Sorry for the lateness of this post but I have been having a time gathering my thoughts. I had surgery on 6/23 and it did not go as planned. The scar tissues (adhesions) were extensive, making my intestines look like a brick of flesh. Any cut that was made was a significant risk and I would even start bleeding from areas that they weren't even touching. I am inoperable when it comes to freeing up my bowels from their obstruction.
We are considering some alternative solutions. First, a Baker's Tube was inserted through the old G-tube hold and the hope was that this would work its way down my bowels, indicating where the obstruction is at and, perhaps freeing it somewhat. Well, that tube pulled back out Monday after surgery, having done nothing. We reinserted Tuesday but it is just sitting in a coil in my stomach right now.
I still have an NG tube and Dr Boudraux was that in7-10 days past surgery to make sure the walls of the bowel have repaired themselves. We are considering putting some radioactive dye down the baker's tube and trying to follow where it goes. If we can identify strictures, we could theoretically put a stent in place to make things better. We have also discussed haveing a surgery where they try pushing the backer's tube into place for similar reasons but that idea has not been very well developed.
Basically, I expect that I will be coming home no worse than when I arrived other than the additional surgery recovery. The good part is that I am obviously not dead but the bad part means that there is little hope for the future of my intestines. I don't know of many more tricks that could be employed to address the lack of eating. I also don't know how much longer my body will really tolerate the TPN which is necessary to just keep me alive.
Basically, the countdown has started. I have been able to live a live for the past 15 years that has mostly ignored my disease but that is an will no longer be the case. There are no magic treatments nor any new FDA treatments on the horizon that can address a bowel as scarred as I have.
Sorry for the ending note but I have always pledged to be honest in my assessment of my outlook and my future.
Hey Ron,
ReplyDeleteSafe travels back home. See you when you get back.
... and so it goes. Not the news we were hoping for/praying for but perhaps a place to start. You truly mastered the art of living, showed tremendous courage and strength fighting, showed that YOU CAN work as a member of the team with medical staff and now, together I hope, we will walk down the road home. I truly appreciate all the things you've shared thus far and, even if you decided not to write another word, I'm sooooo grateful you and Steph included us in your story.
ReplyDeleteThe "Fat Lady" hasn't sung yet and I expect she knows better than to bet against your will to survive.
Love, hugs, prayers and consolation to you all.
Deann