What's For Dinner?

We met with the surgeon today to determine the course of action and how to address the abscess.  Thankfully, the procedure is not as major as originally thought, and the procedure on Monday is more of an examination than a surgery.  They are going to drain the abscess and better determine it's size and inflamed area.  There is a very good possibility they will leave the drain behind; although, that's hopefully a minor inconvenience.  [I've never left a hospital with a tube in my rectum, so let's hope for "minor".]  He also feels the overall "pouchitis" that I've been experiencing and seen via scope is a result of the abscess and it's inflammation.  If this is the case, then curing the abscess will also resolve the pouchitis.  This would be a major bonus, as then I could get off the antibiotics at some point as well.


The downside to this is this may not be the end of the road:  Depending on how the abscess responds and heals, this may be the first of other possible procedures.  We will address those when the time comes, so no reason to stress about those now:  Positive thoughts breed positive results.

Pedal to the Metal

Today I had the gastrografin x-ray to check for the size and location of the abscess.  I had this procedure once before just prior to the reversal (stoma takedown):  It was only slightly uncomfortable then, as the stoma was the entrance point for the barium and I could regulate how much dye was contained in the pouch.  Now, being post takedown, there is only one entrance and exit point.  Unfortunately, that removes my ability to regulate any pressure.  Unlike most GI barium x-rays where you get to drink the liquid, they actually inject the barium directly into you via a pump... controlled with a foot pedal.  [I wonder if it comes with a steering wheel.]  The really interesting part is you can actually watch on the monitor the barium being forced back through your system as they are snapping pictures.  The really disappointing part is it feels like you're being expanded like one of the monsters in Dig Dug, and with no way to regulate, you just roll with the punches.  This was by far the most uncomfortable procedure I ever had, but the pictures were really neat!

The good news is we could see the abscess on the xrays:  You could actually see it disperse the fluid back to the tailbone (into the abscess) rather than back through the GI tract.  Filling the abscess was uncomfortable as well, as then I had to wait for that to drain, which took a few hours.  Thank you percocet.  The radiologist seemed happy with the results and noted the abscess was not overwhelmingly large (approx. 4cm) from what we could see and should be easily remediated.

I still need to see my surgeon to determine what they will be doing next Monday.  At this point, everyone is saying it's going to be an outpatient procedure, so I'm interested to see what is planned.  I won't mind coming home that day, but let's just say I haven't been the fastest to recover from any of the previous surgeries.

To all you radiologists out there... go easy on the gas.

The Answer, My Friend

After scope, scan, and guesswork, we finally located the cause of the pain.  My recent CAT scan finally showed a presacral abscess that had formed between the pouch and the tailbone.  We are unsure if this is the same collection that formed after the first surgery or formed as a result of utilizing the pouch after the second surgery.  Either way, it's collecting stuff it shouldn't and ruining the party for everybody.

As a result, I will be going back into surgery on March 1 to have the abscess drained and removed.  What exactly the surgery will entail is still up in the air and pending a further X-ray next week.  This will allow the docs to determine the best starting course of action and whether they can manage the entire surgery rectally or laparoscopy.  We will be discussing the expected surgery, possible deviations, and expected outcomes next week at a followup prior to the actual surgery.  There is a myriad of possibilities in what they will need to do and possible change while in surgery, so I may not be sure until I actually wake up from surgery what was done.  [That's fine with me, as this isn't really my specialty and I will be asleep for it.]

I had taken myself down to one steroid a day and was still feeling the pain throughout the day.  We know the reason for this now.  We we aren't sure is why the steroid makes the abscess feel better:  It could be the cortisone is masking the pain, the actual suspension is help clearing the abscess, or the pouch just responds to the suspension in such a way that allows the abscess to drain.  Either way, it's working, so we are going to continue taking up until the actual surgery in two weeks.  This will help limit the narcotics I'm taking for pain as well.  [Trust me, I'd rather be on narcotics than the steroids, but the doctors don't feel that's a prudent course of action.  Why be in pain if you don't have to be.]

My tongue has swollen to consume about 2/3rds of my mouth, making eating and drinking uncomfortable.  As a result, we are switching antibiotics again to Doxycycline hopefully rid this nasty side effect.  Let's hope this antibiotic doesn't give me worse symptoms like the Xifaxan did last weekend.  The thought is the abscess is causing a majority, if not all of the problems with the pouch, including the pain in the tailbone, the pain in the rectum, as well as the inflammation in the pouch (pouchitis).  If this is true, the surgery should clear all three and I can work towards being antibiotic and steroid free afterward.  I will probably always be on some type of bowel slower, but I'll take that over the nasty meds any day.

While this may seem like a setback, I'm quite grateful that we have an answer and can explain what has been happening for the last three months.  It's also great to have a proper direction and an action that can help resolve as well.  It would have been nice to find this issue months ago, but no previous scans or tests showed the abscess.  In some cases, exploratory surgery is necessary and many people fight this issue for months and months before finally getting an answer.  So, it may not be ideal, but it could have dragged on even longer.  This, as they say, is water under the bridge, so wishing it had gone differently is just a waste of time and energy.

Here's to finishing the marathon as opposed to the sprint.  I won't have much to offer over the next week or so, but you can bet that I'll be looking towards surgery.

New Isn't Always Better

We started the new antibiotic, Xifaxan, on Thursday.  Unfortunately, one of the possible side effects is diarrhea: Now isn't that ironic.  Over the past few days, that's exactly what happened, and I'm doing worse than I was on the previous antibiotic.  We're switching back to the Cipro, as that gave me no side effects, but didn't seem to be curing the pouchitis either.

The cat scan is scheduled for Wednesday to see if there is any fluid collection or some other issue that may be causing external issues to the pouch and the pain in the tailbone.  It's likely it'll be blank like the previous, but I'll try anything at this point.  If it is blank, then we'll have to see what our next steps are:  I've got some ideas, but I'll refrain from posting them now so rumors don't get started :^)

Unfortunately, pouchitis is a possible effect from having the j-pouch.  There is a percentage of the population that get it, but some never get rid of it.  Some people are able to manage it with antibiotics, steroids, or other combinations of medications.  We'll have to see if we can get rid of this bout before worrying about long term meds.  I'm not a real fan of antibiotics (or really any "non-natural" medication.)  As with the previous three months of posts, we shall see with time.

Running to Stand Still

Time after the last appointment hasn't progressed as we had hoped.  Even after doubling of the steroids, the pain still creeps in if I wait too long to take it in the morning.  Also, the urgency has increased over the last few days.  As a result, the docs got a few calls this week to speed up the process and make some changes to our current direction.  The fact that the cortisone seems to be covering up the issue and not resolving the issue concerns us (well, at least me) that what we are doing is running to stand still, at best.

We're going to stay on the steroids to resolve some of the inflammation in the pouch/cuff, but try a new antibiotic, as the current antibiotic doesn't seem to be working as expected.  We're also scheduling another CT scan, likely early next week, to try and rule out any collections or other issues that may be external to the pouch and not seen on the prior scope.  I'm not asking to see anything, but an answer is an answer.

Let's hope there is some progress over the next week or something to direct us closer to the solution.  Let's also hope this isn't the best that it's going to get.  Thanks to all the good wishes, prayers and vibes!