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heeelpp......meeeeeeeee....fodmap for IBD/microscopic colitis? [desperate]

(21 Posts)
MuddhaOfSuburbia Tue 22-Mar-16 08:30:18

was going to name change but fuck it

diagnosed with microscopic colitis last summer

deLIGHTed it was just mc, not uc or Crohn's

however that doesn't help the fact that my meds aren't working (it was the initial ones they put me on, said I'd be contacted by ibd nurse, chased, STILL waiting) and have been under virtual house arrest since January because diarrhoea

every now and then I get a good day, but then it all goes to shit again (literally)

had to rush to the bog 5 times already today. Am a sahm so work not an issue at the mo, but am a Busy Person, have shit to do, and this isn't conducive (sp? I DON'T EVEN CARE ANY MORE) to a full and happy family life tbh (eg just told the dog to fuck off)

ANYway. Fodmap. Any good to anyone?

(am already coeliac so used to restrictive diet- not that restrictive tho. Onions WAAAAAAAAH)

MuddhaOfSuburbia Tue 22-Mar-16 18:18:46

bumping

<quite smug about my health probs being too niche for mn>

ok ok

anyone doing fodmap who can tell me where best to look pweeease

have found different lists/blogs but a lot of them seem to contradict each ohter

IndomitabIe Tue 22-Mar-16 18:26:28

DSIL follows a low FODMAP diet for IBS (and it's really successful).

She's been given lots of advice by her dietician. Ask your GP for a referral. (Although, shouldn't they already have referred you following the mc diagnosis?)

DSIL has a couple of booklets with lots of detailed and complex info. Not sure they're available online.

Sorry, that's not very helpful...

MuddhaOfSuburbia Tue 22-Mar-16 18:30:54

thanks indomitable

I got my diagnosis by post, with a letter saying I should get a follow up appointment soon- keep chasing but seem to have dropped out of the system some way along the line

tbh I'm just desperate to DO something in the meantime and this looked like a possibility

but on the colitis/Crohns website they say it's not advisable unless you talk to a dietician first

waaah

IndomitabIe Tue 22-Mar-16 18:31:30

Bit of googling...

Booklets are produced by Kings College, and are only supplied to KCL trained dieticians (list of such dieticians here - request referral to your nearest).

Presumably this is because cutting vast swathes of things from a diet must be monitored and supervised to avoid nutritional deficiencies. (Which can be irreversibly devastating, I've recently learned)

PacificDogwod Tue 22-Mar-16 18:32:36

You should not need to try and do FODMAP without help from a dietician.

I am no expert, but I thought FODMAP was recommended for IBS, not IBD??
Happy to be corrected.

IndomitabIe Tue 22-Mar-16 18:33:12

Definitely see a dietician. Make a GP appointment tomorrow and go armed with that list.

Here's the website where I found that list.

Good luck!

MuddhaOfSuburbia Tue 22-Mar-16 18:36:04

yy- found the KCH thing already

Pacific yes, it's for IBS- but I found something on twitter that mentioned some research on IBD as well, showing some improvement

yes, that vague grin

gah

I should just wait. My brain knows this but my guts are saying different

MuddhaOfSuburbia Tue 22-Mar-16 18:37:04

xposts

yes, you're right- I'll do that!

thanks flowers

LadyPeterWimsey Tue 22-Mar-16 18:37:55

I've found FODMAP effective but pretty tricky to keep to. It really does need to be supported by a FODMAP-trained dietitian because the Internet is full of inaccurate information and you can end up eating almost nothing at all.

It hasn't solved all my problems, though, but I think that is because I also have bile acid malabsorption. Have you had a SeCHAT test? I'm still deciding whether it is bad enough to go on the medication but I understand the meds are very effective if bile acid malabsorption is the problem.

PacificDogwod Tue 22-Mar-16 18:40:35

I just asked colorectal surgeon DH and he says, no, not recognised as treatment for IBD but the internet might well disagree.

As you may have trouble absorbing all nutrients already with your poor inflamed bowel, i'd be careful about restricting your intake as FODMAP would demand without specialist input tbh.

stayathomegardener Tue 22-Mar-16 18:47:32

DD started one today guided by a specialist but yikes it's tough and expensive.
Hopefully it will help.

MuddhaOfSuburbia Tue 22-Mar-16 18:50:30

this wasn't just the internet

this was the internet...^In. America^ grin

couldn't find anything from the uk so that should have made me proceed with caution

I haven't had that test LadyP -just looked it up

I'll talk to the GP. She's pretty thorough

BerylMeeps Tue 22-Mar-16 19:01:32

Problem with IBD is the fact that every diagnosed person is different and can eat different things. My DH can only eat an extremely restricted diet (Crohns) but his friend (UC) can eat lots of things, albeit an extreme reaction when her body decides to say no.

I would strongly suggest cutting out one thing at once, esp as you are Coeliac too, as you risk limiting yourself too much otherwise if you go on any specific dietary regime. Some things will be obvious, like cutting down on fruit and veg, avoiding hard to digest items like nuts and seeds, but some things are less obvious and require thought (DH and friend cannot eat too much red meat- funnily enough the better the quality, the worse it is)

Hope you're feeling better soon. 💩

Wiifitmama Tue 22-Mar-16 19:09:11

I follow a low fodmap diet. I have seen a top gastroenterologist here who does advocate using it. I saw him privately but he also works in the NHS. For me, it is the only thing that helps.

Try this: breakingtheviciouscycle.info I have the book from Amazon. It is well recognised. They don't call it a low fodmap diet, but that is essentially what it is.

Yes, it is incredibly restrictive (and I was already following a restrictive Paleo diet). But effective.

salsamad Tue 22-Mar-16 19:12:15

My DH has Ulcerative Colitis - diagnosed about 14 yrs ago. It's controlled with meds and he doesn't have a restricted diet - just eats reasonably healthily and only has occasional spicy food/takeaway, he does take Yakult daily. Our 18 yr old DS was diagnosed with Crohns at Christmas (apparently IBDisease can be hereditary). Our DS is managing on his meds currently and he eats a reasonably healthy diet but is more careful, no processed meat or foods (sausage,salami, pies etc), no nuts, seeds or popcorn, no spicy food. He also has to eat smaller meals, more regularly. We were told by the IBD consultant that there is no specific diet to follow but that certain foods can cause flare ups.

MuddhaOfSuburbia Tue 22-Mar-16 20:20:47

you're right Beryl

it's just about finding what the trigger is (do feel a bit of a fraud with mc lumped in with UC and Crohns- it must be a walk in the park by comparison. All it really is is diarrhoea)

mama I've seen that diet before- must have been when I got my coeliac dx. Remember thinking how incredibly hard it looked -tho basically I'll do anything to stop feeling like shite/get to leave the house hmm

salsa I'll give yakult a try after this settles down- have had actimel in the past but that doesn't seem to do much if anything. Must be a struggle for ds. I have an 18yo and I cannot iMAGine him not being able to eat processed crap

PacificDogwod Tue 22-Mar-16 20:23:36

Yakult/Activia et al are too sweet for many of the acidophilus bacteria (acidophilus = acid loving). There are probiotic supplements some gastroenterologists will prescribe.
Some are also available from health food store - they are capsules that you swallow whole and get absorbed in the gut, so the sugar problem with a sweet yoghurt is not an issue.

Wiifitmama Tue 22-Mar-16 20:41:32

My gastroenterologist prescribed VSL#3 probiotic (http://www.vsl3.co.uk). It is incredibly expensive. I did manage to get the GP to prescribe some afterwards but not sure if I will get it on repeat.

PacificDogwod Tue 22-Mar-16 20:52:11

That's the one, Wilfmama! I could not remember the name. Yes, not cheap, but has evidence of effectiveness behind it as opposed to what some snake oil pedlars will have you believe

SarahDietitian Thu 14-Apr-16 13:11:55

I'm a dietitian specialising in the Low FODMAP Diet. It absolutely can be used in the treatment of IBD, and there is growing evidence that it is effective for improving IBD symptoms such as diarrhoea, bloating and abdominal pain.

Unfortunately many gastro consultants are skeptical/unaware of the low FODMAP diet, but there are some more enlightened ones!

Each individual has their different problem foods, and it can be difficult to identify what these are. The Low FODMAP Diet removes all of the potential problem foods for about one month, and most people see significant improvement in bowel symptoms. Then foods are reintroduced one by one to identify which foods in particular are problems for you. It can be quite difficult to negotiate, but a good dietician will make it as easy and as stress free as possible.

It is really worthwhile to give the Low FODMAP Diet a go - most of my patients say that when we've figured out what their problem foods are it gives them a sense of much more control over the IBD, and are relieved to be less reliant on trying hit and miss medications. This makes me a very happy person grin!

Your GP can refer you to a FODMAP experienced dietitian, or you can get in touch with a private one via: www.freelancedietitians.org

Hope that helps

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