Square One (updated)

Note: I’m in a fair amount of pain, haven’t slept, and am on a lot pain meds, so apologies in advance if this post makes no sense.

My surgeon stopped by to discuss last night’s operation and the plan going forward. Emily’s 5am report was remarkably accurate, so I won’t repeat everything here, but here are the basics. She opened me up using the same 6″ horizontal incision across my abdomen from which they removed my colon in June (no new scar). My bowels were swollen and inflamed. In addition, it was apparent that air had escaped into the bowel cavity, which also likely released bacteria and caused an infection (and my pain/fever). They also found some suspicious, non-stool liquid at the distal end of my small intestine (before the J Pouch). Fortunately, it was contained in the bowel. There were no signs of stool leaks, only air. Unfortunately, the source of the air leak was not immediately apparent.

They looked everywhere, running their hands the entire length of my small bowel feeling for leaks, but found none. They washed out my abdominal cavity and then performed an endoscopy of my J Pouch through my anus, filling the pouch with air in the hopes of spotting air bubbles escaping into the abdominal fluid — a sure sign of a leak. Nothing. I was on the table for nearly 4 hours as they searched for the source of my complications, but in the end, there was no clear answer. In some respects, this lack of clarity might be considered good because it means there are no obvious serious problems (and whatever caused the problem is likely small and hopefully fleeting). On the other hand, it’s also extremely frustrating to not have a clear answer or something to fix.

Because it was obvious that there had been a problem, but it could not be pinpointed or fixed, my surgeon opted to create a new diverting loop ileostomy to keep the J Pouch clean while we figure out the problem (or confirm that there is none). She was able to pull the loop through the old stoma site (no new scar). (Incidentally, my former stoma site and other incisions have apparently healed perfectly.) However, because my bowel was so inflamed, she had to insert a rod to hold the intestinal loop above the surface. This will stay in for 5-7 days until the skin surrounding the stoma heals well enough to hold up the loop on its own. She also inserted a JP Drain on the left side of my abdomen to allow fluid and gas to drain out. Bottom line: Anatomically, I’m basically back to where I was on June 27 — a loop ileostomy and external poop bag and an idle J Pouch.

The basic plan going forward is to give my bowels some rest and allow things to heal. Once things settle down and the ileostomy is fully functional, we will perform a full battery of tests to try to figure out the problem. MRIs, CTs, a pouchoscopy, everything under the sun. I will likely have several of these tests done at Stanford with my GI doc (both for convenience to home and a fresh point of view). If all checks out, we will then try another takedown surgery. But it’s not going to be for awhile — 6 months at least, I’d guess.

Needless to say, I’m not thrilled about this turn of events or having to live wih an ileostomy for an extended period of time. But what are you gonna do? UPDATE: As several good friends have been quick to remind me, I had come to peace with my ileostomy before my takedown and was living a relatively normal and healthy life. If the worst case is that life, I know I could do it, and there’s tremendous comfort in that. But I’m also not giving up on my pouch!

As for my immediate recovery, I’m still having a lot of abdominal pain (worse than after the first surgery) — but I need to keep reminding myself that it hasn’t even been 24 hours. Having a major surgery at 1am does funny things to your body’s clock. Go figure.

Sorry for the rambling post — hopefully I’ll be more coherent tomorrow.