Living with Functional Dyspepsia and a Stoma: Seeking Advice and Experiences

Hello,

Apologies if I am posting in the wrong subforum.

I live with functional dyspepsia, specifically postprandial distress syndrome (PDS) subtype. This means anything I eat or drink causes significant abdominal bloating and pain. The condition is not a result of a food intolerance, nor is there anything structurally wrong in my bowel/stomach (it is a functional problem). I was initially diagnosed with IBS-C by a gastroenterologist who prescribed me every laxative possible along with antidepressants, though these do not help. The doctors didn't know what to do with me for a number of years, and I was bouncing back and forth from psychiatry to gastroenterology until 2022 when they decided to do a loop end ileostomy. While this has helped with getting stuff out of my system (I have a separate evacuation disorder), I still experience the bloating and abdominal pain after food. The specialists explained that this is because the underlying issue is related to the brain-gut axis, with some disturbance occurring in the messaging between them, resulting in PDS. I was then prescribed low-dose antidepressants, which are meant to help with the brain-gut connection, but I have not had a positive reaction, with my main symptoms persisting.

I was wondering if anyone is in a similar boat, as I am unsure what the doctor will have to offer further. It appears that I have reached a dead end with them, as they have given me what people usually find helpful. My questions are as follows:

1. Has anyone experimented with alternative therapies such as gut-directed hypnotherapy or acupuncture? Any success?

2. Have you found any medication or combination of medications that can help? I have been offered SSRIs and tricyclic antidepressants, though neither of these has helped. I have tried mirtazapine, duloxetine, and amitriptyline recently (not together), but none of these medications are treating the abdominal pains and bloating after food.

Please let me know if you have any advice or experience in handling this. Thank you for your help in advance!

Hey there, boy, have I been there! It took doctors almost 20 years to figure out both upper and lower digestive problems. I have a number of issues that cause bloating, pain, and pressure fullness very quickly. I have GERD and other problems, and also gastroparesis, which is a dysmotility of the stomach. Best advice when it comes to the stomach and what I have learned: one, eat smaller meals, like toddler size, and eat them slowly; chew, chew, and chew some more. Find out which foods are easier to digest, take small sips of water, not big ones, and avoid foods that do not irritate the stomach lining, such as red sauces and high-acid foods and drinks. No greasy or fried foods, no breaded foods. Try white bread instead of wheat. For any type of gas pressure, 7-Up or ginger ale. And get a really good antacid; Protonix is an excellent one. If you have nausea, take anti-nausea medication. But I'm not sure why they would put you on an antidepressant for a stomach issue. I know what you wrote, but if there is a misfire with the signals from brain to gut, an antidepressant isn't going to fix it, hate to say.

I was recently prescribed duloxetine for peripheral neuropathy (pain from which is basically misfiring nerves, not unlike phantom limb syndrome). Apparently, at least for some people, antidepressants do help with misfiring nerves. I've seen where others were prescribed amitriptyline for the same reason.

It's a legitimate approach, but like anything, it will only work for a portion of the patient population. I've seen multiple people who found long-term relief and others who got no benefit. Apparently, you are in the unlucky group.

Acupuncture is frequently touted on peripheral neuropathy sites. Since there's a core similarity in the conditions, I'd think acupuncture is worth a try.

But Beth's advice on eating is tried and true, so don't miss that. I'm coming from a very different angle.

SusanT, that's good advice on a completely separate issue. Unfortunately, it's two completely different things.

As I've recently been reminded, people are free to ignore any advice that they feel doesn't fit.

Living with Your Ostomy | Hollister

SusanT, I was just saying it's a different circumstance and works differently than nerve pain and the way the nerves work, sending signals for pain or neuropathy versus with the stomach and signals. Didn't know if you knew that.

I wasn't trying to say it was identical. I had 2 points.

1) If the doctors think there is nerve mis-signaling going on, and it sounds like they do, then antidepressants are a legitimate thing to try. I didn't want him to think he was being gaslighted by having been given antidepressants.

2) Acupuncture was a reasonable thing to try.

You are more than welcome to disagree with those points. But I thought they were points worth making. I really don't see the problem here.

There isn't, nor was there ever, what I tried to say in my last post to you. It seems you're making a bigger issue about it.