Tests are done and everything's normal for the most part:
- Gastric emptying
- Two SIBO tests
- Enzymes
- Food allergy bloodwork
- Two ultrasounds
- Colonoscopy
- Endoscopy
- Barium swallow test
- HIDA scan
- Regular bloodwork
- Four throat scopes
- Esophagram
- CT scan
We've found:
- Globus sensation (nerve damage in my throat that made my voice hoarse and caused a feeling like food was stuck; it finally calmed after a year of symptoms)
- GERD
- One gallstone
- One kidney stone
- SIBO (last test showed I'm negative now)
- Small hiatal hernia
- Gastritis (stomach inflammation)
- Vitamin D and B12 deficiencies
We've tried:
- PPIs and H2 blockers to calm GERD
- Five antibiotics in three rounds to calm SIBO
- I'm still taking Vit. D and B12 supplements every day
- Many diet changes and restrictions
- Lifestyle changes (wearing loose clothes, walking after eating, lying on left side to sleep, staying upright for hours after meals, eating small meals, lowering stress, etc).
And still I'm no better; in fact, I feel worse. Extreme symptoms used to happen a few times each week but now happen daily.
After a gastroenterologist fully checks everything else and there are no structural problems, we arrive at a final diagnosis and solution now that all other possibilities are eliminated: Functional Dyspepsia and Visceral Hypersensitivity. My mind learned to tell my body that all food and drink is hurting me, and then no matter what I eat or drink now (safe foods or not), my body responds with pain, immediate bloating, feeling very full, and nausea. Functional Dyspepsia causes real reactions -- it's not "just in my head" -- it's a dysregulated connection happening in my body that causes real physical symptoms. Visceral hypersensitivity happens because my nervous system is overly sensitive and amplifies everything into pain that might not affect someone else the same way.
How does it happen? Extreme constant stress from a few years ago that I couldn't manage, which got out of control and affected my digestion system (mind-gut connection), which caused my brain to associate food and drink with danger, which led to my body now reacting in painful ways by default, even in times when I feel no stress at all. It's something my body has learned, and it's something that has to be unlearned, and that starts in the mind.
How do we fix it?
- Stop thinking about stomach problems or fixating on it or researching it, which keeps it always on my mind and watching for danger or symptoms. This is easy to say but hard to practice when my body has learned to react negatively to everything, every day. How can I ignore my stomach when it's obviously huge and painful? I've also believed I was doing the right thing by reading and researching and trying everything in order to fix myself, but apparently it may have made things worse.
- Low dose of Nortriptyline for a few months, an anti-depressant that will calm and relax my digestive tract and my mind-gut connection that obviously is broken and hypersensitive from things like years of chronic stress. At a low dose, it's not used to treat depression, but it's effective at calming stomach problems from functional dyspepsia. I've always felt stress affect me physically and make me sick, but I'm shocked at its ability to wreck my body like this, and for this long. Stress (and multiple health problems) was building for years and leading up to 2019, The Year That Broke Me for lots of reasons, followed by the wild and stressful pandemic year of 2020 and every stressful year since. I'm much better at staying too busy taking care of everything and everyone else and what they want or need but not stopping to take care of me and what I want or need, and my whole life this tendency of mine creates a lot of stress I can't regulate, and then I get exhausted and sick and can't function. Now, even after all I've done to lower stress in my life in the past year, my body still defaults to this bloated, painful reaction every time I eat, even if I don't feel stressed at all. My body has gotten used to responding this way and can't stop on its own. A low dose of Nortriptyline should disrupt the mind-gut connection enough to get me back to normal, but it usually takes several weeks or months on that medicine to start seeing results for digestion problems. And then I have more work to do in my life to calm my body and help it manage stress better. Gut problems take a loooooong time and much trial and error to fix.
- Gastro-Intestinal Psychology to stop the cycle of worrying about what to eat and worrying about daily actions to keep from hurting. The idea is: I'm scared everything will hurt me, and then those thoughts cause the very pain to happen that I'm worried about. Apparently I need to unlearn phrases like, "This food will hurt me" and "I'm in pain and I can't stop it" and "This will never get better" and "My body is broken" and "I should cancel plans today and go back to bed." I'll need to learn better phrases like, "I might hurt this morning but I can feel better by tonight" and "This food is good for me" and "I can heal" instead of giving up. Part of the whole healing process is reintroducing the foods I've been told to restrict and be scared of, and at this point that might be harder mentally than I realize, but eventually my body will calm down and most foods should not cause pain anymore. Do you know in the past year I've only eaten one apple? It was on the restricted list for so long, and now I'm scared to try one. Another huge part of healing is figuring out what causes me stress and finding better ways to cope with those things and calm my nervous system down. I don't have anxiety though I sometimes feel anxious; however, I often feel stressed. If I were to sit and write out everything I'm currently stressed about, the list might be around 50 things. Most of those I don't feel I can do anything about because they're out of my control, but they affect me. Maybe I need to write all the stressful things down and make a plan for each item. My doctor gave me a handout for GI psychologists that I can make several appointments with for the next few months to help me through the whole process. I looked into it and it will cost $3,000! Or I can research and find resources online to try it on my own first. I have a "cognitive behavior therapy for gastrointestinal problems" book coming in the mail.
- Deep diaphragmatic breathing exercises my doctor wants me to try that will help my stomach and digestion. There are videos online she said are great at guiding me through this.
- I'm going to have to learn to take care of myself, say no instead of people-pleasing, find daily routines that calm my stress and help my stomach, learn to eat regular food again, and reframe my thoughts until my body follows and doesn't believe it's in danger anymore. I have all the tests from the past 18 months as proof to tell my mind my body is working. It's going to take time and lots of work to turn this around, but it's possible, and that gives me hope I haven't had in a long time. I'm also going to be realistic, because functional dyspepsia can't be cured but it can be managed, put into remission, and the symptoms can be reduced to a point where I won't notice them much. So that's the goal.
Functional dyspepsia symptoms are usually meal-related and include:
- Postprandial fullness: Uncomfortably full soon after eating.
- Early satiety: Inability to finish a normal-sized meal.
- Epigastric pain/burning: Pain or burning in the upper abdomen, not necessarily related to eating. Other symptoms: Nausea, excessive belching, or bloating.
The exact cause is often unknown, but it is considered a disorder where the gut and brain do not communicate properly, often involving:
- Delayed stomach emptying: Food stays in the stomach too long.
- Visceral hypersensitivity: The nerves in the stomach are hypersensitive to normal function.
- Post-infection inflammation: Excess white blood cells (eosinophils) in the duodenum.
- Risk Factors: These include lifestyle factors like smoking, chronic anxiety/stress, and the use of nonsteroidal anti-inflammatory drugs (NSAIDs).
Diagnosis follows the Rome IV criteria, which require symptoms to be present for the last three months, with onset at least six months prior. Crucially, an endoscopy must be performed to rule out ulcers or other structural diseases.
Management focuses on symptom relief:
- Dietary changes: Avoiding fatty/spicy foods and eating smaller, more frequent meals.
- Medications: Proton pump inhibitors (PPIs) to reduce acid, H2 blockers, or prokinetics to improve stomach emptying.
- Neuromodulators: Low-dose antidepressants may help reduce the pain signals from the gut to the brain.
- Lifestyle: Stress reduction techniques and smoking cessation.
Functional dyspepsia is a chronic condition that can have a relapsing and remitting course. While it is generally not life-threatening, it can significantly impact quality of life.
Here's some more (copied) info about VISCERAL HYPERSENSITIVITY:
Visceral hypersensitivity is a condition that affects the way your body interprets signals from your internal organs, particularly the gastrointestinal (GI) tract. Often associated with conditions like irritable bowel syndrome (IBS), visceral hypersensitivity can lead to heightened sensitivity to normal sensations, causing discomfort and pain.
At its core, visceral hypersensitivity involves a heightened response to stimuli within the GI tract. Normally, the gut sends signals to the brain to indicate sensations like fullness, hunger, or discomfort. However, in individuals with visceral hypersensitivity, these signals are exaggerated, leading to a perception of pain or discomfort even in response to mild stimuli.
The exact cause of visceral hypersensitivity is not fully understood, but it’s believed to involve a complex interplay of factors including genetics, gut microbiota, psychological factors, and environmental triggers. Stress, anxiety, and certain foods may exacerbate symptoms in susceptible individuals.
The symptoms of visceral hypersensitivity can vary widely but often include abdominal pain, bloating, altered bowel habits, and general discomfort in the abdominal region. These symptoms can significantly impact quality of life, leading to missed work or social activities and contributing to emotional distress.
Managing visceral hypersensitivity typically involves a multi-faceted approach. Dietary modifications, such as eliminating trigger foods like spicy or fatty items, can help reduce symptoms. Stress management techniques, including relaxation exercises and cognitive behavioral therapy, may also be beneficial in mitigating symptom severity.
Medications may be prescribed to help control symptoms, including antispasmodics to reduce gut contractions, antidepressants or anti-anxiety medications to address psychological factors, and pain relievers to alleviate discomfort.
In severe cases, where conservative measures are ineffective, more invasive treatments such as nerve stimulation or surgery may be considered.
In conclusion, visceral hypersensitivity is a complex condition that can significantly impact daily life for those affected. By understanding the underlying mechanisms and implementing appropriate management strategies, individuals can work towards achieving better symptom control and improved quality of life.
