Diet options

OH has CLL, diagnosed 2014, treated RFC 2017.

Nearly didn't make it after dreadful Covid in 2020, but is tenacious and determined and, thank heavens, he was very fit beforehand, so survived, but carrying many after-effects, one of which seems to be chronic diarrhoea - so am looking at various diet options at the moment, does anyone have any sparkling insight for me?

He enjoys almost all foods, weight is stable, but could do with increasing a bit.

He takes loperamided daily, just 1 capsule - has a big issue with taking 'more pills' - but am at my wit's end trying to work out how to deal with this, amongst everything else that's going on.

[mrsjsmith]

Have you discussed with his consultant, it might be worth it.

Luckily something I rarely have and then take I Dioralyte which is an electrolyte powder to replace lost body salts. The old remedy is BRAT banana, rice, apple sauce and toast.

Colette

[Hidden in reply to mrsjsmith]

Yes we have, he's having more tests to see if there's anything lurking, just awaiting results.Have been looking at a low residue diet, so may try that for a couple of weeks - it's not recommended long-term though.

Have already tried lactose-free, gluten-free, to no avail. He has no pain fortunately, just ....

[mrsjsmith in reply to Hidden]

Perhaps also ask for a referral to a dietician and food allergy testing. Some of the articles by Tim Spector are interesting around gut health.

[Hidden in reply to mrsjsmith]

Thank you. And you're right, I will try to sort out a dietician etc. OH sometimes just wants to stick his head in the sand about it all .... our life seems to be driven by consultations, doctors, medications, injections, blood tests. Hard to see the wood for the trees sometimes.

[mrsjsmith in reply to Hidden]

Sadly I agree but sometimes being organised makes me feel stronger.

Hope you get some answers soon.

[bennevisplace]

A few years ago I was referred to a Dietitian in the NHS for unexplained IBS-like symptoms. The "consultation", totally ignoring the detailed questionnaire I had carefully answered, consisted of the dietitian handing me a set of booklets about FODMAPs and related diet plans. From which I gather that this is the NHS' preferred solution to most IBS-like syndromes.

In essence, the dietary plan is to exclude all FODMAPs (the list is long), regain normal gut function, one hopes, then re-introduce them one by one. I felt more than a little cheated by this experience, didn't read the booklets, managed my own diet and got better in a few weeks.

FWIW here is the official NHS guidance nhs.uk/conditions/irritable...

[Hidden in reply to bennevisplace]

Thanks. Have been looking at various options. We're not under the NHS, we live in France, but am drawing a bit of a blank at the moment trying to sort this out. I guess because they think it's minor in the bigger picture of things. But it does get him down.

[bennevisplace in reply to Hidden]

I guess your OH's doctor has diagnosed post-infection IBS, caused by changes wreaked upon the network of nerves connecting the gut and the brain, i.e. disordered gut-brain interaction or DGBI - see health.harvard.edu/blog/can... It's a well known syndrome, but I think he may need a GI specialist.

[LuzyCLL]

When I had IBS, I ate protein, vegetables, and sauerkraut (probiotic so is Kim Chee). Fruit is ok, but if you try to not eat the Foodmap items, it will help a lot. It took me about two weeks for relief. The probiotics (also a capsule) overcame the bad intestinal inflammation. Definitely no beer or sugar.

[Horsechestnut]

If not checked already, have him checked for c.diff.

[Gampo]

Hi, I’ve had mild issues with diarrhoea whilst on W&W, though nothing too concerning. However, this led me to look into probiotics and after some experimentation with different brands I signed up for Seed from the US. This was a game changer for me, I noticed improvement with the diarrhoea but also other improvements- I was having trouble with sinuses and my poor nose was splitting in places but within 2 weeks of taking Seed each morning this really improved. It’s a bit on the pricey side and to get free international postage you have to get three month supply at once seed.com/

Good luck.

[LeoPa]

Here is what I would do if I was in that situation. No grains, no fruit, no dairy, no rice, no potatoes, no sweet potatoes. No vegetable oils except extra virgin olive oil and coconut oil. No processed food of any kind. If it comes in a packing with an ingredient list on, it's a no no. Eat meat, eggs and all kinds of vegetables. All cooked. Not raw,not juiced. Use spices to taste. If you want to know whether a specific item is okay or not just ask. Good luck.

[Hidden in reply to LeoPa]

Thanks. Fortunately we already eat everything cooked from scratch (always have done), so will try cutting out some of the things you suggest. I guess fish is OK?

[LeoPa in reply to Hidden]

Hi, yes, unless you have a known allergy to fish it's a healthy food. Go for wild caught instead of farmed if you can. My favorites are sardines and mackerel. Small fish accumulate less toxins during their life in their bodies. They contain plenty essential fatty acids, EPA and DHA as well.

[DrunkJam_UK]

Has he tried taking activated charcoal instead of the loperamide? Don't panic, I'm not pushing fakery and getting people to not take meds. I struggle with anxiety (and, I suspect, caffeine related) diarrhoea and I find activated charcoal really helps. It's also not a drug as such.

I see you are already in the middle of tests etc to check the symptom out, which is important.

[Hidden in reply to DrunkJam_UK]

Have just looked up activated charcoal - all sounds a bit scary and, according to the Mayo Clinic - Activated charcoal has not been shown to be effective in relieving diarrhea and intestinal gas. Hmm. I think we'll pass on this at the moment.

[DrunkJam_UK in reply to Hidden]

Fair enough. I know DH (who has CLL , oropharyngeal and nasopharyngeal cancers) was given it incidentally in hospital on NHS after one of his treatments caused a problem, but it's really important to do what works with your own treatment.

[Imua]

As a retired dietitian, I would strongly recommend you see a dietitian who specializes in GI health once you have ruled out any other related medical issues. You need some expert guidance. Also be aware that stress can cause GI upsets, including diarrhea . There is lots of stress associated with CLL!

[Hidden in reply to Imua]

Thanks. Sadly he's also taking a cocktail of drugs, so quite likely that some of those are at the root of the problem as well. And am only too aware of the stress involved in this. He's on anti-depressants, and I'm seeing a psychologist. Not quite the retirement we were hoping for.

[SofiaDeo]

When I had GI problems following one treatment, I had to eat a limited diet to calm my GI tract. I took glutamine powder as a supplement, to try to help it heal. I also ate at least 10% "extra" complete proteins, and extra micronutrients, to help make new healthy GI cells as well as contribute to healthy functioning GI microbiome.

ncbi.nlm.nih.gov/pmc/articl...

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

webmd.com/diet/health-benef...

I buy the plain powder and mix it into something liquid, instead of a capsule. So my gut doesn't even have to dissolve the capsule. Do check with a doc before starting this, if you want to try it. I took a lowish 5gm dose, nothing really high.