Functional Gastro Disorder- possibly IBS - IBS Network

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Functional Gastro Disorder- possibly IBS

Monkeypuzzler profile image
12 Replies

Any advice or people with similar symptoms or diagnosis please? My 18 year old son started with a flare up 3 years ago of extreme nausea, stomach discomfort, unable to eat, feeling really ill, extreme weight loss. It took him a year to recover but had another flare up in November so 8 months on still 2 stone weight down (he was slim to start with) occasional nausea so needs to eat every couple hours to keep it at bay, low level stomach discomfort always which can get worse when constipated (approx once a week) He is 18 years old but has a very limited life as won’t go out socialising or play sport as makes him feel worse 😕 he isn’t a stressed or anxious type of person but we had him checked by clinical psychologist in case he has subconscious anxiety but she concluded he doesn’t. GI consultant after a capsule endoscopy concluded he has slow motility/ peristalsis set off by a virus or attack to immune system - functional GI disorder - probably IBS. He had the movicol prep before capsule endoscopy & it didn’t do a thing, in fact no bowel motion for a week after. So that was a big factor in his diagnosis I think. His bowels aren’t a big problem usually, just once a week he may feel constipated. Consultant or GP not worried about him being underweight. Consultant prescribed ondansetron anti sickness for flare ups & dulcolax if constipated but other than that no cure or treatment and needs to learn to live with it

It took him a year to recover from first episode 3 years ago but suspect this is the new norm for him now with symptoms he has 😕 it started in November following a virus. The first flare up was after taking Fluxocillin antibiotics, followed by nasty sting in sea. All checked out & found nothing untoward, parasites, H Pylori, Crohns etc. I have read about Gastroparesis but GI Consultant didn’t mention this

We are trying Fodmap diet currently & will see nutritional therapist. Ionic zinc & MSM have also been recommended but not tried. Probiotics tried also. His bloods have also been fine at every check. I will be asking GP about SIBO but other than that am at a loss what to try next. Thanks for reading.

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12 Replies
FRreedman profile image
FRreedman

Sometimes, with IBD and IBS, it is not possible to get a definite diagnosis. It becomes a case of medicate the symptoms because when combined they make no sense of current defined diseases (that's not to say that somewhere down the line someone like Dr Crohn won't come along and say hey this is a new disease let's call it xxxyz, it's just that no one, so far, has said it.) It is, also, possible that he just has a week GI tract, which reacts quite quickly to small changes.

The one important thing that I have noticed over the last few months, though, is the number of people who are infinitely worse after a course of Fluxocillin, and must confess I am seriously considering putting it on my do not take list.

Monkeypuzzler profile image
Monkeypuzzler in reply to FRreedman

Thanks FRreedman I agree with what you say about diagnosis and you just have to find something that works for you as everyone seems to be so different. Also I myself can’t tolerate Fluxocillin. I had it once and after 24 hours had to stop as made me ill. 😕 Thanks again.

FRreedman profile image
FRreedman in reply to Monkeypuzzler

I don't know where you live, but the best place (centre of excellence) for Gastro-intestinal diseases and problems is St Mark's at Northwick Park Hospital in Harrow (North West London)

Monkeypuzzler profile image
Monkeypuzzler in reply to FRreedman

Thanks I had thought about getting a referral to St Marks but wondered if we would get same answers. Are you under that hospital?

FRreedman profile image
FRreedman in reply to Monkeypuzzler

Yes, if you do get the same answers, then you will know that your son’s problems don’t have a diagnosis but are a conglomerate of symptoms. They have saved my life on two occasions now: the first with no diagnosis just repairing all symptoms, and the second with the simplest of diagnostic excellence and emergency operation and resection.

AshAlso profile image
AshAlso

Hi there. I have the exact same symptoms as your son and am going through a strikingly similar thing. My bloods are all normal (except for some vitamin deficiencies) and my endoscopy & colonoscopy came back normal. GP also suspects anxiety (although I doubt it's that). The two things I keep coming back to are candida and SIBO. I was recently tested for candida and am awaiting the results. I suspect whatever is happening to your son is happening to me as well. Perhaps try an herbalist in the near future--I hear people have success there.

Monkeypuzzler profile image
Monkeypuzzler in reply to AshAlso

How were u tested for Candida out of interest? Apparently the treatment for Candida can make ypu feel worse for a while so I would dread that for him.

AshAlso profile image
AshAlso in reply to Monkeypuzzler

I was tested at a LabCorp (I’m in America). As far as I know, the treatment consists of garlic pills and a diet without sugar so it shouldn’t hurt him too much. When he does have a bowel movement, is it loose? Could be a yeast/fungus.

Monkeypuzzler profile image
Monkeypuzzler in reply to AshAlso

BMs not loose apparently. That’s interesting about Candida treatment. Will look into it further.

Liz1234ty profile image
Liz1234ty

Hi, not sure what this might be but wondered if stomach acid levels have been checked? Low levels can make symptoms like this worse. It is worth ruling out sibo through a breathe test but it must check for both methane and hydrogen and nhs test often just checks the latter so not very accurate. I have heard good things about adam farmer gi consultant on the grapevine and i have had most sucess with private functional medicine peeps rather than nhs as they are more keen to try testing to get to root cause of ibs.

Liz1234ty profile image
Liz1234ty in reply to Liz1234ty

Oh forgot to say - where is slow motility? If small intestine then varous things can help. See alison siebeckers website on this - section on sibo called prevent relapse goes into prokinetics.

Monkeypuzzler profile image
Monkeypuzzler in reply to Liz1234ty

Many thanks for your reply Liz1234ty. I will look into what you have said. Much appreciated.

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