Posted 04 October 2017 - 01:55 AM
I've been struggling with acid reflux for 10+ years. I've seen countless doctors (in the US and Hong Kong) and still no answers or solutions. More recently my symptoms have gotten to a desperate state. Sharing my story (in great detail) here in the hopes that someone can point me in the right direction and also as a cautionary tale (make lifestyle changes sooner rather than later. Your symptoms - like mine - can always get worse!). It's a bit long, so I organised with bullet points. Thank you in advance for reading and I appreciate any feedback you have.
- At a young age, when I had eaten and was really full, I was able to bring food back up to my mouth (without the terrible sensation of vomiting), and then swallow it again. In retrospect, I attributed this to over eating and having a loose pyloric sphincter.
- I regularly had heart burn as a teenager. When I was about 21, I had an internship that I had to wake up really early for. I normally drank 2-4 cups of (typically black) coffee daily to stay awake.
- Just after the internship I had a large celebration with friends and family to celebrate my departure to study abroad in Hong Kong the following semester (my final semester of University). I ended up eating and drinking way too much greasy food and alcohol. I fell asleep on a friend’s couch, face down and on my stomach. The next morning, I woke up with a tingling feeling in my chest (just to the left of the middle of my sternum). I wasn't quite sure what it was - it didn't feel like the typical heartburn that I had dealt with so many times before. Given that it was so close to my heart, I thought it had something to do with that. So I went to the doctor’s office (still in USA) to do a couple tests. They weren’t able to find anything wrong with my heart. Thinking nothing was wrong, I decided to continue with my plans to travel to and study in Hong Kong (fall of 08).
- I was fine for the first 1-2 nights in Hong Kong. But on roughly the third night there, without warning - as I don't remembering eating, drinking or doing anything that would have triggered such a reaction, my stomach (including the surrounding rib cage) swelled up. I remember lying awake in bed that evening, scared that something was seriously wrong. I went to the nearby Hong Kong Baptist Hospital and had a number of tests completed: gastroscopy, electrocardiogram, etc. Unfortunately, none of the tests were conclusive. I never actually received a diagnosis.
- I had a rough time in Hong Kong for the next couple of months. I wasn't able to drink any coffee or alcohol. If I did I would feel some immediate pain but also some lasting fatigue. Lucky the swelling didn't come back. This went on for the next couple of months until I returned to USA in early 09.
- In the USA I went back to the doctors to do more tests: CAT scan, MRI, etc. Again, they weren’t able to diagnose my case. At the same time, my rib cage was in extreme pain. Even sitting down and resting my back on a chair would cause great pain. In just a couple months, I could see what was happening: my rib cage was actually moving. It had actually begun to expand, which I assume was an effort to provide space for my stomach, which had swelled on occasion. After about six months my rib cage stopped moving and the pain quit. However, now they were significantly wider. (As a surfer, it was very noticeable. Before I had no redness or pain on my chest from lying on my surfboard. Immediately after the rib cage pain, the pain from my ribs grinding into my surfboard was immediate).
- In mid 09 I went back to Hong Kong for work. For the most part I was back to normal. However, drinking coffee or alcohol for long periods at a time (one cup a day for 20-30 days) would start making me tired and cause a small amount of swelling. Over the years that period of time would grow shorter and shorter.
- Around 2013 the amount of days I could have a coffee before feeling swelling and tiredness had shrunk to about 3-6 days. After a couple days of feeling really tired and exhausted, I decided to go back to the doctors and do a gastroscopy. Unfortunately, the results of the gastroscopy were inconclusive. The doctors weren't able to find anything physically wrong. At this time I did find one or two drugs to be helpful: proton pump inhibitors and”Sucari” (a chalky substance that helps coat the ling of my oesophagus and stomach).
- On occasion I would get a stomach infection (nausea, diarrhoea, extreme dehydration, etc) and would need antibiotics. Each time I would take antibiotics, my ability to digest different foods would decrease significantly. In February 2016, I got food poisoning and had to go to the hospital for three days. By the time I got out I had dropped nearly 10 kgs and my stomach was having a really hard time digesting food. Not only could I not digest large amounts of food, but things like beef were now virtually off limits (just too hard for my stomach to digest). My stomach improved over time, but if I ever made a mistake and hurt my stomach, it felt like I was starting all over again.
- In September 2017, I got a stomach infection (or at least I believed it was a stomach infection). I went to the doctors and got antibiotics: Cravit. I felt better for a couple of days, but then started to feel like I had another infection (and I was still taking the Cravit). I returned to the Doctor’s. This time they gave me an antibiotic for anaerobic bacteria. The antibiotics seemed to work. Now, in retrospect, I don't think I had a stomach infection at all. 1) More recently it has become clear that if I am sitting, crouched over, for just a short time (~20-90 mins), it can cause a swelling sensation in my stomach, with lots of gas (deep burps) and loss of appetite. I know it isn't the food because there are times when I don't eat at all and I get the swelling feeling. 2) Around this time I started figuring out that there are foods that I have an intolerance to. My stomach would be easily upset when I ate overly processed foods or foods with a lot of preservatives. The week that I thought I experienced stomach infections I was actually eating quite a bit of canned foods. So it could have been that as well.
- The situation has gradually gotten worse. More and more foods I find myself sensitive to and cause swelling/gas/loss of appetite. As I mentioned in the previous bullet, the swelling seems like it can also be caused by sitting for too long.
- Interestingly, on occasion I will wake up in the morning with a small rash/discolouration (see photo). It is not itchy, and it typically goes away after about 15 minutes. It has become more common over the past 3 years. I probably get it once a week now. It's most common around my upper abdomen (like in the picture), but sometimes it shows up on the right and left side of my stomach.
- Things I have tried: gluten free diet; no processed food; all cooked food; no alcohol; no caffeine; no tea (even tea upsets my stomach); no beef (in large amounts, I find it really hard to digest)... I've also tried an elimination diet, but a) I was still getting stomach pains in the first week of the diet and when I started the diet I had just been diagnosed with CHL. I felt it was best to try the diet again after chemo treatment.
- Currently I eat very few things (especially given chemo): mash potatoes; toast; steamed veggies; pork/veggie soup; oatmeal; saltine crackers. Seriously. That is it.
- I sleep on a wedged pillow to help with digestion and avoid midnight reflux.
Classic Hodgkin's Lymphoma
Here is where things get interesting...
- In March 2019 I was diagnosed with CHL stage 2a. I'm doing 4x cycles (assuming all goes well) of ABVD chemo therapy. As of writing, I have completed 1.5 cycles.
- The specific, swollen lymph nodes are in my chest, above my heart. The obvious question is, is there any relation to my stomach pain? I'm very tempted to draw a connection. Unfortunately my stomach issues have been going on for 10x plus years. The lymphoma has probably only been in my system for 3x years max (most likely 1.5 or less). So if there is a connection, the stomach pain was probably the catalyst for the lymphoma, not the other way around. Although I can't be sure either way.
Of course I am making the assumption that the pain I have been experience for so long is strictly a stomach issue. There is of course a chance that it is an auto-immune issue, or something else. Interesting, if I look back to that first experience, with the weird tingling feeling in my chest, that is right where many of my swollen lymph nodes are now. A connection?
My mother has celiac disease, but I was tested for celiac disease in 2019 with Queen Mary Hospital and was negative. Maybe it is a different auto-immune disease. I don't know. To my knowledge, my family has no other history of significant stomach/auto-immune issues.
I have also been tested for h pylori. Negative.
Hopefully the chemo will successfully treat the CHL.
Yet, even with the cancer gone, I will still have these abdomen pains to deal with.
I have taken all sorts of supplements over the past 4 years. If I'm being honest, none of them worked. Especially given my situation continues to deteriorate.
After the chemo has completed, I expect to go back to work trying to find a diagnosis. Given I feel like my stomach has gotten worse, I'm hoping that another gastroscopy (last one done in Jan 2018. Found nothing) will shed light on the situation.
- Any idea what it could be?
- Any suggested tests that I can take to help shed light on the situation?
Thanks everyone for your input. Best of luck to each of you. Keep fighting and searching for your answers!
Posted 02 November 2017 - 03:34 AM
Thanks for sharing your story. I'm so sorry to hear what you are going through. I suffered through an intense period of LPR myself, so I can relate. It sounds like you're on the right path to healing. Probiotics really helped me big time.
Have you considered upping your dose of fruits and vegetables? Studies have shown that a Mediterranean diet could be effective at treating GERD. Also, 3 teaspoons of Bragg's Apple Cider Vinegar with 2 teaspoons of lemon juice and 1/2 cup of water can help stimulate your appetite before meals. It sounds like you might indigestion-related GERD. Hope this helps!
- YoungHK likes this
Posted 04 December 2017 - 02:49 AM
Wanted to thank you for your feedback. I appreciate it.
I did just want to share some recent news. I went to see a homeopath. He suggested that I might have a histamine intolerance. I had never heard of this and this was the first time a doctor had shared the possibility. I started taking a supplement/drug called 'intestamine'. Along with a change to my diet, it has made a significant improvement to my health. My hearth burn/acid reflux is significant less (I no longer need to take PPIs) and the swelling in my stomach is significant less. I'm really happy with the results.
- ♧Pandora☆ likes this
Posted 04 July 2018 - 02:45 PM
Posted 02 August 2018 - 04:27 AM
Thanks for information I understand how difficult to suffer .I m so happy you are doing better ..!!
Posted 18 May 2019 - 11:10 PM
Hi everyone. I just wanted to come back and provide an update.
In February 2019 I was diagnosed with hodgkin's lymphoma. I'm currently going through chemo, likely for 4x months.
The specific, swollen lymph nodes are in my chest, above my heart. The obvious question is, is there any relation to my stomach pain? I'm very tempted to draw a connection. Unfortunately my stomach issues have been going on for 10x plus years. The lymphoma has probably only been in my system for 3x years max (most likely 1.5). So if there is a connection, the stomach pain was probably the catalyst for the lymphoma, not the other way around. Although I can't be sure either way.
Hopefully, after chemo, I will be back to my normal self and in a place to continue looking for answers to my stomach pains.
Best of luck to all of you who are struggling and looking for answers. Keep fighting!