DS diagnosed with IBS - please help

[MargoLovebutter]

I wasn't sure where to post this as DS is 18, so not really a child.

After years of gut issues - mostly speed of digestive transit & diarrhea, we had a battery of tests done. Cameras up, cameras down, biopsies, inflammatory markers etc etc & everything came back normal.

All well and good but the poor boy has desperate, chronic diarrhea & cramping. He takes mebeverine for the cramping, which helps a bit and has been prescribed codeine to try and slow down digestive transit & firm up his poo. It does work, but he can't take it indefinitely. He is in a non-codeine phase at the moment & is in constant fear of shitting himself at school. The teachers are all understanding about his issues but it is really debilitating for him.

He has tried buscopan for a long period of time. Pops them like smarties and they seem to have very little effect.

The gastroenterologist who gave us the all clear & diagnosed IBS, is referring him to a dietitian but that could take another two months.

What can I do to help him? Any help gratefully received.

Have you tried the low FODMAP diet? Might be worth reading up on (if you haven't already) prior to seeing a dietitian. It can be lifechanging. Hope your DS can feel better soon x

I presume go has ruled out allergies and coeliac disease too?

If so, has he been prescribed probiotics?

Meant to say, sorry -rushing - sorry your son is going through this. It sounds utterly miserable for him.

Yes, Streamcloud, he's been tested for coeliac more times than I can remember. We even went completely gluten-free for an entire year to see if it was non-coeliac gluten allergy. Haven't tried dairy free yet.

I've spent a small fortune on probiotics, regularly give him Kefir and make stews with bones in them, to try and help that way but still no improvement.

No Synecdoche, we haven't tried Fodmap yet, although that is what the gastroenterologist said the dietitian would recommend.

I have ibs. I take mebeverine 3 time a day. Also Lemorazide (only when I am running) it also help to slow the digestive system.
Buscopan only seems to work for so long then stops.
Mines is 80% under control now.
Its such a shame he has when though all this since childhood.

Sounds really difficult. I'm not a HCP but reckon there must be a cause? Would it be worth seeking a second opinion/going private? Sorry, not much help! Poor lad. Awful at any time of life but hard when you are trying to spread your wings. Hope someone else on here can help.

Thanks Confused - never heard of Lemorazide. Is that prescription only?

We've tried loperamide a few times (the over the counter stuff for holiday tummy) but it is always grim and barely worth it. Everything stops, turns into sticky tar, causes him no end of crampy pain & then explodes out again (sorry probably TMI).

Thanks Steamcloud, I'm wondering that too. I have private health cover through my work that covers the DC. I'm just not sure who to go to. The Gastro was very nice & showed us all the photos of his lovely pink, healthy insides and also let us look at all the blood test & biopsy results and there was nothing even vaguely borderline to seize on.

Sorry to read that you are going through this.

Please ignore this if it has already been ruled out, has BAM bile acid (or salt) malabsorption been definitively ruled out ? DH had been the rounds of camera up and camera down and a general diagnosis of IBS years ago and was only recently tested for BAM. It's early days yet but seems to have made a significant difference. Just wanted to mention it just incase we could save you the years DH feels have been a bit wasted. Good luck.

https://www.uhcw.nhs.uk/bam/what-is-bam/

I think the prescorpion one is slightly stronger that the over the counter ones- but not by much from what I remember.
I found that at first also but I am now able to work out the right amount of tablets for me when I need them. And it stops the pains.
The fact that they increased the pain I would be questioning if it was ibs.
I also think a second opinion would be worth while.

Ps if you go private (good idea) You would be as well doing it now while your ds is still classed as a minor. Some policys have age cut offs etc

I hope you find something to help him.

That's interesting FinallyHere, thank you. I guess that would be one of the things I could request privately.

Yes I can't imagine a private consultant would do anything better; it might even be the same chap in a private setting. Maybe they would have more scope to do other tests though? (Just thinking aloud here!). Hopefully someone on here will recommend a good specialist in your area.

Bumping!

Good point about him still being a minor - thank you Confused. I think I may as well get a second opinion.

As someone who's had IBS since a
teenager I can sympathise, it's miserable.
Nothing works for me apart from cutting gluten out has helped.
I read recently that Vitamin D can help as being low on it can cause IBS.
Also calcium supplements are supposed to help - I'm going to try them soon.
Slippery Elm supplements are something I've read about too.
Aloe Vera juice, though never found this any good personally.
Peppermint tea and capsules were recommended by my doctor but again I don't find they personally help.
You could try alternative therapies such as reflexology/acupuncture as a last resort?
You sound like you're being very supportive of him, I wish my parents had been. It's a difficult time of your life to have these problems

keepingbees, I feel so desperately sorry for him. Like you say it is miserable. If someone told me boiled bat would help, I'd be out there with my net catching them (and I'm terrified of bats)!

I feel for you and your son. My daughter is 9 and has also just been through all the tests (just have an MRE to go) and they’ve found nothing.

Initially they were pretty sure she had IBD, but now, as a result of all the clear test results, seem to be putting hers down to IBS-C, although she was showing no signs of constipation until they put her on mebeverine, which is confusing. She is in daily pain, often to screaming point and the Gastro has said if the MRE shows nothing, they have done all they can do and will diagnose IBS.

I am considering going private and have heard good things about this guy and also this one with the latter also being aware of gastri issues relating to connective tissue disorders such as EDS and HSD, which we have in our family.

I am not sure if either of them see patients up to the age of 18, but thought I would mention them as I have heard from other parents who have been very happy with their care.

I really hope your son gets some answers and help soon. It’s heartbreaking seeing them in so much distress on a daily basis.

If you haven't tried dairy free yet, it would be worth giving it a whirl. May make no difference at all, but I've noticed that IBS tends to run in the same families that have babies with cows milk protein intolerance, which fits in with some people with IBS finding that dairy free helps.

Thank you Moose and nocoolname. All really helpful.

Have you tried keeping a food diary? Worth trying dairy free as someone else has said. Garlic and onions can cause upset too (they're in more things than you realise)
Fructose in various forms as a sweetener can too.
Try him on some good probiotic capsules too.
If I ever find anything that helps I'll let you know

FODMAP - really worth doing. Takes a while to get through the whole thing but you know within a couple of weeks whether it is working or not.

A friend of mine did the FODMAP thing under supervision from a dietician. It's incredibly difficult and limits what you can eat to a ridiculous degree, and took 6 months once you counted the very slow process of adding stuff back in after citing it out. For her it absolutely worked and was completely worth it and she wouldn't go back but it's worth being aware in advance just how hard it is to do. I have ibs although not nearly to the degree your son has, OP, and I have do much sympathy for him and for you trying to help him. Good luck with finding something to help.

I did a bit of research on FODMAP last night & it frightens me the degree of commitment required. I think I would be able to do it - but I'm not sure about him! I know that if it doesn't work within 24 hours, he'll give up. He has ZERO patience. Anyway, that's my battle to have with him.

Keep the suggestions coming, they are really helpful.

We are doing a food, stool and symptoms diary at the moment to see if we can identify and triggers for dd.

FODMAP is a good idea to help identify triggers, but you should really only do it under the guidance of a fully qualified dietician. My BIL was advised to do it by a Gastro, who then left it too long to start reintroducing foods and he now reacts to almost everything as a result, he is so much worse than he was before.

Re probiotics, I know some people have good results with Symprove, but a bit of research online seems to suggest quite a few Gastros recommend this one. It’s not cheap, but I am desperate enough to be seriously considering trying dd on it.

Has he been abroad anywhere he could have picked up a parasite infection?
Also I've heard of something called H.pylori worth you googling

Keepingbees, we had all those things checked out, but thank you for thinking of them.

He's got a uni visit today, so he's taken some loperamide so he doesn't have to worry about not being able to find a loo quick enough.