Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, December 8, 2012

The Pouchogram

  anastamosis = surgically attaching two parts together through either hand-sewn or stapling techniques
  loop ileostomy = when a loop of small intestine is brought through the abdominal wall to create a stoma for the elimination of waste
  takedown = surgical reversal of the ileostomy in order to hook up the j-pouch for use
  ileo = short for ileostomy  

Yesterday morning I had my pre-op appointments to examine whether my j-pouch is ready for takedown.  It's more of a precaution really.  Since I've had no sign or indication of any complication, we all assume everything has been healing up as it should, but they need to double check to make sure there are no leaks in the "new plumbing" before they "switch on the water main" so to speak, or I could end up with poo leaking into my abdominal cavity - no good!

My appointment with the surgeon was quick and easy.  She explained what the second surgery would entail: she would cut around the stoma, and if everything looks good and there's not too much scar tissue, she would just sew up that hole in my small intestine that was used to create the stoma.  However, if it looks like there is more scar tissue than is desirable, then she would simply snip off the part that was used for the stoma and staple the two remaining ends together.  Then she would poke it back into my abdomen and staple up the incision in my skin.  She explained that while they were able to use surgical glue on the other incisions because they were clean, sterile cuts, since this one had been used as a waste evacuation point and is very much not a sterile environment, they would not be able to seal it with the glue.  (Wounds that are considered "dirty" need to be able to breathe and drain in order to heal.)  So they will hold the incision closed with a few staples and then remove them later.

The next thing she did was to check to feel how the anastamosis holding the j-pouch to my anal canal/rectal cuff had healed.   If the passageway was too tight, that could present a bit of a problem.  So she had me pull down my pants just enough to reveal my bum, stuck her gloved and well-lubricated finger in, wiggled it around a bit (once you've had a camera five feet up there, a little finger action is a non-issue), and said, "Oh good.  It's all nice and loose."  Great.  I guess that means I shouldn't have too much trouble emptying my j-pouch after takedown.  She told me that she would look at the scans from my upcoming X-ray procedure that evening at the end of her workday.  Since she knew it would be a very busy time for her (end of business on a Friday), she would only call if something was wrong.  "So no news is good news," she said.

Next I was off to radiology for the actual pouchogram.  The idea is to fill the j-pouch with a fluid that shows up on X-rays and then take a scan to see if the fluid has gone anywhere it shouldn't.   Before my appointment I had a fleeting thought: "Wait, shouldn't I have fasted and emptied my bowels for an exam of my intestine?"  And then, "Oh yeah... This is the unused portion of my guts.  It's already empty!  Duh."  After changing into a hospital gown, I was brought back into the X-ray room, and the tech first positioned me and took a quick X-ray of my pelvis.  Then she prepared the materials needed while they waited for the doctor who would perform the procedure to arrive.  I lay there on the table and watched her fill what looked like a large IV bag with fluids: Gastrografin mixed with water.  A common misconception is that they use barium for the pouchogram (who knows - maybe some places do), but if they DO spot a leak this way, barium isn't very safe for your abdomen either, so Gastrografin serves the same purpose but is a safer medium if it does leak into your body.  As she filled and mixed the contents of the bag and hung it high on an IV stand with a long, large tube running down from it, I said, "Wow, that looks kinda scary."  She chuckled and said not to worry - that they wouldn't be using all of it.  It's just procedure to mix that amount in order to get the right ratio of fluids.

I have to pause here to say I really don't know why I was so nervous for this exam.  I mean, I've had literally thousands of enemas in my lifetime and eight colonoscopies - some of them while I was completely awake and sober - so logically I knew this would be a piece of cake.  But for some reason I was nervous.  I think it was because this is the first time my j-pouch would be expected to perform.  It would be filled to the brim and expected to retain fluid.  Here's how it actually went down...

The doctor finally arrived and showed me that only about two inches of the tube would be stuck up my patootie (thank goodness) and explained that a tiny balloon would inflate to help keep it in place as well as help to prevent all the fluid from leaking right back out.  As I lay on my left side, he inserted the tube and taped it in place along the back of my thigh so that it wouldn't slip out as they performed the exam.  I waited and braced myself for the feeling of fluid running into my j-pouch; I was expecting a feeling of cold or a building of pressure, but to be perfectly honest I didn't really feel a thing after he placed the tube.  I wasn't even sure the fluid was running into my j-pouch until I felt it start to dump into my ileostomy bag.

Diagram of a loop ileostomy
Okay, another pause to explain a common misconception about loop ileostomies.  A lot of people don't realize that when you have a loop ileostomy (as opposed to an end ileostomy), there are actually two holes in the stoma, even though you can't see them.  One goes up to the rest of the small intestine and the stomach - digested food flows out of this hole and into the bag.  The other hole leads down to the j-pouch (or in other cases, a colon or rectum).  Although rare, it is actually possible for digested food to flow back into this second hole and pass down through the j-pouch and out the anus before takedown.  If this happens we are told not to worry - it's perfectly normal.  So I knew before the exam started that the Gastrografin could potentially run all the way up into my ileostomy bag, and I even mentioned this to the lab tech as I was understanding how the procedure would work.

So when I felt my bag filling up with fluid, I told the doctor so he would know to stop the flow, otherwise I could risk ending up with a bag that was full to bursting.  When I've had enemas in the past, it is not comfortable: it creates a cold pressure inside that makes me feel like I have to go to the bathroom and sometimes even triggers cramping, but I have to hold it in.  So I was surprised that during this procedure I felt no pressure, no coldness, nothing.  Like I said, I didn't even know for sure that my j-pouch was filling up until it started dumping into my ileo bag.  To me, I took this as a good sign.  If I felt no pain or pressure for this procedure, chances were better that I would feel less pain and pressure when it was filled with digested food.

Pouchogram scan - not mine
(Image courtesy of University of Toronto,
labeled by yours truly.)
As he ran the fluid into me, he was taking "snapshots" with the large Xray machine hovering right above me.   He had a computer screen in front of him, right next to where I was laying (I could have seen the images myself if I wasn't on my left side) where he was looking at the images as he took them.  He had me roll back to a 45 degree angle for more images and then all the way flat on my back for a few more.  I could actually see the images on the screen by that point, though I couldn't tell what I was looking at - just looked like light and dark blobs to me.  Then when they were pretty much done, they had me roll back over on my left side as the tech brought the "IV bag" down towards the floor in order to drain as much of the fluid back out and into the bag as possible.  Once they got as much out as they could, they removed the tape and tube from my butt and let me get up to use the adjascent restroom in order to empty out anything else I could into the toilet (and my ileo bag while I was at it).  Then they had me hop back up on the table for one final scan.  All done!  I got dressed and headed home.

Through all of this my j-pouch seemed to function perfectly, retaining when it should, emptying when it should, and no uncomfortable sensations.  I left feeling a bit more confident that things would continue to go smoothly after takedown.  Since I never received a call from the surgeon, I assume the images looked good to her.  I'm still a little nervous about what might happen after this next surgery, but less so now.  The excitement and anticipation are starting to take over.  My surgery is in three days (!!!), so my next post will be all about how the takedown went!

Feel free to leave reactions and comments below...
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  1. You're gonna rock the take-down!

    1. Thanks! I'm pretty confident about it, too. Just now got permission to start sipping water; hoping for at least full liquids (soup, yogurt, etc.) by the end of the day. Will keep everyone on HealingWell and posted a little more frequently, but will probably do my next blog post in a couple days once I see how I handle solids and my first day or two of pooping!

  2. Thanks for this. Although it's older, I found it when I was searching for information on a pouchogram that I am scheduled for next week. I was terribly afraid of the pain. You've eased my mind.

  3. Thanks for this. Although it's older, I found it when I was searching for information on a pouchogram that I am scheduled for next week. I was terribly afraid of the pain. You've eased my mind.


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