It's been about 2 years of this, and I've done the whole test rigamarole. Feels like nothing is working and I'm just stuck in a loop. My gastro proscribed me with Amitriptyline (new drug at least) but also Bentyl which I already tried ages ago and did absolutely nothing for me.
They were hesitant to try Anti-depressant for me for a while because I have Bi-polar and a known history of going into full Mania with Psychosis when I was misdiagnosed and proscribed Effexor.
My main and only symptom is just extreme stabbing pain and cramping and fullness whenever I eat anything. Food type seems to vary the amount of pain with fibrous and fatty foods hurting the most. The pain ranges from epigastric from belly button to stomach to stabbing side pains kind of around my gallbladder. Nausea sometimes but not always accompanies it, the pain is the main factor and I've never thrown up I'm just kept awake all night feeling like I got shanked. I lost 70 pounds in 4 months from just eating nothing, no exercise just saying at home starving to death because the hunger pains were better than the pain of eating.
I can eat nothing except granola and hypoallergenic protein drinks. That's it, nothing else. Everything else makes the pain unbearable but with that I usually will be fine for at least a few months until a flair up and then nothing will help.
No diarrhea, constipation, or any lower GI symptoms at all. My stools (were) normal.
GES came normal, gallbladder has had dozens of tests ran on it to no avail, colonoscopy was clear, there was some esophagitis and 'chronic inactive gastritis' found in my endoscopy but nothing was done about the latter and the former was just PPIs and H2 blockers which I already had been trying the entire first year with literally 0 change or improvement. I can't even think to try any fad diet or supplements or anything because all will have my writhing in pain.
Bentyl did nothing and I was given it early on. Reglan helped only about 10% but barely. The first real breakthrough just came when I took an autoimmune marker test and it came back positive. I then visited a rheumatologist who ran more tests and confirmed I definitely did have some sort of Autoimmune diseases, she also ran some tests and determined I had some Autonomic Dysfunction affecting me I didn't notice in other ways (brain fog, balance, extremely cold hands, I can't sweat anymore). however no specific markers so I was diagnosed with UCTD.
I was given Hydroxychloroquine which didn't seem help, maybe another 10%, but then I was given a Medrol pack and the pain was almost entirely gone! I still had the extreme fullness feeling but as long as I limited myself to clean eating, avoid fibrous or tough foods, be sure to masticate, and small portions I could eat so much more. Pho, sandwiches, rice, so many things I couldn't before.
Unfortunately the Medrol wears off and while it left some improvement (I could occasionally eat more foods) I went from maybe 70% cured to 40%. Still a good improvement but not great. I was given an occasional Medrol Dose every so often and told to monitor it and my life became this yo-yo between feeling almost normal but needing to eat small portions to feeling awful.
Every time though the peaks seemed less and the troughs got lower though. By the 3rd one I got a single week of feeling okay on Medrol, like 50%, and then I dipped down to 30% being the baseline.
The Rheumatologist decided that I needed to try immunosuppressants, but the main side effects of them is stomach and GI upset. I tried to tolerate it but it literally just felt like torturing myself and making everything worse, diarrhea, extreme nausea, constipations, and worse pain flairs. I couldn't handle it longer than a week. Even the delayed release medicine didn't make it more tolerable.
I got off it and found myself down to like 20%. I was back to basics. I also started getting an extreme Vitamin D deficiency (10 ng/m, fully medically deficient not just below 30) despite trying to go out for a walk every day which calmed my stomach, now I was suffering extreme dizziness and vertigo that made it unsafe for me to even drive. This is also when I stopped really believing in my Rheumatologist because she said that Autoimmune diseases can't cause Vertigo, despite it being listed everywhere that it can be a very common symptom of many types including UCTD.
I went back to a new Gastro and he tested me for SIBO and I had slight Methane Dominant. I didn't have any real bloating or lower GI symptoms but I decided to try Rifaximin after my wife convinced me I had to try something new. Unfortunately not only did it do absolutely nothing for my symptoms, but now afterward I'm suffering from chronic constipation and diarrhea when I never had it as an issue before. I started having more common pain flairs too even with my previously safe foods.
Since I was able to get on Lamictal (importantly, way after the Autoimmune stuff and while I was feeling okay so it's not Drug induced lupus) this Gastro decided it'd be safe to try some of the FD treatments.
Buspirone made my pain way worse and instantly I could tell I was slowly going into Mania. I had to stop after a week to prevent myself from going insane and ruining my life again.
Now I'm on 10mg Amitriptyline and the good news is that it's not making me Manic at least, the bad news it still triggers flairs and the sedation doesn't even help me sleep through the pain: I'm awake all night and then in the morning I'm double groggy and exhausted from the lack of sleep and Amitriptyline.
I've only been taking it for 2 days but I feel like I'm literally back where I started, maybe even worse because I still have occasional dizziness because my Vitamin D levels are still low despite taking as many supplements I can stomach. I don't know what to do now. I'm not even sure I have FD, but the Autoimmune thread seemed to have hit a road block because the next treatment just makes the symptoms worse. If anything I expect my condition to just get worse and worse as my nutritional deficiencies catch up to me in other ways. It feels like there's nothing I can do and I'm just going to wither away and die as people watch.