I was gay and was worried about my lifestyle, so with IRA, I would still be able to have sexual intercourse. This was like a dream and I started to cry in his office, because I couldn’t believe that this was an option for me and that I would be able to feel 99% normal and not lose any part of my gay identity.

He did say that if the colitis came back bad in my rectum or if I kept getting dysplasia, that I might have to get the J-pouch in the future, but since I was young it could buy me 5, 10, or 20 years. I was totally fine with this and just relieved at the opportunity. Also, you can start using the IRA right away, so they were going to take down my stoma and let my bowels start working again. So, one day before my planned J-pouch procedure, we changed everything and set up to do a totally different surgery. It was a little un-nerving at first since I had prepared myself for the J-pouch but was exciting to know that this would be my last surgery and I wouldn’t have to get a third one!

So the next morning came and I got myself ready and said goodbye to my stoma. We checked in for surgery and did the usual IV setup and heparin shot and all that good stuff. I was wheeled outside the operating room and asked the usual questions about allergies and anesthesia problems. But when they asked me what procedure I was getting, I wasn’t totally sure which one they were doing, so I had to list both just in case. I was brought it and laid on the table. That brought about my favorite part of surgery, which is right before they give you anesthesia, because you are still conscious, but you know that any second you are going to feel extremely relaxed, then unconscious, and then wake up what feels like two seconds later and everything that you’ve stressed about for the past several months is over with. To me, it’s a great feeling.

And that’s what happened. I woke up in post-op and immediately felt my stomach, because I wasn’t sure which procedure they were able to do, so I wasn’t sure if I still had my stoma or not. When my hand landed on the area, it felt smooth……it was gone!!! That means they were able to do the IRA and it was successful enough that I didn’t need to stoma anymore. This was the best result I could ask for! My mother came in with my aunt that we were staying with in Ohio. She came up to me and said “I got bad news…..you’re gonna have to go to the bathroom again!” Haha, it was her crazy sense of humor trying to tell me the surgery was a success.

My mom with me in the hospital room.

I was brought to my hospital room about an hour later and setup with the usual things I need. Ice chips, the breather that you have to breath in 10 times every hour to keep your lungs clear. It was harder this time, since the lapryscopic pain was in my chest and diaphragm. The first surgery gave me muscle pain in the shoulders, but I guess most of it was in my diaphragm now and that made the breathing apparatus harder to do. I also got the heparin shots twice a day as well.

Using the breathing apparatus to keep my lungs clear.

Walking around the halls with all the machines and tubes connected to me.

I was dying to look at the new scars, so when they changed my bandage, I got my first glance. It was weird looking. The doctor told me, they couldn’t sew it shut, since it’s a high-risk of infection area, so they had to sew the underlying muslces, but the skin was left open. So it was like a hole in my stomach. It was about the size of my belly button and looked like a gunshot wound. I was really worried that it was going to leave a big scar, but the doctor said it would heal up pretty well.

The hole in my stomach.

One of my least favorite things was that I had both a catheter and a rectal tube. The catheter was fine, but the rectal tube was a little uncomfortable. I had thought that it was taped to my butt, because I felt a little tug,  so when I went to adjust it, I found that it was sewn in! Not sewn into the anus, but the tube was looped onto a stitch that went into my butt cheek to keep it in place. Haha, that made me very nervous to move. On the 3rd day, I got the catheter removed, but the rectal tube stayed in. I noticed that day that I was feeling a little bloated and asked for the rectal tube to be removed. They told me it would help pass things and should be kept in until I was on semi-solid food. I had that feeling all day and was not even hungry. I started feeling really tired and randomly slept all afternoon, which was not like me at all. By the time I woke up, I knew I reallllly had to go to the bathroom and so I got up and went to the bathroom, thinking I was going to need to do something about this tube. I barely made it to the bathroom in time (all that darn equipment and tubes you’ve got to take with you) and I just started going to the bathroom around the tube. It was like it was blocked and coming out anyways. Nothing was even going through the tube. I felt a little bit of relief and told my mom to get a nurse to take the tube out. Someone came in and snipped the suture and pulled the tube out, which made me have to go to the bathroom again. I went right back in and ALOT of stuff came out. It was a major relief and felt like I lost 2 pounds. It was mostly liquid, but no blood or anything.

With all that done and with me off the morphine and on solid foods and going to the bathroom fine, I was cleared to go home the next day, which was Saturday. I had really bad sleep Friday night since it was my first night without the tube, I was going to the bathroom like every hour. My new digestive tract was trying to get itself adjusted and just wanted to keep being used! It was kind of annoying, but I knew to expect it and I also knew it was going to get better. They said I should erratic bowel movements for about the next six months.

Home from the hospital with my bandage still on.

The next week was me going to the bathroom about 10-20 times a day, but it progressivley got slower and once I started experimenting with imodium, it helped alot. As for the scar, it formed a membrane within a couple days and then just was healing faster than I thought it could. It eventually became a scab and thats when I could stop wearing the bandages. There were no other cuts from the surgery besides the belly button, so it was a much easier recovery than the first one. I was pretty much able to get up and walk around from the time I got home from the hospital. And there were no blockages or problems with food, so I was happy with that. I would say my recovery time was really only about 2 weeks this time. I was still on a weight restriction, and couldn’t start work for 4 weeks.

As I write this, almost 7 weeks posts-surgery, my scab is gone, I go to the bathroom about 4-8 times a day, I’m back at work, and feeling better than ever. I had my follow-up appointment last week and the doctor said everything seems fine. I need to get annual scopes to make sure everything is still good that there is no colitis or dysplasia, but other than that, I can finally say that my life is normal. At least me health is, I can’t account for the rest of my life! Haha.

One week post-surgery.

One month post-surgery.

Seven weeks post-surgery.

Seven weeks post-surgery. Mostly healed!

Hello jpouch.net readers,

We are pleased to welcome Christine and Ricardo as bloggers to our jpouch.net family. Ricardo is our resident FAP jpoucher, and Christine is his amazing wife. Together they documented his story, surgeries and experiences. They will be sharing their complete story with us, but in the meantime a brief introduction is in order. Here’s a warm welcome!

The Chavez Family November 2008

It was the middle of December when my husband went to his yearly physical fitness check up, which is required for his job. This time, however, he actually mentioned his family history Read the rest of this entry »

Okay, seeing as I am the resident Crohn’s+Jpouch expert, I feel required to “chime in” in response to the many-questioned thread in response to Brevin’s very informative (always hilarious) recent post.  Many responders seemed concerned about the pre-surgery tests that would rule-out or possibly diagnose Crohn’s disease.  The Prometheus Test, being one of interest.  The tests for markers for Crohn’s disease (CD) are never 100%.  For that matter, NO medical test is ever 100% accurate.  I had test after test to be sure I didn’t actually have Crohn’s, both before the surgery and after the step 1 colectomy. The pathology of my colon was “textbook UC” as was my history. Then I had MORE CD tests after I started developing problems like “pouchitis” that wouldn’t clear with antibiotics and strictures that required more surgery to repair. The tests were always negative for CD, which was a huge relief to me, except for the fact that they turned out to not mean much. It wasn’t until they saw that the inflammation/ulcerations were above my Jpouch, still untouched by antibiotics, that they realized it was CD all along.

These diseases are very similar and very complex, and even the experts will admit that they do not know much about them. Read the rest of this entry »

It’s Friday, ask us Jpouchers your toughest questions and anything you’re too embarassed to ask your surgeon. Be well!

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.

Alright, I’m just bragging now – but it is INCREDIBLE being a healthy couple again!  I simply appreciate every thing so much more now that Mark is healthy, it is like I am more alive and aware because I know now what it means to present in every moment in life.  You know, to cope with living sick for so many years, I learned to just be present because if I tried to look at the big picture it was too overwhelming at times, especially in those sick stages where it seemed hopeless to get him healthy (i.e. repeated failure of medicines prior to surgery decision, temporary and incorrect diagnosis of Crohn’s/colitis blood markers when prepping for surgery, health insurance complications, etc…).  So for me, I got a point where it was a day by day coping with the disease, and that skill  has benefited me today by allowing me to be really present in the great moments that occur now!  For me an unexpected benefit of learning how to cope with long-term and serious chronic disease, is learning how to Read the rest of this entry »

Ginger, my favorite resident at UCSF, checking on my NG tube. This tube isn't fun but will make you feel a lot better if you have an ileus.

First, I would like to give props to my fabulous husband for coming up with the name of my jpouch story. It isn’t quite as cool as ‘No colon and still rollin’ but still kind of catchy! This is just one more thing my supportive partner does to rock my colon-less world!

My initial journey with “Colin the Colon” began in late 2005 when I relocated to the west coast and a new doctor diagnosed me as having a gluten allergy after I complained of frequent digestive problems and extreme fatigue. For the next two years I changed my diet drastically but saw minimal to no improvement in my digestion and became more and more fatigued. Fast forward to fall 2007 when I could no longer dismiss my GI symptoms and fatigue as food allergies as I started to bleed with each bowel movement, experienced constant diarrhea, lost weight rapidly, and had trouble with nausea and vomiting. I finally got a referral to a GI specialist who put me inpatient at a local Oakland hospital while I waited for a colonoscopy. The pathology came back as moderate pan colitis. I hadn’t really done much research on the disease as we were early in the diagnostic process; however, I was told that with medication and dietary modifications, I would be fine and live a normal life. Perfect – I could pop a few pills a day and all these terrible symptoms would go away. If only that were the case.

Read the rest of this entry »