Hi, I'm Emily, I joined the forum to post my story here as it sounds very similar.
I have been living in digestive hell for about 4+ years now. I can't even tell people that number (4 years) without beginning to cry. I can't believe my life has turned into obsessing about my condition so often. I have so much joy in my life that's tarnished with this everyday disaster/nightmare that doesn't seem to be going away anytime soon.
The best way I can describe my worst symptom is the feeling of constant TRAPPED GAS. As much as I push to expel it, it stays firmly planted deep within my intestines. It's not just gas there, though. I burp incessantly, even after drinking something as benign as water. I have a constant, localized pain in my upper left abdomen (just under my rib cage, extending a little around my left side...) - sometimes worse, sometimes better, but always worse after a BM. This specific pain has worsened over the years.
I usually have 2-6 BMs per day, all of which are very narrow (not pencil-thin, but no more than 1" in diameter) and very long. It's not so much diarrhea as it is very frequent. I often get distention and gas after my BMs.
The first gastroeterologist thought I had GERD, which was insane considering I only have heartburn symptoms about 3x per year. The PPIs made this worse. She was stumped and suggested repeatedly that I try Gas-X, which again, is insane. Gas medications never do anything for my symptoms. Nor do any OTC medications.
I have seen 2 natural/alternative physicians, one of which suspects Candida overgrowth and the other suspected Parasites. I have been treated for both, and no improvement came with either treatment. The parasite cleanse antibiotic actually made my symptoms 1,000x worse. I have also done the Heidelburg gastric acidity test which showed inconclusive results (sometimes my stomach acid regulated normally, other times it did not). Hair analysis shows my vitamin/mineral levels are extremely low. I have tried many different digestive enzymes and probiotics.
My current GI did a breath test and my results showed an abnormality consistent with SIBO. I was so relieved to finally have an answer. I tried Xifaxin and Erythromycin, which made my symptoms much worse (usually patients have much relief with these antibiotics). Specifically, the localized left-side abdominal pain became much much worse during antibiotic treatment. If I gently massage or push on this area, I am sometimes able to burp with only some relief. If I drink a carbonated beverage quickly after a meal, sometimes I can burp repeatedly and it feels much better. It's almost as if I have to "catch" the gas after eating before it travels through my body. However sometimes, my body will not burp, but just "digest" the gas through the intestinal tract, making my life a living hell.
Sometimes it almost feels like the gas is in my uterus, it's extemely low. Nothing I do helps move it. I do not experience a ton of cramping. Just this incessant production of gas - with the inability to expel it. What's also strange is that sometimes I feel fine (although rare), and am able to pass a regualr fart (haha) just fine. WTF, body?!
Right now I'm having a new symptom: my intestine is weirdly twitching. I see the commenter above also describes a spasming. It seems this craziness will never end. It has only gotten worse through the years. Want to hear the weirdest thing? THIS ALL DISAPPEARED IN MY 2ND MONTH OF PREGNANCY. Disappeared! Completely. It returned 10 days after giving birth. Go figure that one out. All I want to do is be pregnant all the time! How many women do you hear saying that? Haha.
Anyway, this condition has made my life pretty hellacious for 4 years now, and no one seems to have any answers. I have been on antidepressants and am currently in cognitive behavioral therapy. I remember the time before all this began when I was around 25 years old, and how carefree I was. I cannot fathom living this way for the rest of my life. The very thought makes me absolutely lose it with sadness. I'm hoping to find some answers, and I will never give up hope, but my resolve is wearing thin. When I have a semi-normal day, I am the happiest person in the entire world. When the symptoms return, I go to a very low place.
There has GOT to be an answer somewhere. I have never read other people describe my symptoms so accurately: trapped gas, pain after BM, etc.
The next step for me is a colonoscopy (which I've been asking for, for years) and a capsule endoscopy.
As for my history: I used some heavier drugs in my early twenties (Ecstacy, coke, and halluciogens), began hormonal birth control (specifically Depo-Provera) at age 15 but stopped hormonal BC at age 25, and was on 2 rounds of Accutane in my early-mid twenties. I was also prescribed antibiotics in my teenage years for acne. I cannot believe my body was able to grow a healthy human baby child
If the colonoscopy and endoscopy turn up nothing, I will be turning to Ayurveda next. I will never stop trying new things.
It is comforting to know there are others that know what I'm going through, though I would not wish this on my worst enemy. Sometimes I want to literally cut open my abdomen and scream at my intestines. I know that sounds insane, but when you're forced to think about your TRAPPED GAS over and over and over and over again, you start to kind of lose it. This sucks!