Functional dyspepsia
Hi everyone,
Really happy to be joining this community!
In 2013 I started experiencing symptoms of chronic dyspepsia as well as early fullness. Constantly feel discomfort in stomach, nausea and occasional constipation. The main problem is early fullness: I feel totally sick after a couple bites or sips of anything. In the last couple years I've lost a bunch of weight.
Four different medical teams have tried to figure out what's wrong. Two CT scans, an MRI, 4 endoscopies, a colonoscopy, multiple pathology tests, a gastric emptying study, and four upper-GI series. I've not undergone any procedures or been put on medication for more than a week or two at a time.
At the moment two different medical teams are arguing about what's wrong with me. One believes based on an MRI and CT scan that there is an outflow obstruction after the second part of my duodenum, which they think is annular pancreas or some close variant. They believe that by bypassing my duodenum they will relieve me of the symptoms. The other team (looking at the same images) thinks there isn't evidence to justify an operation and thinks the problem is functional. Both teams agree that the duodenum is slightly dilated, and there is some amount of narrowing after the second phase.
I don't know what to do since we've basically exhausted all of the different imaging and scope-based tests as far as I can tell.
If anyone has suffered from these symptoms before or been in a similar situation, I would greatly appreciate hearing your stories.
Thank you so much,
Joseph
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Florstor
I was recently diagnosed with Functional Dyspepsia and the only symptom I have is upper abdominal burning (not inside the stomach itself). They started me on Desipramine 25mg (a low dose tricyclic for pain but in larger doses it treats depression). I'd like to know what others have found helpful and what symptoms you have.
I read your story with great interest and so sorry for what you are going through. Several years ago I could not eat more that a few bites of food, like you, and lost too much weight. They did several tests, including a Hyda scan ( for gallbladder) and it was negative. The pain and nausea went on for a year and then I was hospitalized. After a week there, they did another type of scan and it showed a diseased gallbladder (no stones) so they removed it and it made the symptoms disappear. I recently had an endoscopic ultrasound for upper abdomen burning (not inside the stomach itself) and only had a narrowing of the common bile duct, so it was negative.
Now diagnosed with Functional Dyspepsia and put on 25mg of Desipramine to see if it will help. I realize you posted this in 2017. How are you doing now and what did they find out?
I have functional dyspepsia. I think of it as the "IBS" of the upper GI tract...neither is fun.
The worst of my symptoms are distention and bloating, upper GI pain, but mine is more cramping and heaviness after and sometimes during eating, early satiety (get full quickly) and appetite loss. I have some lower abdominal pain too, but the FD pain is more limiting for me.
I'm very sensitive to medications, and my GI doctor knows this, so we didn't immediately go that route. She did mention they often prescribe low doses of neuromodulators (aka antidepressants) for GI conditions because FD and IBS are considered to be disorders of brain-gut communication.
I took FDGard, which is an over-the-counter blend of caraway oil and peppermint oil. It's enteric coated so that it makes it intact to the place where it needs to break down to sooth the pain. I found it very effective for pain and cramping if taken 30 minutes before eating, but sometimes the peppermint oil aggravates people with reflux or the "cooling" sensation can be disconcerting... I prefer that to the pain though. It's really expensive though and there's not really a good generic substitute because these are enteric-coated. It probably has the most immediate effect for me. It can also be taken after eating, but I find it doesn't work as well when I take it that way.
I've also used Iberogast, which is an herbal blend (both FDGard and Iberogast have been clinically tested) that you put in a liquid and drink. There's more flexibility than FDGard because you can take it right when you eat or symptomatically. Iberogast is a first line treatment for IBS and FD in Europe and Canada, for some weird reason it's not in the US. My dietician told me about it. You can order it online or I order it from a site called Northern Vitality. I usually use it for pain after eating. It feels not as strong to me as FDGard.
My GI also referred me to see a GI psychologist (I'm seen at an academic medical center), but the rationale as is when you calm the brain and nervous system, because of the mind-gut connection, it can also calm GI symptoms. Even when you feel actively calm, the central nervous system can still be riled up. I have other chronic pain conditions, so this is usually the case. It can sound minimizing or "woo woo," but we worked on different breathing techniques, which for me is effective for taking the edge off pain. Most GI psychologists also practice gut-directed hypnotherapy, which feels more like a guided meditation to me. I didn't really get to try it because my sessions got interrupted by pandemic lockdowns, but you can find hypnotherapy recordings online or in the app Insight Timer. There's a paid app called Nerva; it's technically for IBS, but the app is still applicable for FD symptoms.
Last, I recently started experimenting with enzymes (think like Beano and Lactaid)... For some people, our body is more sensitive to the normal sensations that happen when food breaks down in the stomach and gut and that causes the pain. The enzymes for beans and lactose intolerance are more well-known, but a type of carbohydrate called fructans (sorry if you already know all this, but I didn't when I got diagnosed) in one of the most common sensitives--it's found in garlic, onion, wheat. Those are clear triggers for me, so my dietician recommended this new product called Fodzyme, which is one of the few products on the market that has enzymes to help with fructans. It's sooo expensive though! All gut medications are so expensive for some reason.
There are diet interventions and people will swear by eliminating gluten or sugar, or whatever (but more power to those people if it makes them feel better), but my dietician specializes in gut health and she said there's really not much research and more and more the research is showing that restrictive diets can lead to development of disordered thoughts around eating. It may be part of the reason why there's a higher incidence of eating disorders in people with functional GI conditions than in the general public. That happened to me, and food restriction really stressed me out, when I had never been susceptible or concerned about what I ate before, so for that reason I've done a lot of work with my dietician on expanding what I'm able to eat while also considering my symptoms. But if it's something you're interested in looking into, there are a lot of conversations probably here and in other places about the best diets for it.
Yes my doctor try that to tell I have functional Dysfunctionb.i tell my mind doctor it's not in not it's not in my head and I'm not trying to get attention and I told her I don't like to be put on antidepressants. I don't like it when they try to make a big words to to try to say that you're depressed or have an anxiety. 💩💩💩💩🤮🤮🤮. I said yes you know I had the gastroparesis yes I had to miss mobility and yes I have the slow moving a constipation and yes I have acid reflux and yes my do not contract so I have a and yes I have a pelvic floor issue . That's how .Long as I got King Jesus I don't need no antidepressant pills. And all my medical history because it is test and detest all that stuff.
Sorry I send it but it really helps me is drinking ginger tea and sucking on the gym ginger candy. And no I'm not I know a specialty that like Atkins are the carb diet I think that's bad anyway. Cuz your doctor ever checked you for has your doctor ever checked you for tickle Dolores.
It’s common to use antidepressants for chronic pain and GI symptoms, because they act on the parts of the brain that can affect signaling for pain and the brain/gut connection. It doesn’t necessarily mean someone has depression or anxiety or that it’s in your head. One of the reasons they’re using the term “neuromodulators” now is to reduce the stigma and to represent that the medications can be used for other conditions besides anxiety and depression. The dosage is different for GI conditions.
I hope that you found something to help you even if the neuromodulators weren’t the right fit for you.
Thank you for this info. The upper abdominal pain I experience is a fiery-type burn, not in my stomach. I have had a Nissan Fundoplication in the past, so I no longer have reflux and I'm also on an acid inhibitor but it doesn't help this. The only thing that helps just a little is an ice pack. And the burn happens no matter what I eat. How would you describe the pain you experience?
I have upper abdominal pain as well, but the quality of the pain for me is rarely burning. It’s more like aching and cramping.
Did you decide if you were found to try the neuromodulator/antidepressant? If so, how is it going?
I have IBS-D , Gastritis , small hiatal hernia , GERD , esophagitis , small polyps non cancerous on stomach lining , 1000’s deep wet belching and churning gut daily .
Functional dyspepsia just means you have something they can’t really diagnose or do anything about .
I’m ten years into this horror of a life .
It’s chronic and daily and I’ve tried everything! I mean you name it and I’ve tried it .
Last night I started w/ some pains on mid left side . Was like doubled over .
I have Diverticulosis which isn’t painful but this was like a bout of what seemed like Diverticulitis. Not sure .
Still going through it .
I take low dose 15 mg Mirazaipine ( generic of Remeron ), since Oct . Klonipin as needed .50 mg ( half of 1mg ), Ambien to sleep .
I also get a lot of PVC’s on & off my whole life .
I live on Ultra Pepto. It’s such a terrible way to live . I dread eating and eat healthy but just starting to actually gain weight . I need to lose 40 lbs . As little as I eat , should be 40 lbs lighter by now . Nope 👎.
I’m on my 6 th Gastro Dr in almost 11 years now . Even went to Mayo Clinic Jacksonville for tests .
They just don’t know how to treat this mess .
I wish you luck 🍀 and hope you find answers.