As many of your know, our son Freddie (15) has had severed food intolerances since a serious bout of gastroenteritis on a trip to Mexico in April 2018.
(My belief is that he contracted salmonella after handling a crocodile but we will never know for sure).

2 months after returning from our trip Freddie started experiencing diarrhoea from certain food - mainly milk.
After seeking medical and dietician advice we tried him on a low fodmap diet and realised that he is severely intolerant (instant stomach pains and diarrhoea) to lactose and fructose. He is also intolerant to fructan (wheat etc..) but can tolerate small amounts if he is not exercising. if he tries to run after eating fructan in the previous 24 hours, he has instant and repetative diarrhoea.
Essentially his diagnosis is Post Infectious Irritable Bowel Syndrome. 50% of people recover after 3-5 years.
He has an app on his phone (Monash university) that tells him what he can and can't eat. Some are logical but others more confusing, e.g. no to white peaches but yellow peaches are OK. Apricots, cherries, watermelon, mango, apples, pears and nectarines are all a no. Unfortunately the main fruit that is fine are oranges and mandarins, neither are particularly nice at this time of year. Grapes are OK too.
Underipe bananas are OK but over ripe are not.
Broccoli heads are fine but stems are not.
etc... etc...

Over the summer break I have been researching Fecal Microbe Transfer (FMT) online, it is proving to be successful overseas.
There is one Doctor here in NZ doing this, Dr Richard Everts in Nelson. Richard is a specialist in infectious diseases, works at Nelson hospital but also does this process privately.
It is as it sounds, fecal microbes from donors (stringent screening process) are syringed into the bowel of the sufferer in the hope that the microbes take over and improve health.
I have been really nervous about this in terms of the risk factor of "other peoples" bacteria etc... but I am assured that there isn't a risk as screening processes are tight.
I have also wondered if we should give it another year before trying this but it would be amazing if one weekend in Nelson could change his life around. Complex intolerances are socially very difficult.

We are looking to take Freddie to Nelson for this, sometime in March.

As it is so rare I am not expecting others to be able to offer advice or experience but I am sharing this as you may have dietary issues in your families or an interest in it.

I will keep you posted as to the outcome.



Edited 2 time(s). Last edit at 01/31/2020 12:13AM by helen.

Helen, whatever you decide, I wish you all the best for your son's future health. You've done your homework so can go in knowing you've made the best decision you could have at the time.

I had PRP (platelet rich plasma) treatment for chronic hip tendonitis in something like 2013. It wasn't offered by the health system and I still don't think it is, but some doctors who have had excellent results from experience do it privately. The standard health system treatment is injections of cortisone, etc, which manages the symptoms (plus creates negative side effects) but doesn't treat the cause. After one PRP treatment, I was cured and have been pain-free and extremely grateful ever since (except for one day when I stacked about 15 cubic metres of firewood and all the bending brought the pain back for a few hours). The reason I mention this is PRP, like fecal transplant, is currently outside the main health system but I believe both can have significant benefits.



Edited 1 time(s). Last edit at 01/30/2020 08:56PM by J1.

How strange, I was just reading about Freddie's problem on the other thread and immediately thought of fecal transfer! You've probably seen this in your research already, but I've read so many positive experiences from people who've had it. Understandably, any reservations were completely outweighed by the benefit of the treatment.

I also wondered if you'd tried Freddie on kefir to help rebuild his biome. Of course he wouldn't be able to have the milk-based one, but the water-based one could be helpful assuming he's OK with "normal" sugar which it feeds on (not sure if the fructose component of sugar means it's off-limits). Best of luck to him, it sounds awful and very worrying for all of you.

Good on you Helen. By the sounds of it it will take a lot more than kefir or other probiotic foods to fix the problem. I have read that the beneficial effects of a faecal transplant are almost instant., whereas trying to rebuild his microbiome with food would be an extremely slow and uncertain process.

I look forward to your reports.

It is such a big decision to make,
There was a 2019 study to look at the long term safety of FMT with no results available as yet.
As Freddie is only 15 I am cautious about any potentially negative impacts of this.
Once done, it's done and it would be life changing if we compromised the life of our child from being uncomfortable to debilitating or fatal.
Aargh.
On the flip side it would be lovely if it made a difference.
March is feeling very close so it may be that we need to take more time in this decision.
I just don't know.

TPANDAV: probiotics are certainly widely used in treatment of IBS-PI, although naturally they're not a magic bullet. But then, neither is FMT in many cases. Helen, if you're still making this decision (and apologies if you've already seen this), a reputable 2018 study in the American Journal of Gastroenterology looked at the effects of FMT specifically on IBS-PI, up to six months after PMT. After 6 months, 64% of the IBS-PI patients were still experiencing diarrhoea and 38% still had abdominal pain. The study's authors therefore described PMT as having a "limited role" with IBS-PI. Of course, it's still entirely possible that Freddie could be one of the lucky ones, but if you're also worried about the potential safety, it might be something you factor into the decision.

Thanks Carolyn, I hadn't seen that data.
We haven't tried probiotics as our dietician and GP didn't think they would make a difference. Maybe I should look more into it.

This is what the Dr in Nelson said regarding IBS and FMT.


"Assuming he has irritable bowel/functional bowel problems, which is likely based on your information, he has about an 80% chance of improving with the FMT treatment. I can’t guarantee that he won’t still react to some foods or exercise, but 80% improve – often substantially. For some patients it’s transforming. For others, there is no change in symptoms."

Helen, if you haven't tried probiotics yet, you may be interested in this.

I had some scepticism about the efficacy of probiotics. I'd tried a couple of them for myself (I have some FODMAP issues) and experienced no change. But a gentleman I know had been experiencing for a number of years an intermittent, terrible pain in his abdominal area (his doctor said it was located in his intestines) which he referred to as "cramp". It would hit him whenever he was standing for any length of time, at night asleep in bed, or watching TV, and be extremely debilitating for several minutes, while he waited for it to subside. I felt it sounded like maybe it was diverticulosis. The doctor was offering no remedy for it. Despite my own scepticism, I suggested he try Nutra-Life ProBiotica 50 Billion Broad Spectrum Priobiotic. It has 50 billion and 11 strains:

Ingredients: each veg capsule provides:
Proprietary blend 50 billion CFU from:
Lactobacillus acidophilus 20 billion CFU
Bifidobacterium animalis ssp. Lactis 10 billion CFU
HOWARU* Bifidobacterium animalis ssp. Lactis 10 billion CFU
Bifidobacterium breve 2.5 billion CFU
Bifidobacterium longum 2.5 billion CFU
Lactobacillus casei 1.25 billion CFU
Lactobacillus paracasei subsp. Paracasei 1 billion CFU
Lactobacillus plantarum 1 billion CFU
Lactobacillus salivarius ssp. Salivarius 1 billion CFU
Lactobacillus rhamnosus 0.5 billion CFU
Lactobacillus delbrueckii ssp. Bulgaricus 0.25 billion CFU
Encapsulating aids
Formulated without gluten, wheat, animal products, dairy products, egg, soy, artificial colours, artificial flavours, artificial sweeteners or preservatives. Suitable for vegetarians and vegans.

Well, he's a new man. It fixed the "cramp". Initially he took the probiotic every day for about three months and then he tried not taking it but the pain came back so now he takes a tablet not every day but now and again, without leaving too long a gap between tablets. All is good! He even told a friend who was having some gut issues (I don't know what sort of gut issues, but something that did cause pain as well), so the friend bought some and now swears by them as well.

Worth a try. Best wishes.

After a quick google it appears that Bifidobacterium infantis is the active ingredient most likely to help with IBS so I have been and bought Lifestream Advanced Probiotics with 14 strains including the one mentioned.

I have always been sceptical due to the medical professionals being the same.
Lets see if it improves things.

Hi Helen,
Have you posted about the outcome of Freddie’s FMT ? I am keen to know how it went and if this helped. Looking into this for my daughter to fix a constant blocked nose/mouth breathing. Have tried everything under the sun with a few integrative practitioners to no avail.... Cheers Sarah

Hi Saranz, unfortunately FMT didn't offer Freddie any improvement but it was worth trying. Although he may not think that .
I am sure you have checked out Breathing works - my friend Tania Clifton-Smith is a physic breathing specialist if you are needing to explore that area.

Hi Helen,

Do you have an email address for Richard and can I ask how much it cost roughly?

Thanks
Adele

Oops sorry Adele, yes I do.
Richard's email address is Richard.Everts@nmdhb.govt.nz
If you have health insurance then most of the treatment could be covered. Ours was pretty much covered so I dont know the price sorry.