Advice needed please

[whiteladder42]

Although my IBS has been getting steadily worse for 5 years now (can't drive, can barely leave the house, on Oramorph for the pain) the last few weeks since I was hospitalised with Norovirus my pain has worsened significantly, especially after a hot meal. I eat meat, potatoes and fish and a small amount of cheddar (under dietician supervision) and in child sized portions at best. I've been advised by several GI consultants that probiotics or prebiotics could potentially make things worse and that there are no scientific grounds to say they help anyone, let alone IBS sufferers. Does anyone have any suggestions as to general advice? Or questions I could ask my dieitician (have appointment tomorrow afternoon). Thank you.

[Hidden]

It's not uncommon for something like nori virus or food poisoning to make ibs worse or even to be the trigger that starts ibs in the first place. Hopefully your symptoms will settle back down. As for probiotics I have been taking one a day for over a year and noticed a massive improvement. I suppose its different for everyone and you won't know until you try

[whiteladder42]

Thanks Lynne, it was gastroenteritis that started it all 5 years ago these past two years have been a living hell. What brand of probiotics do you take and how much are they? I have no money at all can barely afford prescriptions.

[Gillyfields]

I have also found a massive improvement with probiotics and use either nutri or higher nature. Cheap brands are a waste of your money!

[Hidden]

I've tried a lot of different probiotics from Symprove and VSL#3 to less expensive options and only one has had any effect on my IBS which was to increase the pain!

As someone pointed out to me recently on this site, probiotics are a very hit-and-miss affair at the moment. If you're fortunate enough to hit on the exact brand which contains the good bacteria which you're short of, you may find it benefits you, if not, you've wasted your money - not to mention that it could ostensibly make things worse (as I discovered for myself).

There are private labs out there which will analyse your gut flora and tell you which bacteria are high or low, but I'm unsure as to whether these tests are genuine or not, if results are that reliable, I think the NHS would be doing them.

The low-FODMAP diet works extremely well for me, but as I'm always anxious to increase my abilty to eat off it, I'm currently going down the aloe vera route and just about to embark on digestive enzymes too. Aloe isn't available on prescription but the enzymes are - might be worth talking to your GP about them.

Pagan

[PatV in reply to Hidden]

what kind of aloe vera do you take and how much?

[Hidden]

Hi PatV,

It wasn't as simple to get started on aloe vera as I thought since, having spent quite a bit of time researching it, I discovered that it had to meet certain production criteria before it had a hope being effective. These were: it had to be made from the inner leaf only, cold-pressed (as opposed to heat-treated which destroys its properties), organic and not contain sweeteners and/or artificial preservatives. In my particular case that meant an absence of sodium benzoate as this plays havoc with my insides.

After much fruitless searching for a suitable product, another member of this network picked up on my post and recommended the brand, 'Pukka', at pukkaherbs.com. This had been recommended to her brother by a doctor as the best aloe vera juice. It costs £20.99 a litre and, at the moment, I'm taking 30ml twice daily.

I'd love to be able to tell you that it's working brilliantly but, as with all healing remedies, it takes time - anything from 6 - 8 weeks - before you know whether it's doing any good or not. So, as I've only been taking it for 10 days I'm unable to comment at the moment other than to say that it's not doing me any harm!

Pagan

[2Chrissie4]

Ask for Creon. That is what I had prescribed to me by GI Surgeon when I found it near impossible to be discharged from hospital after having my J-Tube resited. I take Creon 40000 capsule 3 times a day with food, 10mg Codeine 30minutes before food 3 times a day (the codeine helps to bulk up the stools)and 2 capsules of 5mg Loperamide every morning and evening. My medication is now balanced and I have my IBS- D under control. The meds allow me some life back but I still get urgent urges for the toilet sometimes but are bareable now thank god. Have a word with your medics.

[2Chrissie4]

Forgot to say that Creon comes in different strengths depending on your needs.

[sickandsore]

VSL#3 is available on prescription, I think its has to be worth a go, go back to your dietician and see if she/he will write to your GP to ask that you at least give them a go..Have you tried the low fodmap diet? sounds as though you are on a restricted diet as it is though. The low fodmap diet has helped with regard IBS D but I find I suffer more with IBS C which is often more painful.Like you I only when things are bad survive on pain relief and often that is oramorph which being a single mum to 3 children one of whom is severely autistic its not exactly safe! i try to drink at least 1.5L of water a day and i take flaxseed to help clear my bowel but tbh im finding that isnt helping as much these days..its a minefield, what works for one doesnt often work fr another.

Im looking into alternative therapies but these cost so not knowing your situation im not sure if you could stretch to trying out somthing like hypnotherapy, not sure if you can have this on the NHS? be worth finding out as it has helped a lot of sufferers.

I hope things get better for you soon, I know how miserable this condition is

[poing in reply to sickandsore]

Fibre may not always help with constipation, and may ultimately make it worse - have a look at "fibre menace".

gutsense.org/fibermenace/ab...

I follow one of the recommendations that he makes, which is to use small amounts of magnesium citrate as a stool softener. It seems to be one of the least harsh methods of dealing with things.

There was some research published recently backing this up, it actually showed that a low fibre diet improved constipation... sounds strange, I know. It was mentioned on Chris Kresser's website.

Opiate painkillers can actually make C worse too, because they paralyse the smooth muscle of the intestines, so may unfortunately be perpetuating the problem.

poing

[sickandsore in reply to poing]

That makes a lot of sense to me, the more fibre I ate the worse things got, my Gp tried fybogel and other bulking meds but nothing has helped.actuall eating less fruit veg and cutting out wheat has helped a little.

Generally my bowel is just lazy, if i dont drink loads of water it wont work at all!

[whiteladder42]

Thank you for suggesting the VSL3 I will call my GP tomorrow and see what he says. I found it in my BNF at the back and although it's quite expensive it's nowhere near the cost of repeated emergency hospital admissions, surely?! Worth a try...

[Hidden]

I'm so sorry you have been so poorly, as far as I'm concerned there is no worse illness unless life threatening! My IBS started with food poisoning in 1996, I had no problems before that.

What I find helps my IBS C is exercise, it costs nothing as I either walk/powerwalk or cycle. The bike has worked out very cost effective for me as I rarely catch a bus - I cannot remember the last time I went on one to get to work. I also cut out broccoli, cauliflower and grapes and my IBS is better since doing that. Best of luck whiteladder42.