Remember that plan I wrote about last time? You know the one where Zack would be having a colectomy or some version of a colectomy as soon as his surgeon got back from China? Yeah, forget all that. We have another new plan and I am mostly certain it is the final plan….
When our GI in Cincinnati read Zack’s manometry test, his recommendation was that Zack have his colon removed sooner rather than later. We could see that most of his colon was not working and with Zack prolapsing again, it made sense to take it out quickly to avoid more emergency surgery from a prolapse gone wrong.
Our surgeon in Cincinnati had been recommending a colectomy since last March. When she returned from China and reviewed all the data, she did not feel comfortable with this recommendation any longer. A little back and forth between our doctors in Cincinnati resulted in a change of plans. Both doctors were/are concerned with the amount of output Zack has daily from his ileostomy. I learned that a normal amount or desired amount of output per day is about 300 ml. Zack is averaging between 1,000 ml – 1,500 ml per day with some days as high as 1875. They are concerned that if they take his entire colon out and perform j-pouch or straight through surgery on our guy that he will basically be pooping all day long. That is no way to live.
To try and combat the high output the doctors had Zack take Flagyl for 10 days. It was hoped that if his output was due to small intestinal bacterial overgrowth it would improve with the antibiotics. That did not work. A week later we added pectin to Zack’s overnight feeds. Yep, pectin. You know, the substance added to thicken jams and jellies? Evidently it is also helpful in thickening stool and slowing its transit in people with high output ileostomies and short gut. I will never be able to can fruit again without thinking about this. Wait! I have never canned fruit. I guess that dream just died. I digress…we are still in the process of determining how well pectin will work for Zack.
Zack’s body has proven time and time again that it does not like ileostomies. He is currently on revision number five and we all know how those have gone. If his body could handle an ileostomy, we would be thrilled to have a permanent one. I would never have believed I would be wishing for that when all of Zack’s surgery began in 2013!
The doctors have gone back and forth about different options. Everyone now agrees that there is something physically wrong at the anastomosis (reconnection) site. We can see it on two different contrast enema scans. Zack’s GI here has been saying this all along. He’s pretty smart.
The current plan is for Zack’s surgeon in Cincinnati to take out the troublesome area and those pesky staples. Zack has complained that his staples hurt from the beginning. She thinks that his body really does not like them, so she will be sewing his intestines back together this time. At the same time, she will bring up a loop of colon next to his ileostomy. This is called a mucous fistula and he has had this before. His ileostomy will be revised and tacked down to buy us some time while everything heals and we do some “interesting” testing.
Now we get into some details that you may want to skip if bodily functions are not your thing. Zack will be in the hospital between 5-7 days to heal from his surgery. We will then hang out in Cincinnati to start a refeeding trial. What that means is that we “get” to take some of Zack’s output from his ileostomy bag and use a syringe to put it into the mucous fistula and down into his colon. The purpose of all of this fun is to see how Zack’s colon reacts. If things go well, we will come home after a week or so and continue with the experiment for an unspecified time. We were told that this is the most conservative approach and “the last test” of Zack’s colon. If things do not go well….there is another plan for that, but I will save that for another day.
Zack’s surgeon’s ultimate hope is that she will be able to keep at least a few centimeters of his colon. That will give him the best chance of achieving good bowel control.
Although this new plan involves more surgery for Zack, I appreciate all attempts to keep some of Zack’s colon. However, the thought of going through all of this again makes my stomach upset. It took a long time to convince me that removing Zack’s colon was the best option. I had prepared myself mentally for the operation and all that would come with it, but still I worried. Interestingly, my worries were the very ones the doctors had as well. I appreciate the fact that they are most interested in the best outcome for Zack.
Now that all of our questions are answered, at least the answerable ones, our surgeon is looking for the first available OR date. We have no idea of the time frame. It could be this week, it could be next week, it could be after Christmas. And so we wait and cross our fingers that pesky stoma stays put.
Hug your babies!