My Personal Experiences with Epiphrenic Esophageal Diverticulum (Plus Tips to Help Cope)
Two New Diagnoses – Epiphrenic Esophageal Diverticulum & Mitral Valve Stenosis
Whilst I haven’t heard much good news in a long time, I did not expect 2025 to be a harbinger of such terrible news. It seems like I will need to get two major surgeries done, one for a severe mitral valve stenosis, and the other for an epiphrenic esophageal diverticulum. Well technically, epiphrenic esophageal diverticula, since there are two of them. Oh, and I also broke my molar tooth on Christmas Eve, so that was a bonus.
*Disclaimer: This article is meant for educational purposes, and is based on my personal experiences as a patient. Whilst I have done my utmost to be meticulous in research, I am not a doctor, and nothing in this article should be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols. This post may also contain affiliate links. It will cost you nothing to click on them. I will get a small referral fee from purchases you make, which helps with the maintenance of this blog. Read our Privacy Policy page for more information. Thank you!
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Classifications for Esophageal Diverticulum
To be honest, the diagnosis for epiphrenic esophageal diverticulum scares me more than the mitral valve stenosis, only because it’s so rare. In practice, esophageal diverticulum is divided into a few different types of classifications from an anatomical and etiopathogenic point of view (Constantin et al., 2023). They are also subdivided based on their location. WebMD summarises the different types of esophageal diverticula here, although the classifications can get even more fine-grained than that (Whitten, 2024, February 20).
However, from what I’ve gathered after reading multiple medical journals, there is currently no agreed upon standard for treatment. Classifications for the disease itself are not even ‘finalised’, so to speak. Meaning there is no handbook or protocol for doctors or surgeons to refer to for this condition, and it’s mainly ‘play by ear’. Both my surgeon and doctor at the hospital have only seen one case in their career.
I’ll talk about the stenosis in a separate post, as I would like to focus on my diagnosis and symptoms for epiphrenic esophageal diverticulum in this one. This post is part of a two-part series. I will share my personal experiences in this one; you can find more research and facts on esophageal diverticulum in this post.
How I Learned About My Epiphrenic Esophageal Diverticulum
I reluctantly admitted myself to the A&E/ER one evening, as my forearm was bloated and swollen. It felt like my skin was going to burst. The only reason I had gone to the A&E was because the GP had assumed it was an abscess.
The rheumatology team saw me the next day, whilst I was snoozing along the corridor of a random ward. They were collectively certain that it was a blood clot, considering I have Antiphospholipid Syndrome, a blood clotting disorder. A few scans and tests later, they were all surprised that it wasn’t a blood clot, neither was it a fracture.
They did however, find some liquid near my lung, and the outpouching characteristic of esophageal diverticulum. According to Constantin et al. (2023), “somewhere between 0.06 – 4% [of epiphrenic esophageal diverticulum] are discovered incidentally, radiologically”.
The swollen arm and liquid in the lung subsequently resolved on their own. In fact, when they wheeled me in to do a pleural biopsy, they wheeled me back out as the surgeon said that ‘there was nothing to biopsy’. This is why I rarely rush to the A&E for every pain, even if extreme. Living with chronic illness means constant pain, and the occasional weird symptom.
My own rheumatologist said that the esophageal diverticula probably have been there for some time. He also said it was probably unrelated to my other autoimmune diseases, though I really beg to differ. I personally think it doesn’t make sense that none of my long list of medical conditions are related.
My Epiphrenic Esophageal Diverticulum Symptoms
According to Sato et al. (2023), the main symptoms of esophageal diverticulum are “dysphagia, regurgitation, weight loss, heartburn, respiratory complaints, and retrosternal pain when swallowing food”.
My own biggest problem was and is regurgitation, especially whilst asleep in the middle of the night. I wake to violent fits of coughing, as my esophagus tries to purge the food trapped within the pouches. Sometimes my throat is so irritated that I vomit. In fact, it happened twice again last night.
At first, I had simply assumed that it was GERD/acid reflux, as I am on long-term steroid therapy for Lupus and Sjögren’s disease. Plus I drink way too much coffee, and my eating habits are not the best (yes, sue me). When I received the diagnosis for epiphrenic esophageal diverticulum, everything made so much more sense.
Other symptoms I’ve had to date are: minor incidents of dysphagia (trouble swallowing food), and being really gassy. My digestive system makes a lot of weird noises, and I feel bloated and uncomfortable. These are sporadic with no fixed pattern. My doctor has said before that I probably have Irritable Bowel Syndrome (IBS) too, so I’m not sure what’s triggering what. Chronic illness comorbidities are fun like that.
In addition, my throat often feels scratchy, as if there are tiny specks of food trapped within it, plastered to the ‘walls’. There are ‘better’ and worse days as well. On the ‘better’ days, the symptoms are mostly quiescent with some minor coughing. On bad days, that ‘stuck’ feeling is there for almost 24 hours, and I am unable to eat without vomiting.
My Increase in Symptoms
The symptoms rapidly became worse over time. I am now being involuntarily woken almost every night by violent coughing, regurgitation and vomiting. On a ‘better’ night, I wake once or twice. On a ‘bad’ night, that would be at least every 2 hours.
Combine that with horrendous chronic urticaria that antihistamines barely alleviate, it means that I hardly get a good night’s sleep. In fact, that happened again last night, as I was up until 6am scratching and coughing.
Unsurprisingly, this isn’t great for my physical or mental health, as I feel extremely frayed at the edges, and completely worn out. What sort of life is this, if I am in pain and discomfort both day and night? What makes it even more depressing is that there is no medication to even relieve some of the symptoms either.
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More Information About Epiphrenic Esophageal Diverticulum
This section covers more about epiphrenic esophageal diverticulum specifically. You can read the research post for more information about esophageal diverticulum in general.
My two diverticula are mainly epiphrenic in nature (towards the tail end of the esophagus), although one is slightly higher up. Out of the various types of esophageal diverticulum, epiphrenic esophageal diverticulum comprises less than 10% of all cases, with an estimated incidence of 1:500,000 per year (i.e. 1 out of half a million people) (Abdollahimohammad et al., 2014). The most common is Zenker’s diverticulum, which occurs at the top end of the esophagus.
According to Alicuben et al. (2023), patients with epiphrenic esophageal diverticula are symptomatic only about 10% to 20% of the time. Symptoms tend to begin when the diverticulum becomes bigger than 5cm (Abdollahimohammad et al., 2014).
Having said that, both my epiphrenic esophageal diverticula are a little smaller than 5cm, and I have been progressively symptomatic. I’m unsure if that’s good or bad luck. Good because I guess, well, treating something earlier is usually better than later. Bad because the symptoms are obviously not fun.
The Complications of Epiphrenic Esophageal Diverticulum
Many symptoms of epiphrenic esophageal diverticulum are similar to other gastrointestinal and common medical conditions, such as acid reflux or side effects of NSAIDs. As a result, many patients with epiphrenic esophageal diverticulum are diagnosed late, which can lead to further complications, such as “gastrointestinal bleeding, aspiration pneumonia or cancer” (Conklin et al., 2009).
The incidence of cancer in patients with epiphrenic esophageal diverticulum is around 0.3% to 3%, and it is often at an advanced stage when discovered (Conklin et al., 2009; also see: Hjern et al., 2015). According to Constantin et al. (2023), there is also the risk of developing esophageal cancer, around 10 years after symptomatic esophageal diverticulum.
Some Other Characteristics of Epiphrenic Esophageal Diverticulum
According to Constantin et al. (2023) there is “no correlation between size and retentive character” for epiphrenic esophageal diverticulum in particular. That means that food and liquid can get stuck regardless of the size of the epiphrenic esophageal diverticulum, to give rise to symptoms.
In addition, “one of the early signs of food stasis in a pharyngeal-ED [esophageal diverticulum] is the appearance of hydro aerial noises when ingesting fluids”. As a result of food stasis, sialorrhea (hypersalivation) occurs (Constantin et al., 2023).
After reading that, I wondered if my drooling at night is a consequence of the epiphrenic esophageal diverticula. But as I need to wear a mouthguard for bruxism and TMJ disorder issues as well, I suppose it could be multifactorial.
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Confirmation of My Epiphrenic Esophageal Diverticulum Diagnosis – a Barium Swallow Test
After the incidental finding of the epiphrenic esophageal diverticulum, I was scheduled for a barium swallow test. This is one of the more definitive tests for esophageal diverticulum, and also certain motility disorders such as achalasia (Sudarshan et al., 2021).
I was made to drink a chalky liquid at intervals, as the medical team watched and timed the flow under fluoroscopy (a type of x-ray that shows the movement of organs in real-time) (MedlinePlus, 2024, August 27). The mixture tasted quite nice to me, a bit like yoghurt, but don’t take my word for it as the technician said that no one else likes it. The doctors’ biggest concern was achalasia, which the team decided that I did not have based on the test. They were also able to measure the size of the diverticula and gather other information from the barium swallow test.
Other Essential Preoperative Tests for Epiphrenic Esophageal Diverticulum
I will need to get surgery done in my surgeon’s opinion. Whilst it’s a fairly high-risk surgery, I am going to agree with him, as the symptoms are becoming unbearable and interferes with my life every day. Some preoperative tests will need to be done, namely an upper endoscopy and manometry.
Whilst the surgeon has said that the manometry might not be necessary since we’ll need to do a fundoplication (an anti-reflux procedure) during the Heller’s myotomy (surgery) regardless, I insist upon it. This is because epiphrenic esophageal diverticulum mostly stems from a motility disorder, so it is best to treat the underlying cause if so. Whilst the fundoplication might treat any existing motility disorder, I think it’s best to actually know what the disorder is, if there is indeed one.
According to Alicuben et al. (2023), “failure to identify and treat the underlying motility disorder during diverticulum resection has been associated with high rates of recurrence and leak along the staple line in the range of 10% to 20%.” They also state that, “specifically, failure to perform an adequate myotomy in such patients has yielded leak rates exceeding 25% when diverticulectomy alone is performed”.
You can learn more about these diagnostic tests, surgeries and why they’re important in the post here.
General Symptom Management for Epiphrenic Esophageal Diverticulum
As mentioned, there is no medication to help with symptom relief, and the doctors don’t have much clue about it either. The advice I was given by the gastroenterologist was rather generic, and there aren’t many tips online either. The closest I have found for managing epiphrenic esophageal diverticulum are general esophageal soft food diet tips.
A list of esophageal soft food diet tips can be found on the Cedars Sinai (2018, May 30) website, and includes: eating slowly in small amounts, chewing thoroughly, drinking fluids whilst eating to flush the food down, sitting upright whilst eating and up to 60 minutes after, avoiding food 3 hours before sleeping, avoiding caffeinated beverages, avoiding tough meats, abrasive foods and breads with chewy textures, and to stop eating when you start to feel satiated. This is pretty much what the gastroenterologist has advised me to do for symptom management of my epiphrenic esophageal diverticula.
You may or may not have trouble digesting food in and of itself with epiphrenic esophageal diverticulum. However, many of the symptoms mimic those of esophageal cancer or a motility disorder. Thus, many of the symptom management tips closely resemble these diseases. It also largely depends on your personal symptoms, how and when it affects you. For instance, regurgitation whilst sleeping is my biggest symptom, so my management plan might look different from yours, if you mostly get dysphagia instead.
Dietary changes and eating times are primary ones, however. According to Yam et al. (2023, April 24), “if patients are not surgical candidates, then management with diet changes such as eating bland food and drinking water after every bite to help flush any food out of the diverticulum is recommended”.
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How I’m Personally Managing My Epiphrenic Esophageal Diverticulum Symptoms
It’s been a lot of trial and error for me, personally. I have a rough idea of which types of food cause the most damage, having learned the painful way. By sharing these personal experiences, I hope that it saves you some pain.
There are also a few things I want to try but have yet to do them regularly, so I’ll update the post after I’ve experimented with them a bit more. One thing I’d like to try is stretching to aid with digestion, and make it a nightly routine. It seems safe and simple enough to try and implement.
Dietary & Lifestyle Changes
I rarely eat at regular timings, so I’m trying to work on that. I think it’s helped a little, mainly because there is less acid reflux, which can also contribute to irritation along the digestive tract – which includes the esophagus.
The most painful episode for me so far was eating a bag of risotto chips at night, because I thought that rice crackers would be less abrasive and easier to digest than potato or corn chips. I was proved so terribly wrong, as I was up all night coughing and vomiting every 2 hours, and even the entire day after as well. I now have a phobia of anything crunchy, and avoid them especially at night.
Food Textures Matter a Great Deal
I’ve found that foods that are either crunchy or flaky to be the worst, and also anything with lots of ‘specks’ in it, such as black peppercorns.
I probably don’t have to explain ‘crunchy’ to you – stuff like crisps, deep-fried chicken and certain cereals. ‘Flaky’ includes bread, sugary candies like soan papdi (which I love), ginger slices, and basically anything that can be broken down into strips, if that makes sense.
Bread, especially sliced bread with lots of ‘air pockets’ tends to be the worst. This is because they get chewed up into tiny specks that ultimately become trapped in the pouches of the esophageal diverticula. I can feel them tickle at my throat, begging to be spat out. And when they refuse to budge, my body reacts and expels them via vomiting.
The suggestion to ‘eat bland food’ does not appeal to me in the least bit, because I have also developed a phobia after only eating bland food for months on end whenever hospitalised. I call it ‘sick people food’, and the thought makes me depressed. However, the pain and discomfort from the esophageal diverticula means that sometimes, that’s worth the sacrifice.
Avoid Supper at All Costs, if Possible
My sleeping hours are very irregular, as one night of painsomnia can trigger a domino effect for days. So I tend to eat supper, especially if I hadn’t had much to eat earlier on in the day. Whilst the gastroenterologist did say not to eat 2 hours before sleeping, I find that I need to avoid eating right after dinner. It was difficult at first, because my body had been primed to want to eat at night. It’s much better now though. That little change does make a rather big difference.
I did try drinking fruit juice at night as I thought it was categorised as a ‘liquid diet’, but that didn’t work out too well for me at all. The fibre from the fruits tend to be like ‘strings’, so those get trapped in the esophageal diverticula pouches, too. According to Marcin (2024, March 25), such fruits are hard to digest because fibre “isn’t digested by your body”. Whilst the esophagus is technically before the digestive juices start their action, I guess this rule applies too, but in a different way. I’m learning as I go along.
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Foods That are Fine for My Epiphrenic Esophageal Diverticulum
For more substantial meals, soups and stews (including stewed meat and vegetables), work best for me so far. As stews are boiled for a long period of time, this helps to break the food product down partially. In a gross metaphorical sense, they’ve been ‘pre-chewed’ a little to make things easier for you.
I eat less white rice than the average Asian, as it makes me feel quite bloated if I have too much of it. It is still a staple, and apart from bloating, doesn’t cause too much distress. I suppose that’s because they’ve been dehusked and are cooked, making them soft and less fibrous. Noodles and pasta are also okay in general, as once again, I guess it’s because they’ve been cooked at high temperatures.
Other foods I can tolerate with the epiphrenic esophageal diverticulum are: mashed potatoes, eggs, fish, spreads (like jams and compotes), any cooked meat or vegetable, and yoghurt. Things that are okay on the ‘naughty’ food list for me include: ice cream, marshmallow, bingsu (Korean shaved ice dessert), sorbet, jelly and custard.
Foods That Cause Pain for My Epiphrenic Esophageal Diverticulum
Foods that cause me the most pain, in hierarchical order, include: crisps/chips, sliced bread, cookies and biscuits, and high-fibre fruits. Whilst some of these foods can be quite plain, remember that it isn’t so much that your stomach has trouble digesting them. Rather, the pouches from the esophageal diverticula trap some food products more so than others. The time of consumption matters as well. So if I want to try my luck eating one of these food items, it’s safer to try it as early on in the day as possible.
Northwest Minimally Invasive Surgery (2021, April 20) has an information page for patients who have had esophageal or stomach surgery, but the advice is pretty relevant for epiphrenic esophageal diverticulum, too. They state that “it is important that foods consumed be smooth in texture to facilitate the movement of food through the swollen areas of the esophagus or stomach. Bread products that can expand with fluid are avoided entirely”. They also have a list of foods allowed and foods to avoid that makes total sense to me. The list is similar on the Cedars Sinai (2018, May 30) blog about esophageal dietary guidelines as well.
Experimenting with Supplements & Medications for Symptom Relief
I was suffering from two days of bloatedness and regurgitation a while back, and just randomly thought I’d try some magnesium. The justification being that magnesium is an essential mineral for the proper functioning of over 300 enzymes in the body, which includes muscle relaxation and digestion (Al Alawi et al., 2018).
I took a magnesium carbonate effervescent tablet, and was amazed to find that it helped to relieve the epiphrenic esophageal diverticulum symptoms a fair bit. I’m not sure how the esophagus is associated, but hey, it helped with some relief from two days of discomfort. Placebo or not, I’ll take it as a win, and something to add to my pain management toolkit. (I personally like the range of effervescent tablets from Voost.)
However, do note that this ‘trick’ isn’t fail-proof. Half the time it doesn’t work and I still wake up coughing and regurgitating. So I guess the magnesium simply aids with digestion and relaxation in general, which probably has an indirect effect on my body overall.
Interestingly, I did a search about it the next day, and found that magnesium supposedly helps some people who have achalasia. I couldn’t find any papers for it though, as esophageal diverticulum is a rare disease. Healthline has a list of the different types of magnesium supplements, which is interesting general knowledge (Hill, 2023, May 11).
Cough syrup also surprisingly seems to help with the non-stop coughing, even though it’s irritation from the esophagus, instead of the trachea/windpipe. I suppose it suppresses the urge to cough regardless? Having said that, both my parents are having an extremely bad cold and cough at the moment, so perhaps I’ve caught the bug, too. I’ll wait for a couple more weeks before concluding on the cough syrup relief.
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Conclusion on My Personal Experiences with Epiphrenic Esophageal Diverticulum
In sum, epiphrenic esophageal diverticulum is an extremely rare disease with limited research comparatively, so symptom and pain management are mostly through trial and error. Whilst it is not deadly in and of itself unless something rare happens (such as a rupture that will not stop bleeding), it tends to worsen over time. There is also a very small risk of esophageal cancer further down the road. It has definitely ruined my quality of life, especially with the regurgitation whilst sleeping at night. The dietary and lifestyle changes are annoying, because managing my other chronic illnesses is demanding enough.
Whilst I am certainly not looking forward to yet another high-risk surgery in a relatively short span of time, I really hope that I feel better after I recover from it. I’ve read a few Reddit threads on other patients’ experiences with Heller myotomy and fundoplication surgeries, and some of the aftereffects sound really painful and scary. But I guess I don’t really have much of a choice, do I?
If you’ve never had surgery or been chronically ill – the healing process is actually the worst, only because it’s the most boring, painful and helpless period. All you can do is wait for the pain to subside and the wounds to close, which can take months and sometimes, years. But I guess, hope for symptom relief is what keeps me, and others like me, going.
Learn More About the Super Rare Disease – Esophageal Diverticulum
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- Abdollahimohammad, A., Masinaeinezhad, N., & Firouzkouhi, M. (2014). Epiphrenic esophageal diverticula. Journal of Research in Medical Sciences : The Official Journal of Isfahan University of Medical Sciences, 19(8), 795–797. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235103/
- Al Alawi, A. M., Majoni, S. W., & Falhammar, H. (2018). Magnesium and Human Health: Perspectives and Research Directions. International Journal of Endocrinology, 2018, 9041694. https://doi.org/10.1155/2018/9041694
- Alicuben, E. T., Luketich, J. D., & Levy, R. M. (2023). Epiphrenic Diverticulum. In Pryor, A. D. & Hawn, M. T. (Eds), Operative Techniques in Foregut Surgery (2nd ed.), 1. Wolters Kluwer Health. Retrieved from https://books.google.com.sg/books?id=xmGvEAAAQBAJ
- Cedars-Sinai. (2018, May 30). Esophageal Soft Food Diet Guidelines. Cedars-Sinai. https://www.cedars-sinai.org/blog/esophageal-soft-diet-guidelines.html
- Conklin, J. H., Singh, D., & Katlic, M. R. (2009). Epiphrenic Esophageal Diverticula: Spectrum of Symptoms and Consequences. Journal of Osteopathic Medicine, 109(10), 543–545. https://doi.org/10.7556/jaoa.2009.109.10.543
- Constantin, A., Constantinoiu, S., Achim, F., Socea, B., Costea, D. O., & Predescu, D. (2023). Esophageal diverticula: From diagnosis to therapeutic management—narrative review. Journal of Thoracic Disease, 15(2), 759–779. https://doi.org/10.21037/jtd-22-861
- Hill, A. (2023, May 11). 10 Types of Magnesium (and What to Use Each For). Healthline. https://www.healthline.com/nutrition/magnesium-types
- Hjern, F., Mahmood, M. W., Abraham-Nordling, M., Wolk, A., & Håkansson, N. (2015). Cohort study of corticosteroid use and risk of hospital admission for diverticular disease. British Journal of Surgery, 102(1), 119–124. https://doi.org/10.1002/bjs.9686
- Marcin, A. (2024, March 25). What Foods Are Easy to Digest? Healthline. https://www.healthline.com/health/easy-to-digest-foods
- MedlinePlus. (2024, August 27). Fluoroscopy. MedlinePlus. https://medlineplus.gov/lab-tests/fluoroscopy/
- Northwest Minimally Invasive Surgery. (2021, April 20). Esophageal Soft Food Diet. Northwest Minimally Invasive Surgery. https://www.northwestmis.com/procedure/esophageal-and-stomach/esophageal-soft-food-diet/
- Sato, Y., Tanaka, Y., Ohno, S., Endo, M., Okumura, N., Takahashi, T., & Matsuhashi, N. (2023). Optimal surgical approaches for esophageal epiphrenic diverticulum: Literature review and our experience. Clinical Journal of Gastroenterology, 16(3), 317–324. https://doi.org/10.1007/s12328-023-01765-2
- Sudarshan, M., Fort, M. W., Barlow, J. M., Allen, M. S., Ravi, K., Nichols, F., Cassivi, S. D., Wigle, D. A., Shen, R. K., & Blackmon, S. H. (2021). Management of Epiphrenic Diverticula and Short-term Outcomes. Seminars in Thoracic and Cardiovascular Surgery, 33(1), 242–246. https://doi.org/10.1053/j.semtcvs.2020.08.017
- Whitten, C. (2024, February 20). What to Know About Esophageal Diverticulum. WebMD. https://www.webmd.com/digestive-disorders/esophageal-diverticulum
- Yam, J., Baldwin, D. L., & Ahmad, S. A. (2023, April 24). Esophageal Diverticula. In StatPearls [Internet]. StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK532858/
