IBS sort of diagnosed, but symptoms are odd

[Dondon]

Hi! Just thought I'd try this forum with my question(?) or rather account. I (m, in his 30s) have digestive issues for 5 years now, when quite suddenly I started feeling queasy, nauseous and it would just not stop. For weeks, no vomiting, just extreme nausea and longer spells of constipation, very occasional epigastric cramps. Within 3 months I did all the tests one could do, stopped pretty much every food/drink that was fun before and went on with life in a slower pace. Every test came back inconclusive, except for a fructose intolerance, which was diagnosed after 7 months and a not very clear 'stomach emptying seems a slight bit delayed'. Nobody ever said "IBS" but it was suggested between the lines. So I stopped eating all kinds of sugared products, changed my nutrition once more. Only medication that would help was defoaming stuff. Also went to therapy (in case it was psychosomatic) and had some acupuncture, which did take the edge off the stress of it all, but not more. It took over a year to somewhat normalize to a level where I was able to travel without worry, another year until I could take a train or plane again. By then it had manifested that the nausea was probably caused by extreme bloating. What remained inexplicable were some irregularly occurring side symptoms: sensitive skin and contact allergies I didn't have before; random fingers going numb and pale (i.e. circulation issues); waking up at 2-3 in the night with internal shaking; extreme tiredness; vertigo. Also tendon and joint inflammations in various places across the body, appearing out of nowhere within hours and disappearing in 1-3 days, but extremely painful in between.
Fast forward 3 more years, in which I had regained trust in my body to a level that I went on travels (3-4 hour flights) without own kitchen, was able to eat more and a wider range, drank alcohol in small quantities. So a level that I found very acceptable. Then a food poisoning/stomach bug, the most violent I ever had - but gone after 12 hours, followed by 12 hours of delirious state and back to relatively normal. But this flipped everything back to start, as the digestion never really recovered from the event and seems to be getting more unstable rather than better. Same symptoms as 5 years ago but this time in the mix also extremely active bowels (never really diarrhea) with like once a week quite unpleasant cramps, and, unlike 5 years ago, smelly gas, occasional heartburn. Otherwise the already known: feeling extremely full, nauseous, with increasing intensity towards the evening, almost permanent burping on some days (I speak of 10 times a minute at times).  Most intensely 2-3 hours after eating, and then for 1-2 hours. Still the waking up in the night on bad days, sometimes shaking, sometimes very nauseous (and then awake for 2-3 hours). Waking up feeling fine, but I can't wait with breakfast. As long as I have it right away, that's an almost normal meal. If I wait with empty stomach, I get stomach pain. Things like the skin allergies, that had completely gone, are back
What I eat is again down to things I believed to be safe such as bread, fresh cheese and yogurt (gluten and lactose were always fine and are tested), tea... I still had the occasional coffee or glass of wine a couple of weeks ago, but right now it's not really good enough.

So a lot of this does sound like IBS/irritable stomach. But from all I read some of the symptoms don't add up, like the issues in the night, when it's actually the worst (I read everywhere that IBS should leave you alone in the night). Or the weird side symptoms that feel like some autoimmunal flare-up (but don't show in any blood tests). Or does that sound familiar to the IBS community?

I should say that it's a stressful year with lots of pressure, so of course I don't exclude that it's just an IBS flare up and I will have to wait 1-2 years again for it to chill...but maybe somebody has some tricks up their sleeves to handle the symptoms or can appease me that even the odd ones are actually normal.

[Jeffrey Roberts]

Dear Dondon,

Thank you for sharing your very detailed history. Considering the nausea which you mentioned a number of times, it does seem like this could be an upper GI cause rather than a lower one. IBS is related to the lower GI and your pattern doesn't seem to fit the classic diagnosis of frequent abdominal pain accompanied by diarrhea or constipation and often relieved after a bowel movement. While constipation can lend itself to nausea, you don't describe the constipation in any great deal.

Functional GI disorders, now called Disorders of the Gut Brain Interaction (DGBI), can be anywhere in the GI tract. It's possible that you have an upper GI DGBI, since you reported that nothing else was found during testing.

You might try and consult someone in your country that deals with DGBIs as they might have some ideas about how to give you a more consistent quality of life.

[Dondon]

Thank you - this is what I somewhat intuitively thought, that I look at a "functional issue" but not necessarily IBS. I can add that bowel movements usually do not relieve symptoms but occasionally evenmake them worse, which again goes a different direction from what you describe.

Meanwhile, the nausea, presumably caused by excessive gas production, sets in at a time after eating (2-3 hours) which indicates "after the stomach", so in the small intestine. The SIBO test was negative, though. Perhaps somebody knows about the reliability of those tests and the potential use of retaking it after 5 years.
Also, in the new flare up, eating seems to trigger - only in the evening - bowel over-activity within 1-2 minutes. Nothing more than bothersome, but it goes from calm to growling and gargling and wondering if to reach the bathroom even if I only eat as much as a cracker after dinner.

Yes, I shall try to find a specialist (again)...5 years ago it was a bit of an ordeal, including one memorable meeting where my weightloss was not attributed to nausea and illness but suggested I should simply eat more, then it would be solved...

[Jeffrey Roberts]

The one medication that comes to mind to manage these symptoms is domperidone. It could help with nausea and constipation, but I am not aware if it is available in your country. It also has cardiac signals so you would have to know if you might have an issue with what is called a long QT.

[Dondon]

I should have said that I tried domperidon and MCP already in the first phase, never understood if it actually helped or if things would have relaxed by themselves. in any case, there is some benefit to domperidone, but it's not really a solution as you can't really take it permanently as the body gets used to it.

[Jeffrey Roberts]

I wasn't aware that the body adjusts to domperidon.