Poll: Gastrointestinal symptoms

this is a quick non-scientific poll to see what people’s experiences have been in terms of gastrointestinal (GI) symptoms.

For the purposes of the poll, GI symptoms are classed as having 2 or more of the following:

• Diarrhea (chronic)*
• Alternating diarrhea and constipation
• Heartburn/acid reflux
• Incontinence
• Nausea and vomiting
• Pain in the belly/swelling/cramping

*Chronic diarrhea is defined as loose stools that last for at least four weeks. This usually means three or more loose stools per day.

I’ve not included constipation flatulence or bloating since these symptoms on their own can be confused with simple dietary or lifestyle factors, but that isn’t dismissing them since they often accompany the above.

 

I have a lot of GI symptoms and they came with the start of ME. Not before or after.

 

I had IBS before I got ME but ME made it So. Much. Worse. so I don't quite fit any of the above.

However I saw a fantastic dietitian* who suggested the low FODMAP diet which has helped massively. Still have problems when I crash or my anxiety is particularly bad though, but not quite as bad as before.

* I would be delighted to recommend her & pass on her details if anyone needs help in Gloucestershire, UK.

 

I don't fit any of the options either. I developed terrible acid reflux after ME onset, but there doesn't seem to be any pattern that ties them together (e.g. pacing or not and PEM make no difference), so I think in my case it's coincidental. My mum and my brother also have bad reflux. I can largely control it for now by avoiding trigger foods.

Annoyingly, trigger foods include "virtually everything that is tasty"!

 

I've assumed that I do fit in here, although my symptoms are overwhelmingly in the lower gut (below the waist) and I get very little pain. I was diagnosed with IBS before ME, pretty-well got rid of it through a lower-carb, gluten-removed diet (plus a few other things, and I was vegan for years before getting ME and still am) for a couple of years, but then it came back.

I don't usually have diarrhoea unless I eat something inappropriate, e.g. too much fruit or gluten-free chocolate sweetened with xylitol.

I am occasionally constipated, but not often, and sitting too much probably worsens that.

I very rarely get heartburn, and only occasionally have reflux, but I supplement with sodium bicarbonate, which I really need.

I almost never have incontinence.

I very rarely have nausea or vomiting, unless you're including occasional reflux.

So it's just the last one, so that I don't really qualify to answer your question in the affirmative (but I have - should I remove it?).

 

No worries it’s just a bit of fun and a best fit answer . I would answer the first option from what you describe (IBS being GI related and present before ME onset).

 

I had IBS for many ears before ME. With gradual onset, the IBS became much more painful. I get nausea from being upright too long.

 

Diagnosed with IBS at 20 - many years before ME onset. Luckily, has generally been quite manageable and with ME onset it has been no worse.

 

I put my GI started before I got ME but I do have EDS as well. Over time, since I relapsed with ME 4 yrs ago, my GI symptoms have got worse.

EDITED!

 

I am now 67 and have had a lifetime of gut issues!

First IBS at around 19, primarily diarrhoea based. I was given Codeine Phosphate for it for some years. Years of bloating and discomfort, and then developed gastritis (diagnosed by endoscopy).

I got a rectocele too which didn't exactly help matters - by then I had constipation. I had an op for the rectocele which sort of helped for a while. Not so good now....

After a few years of PPIs I began to approach it in a new way by trying to alter my diet, and to drop the PPIs. I began to notice that it helped to eat differently - to avoid gluten, and processed foods especially and all added sugar.

Then I had whooping cough which I think gave me the hiatus hernia, but it took another endoscopy an years of misery to work that one out.

Restricting my diet and using HCL with Betaine has helped. I now eat a low acid diet, and even filter my water to reduce acidity, plus do a form of Fodmap, plus the avoiding gluten and processed foods. I also eat kefir. I am now the best I have been for years, but have small lapses and setbacks too. At least I can eat a few foods that I could not before, such as chocolate in small amounts.

 

The answers if this poll does not fit my symptom profile. Then the wide range of GI symptoms is unlikely to bring any useful answers at all.

 

I developed reflux last year but that is something that runs in my family on my Dad's side. And as long as I stay away from chocolate, Coke and Pepsi, or too much decaf coffee I'm fine.

 

Didn't know how to answer this poll, so didn't vote. But in the interest of documenting our symptoms for future reference, maybe even to be puzzled over by a researcher, here's my experience.

Have had constipation at nuisance level as long as I can recall. My ME probably started about 40 years ago (undiagnosed then) so really can't remember what came first.

I've had three bouts of ME with 2 lengthy almost-remissions inbetween. Constipation remained at same level throughout 'active ME' periods and remissions until about 2 years prior to the onset of my third and current bout of ME. It continued to worsen after onset and various other GI symptoms appeared, probably down-stream to the constipation.

The constipation was eventually diagnosed via transit studies as idiopathic slow transit (very slow, as in 1 bowel movement every 2-3 weeks) and the other symptoms via breath analysis as SIBO (more specifically overgrowth of methanogenic bacteria).

The SIBO resolved once I found a reliable way to keep the bowels moving with medicine. The slow transit persists but is masked by the medicine most of the time. However during PEM my gut simply stops moving anything forward leading to all sorts of GI symptoms. Occasionally it switches the opposite way to a sort of dumping syndrome when within 1/2 an hour of a meal your insides very painfully turn inside out to empty themselves violently.

At this stage I have 2 theories (with lots of holes in them):

1) Microbiome theory

I was born with a microbiome that had a tendency to produce methane. There's an association between methane and constipation, which could potentially explain the longstanding constipation. For some reason the microbiome got disturbed, possibly after a course of antibiotics, and started producing ever more methane causing ever more constipation, eventually causing SIBO.

The only connection with ME in this scenario would be that the worsening of constipation and advent of SIBO roughly coincided with the onset of my third bout of ME which is significantly more severe than the previous ones. This theory doesn't offer any obvious explanation of worsening GI symptoms during PEM though.

2) Small-fibre neuropathy theory

The slow transit is due to some autonomic small-fibre neuropathy problem. SFN has been connected to ME and it's notable that, apart from the nuisance constipation, the other symptoms that persisted at low levels throughout my remissions were autonomic ones like OI. For some reason the SFN worsened prior to onset of ME bout #3. This then caused increasing constipation which in turn caused SIBO. In this theory all GI symptoms look to be secondary to SFN. I don't really understand by which mechanism SFN could worsen during PEM; I can only observe that all my gut and autonomic symptoms do get worse then.

 

I have incontinence, but it came with back problem, so is related to my ME. Maybe you could add a "I have GI symptoms, but they are not related to ME" option. Then again, that might be meaningless.

 

This page about flatulence/methane production may be of interest: https://en.wikipedia.org/wiki/Flatulence

I found this line especially interesting: "The prevalence of methane over hydrogen in human farts may correlate with obesity, constipation and irritable bowel syndrome, as archaea that oxidise hydrogen into methane promote the metabolism's ability to absorb fatty acids from food"

 

I'll jump in here and echo some of your experiences for the record.

My idiopathic slow transit colon (diagnosed much later) developed from about age 16 (I'm now 69) and has worsened gradually and evenly over time. It was accompanied by increasing brain fog type symptoms and a growing intolerance of swings, roller coasters and even the old Ford wallowing through dips in the road, even as early as 14 years old. I've never thought of myself as having OI but I have to admit I often feel dizzy after I bend over and feel sick after standing still for a short time. Whatever it is, it's variable and not a great nuisance in the scheme of things.

I've had a few SIBO tests and they've been negative.

The ME symptoms of lack of energy, PEM and pain became a bother about 15 years after the constipation and brain fog, but they were there from the start, although mild, when I reflect on it. I was never able to contemplate a double degree, for example, which I would have liked to do, or ever work more than 4 days a week. That's now down to 2 hours a week. Like everything else, the ME symptoms have slowly and inexorably become worse over the years.

It's probably quite unrelated, but I started to develop osteoarthritis in all joints at the same young age.

I have (presumably) small fibre neuropathy affecting my legs mainly, and especially feet. In my late teens and early twenties I recall the occasional night of painful, burning feet, but it disappeared for a few decades only to re-emerge with a vengeance in my 50s.

I had an abnormal gut microbiome test result in the mid 1990s but have since read that the results from Bioscreen in Newcastle, Aus (before they moved to Melbourne - ?) were not at all reliable so I'm none the wiser and don't intend to have any more tests for anything until more is known.

 

Voted before I read your post.

I guess by your standard (2 or more) I don’t have GI symptoms?? I have chronic life-changing diarrhoea - to the point where even on a good daily dose of loperamide I often fit the criteria (3+ very loose) - [ETA: the problem doesn’t go away (or I could stop the loperamide) but does flare up in PEM]. The skin down there needs a lot of care to keep clean and not inflamed (which years in I am managing), I am somewhat weak and malnourished (according to blood test - diet is not the cause), but the pain I can have is in my ribs (front and back), not my belly, and I don’t have much gas etc. I’ve not been incontinent but I never let the circumstances arise that might allow that to happen (I stay close to facilities). I don’t have reflux (even had a gastroscopy a few years ago to check). Alkaline phosphatase has been dropping since it began and is now officially low but I’ve no idea what that means. I guess I have had nausea but not so much recently and not terribly dramatic - I just ubruptly can’t face food sometimes.

Developed after I got ME but as both fluctuate I can’t be 100%. I had a cast iron gut prior to that.

 

About five months before the onset of ME, I had some pretty bad GI symptoms, including burning pain in the lower gut. They were severe enough to send me to a doctor (and it took a lot to get me to see a doctor back then). I was given "Librax," a sort of combination of drugs used to treat stomach ulcers and IBS. I'm not sure if it helped, but the symptoms eventually went away.

I'm almost certain that Melvin Ramsay observed that, in some cases, ME has been preceded several months earlier with notable gastro-intestinal symptoms. I'll have to see if I can find that reference again.

If true, it might be the case that transient, but unusual GI symptoms precede ME onset in some patients. It would probably also be true that most people would not connect the two events, because they may have been separated by many months.

Possibly, some sort of gut infection (or gut inflammation) sets the stage for ME well before what we consider "onset."