Gastrectomy Anniversary

I want to start by apologizing for the almost nine month period with no posts. As I am sure everyone knows COVID has made life different and crazy. Due to all the changes at home and in life in general I got out of the habit of posting. I had intentions several times but it just never happened. I felt like today was a good day to get back on as today is the One Year anniversary of the day that my stomach was removed!! I do want to acknowledge that a lot of life has happened in the last several months and I intend to go back and update everyone on what has gone on. For today however, I am going to focus on the way my life has changed over the last year due to my surgery. Some of this information will be a recap of what I have already shared but I figure I should cover all the bases.

As I shared, the first few months after surgery were a bit rough. I have very little memory of my time in the hospital post surgery but am told that this is partially due to the fact that I was in pain and was kept on meds to keep me comfortable. In the first few months post surgery I was on a liquid only diet. This in itself was not a huge struggle as I had very little appetite anyway. I then advanced to a soft food diet. This was a bit more challenging as it was hard to get enough nutrition and I was still requiring tube feeds which continued to be painful.

Over the next several months as I was cleared to eat a more normal diet I started to notice how much things had changed. Before surgery I was in pain and nauseous all the time, and things always got worse when I ate. Post surgery I had pain associated with my feeding tube but was not experiencing the level of abdominal pain that I had been experiencing before. I continued to have some nausea after I ate but wasn’t nearly as nauseated as I had been before. As time went on I learned my limits in how much food I could eat at one time (which is not much) and as I began to eat smaller portions my nausea got evern better.

A few months in to the year with no stomach my feeding tube started causing more problems and I was able to use it less and less. I had contant tube pain which increased whenever feeds were running. After a series of unfortunate tube issues (it being pulled out, replaced, falling, out and replaced again) my doctors decided that I was capable of getting enough nutrition without it (as I was also on TPN) and it was causing more problems than it was solving. At that point I was told that it was okay to have my tube removed. The day my tube was removed the pain in my abdomen went away almost completely. I hadn’t really realized up to that point how much of my pain had really been removed when my stomach was taken out. Over the next couple weeks as my tube tract healed the pain only got better.

After my tube removal I remained on TPN with the hope that we would slowly wean off and eventually get me to a place where I could get all my nutrition by mouth. I was still having some symptoms and challenges with eating but it was assumed that everything would continue to improve as time went on.

Over the next several months I would start to decrease my TPN from 100% nutrition to 75% nutrition, although I still was using it everyday. My symptoms with eating continued to get worse. After eating certain meals I would experience dizziness, lightheadedness, nausea, hot flashes, pain, and a general feeling of being unwell. This would come on within 15-30 minutes after eating and would sometimes last for a few hours. My GI was concerned that it was a POTS flare but my POTS doctor was confident that it had nothing to do with my POTS.

My POTS doctor brought up dumping syndrome and over the next several weeks I started researching and reading everything I could find. After realizing that my symptoms matched exactly I reached out to my GI with more specific questions. He agreed that my symptoms all fit and I was officially diagnosed with dumping syndrome. Different sources have different opinions about what dietary changes need to be made with this diagnosis and I was feeling overwhelmed about where to start. This is when I reached out to a dietician.

My dietician explained to me that dumping syndrome happens after surgeries which alter the stomach in any major way. By altering the stomach food moves directly into the small intestine without being first broken down. The small intestine rapidly absorbs sugars from food that have not had the chance to be properly processed and causes a sudden increase in blood sugar. What follows soon after is a drop in blood sugar which is what was causing all the symptoms I was experiencing after eating. She told me that the only way to prevent these spikes and drops was to eliminate added sugar from my diet.

This was a overwhelming change to make. She made it clear that natural sugars were okay as they are processed and absorbed by the small intestine differently. At first I was so frustrated. I had undergone this major operation and months of difficult recovery only to be back to having to be on a restrictive diet again. It was devastating and I began to question whether having a gastrectomy had been the right decision to make. Then, with the help of my mother, I began to dive in to this new diet and learn the things that were safe to eat.

Living in America means that there is sugar in almost everything. Even in the foods where you think there would be no need to add sugar. One of the ones that shocked me most was bread. Whole wheat bread has ADDED SUGAR. Why?! While this seems completely unnecessary it is unfortunately true. I began reading the nutrition labels on everything and saw added sugar everywhere. Going to health food stores and local grocers we were able to find breads, crackers, and other food that did not have any added sugar in them. We found pasta and pasta sauce (which was not easy). We found that eating whole foods and little processed food was going to be the best way to go.

Over the course of this whole journey I have been seeing a counselor to help me work through the medical trials and all the emotions that go along with them. She is a wonderful person and has helped me in so many ways. When she heard that I was unable to have added sugars she went and put together a gift bag with sugar-free sweets and natural sugar alternatives to use in baking and as an alternative to sugar or honey. With her help I realized that this diet was not as awful as I thought it was going to be.

Eating out is a bit of a struggle now as added sugar hides in a lot of places. Not all restaraunts has extensive nutrition information that allows me to know where there may be sugar hiding. There have been a few times where I have eaten something and quickly realized that there was sugar hiding in there somewhere.

Along with comepletely eliminating added sugar from my diet, I needed to be more intentional about eating five to six small meals a day in order to get an adequate amount of nutrition. This has meant finding protein bars with no added sugar and learning how to eat less at meal times but more times throughout the day. The other major learning curve is that with dumping syndrome I am not supposed to have solids and liquids within a half an hour of each other in order to give my small intestines more time to absorb nutrients from my food without the liquids rushing it through. This has in some ways been the most challenging adjustment but with time has become more normal.

With the help of all these changes my life has drastically changed. I was no longer having pain and nausea and all the other symptoms that came with eating. Without my feeding tube my abdomen felt normal. I was still dependent on TPN but had weaned down to only needing it a few days a week. The dietary changes had been a struggle but I was learning to manage and learning to get enough nutrition throughout the day (with the help of the vitamins I will be on for the rest of my life). My TPN was down to two days a week and we were looking to get me off it completely. Things were looking up for the first time in a long time.

And then, two weeks ago things started to fall apart. I have started having severe abdominal pain when I eat and am throwing up again. This is not the symptoms I was having when eating sugar and is not a pain that I have experienced before. I had an appointment with my GI and he said there is a number of things it could be, including scar tissue causing problems, a twist in my intestines, or even an ulcer. I am trying some different medications and have changed the doses of some of the meds that I am already on. I have an ultrasound later this week to check for problems. As a result of this problem I have been struggling to maintain my nutrition and have been losing weight at a somewhat alrming rate. This means that all attempts to get me off TPN have been put on hold and pending my test results we may even need to increase it again. In the end this could just be a fluke thing that will go away on its own. After all the progress this has been discouraging.

The past two weeks have been hard and have made me question if my gastrectomy was the best path. Recently a close friend reminded me that even with all the hurdles, overall, the last year has seen a dramatic increase in my quality of life. I still have POTS and get two liters of fluid everyday to help keep down the number of times I pass out. I may have had to make changes to my diet but for the most part I can eat almost anything that I want, and a lot more than I could with gastroparesis. While the last few weeks have been hard, the months before that have been so much better.

In the end, I am glad that I had my gastrectomy. It has been a long, and at times difficult, road but in the end things have improved so much. Regardless of what this pain is it will eventually be fixed and go away and I will go back to an almost pain free life. There is still hope and a plan that I will eventually wean off my TPN and I know that someday it will happen. I still have trying days when nothing seems to be working right and I feel like everything is falling apart, but, this is part of being chronically ill. I have some amazing people in my life who constanly remind me how much better things are from a year ago and how much hope there is for the future. If I had to do it over again I would make the same choice. My first year with no stomach has been difficult, but hopefully each year to come will get better and better.