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.