I’d like to begin by saying how blown away we have been by the response to our last post. Every single comment has been read and taken to heart and we are beyond grateful for all the prayers being said for us and our families.
We have had so many questions about surgery and life post total gastrectomy, so I wanted to take some time and explain the procedure, recovery, and what we are expecting afterwards.
Total gastrectomy is the complete removal of the stomach organ. The term prophylactic is attached to our procedure because it simply means it is being done as a preventative measure. We spoke with three different surgeons before deciding on Dr. Mansfield and realized there are several different methods that can be used to achieve the end goal. For the purposes of this post, I will focus on Dr. Mansfield’s method for performing the operation.
Here is what our stomachs currently look like:
Our doctor uses kind of a combo approach to this surgery. Laparoscopically he will go in and prep for the big separation, he mobilize the stomach, divide the duodenum, and work on the blood supply. Nicole will also be having her appendix removed during this procedure (mine was removed 10 years ago) and we imagine that will be done laparoscopically as well. Dr. Mansfield will then make a 6-7 centimeter incision at our breast bone and this is where the stomach will physically come out and the reconstruction, known as Roux-en-y reconstruction, will take place. This reconstruction involves attaching the esophagus to the small bowel and one end of the duodenum will be attached to the small bowel as well. Here is an after shot of what it will look like after the surgery:
So what are the major complications/concerns?
- The most major concern is a leak at the anastomosis (the place where the small bowel and esophagus are connected), which could actually be fatal if it occurred. One thing that really made us like Dr. Mansfield is that while in the OR he fills the abdomen with saline, submerges the new connection and blows air through to check for leaks before closing us. By doing this he has a leak rate of 0% doing this surgery.
- Stricture at the anastomosis, which means the passage there becomes very narrow is another concern. This causes difficulty and pain when swallowing and makes it hard to eat or drink. This would have to be treated with a procedure to dilate the area. Luckily the rate of stricture with a hand sewn anastomosis is much lower than one that has been stapled.
- Bowel obstructions are a common complication as well and unfortunately can occur even years after surgery. All we can really do is be mindful of our bodies and pay attention to any signs of discomfort. Most small bowel obstructions can resolve themselves, but some do require surgery to repair.
- A hernia in the Petersen space (the extra space left due to the absence of the stomach) is another concern. This would mean the intestines could herniate in the space and surgery would have to be done to repair the defect. The major concern with this space is also the intestines twisting which would result in blood flow being cut off and the intestines dying, which could be fatal. This complication is incredibly rare and our surgeon will take extra precautions to “close the traps” where this could occur.
The biggest long term concern is of course nutrition. Most people lose between 10-20% of their body weight in the early months following surgery. We will be unable to eat or drink substantial amounts at one time. We will be eating very, very small amounts pretty much around the clock during the early days. Coming out of surgery we will have a feeding tube (J-tube) that will help us keep up with our caloric requirements. As time passes our bodies will adjust to the new mechanics and we will be able to eat larger portions less frequently. Similar to people who've had gastric bypasses or gastric sleeves, there will be some types of foods that will be hard on our system. Sugar seems to be the #1 food to avoid. Also on the bad list are fried foods, raw veggies and fruits, and for some people lactose is a problem. Over time we may be able to add small quantities of these foods back into our diets, it's just a matter of letting our bodies adjust first. One consensus from people who have had this surgery before is that at some point we will experience what is called dumping syndrome. This occurs when food, namely sugars, empty into the small bowel too rapidly. Symptoms of dumping syndrome are nausea, vomiting, abdominal cramps, sweating, dizziness, and a rapid heart rate. One great piece of advice we've been given is to keep a food journal and track how our bodies respond to different foods and to try adding new foods to our diet one at a time so we can easily track how we tolerate each thing. We've talked to several people who have gone through the total gastrectomy and it seems like things really start to level out around 6 months and by a year you're settled into your new normal and eating larger quantities and a variety of foods.
Following surgery we will be in the hospital for 5-7 days. The first four days we will have nothing to eat or drink by mouth, but they will start giving us nutrition via the J-tube the day after surgery. After the first four days we will slowly start with liquids, then advance to soft solids. After we are released from the hospital we will stay at a hotel close to MD Anderson for about a week, then we will have one more follow-up with our surgeon before flying home. In total, recovery should take 6-8 weeks. Nicole will be out of school for the summer and I plan on taking 6 full weeks off work then work half days for two more weeks and return to full duty after 8 weeks.
Other developments in the past few weeks:
- Nicole had her first appointment, MRI, and mammogram with the breast health center at UAB and everything came back clear! So she'll be checked again in 6 months and my first set of breast tests will be May 16th.
- We both met with a nutritionist at UAB to start preparing for the road ahead. She gave us some helpful information on adding calories after the surgery and some protein powders and supplements that night be helpful.
- I met with a fertility specialists at UAB to discuss the possibility of pregnancy with no stomach and doing IVF with pre-genetic screening to eliminate the CDH1 mutation risk for any future child.
Over the next few weeks we just want to focus on spending as much time as we can with our families and friends and eat as much delicious food as possible. We continue to focus on the positives of this situation, like totally eliminating a major cancer risk, but that doesn't mean we don't have days where we are scared or anxious about what's to come. So thank you for continuing to pray for us and our families, because that truly helps us get through those days.