When the Tests Find Something, but We Still Have to Find the Answers

Christoff Trüter Spousal caregiver

05 Oct 2026 0 comments

For those who have been following my wife's medical problems, the last few months have added another increasingly difficult chapter. She can barely eat normally anymore. Most days she is relying heavily on fluids because even a simple meal can leave her severely distended, uncomfortable and sometimes throwing up into her mouth afterwards. Even drinking can cause visible distension. She gets full very quickly, passes remarkably little gas and can go days without a bowel movement while experiencing surprisingly little of the normal urge to go.

This is happening on top of the neurological problems people following her story already know about and four procedures this year relating to kidney stones in both kidneys. Until recently, she was still managing physiotherapy four times a week and biokinetics twice a week. She can no longer maintain that rehabilitation because the gastrointestinal problems have made eating enough to sustain it practically impossible.

We have spent the last few months moving between doctors, tests and possible explanations, hoping somebody would take ownership of the problem and guide the investigation. Instead, we increasingly find ourselves doing the research, identifying the next question and asking for the next investigation ourselves. The investigation is not finished. That is precisely the problem.

This did not start yesterday

Her gastrointestinal problems first appeared dramatically in 2019, when her abdomen became so distended that an emergency department initially thought she might be pregnant. The problems subsequently waxed and waned, but this year they became dramatically worse. Dietitians have been involved over the years, diets have been changed, and we have tried the ordinary approaches. What we are seeing now is different in severity: profound distension, very poor tolerance of food, early fullness, regurgitation after meals, infrequent bowel movements and very little urge to defecate.

One explanation offered was faecal loading or impaction, essentially a significant accumulation of retained stool in the bowel. At our prompting, this was investigated. Neither was found. She has also had detailed CT imaging of the abdomen and bowel, which found no structural explanation for what is happening, while gastroscopy and colonoscopy have likewise failed to identify one. Despite all of that, her symptoms have continued to worsen.

Then a test actually found something

A barium small bowel follow through finally gave us something concrete. The contrast continued moving, so there was no persistent small bowel obstruction, but its progression was delayed. The radiological conclusion favoured delayed small bowel transit, with an underlying motility disorder raised as a possible explanation.

This was not something we inferred from her symptoms or diagnosed ourselves. Delayed transit was demonstrated on imaging. What remains unknown is why it is happening and whether other parts of the gastrointestinal tract are also affected.

Out of frustration, we also performed a crude corn transit test, using corn kernels as visible markers of whole-gut transit. This was not a validated medical transit test, and we do not present it as one, but kernels continued appearing over roughly five to seven days. That cannot localise the delay or diagnose a motility disorder, but it certainly did nothing to reassure us that transit was normal. More importantly, there are proper medical tests designed to answer these questions. We should not need to improvise them at home.

Gastroparesis looked plausible. It wasn't.

Given the early fullness, severe distension, difficulty eating and food coming back into her mouth after meals, gastroparesis was an obvious possibility. A gastric emptying scintigraphy was eventually performed. The result was normal: there was no scintigraphic evidence of either gastroparesis or rapid gastric emptying.

That is useful information. The stomach appears to empty normally. But that does not negate the delayed intestinal transit already demonstrated elsewhere. Instead it narrows the question: where else is transit delayed, how extensive is it, and why?

And now, another functional diagnosis

While those questions remain unanswered, another functional diagnosis has entered the picture: IBS.

I actually find the medical language around IBS more candid than much of what we have encountered around FND. IBS is openly described as a disorder of gut brain interaction rather than a diagnosis identifying one established underlying pathology. My objection is not that IBS has been considered. It is that yet another functional disorder risks becoming the endpoint before the investigation is finished.

Calling this IBS does not explain why delayed transit was demonstrated, why she can go days with almost no urge to defecate, or whether the problem extends into the colon. A normal gastric emptying study tells us something useful about the stomach. It does not establish that gastrointestinal function as a whole is normal.

Consider IBS if appropriate. Just don't use it to close questions that have not yet been answered.

So what still needs to be investigated?

One obvious unanswered question is colonic transit. We do not yet have a dedicated measurement establishing whether the colon itself is abnormally slow and, if so, to what degree. Formal colonic transit testing exists specifically to investigate that question.

Then there is the striking lack of normal defecatory urge. She can go days without opening her bowels while experiencing remarkably little sensation that she needs to go. Anorectal manometry, rectal sensory assessment and balloon expulsion testing are recognised investigations that can assess sensation, coordination and evacuation. Current guidance from the American Gastroenterological Association also recommends investigating secondary causes, including medication effects and neurological disease, when bowel dysfunction remains refractory. American Gastroenterological Association.

Her increasingly restricted intake also needs attention in its own right. Whatever ultimately explains the motility problem, somebody who can barely tolerate normal meals and has already had to stop her rehabilitation because she cannot sustain it nutritionally cannot simply be left in that state while the diagnostic process stalls.

And what about the autonomic nervous system?

There is another reasonable question: could there be neurological or autonomic involvement? The autonomic and enteric nervous systems play major roles in gastrointestinal motility, and gastrointestinal dysmotility can occur with autonomic dysfunction. Assessment of Gastrointestinal Autonomic Dysfunction; Central Nervous System Control of Gastrointestinal Motility.

We are not claiming that autonomic dysfunction is the answer. But the gut problem is occurring alongside an existing neurological picture, markedly reduced urge to defecate and an unusual recent episode where urine began flowing without conscious effort while she stretched. Taken together, that seems sufficient to ask whether altered neurological or autonomic control could be contributing to the gastrointestinal and urinary symptoms.

If clinicians think it is unlikely, fine. But somebody should actually assess the question. Depending on specialist judgement, that could involve neurological and autonomic assessment, orthostatic measurements or more specialised autonomic testing where indicated. Which investigations are appropriate and in what order should be a clinical decision, not something we have to design ourselves.

Trying to do this in South Africa

There is also a practical reality to all of this. We are doing this in South Africa, where access to highly specialised investigations can be limited. That became very real when we arrived for the gastric emptying study. According to what we were told by the Nuclear Medicine Department, this was the first gastric emptying study performed at that hospital in approximately ten years. I cannot independently verify the hospital's complete testing history, so I repeat that only as what we were told.

It does not invalidate the test. It illustrates the access problem. If an established investigation such as a gastric emptying study is being performed that infrequently at a major hospital, finding formal colonic transit testing, anorectal physiology or specialised assessment of gastrointestinal dysmotility becomes considerably more difficult.

Reading international guidance and discovering that these investigations exist is the easy part. Finding somebody locally who performs them, obtaining the appropriate referral and having somebody coordinate the investigation is another matter entirely.

But that should not become our job

My wife is currently being left as she is. She can barely eat normally, increasingly relies on fluids, becomes severely distended after ordinary meals, experiences regurgitation, can go days without bowel movements and often barely feels the urge to go. Her rehabilitation has effectively stopped. Meanwhile, delayed intestinal transit has already been demonstrated.

Yet there is no clear investigative pathway being laid out for us. We are asking whether colonic transit should be measured, whether anorectal function should be tested, whether neurological or autonomic involvement should be considered, where those investigations can be performed and which specialist should coordinate them.

That feels wrong. Not because patients should be passive or because doctors are expected to know everything. Complex medicine involves uncertainty and often requires several specialists. But there is a considerable difference between medical uncertainty and leaving a sick patient and her family to design the next stage of the investigation themselves.

We should be able to participate, ask questions and challenge assumptions. We should not have to become amateur gastrointestinal motility and autonomic specialists simply to keep the investigation moving.

Where we are now

We still do not know the diagnosis. Faecal loading or impaction was suspected, investigated and not found. Detailed CT imaging of the abdomen and bowel found no structural explanation. Gastroscopy and colonoscopy have not provided one either. The gastric emptying study was normal. Delayed intestinal transit, however, was demonstrated on imaging. What remains unanswered is its cause, how much of the gastrointestinal tract is involved, whether colonic transit is also abnormal, why her normal urge to defecate is so diminished, and whether neurological or autonomic dysfunction could be contributing.

We are not asking doctors to magically know the answer or demanding a particular diagnosis. We are asking for somebody to take the findings that already exist, look at how unwell she currently is and actively guide what happens next.

Something is objectively wrong with transit. She can barely eat. She can no longer maintain her rehabilitation. The investigation is not finished. Leaving her like this while we work out what to ask for next is not an acceptable endpoint.