HELP - Anyone whose had gut issues, has a DC with gut issues, knows anything about gut issues - please can you help

[DiarrhoeaDrama]

As you may be able to tell I've name changed, because I'm probably going to give away so much health information about DS, it might identify me or him somehow.

Anyway, DS is 20 and has RELENTLESS diarrhoea. He has had this since he was 10 and it is getting worse not better.

He has had an endoscopy, sigmoidoscopy and colonoscopy and none of them have revealed anything.

He has had faecal calprotectin tested - nothing
He has had inflammatory markers tested - nothing
He has been tested for coeliac disease more times than I can remember - nothing
His blood tests show him as being slightly anaemic - despite eating plenty of red meat.

Other than the endless diarrhoea, which is so bad that it prevents him from leaving the toilet and missing lectures or nights out, he also has nausea in the mornings, which is so bad he can't eat and has to take anti nausea medication.

Sometimes there is fresh blood in his poo and it is often very mucusy and has black in it.

He feels drained of energy a lot of the time.

He has lost 20lbs in the last 4 months.

He saw a Gastroenterologist again and he said that DS probably had piles and requested another sigmoidoscopy. DS explained that 3 GPs had put their finger up his bottom in the last 2 months to check for piles and they hadn't found any! The Gastro said they were probably higher up. Is that even a thing?

The best diagnosis he seems to be able to get is IBS.

I cannot believe that relentless daily diarrhoea is IBS and there isn't some kind of treatment.

Has anyone out there had similar symptoms, seen a decent Gastroenterologist, had a diagnosis, had treatment?

At this stage, watching my DS waste away, I am prepared to go privately. So if anyone has any recommendations - please, please, please tell me.

Hi OP, this was me at 21. Lost 3 stone in 7 months, constant diarrhoea and morning vomiting and abdo pain all day. It was IBS. I manage it now with daily loperamide, anti-emetics and tramadol for the pain. It sucks but its so much better now and i work full time ok.

Diet hasn't made any difference for me but it does for some e.g. reducing fibre intake and limiting fruit and sugar intake. However saying that, alcohol and caffeine do make it worse and I think that is quite common.

Oh my goodness katykins85. Do you mind me asking how old you are now?
DS has tried loperamide but he ends up with even more pain and horrible black tar poo. Maybe he was taking too high a dose. How much do you take, if you don't mind me asking?

I'm 35 now. Yes loperamide makes the paim worse, hence the tramadol. Without loperamide I cannot leave the house. On weekdays I get up at 4am and take 12 loperamide so I can go to work, up to a max of 18 if its particularly bad. Weekends if I am not going anywhere I give myself a break. It sounds a lot but I regularly see a gastroenterologist and he says it's absolutely fine. I know it sounds awful bit honestly I'm so used to it. I have 3 children and a career so it hasn't held me back

Have you looked at bile acid malabsorption? You need a sehcat scam to diagnose. Apparently lots of people with persistent diarrhea who test negative for Crohn's have it, but up until recently it wasn't well known so they tended to get fobbed off with an ibs diagnosis. Don't know a lot about it, but it might be worth a Google / chat with a consultant about it?

www.bowelcancerresearch.org/diagnosing-bile-acid-malabsorption

Blimey katykins85 all power to you. I'm worried DS may not have your resilience though.

FoodSchmood - thank you. He's asked a number of times if that could be considered and keeps getting palmed off. I think I may get a private SeHCAT scan organised during the Easter hols, if I can.

I'm assuming inflammatory bowel disease (IBD) such as Ulcerative Colitis has been ruled out?

IBD sounds similar to IBS but is completely different.

villageshop they did a biopsy when he had the colonoscopy to rule out micro inflammation and they couldn't see any visible signs of inflammation, plus no inflammation shows up on CRP or ESR - which I think does rule out IBD or colitis.

This was me, at that age. I have Crohn's - colitis and didn't show any of the blood test markers. A colonscopy showed mine. The mucus and the blood should be throwing up big red flags to doctors; that's not an IBS thing (I have that too). I'd be back on at the doc to get something done. Living like that is untenable and taking loperamide is not good for you long term.

My DD has had lots of issues like this, moved her bowels five plus times a day, bad pains constantly etc.
We completely changed what she was eating- now wheat-free, CMP-free, on a low-FODMAP diet.
It's a total fucking nightmare huge change, but the effect on her health has been amazing.
IBS isn't really a diagnosis, it's more a "we don't know what the heck is causing this". She was negative for coeliac too, they pooh-poohed Crohn's as she is a healthy-ish weight, hair glossy etc.
She does occasionally have flare-ups, but the difference day-to-day is enormous.
Now moves her bowels normally, and once a day only. No urgency, no pains usually. No medication.

She can't eat out at all, which is a hassle, and I have to prepare separate dishes for her often, but tbh we have adapted our diets quite a bit (we eat little bread now for example, less pasta, etc)
We may never get to the bottom of what the actual issue is, but daily life is manageable.
She had terrible reflux as a baby btw, so probably her digestive system is just not adequate.

You're entitled to a second opinion on the NHS. If you're in/near London consider asking for a referral to a gastroenterology at St. Marks which is a tertiary centre for GI stuff

Not a doctor but years and years of dealing with gut issues, and to me it sounds like Clostridia overgrowth - really severe c. difficile.
As it is so severe he will need Vancomycin at the very least. I’d really consider going private and bypassing the NHS before he causes more permanent damage to his organs.

If the vancomycin doesn’t work then please consider doing FMT as it has a 90% success rate. I think the UK clinics are called Taymount.

In the meantime get him to keep his diet really clean. No sugar, no foods that cause yeast overgrowth. Plenty of water and maximum magnesium supplements.

Thanks all, so many helpful suggestions.

DS went entirely gluten free for an entire year, as I was convinced that the issues must be diet related. Sadly, it made no difference.

Skimmedmilk1 we are just outside London, so I will look into St Marks.

SnappedandFartedagain I did a private stool test and there were some issues with gut bacteria, which of course the gastroenterologist paid no attention to. I will have a look at Taymount and FMT.

Gosh, just looked at FMT and it costs nearly £4k!!!!! I don't have that under the mattress unfortunately.

Hopefully the vancomycin will work. I meant to say also get him to start taking Monolaurin and TruBifido from Amazon as they should also help a great deal.

Has he tried excluding milk products? I had similar problems when I was diagnosed coeliac. Despite going gluten free, the symptoms didn't go until I cut out lactose too. Gut damage can cause intolerance, something I only found out by trial and error after having been told for years it was IBS. Hope things improve for your son.