This is going to be a quick and perhaps sloppy post. I need to write fast because my son has insisted lately that only I can put him to bed. (Sweet, but frustrating because it takes time away from my ability to get my evening work and chores completed.)
So, I have some health issues. I am apprehensive to write or even talk about these issues because I always fear that people are going to gaslight me, claim that I am exaggerating, tell me it’s not that bad, or doubt me in some way. But, the fact is, there is something broken in my body. My gastroenterologist knows that I have chronic problem, I know it, and the biopsy results that I received yesterday confirm it.
If I don’t want to talk about it, you are probably wondering why I am writing this post. Well, first off, writing helps me to process very confusing and frightening information. I have also given a few people various updates throughout this ordeal and now I just want to send out a general update so I do not have to rehash it several times over. Let me be clear, though: I am not looking for advice or superficial reassurances. As you can probably tell, I am anxious about the situation and I have very little patience at the moment.
I am going to try to start from the beginning as much as possible. For a few years, I have had stomach pain and bathroom issues. Over this past summer, while my father’s health rapidly declined from stomach cancer, my own pain grew increasingly worse. Several times a week, I would be crippled over for hours from intense stomach pain.
I rationalized the pain as being a product from stress, especially since I was literally watching my father die over the summer. But, I also knew that having such pain on a regular basis was not normal.
So, on the suggestion of my primary healthcare provider, I saw my first gastroenterologist in the fall of 2018, shortly after my father’s death. Because of my father’s illness and my own extensive discomfort, that doctor recommended that I undergo a colonoscopy and endoscopy. He also had me do a CT scan, several blood tests, fecal tests, and a pelvic ultrasound. I completed all those tests and examines, but when I tried to do the prep for the colonoscopy, my body had a violent adverse reaction. After an absolutely horrible and scary night, I could barely walk, stand, or talk on the day of the procedure. My breathing was so belabored that the anesthesiologist refused to perform the procedures. Later that day I went to Urgent Care, as I was still severely sick. The Urgent Care doctor explained that since I had a slight cold on the day I took the prep, my immune system became overwhelmed with dealing with the prep solution and the cold virus. She further explained that some people just can’t handle the colonoscopy prep; their bodies just can’t do it for a variety of reasons.
After that fiasco, I had a follow up appointment with my original gastroenterologist in January 2019. During that appointment, the doctor noted that I do have the gene markers for celiac disease but not the antibodies, which, he explained, means that at some later point in life I could develop celiac disease. Besides that, he said everything else appeared normal on all the various tests and examines I had taken during the previous fall. He said there wasn’t a solid reason to put me through the ordeal of a colonoscopy again, since my body had such a bad reaction to the prep. He said my pain was probably from IBS-related stress and prescribed a medication for it. (That medication has actually helped with the pain a decent amount.) That doctor told me to come back in a year for a follow up and sent me on my way. I felt great. Everything was going to be fine, I told myself. Well, lesson learned: do not tempt fate.
Later that afternoon, I received an urgent call from that first gastroenterologist. In a pretty rushed manner, he told me he had missed an abnormal result from one of my blood tests. As he put it, I have “very high” gastrin levels, which means that I could have “hormone-producing tumors” on my pancreas. I was in immediate shock. Things just went from 0 to 100 in a matter of minutes. I don’t want to get into too many details, but because that gastroenterologist and his office personnel made many (and I mean many) mistakes, I decided to find another gastroenterologist who would pay more attention to my case and provide better guidance.
In the following weeks, I had another gastrin test performed. A normal gastrin level is at 100 or below. When I had the first test completed in September 2018, my gastrin level was 724. When I took the second test at the end of January 2019, my average level was at 840. Labcorp took several samples that second time, and some of the levels came back around 900 or slightly above. When a gastrin level goes over 1000, it can indicate the existence of a malignant disease in the stomach, pancreas, and/or small intestines.
With the results from the second test in hand, I went to see my second gastroenterologist. Before continuing, let me just say that this second doctor has been awesome. He is paying close attention to my case. He responds quickly to my incessant emails and takes a considerable amount of time to talk things through with me.
As he explained it during my first appointment, he sees two separate issues at play: IBS and the cause of the gastrin level. For the IBS, I am on a strict diet, taking supplements, and medication. For the gastrin, he suggested that it could be caused by an autoimmune disorder or from having tumors on my pancreas. So, as he advised, the best course of action was to do more blood work and undergo an endoscopy to see what was going on.
I had the blood work and endoscopy completed a few weeks ago. For the blood work, I had high levels of certain antibodies, which I will discuss in more detail in a minute. During the endoscopy, my doctor removed a polyp (an abnormal growth) from my stomach lining and he took several tissue samples to biopsy. As mentioned above, I got the results from those biopsies yesterday. Good news is that the issue does not appear to be caused from possible tumors on my pancreas. (My pancreas seems to be clear in that respect.) The more complicated news is that I have been diagnosed with autoimmune atrophic metaplastic gastritis.
Yeah, I know what you are thinking: what the hell is that? It is a rare genetic disease in which certain antibodies attack the stomach lining. As the antibodies attack, the mucus tissue that lines the stomach slowly erodes, which can cause a host of problems. Because of the attacks from the antibodies, my stomach is having a difficult time producing acid, so I have very little acid in my stomach. My doctor has called it a “low acidic state” which is technically known as achlorhydria.
Since my stomach has such little acid, it keeps telling my pancreases to produce more gastrin. Gastrin is the hormone that generates acid production in the stomach lining. So, my pancreas is overworking to produce the gastrin. Gastrin is filling up my stomach, but my stomach is unable to produce the acid that is needed for food digestion, because of the attacks from the antibodies. As my doctor put it yesterday, I have a “broken feedback loop” in my body. Too much gastrin is not a good thing to have just floating around in your stomach because it can trigger malignant growths.
Eventually, autoimmune atrophic metaplastic gastritis can lead to vitamin B deficiency and pernicious anemia. It can also cause stomach cancer as well as an array of other problems. My father had a vitamin B deficiency for a while many years before being diagnosed with stomach cancer. This autoimmune disorder is rare, but it is also genetic. In my mind, there is a decent chance my father had this condition (without knowing it) and it caused the malignant growth in his stomach lining. Since my father’s tumor was not discovered until it had already significantly progressed, his oncologists were more concerned with figuring out the difficult question of how to manage it; they were not necessarily concerned with trying to establish its origin.
Later, when my disease progresses enough, B12 injections will help minimize the negative consequences of pernicious anemia. But those injections will not prevent the other possible negative consequences of autoimmune atrophic metaplastic gastritis, such as stomach cancer.
As my biopsy results revealed, the cells in the lining of my stomach have started to change. This is called metaplasia. The cells and tissue change in an effort to try to accommodate the hostile environment due to the antibodies. My cells are in the very beginning stage of changing. Sometimes, as the disease progresses, these changes turn precancerous, and, then, eventually cancerous. The polyp that my doctor removed came back negative for malignancy, but, as my doctor explained, this type of polyp is also found in individuals who either have stomach cancer or go on to develop it.
So, what are the next steps? My doctor explained that I am not in danger right now. We have caught the disease very, very early. It is like we are reading a book and we are only on the beginning pages. But, as my doctor also explained, he cannot stop the antibodies and he cannot stop the gastrin levels. As he put it, “physically there is nothing to be done right now”. The next steps, then, primarily include monitoring my disease by having an endoscopy every 6-12 months. If the doctor finds another growth, which is very likely to happen, he will hopefully catch it in time to remove it before it becomes a considerable problem.
My doctor also cautioned that right now, big treatment plans beyond monitoring are not warranted with the current state of my disease. He said those more drastic treatments can also be “toxic” and harmful to the body. So, we are going to hold off on those options. The progress of the disease needs to be mapped out before taking more drastic steps.
On a central level, I understand my doctor’s assessment and I agree with him. But, on another level, I feel as though I have a ticking time bomb in my body. The fact that there is something wrong and it cannot be easily fixed is upsetting. The “broken feedback loop” in my body is not sustainable. The ever-growing levels of gastrin are not sustainable. The attacks from the antibodies and the subsequent erosion of my stomach lining are not sustainable.
I have something wrong with my body and a simple, straightforward fix is not in my deck of cards. It is depressing to comprehend that future steps do not involve “curing” my disorder and making my make my stomach and pancreas function normally. Instead, it is a matter of prolonging how long these problematic organs can continue to operate.
I hope that makes sense. I know that many people don’t like the answers I have been given and refuse to believe I can’t just be fixed. But, I trust my doctor. I am confident in his assessment and I know that if there were a definitive solution to stop my disease from progressing, he would be recommending it.
Anyway, I need to get going. Again, I wrote this post to help myself process the information. I am not trying to play a round of sympathy Olympics. I am also not looking for medical advice. My doctor and I are on top of this issue.
I know that this diagnosis probably seem ridiculous given that I have already had a rough few years, especially with my father’s recent passing. I will note that this situation has complicated the grieving process to a degree that I cannot adequately express in words.
Even though my kids are a constant struggle on a daily basis, caring for them has been a good distraction. They absolutely help to deter me from drowning in anxiety about this disease. When I am not caring for my kids, I have been focusing almost all of my time and energy on my book, which has also helped center my focus away from things that I cannot control.
Well, that is all I got for now.