Staged closure on the ileostomy and much drama

Peter had surgery on Tuesday to begin the take-down of his ileostomy.  Unlike most ileostomy reversals these days, his will be taken down over a few surgeries, or stages, to keep bleeding quite minimal.  He has a very large vein that goes to the stoma and the usual ostomy reversal surgery would risk cutting that vein and causing major circulatory issues for Peter.  We expect one or two more "staged" surgeries over time, and then the ileostomy should be gone.  In staging the surgery, the connection to the colon gets started, and then it is made larger with additional surgeries, and this then diverts more and more stool away from the ileostomy into the colon, also making the ostomy progressively smaller in the process.

You would never know that Peter had surgery two days ago.  You might not have guessed it even on the day of surgery.  He has been up walking about as if nothing ever happened.  The only pain he has is a tiny bit of tenderness on the stoma itself, where the incision was made, and that only bothers him if someone pushes on it or he bumps it.  Overall, the surgery seems to have been quite successful - no ICU, no pain, and a short stay.

There was a good amount of drama prior to the surgery though.  On Thursday, Peter had to get a barium enema to establish that the colon was intact, only to find that the barium would not pass beyond a certain point.  This caused him considerable distress and discomfort from the fluid going in, to the distention where it would not longer pass, and when it worked its way back out.  The next day, Peter had a fever and he had bloodwork done along with blood cultures to establish whether this was an infection brewing.  With a PICC line, there is always a low threshhold for fever and cultures are drawn to rule out a line infection.  There was discussion of starting IV antibiotics, being admitted to the hospital right for observation, maybe doing antibiotics outpatient..... and then the thought too that perhaps the enema had caused problems and there was intestinal bacteria leaking into the gut.  Peter's tender tummy lent additional credibility to that latter idea.  Peter did not really act ill at all though, which he normally does if he is sick.  The bloodwork didn't give a great conclusion one way or the other either.  Finally, we all settled for observation by mom and dad outpatient, and a promise to call if the fever went up or he acted sick.  Peter ended up fever-free by the evening and that was the end of that "little" issue.  In retrospect, it is likely that Peter was dehydrated from the GI losses caused by the enema, along with the stress of it.  The ascites that he has always, always make hydration status very difficult to accurately ascertain, so labs are not really helpful in knowing his salt and fluid stores; they just see what is in circulation at the time of the lab draw.

As the fever issues were unfolding on Friday, we had pre-op for the surgery, and then a meeting with interventional radiology.  The meeting was to discuss whether a partial embolization of the spleen would help with the portal hypertension and whether it should be performed prior to work on the ileostomy reversal.  In the end, it was decided that embolization may be something to keep in mind at some point, but that it was not necessary to do prior to surgery this time.  As with so many things, there are big risks to embolizing and there  would need to be more tests performed.  There will be more discussions between the doctors about it over the next month or two, and I'll post more as I know more.  

Monday came and Peter had a scheduled MRI to look at the circulation around the stoma, as well as to look at the liver itself.  The big collateral vein around the stoma is larger than it was prior to the surgery Peter had last Fall. This was what was suspected, but we had all hoped it to not be the case since the large vein makes surgery around the stoma difficult.  Since Peter was asleep for the MRI, there was fortunately no trauma involved there, other than the "usual" upset Peter has about having a sore throat after waking up post anesthesia.  For him, a grape or cherry popsicle is a great cure and they fortunately had one to give him as soon as he woke up.

Going into surgery on Tuesday, we still had to establish that the colon was not strictured where the barium had stopped flowing, but that perhaps it had folded upon itself.  Dr. Kamin went into the OR with Dr. Jennings and was able to get the colon open with CO2 gas and then run dye through (maybe it was also barium?) and did in fact show us that the colon was intact.  Dr. Jennings then proceeded with the staged surgery through the ileostomy.  As nice as it would be to have the whole ileostomy reversal done in one bigger surgery instead of several small ones, with the colon folding over like that, it is best for Peter to go with the staged surgery to slowly start getting his colon to work in case it should be prone to folding back over on itself again before it really gets used to being used.  

This brings us back to where I started with this entry.

My guess is that this blog entry will be a bit confusing.  I thought of keeping the update short and upbeat like the surgery itself, but the wild ride we've had this week seemed to need to come out and be shared.  It is my hope that people will keep praying for Peter, and maybe if I share some of the craziness that occurred the need for continued prayers will be better understood.  There is still much to sort out with the spleen, the liver, and the portal hypertension so that the next surgeries can be performed safely and so we can continue to help Peter get to better health.  If you can say a prayer for Peter, please do.  Thank you, and God bless you!

UPDATE:  As I reread what I wrote last night, I realize that I have poorly captured the "drama" or "wild ride" of this trip that I was trying to share.  It was certainly not the intense drama of last Fall's surgery, just many smaller issues, some with potential to be much bigger issues and others just big nuisances, and the stress that goes along with such bombardments of problems.  For example, after the "news" that Peter's colon may have a stricture to prevent surgery as planned, he was still continuing to expel the enema contents with no real warning this was occurring, over and over again.  Peter had to drive home in only a pull-up on the way home after the barium enema after the pull-up leaked all over his clothing, shoes, and the curb of the street.  He was so stressed out about the whole enema experience that he fell asleep three times on the hour-long trip back to where we were staying.  For example, yesterday morning, Peter woke up covered in formula from where the feeding tube popped out of his G-tube.  As we bathed him, changed his clothes, changed the sheets, he scratched at the ostomy bag and then I needed to immediately change it so it would not leak.  All this was before 7am.  For example, for no real reason, my cell phone went haywire for several days and that is my main communication device with the doctor and nurses when we are in Boston outpatient.  That was not a major issue, but another nuisance issue on top of other issues.  Now the phone works again find.  For example, one of Peter's siblings woke up with  a cold Sunday morning (tons of sneezing and sniffling) which of course would have prevented surgery if Peter had caught it.    For example, the MRI not only shows the larger blood vessel, but also shows concerning nodules in the liver that still need more follow up with a blood test and another MRI in 6 months.  I'll update more on that if it does end up a true issue.   Well, time to go.  Peter is up and ready to take a stroll!