EXAM: J-POUCH FITNESS

Next test to pass: J-pouch Fitness

Matt & I left this morning for an imaging appointment at the hospital. Today we anticipated a test of the fitness of my j-pouch, ie, newly created rectum, over one month since surgery. Assuming all goes well, the surgery on Wednesday will reverse my ileostomy and reconnect my lower plumbing.

j-pouch-drawing

j-pouch, new rectum

I began fasting after dinner last night. I was a little frustrated at the tardy message on my cell phone this morning from the imaging office telling me that I must fast AND do a “prep kit” — was I told about any prep kit? No, no instruction on that! Fortunately, when I called the office they permitted the exam anyway. Thank goodness, because Matt & I had already driven half way there. (Later, I learned that this prep kit was only an at-home enema – and what’s that going to do? I haven’t been using that part of my body for six weeks. There’s nothing in there. Note: do your homework, people, when it comes to medical care some things asked of you are just unnecessary. And sometimes not enough, so a patient has to really be ‘on’.)

I digress… I checked in at the hospital for the the X ray. Results for this contrast exam will tell me how I healed from the last surgery, specifically how the j-pouch healed, whether there are leaks or breaches.

gastrografin-contrast-xray

Contrast X ray

This one is an enema of  gastrografin, a solution that gets injected into my rectum through a tube with a balloon at the end of it. The balloon keeps the tube in place, and the solution floods my GI system, and shows any leaks or breaches in the surgical seams.

The good news came as I was watching real-time my skeleton and intestines/colon on a TV screen. The imaging tech said, “Nope, no leaks. Everything looks fine”. The assistant tech, named Fabio (I kid you not) began undoing the tubes.

“Ok,” Fabio said, “Here are some fresh robes, a stack of towels and your clothes. When you get up, some people drip down their legs, so use these towels when you walk over to the restroom.” (I had my own private bathroom for an hour).

“How long does it take for this stuff to come out?” I asked, wondering how long I would be sitting on the toilet.

“Oh it varies for people,” he replied. Of course it does. “You can stay in the restroom if you want, or go into the dressing room”. Ok…

What he didn’t tell me, that I didn’t know, is that it doesn’t all come out right away. When it stops draining, there will be more. I got as much out as I thought I could, got dressed, and said goodbye to Fabio. I walked out to the lobby and called Matt to pick me up.

THEN the cramping started. I knew there was a restroom near the lobby. I ran in there, thank goodness no line!! Some more draining. I finished and moved back to the lobby. More cramping… back to the restroom, no line. Again, back to the lobby. Cramping, restroom – this time I couldn’t make it and leaked in my pants. I cursed Fabio the whole time for not educating me… Argh! By the time Matt got there with the car, I was crying from frustration, discomfort and concern that I would leak in the car. But the urgency had dissipated. Still I was evacuating liquid all day, although less and less.

With the news of the healed surgery, I will soon exchange a bag for a pouch, or an ostomy for a j-pouch.

And with that, a mix of relief and anxiety over how the j-pouch, ie. brand new rectum, will work for me.

fabio

Fabio

COLON TALK

2/26/12 Sun AM

This morning I set up an online profile on the American Cancer Society website, WhatNext.com, and my first post went like this:

“Whee! I’m on!

Yeah, ‘Oh no‘ is right. What the heck? Ask any of my friends or family and they’ll tell you they are just as surprised as I am about the cancer results. I am 38 years old, healthy as an ox, fabulous lifestyle with good diet, exercise habits and low stress. So, what gives?

All evidence points to genetics. I have a strong family lineage of colon cancer, colitis and IBS, which I am learning all about right now, unfortunately. I am not yet officially diagnosed, by the way, but the colonoscopy results were pretty telling.

It’s 4 days total until my official diagnostic results are available, so my fiancé and I have had lots of time to think and swap stories with others. There seems to be so little attention on colons, and that part of the digestive system; people just don’t talk about it! They are afraid of and embarrassed by their colon/rectal region. Societally, we don’t talk about gas, bowel movements, discomfort, sounds, smells, frequency, etc, etc, you get the idea. It’s all taboo! Why! If more people discussed this incredibly valuable part of our anatomy, wouldn’t there be more education and therefore prevention of cancer and other ailments? YES!

At the beginning of our relationship, my boyfriend (now fiancé) and I were discrete about our colonic behaviors, like everyone else. Over time we just became more accepting and open about our digestion, yet still respectful of each others’ space. If one of us farts, we just open the window and just say, “Good onya, Honey! Get it out!”. And really, better out of ya than in ya, right? This openness and self-observation lead me to eventually get my colonoscopy exam (a whole 15 years earlier than medical recommendation), which turned up a malignant cancerous mass.

Here is an excerpt from an Oregonian article illustrating what makes our society colorectally shy:

“You don’t hear nearly as much about colon cancer as you do about breast cancer or lung cancer or prostate cancer,” he says. “Why? It’s all about the poop. People don’t want to talk about their butts. Have you ever seen a brown ribbon campaign?”

– Jay Lake, cancer survivor, blogger and science fiction writer

“Unfortunately (colon cancer) is a huge source of cancer morbidity, and it gets frightfully little press and is sort of underfunded. I’m not sure why. Maybe because it deals with bowel issues the culture is reticent to discuss. I certainly agree with Jay that there’s not the degree of cultural support, advocacy and marches like you see with breast cancer or prostate cancer.”

– Dr. Kevin Billingsley, the chief of the division of surgical oncology at OHSU 

So there you have it. My advice? Don’t be so afraid or secretive! It only encourages other people to be so, then where are we? A society in denial of a real health problem. All of us have cancer naturally occuring, and our bodies are fighting it off successfully all the time. But when our bodies get overwhelmed, the system breaks down, and the cancer cells get out of control.

Most of us will experience cancer ourselves in our lifetime. Remember, the colon is a PART of our BODY, everybody has one (‘cept for those who had theirs extracted), everybody has problems now and then, but we don’t necessarily know what NORMAL activity is and what’s not normal. I didn’t know that my problems were not normal. I just lived with the discomfort thinking it would naturally pass, as a phase. The same story I heard from my brother and my cousin (who recently had his colon removed from ulcerative colitis infection).

What could I fear? After all, I am young and healthy!”

We think humor needs to be injected into the topic of colon health to encourage people to pay attention to theirs.

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