Brain Injury and gut problems.

[Glenquoich]

I've just a telephone consultation with my Gastroenterologist, I had a colonoscopy and biopsy last month and they're clear. That news is good, because at least I know it's not 'life threatening' and I was concerned; I lost my two closest friends to bowel cancer before the age of 50.

I developed IBS a year or two after my accident then it disappeared for a few years, with the odd flare up. The Gastroenterologist suspects my IBS is back with a vengeance, I'm suffering daily from various bowel dysfunctions, it's been getting worse year on year for the past 5. I've been on a restricted diet of strictly fruit, veg, pulses, fish since March and have now been referred, today, on to a dietician.

I've been reading a lot recently on the brain-gut connection. This worsening condition for me is just adding to the post TBI burden and is getting me down.

Has anyone got any experience of this and any tips or dietary advice?

[pinkvision]

Hi I've been through this whole process. What they worked out was that my dysfunctional visual processing was causing the brain to go into panic mode. This has a big impact on the stomach, the body in panic mode (fright /flight) alters the blood flow in the body and draws blood from the gastric system ready for the fright flight reaction. The stomach produces an excess of acid causing reflux and if you leave it will cause ulcers and further problems with a sliding hiatus hernia. You may find your heart rate also increases at these times also. It got bad enough for me where I would faint and blackout with all the blood flow issues.

The 'cure' was to get my vision corrected as much as possible via behavioural optometry (I see you have been down the Irlen's route, it works for what it does but is a limited process and you may want to get a wider range of tests from a 'good optometrist' also). I was told to avoid anything sensory that causes a problem as much as possible, ie lighting, noisy places, busy places not just people but also visually busy like patterned carpets, bright colours, shops, offices, etc. When I had to go into hospital a lot, I used to get so bad that they eventually sent me to an OT to get assessed and the visual aspect was found to be the major cause of the panic mode and was classified as an 'allergy' and not a sensitivity. If a sensitivity makes you ill it's an allergy and steps should be taken to aid you not make you ill.

Then there was the diet, I found it easiest to go totally veggie, no spices at all, no fruit with an acid content eg apples and oranges and grapes. Basically acid and fat and spices will cause you a problem so will alcohol, tobacco/ nicotene and caffine.

[Glenquoich in reply to pinkvision]

Thanks.

I had a full post Brain Injury Optometry assessment 12 months ago at Glasgow Caledonian University. The professor there told me my processing visual information is slow but everything else is fine (eye axis etc), dyslexia aside. Noise and smells seem to be my anxiety triggers as well as the random movement of people in crowds.

I don't touch alcohol or tobacco, and only occasionally drink Yerba Mate or coffee, caffeine wise. My heart rate and blood pressure are always on the low side. I live in a remote location, these days, I can count on one hand how many people I see most days.

I had a duodenal ulcer in my 20/30s but it's gone after the antibiotic therapy, I was on antibiotics from 17-25 for acne until I got Roaccutaine; which leads me to think about my gut biome maybe being compromised. Years of alcohol abuse won't have helped either but I'm 8 years since my last drink.

The acidic fruit reaction you mention sounds interesting; thanks; I'll look into that.

It's going to be a few weeks before I see the dietician so I think I'll go vegan/veggie until then.

I'm also about to see an OT for a dyspraxia assessment. I'm sure it's all connected.

It wears me down most of the time, even after all these years.

[pinkvision in reply to Glenquoich]

All connected for sure, once you find the right balance relation to the symptoms and triggers and adjust your life accordingly everything gets so much easier. The hardest part is connecting the dots and learning to accept that you can't go back to what you were and embrace the future within your new boundaries. It may feel hard at the start of this new way of life but a whole new world opens up and sometimes you sit and wonder at all the time that has been wasted when you were 'normal'. Positivity and an open mind is all you need.

[Painting-girl]

That sounds grim. Glad you've ruled out anything sinister though. Bowel cancer is awful.

I've had some IBS issues this year, following a bad stomach bug ( food poisoning?) earlier on this year. Seemed to be triggered by dairy and eggs. I reintroduced dairy successfully after a couple of weeks, but a few trys at reintroducing eggs have been unsuccessful so far - so they seem to be the culprit (super annoying as I eat meat fairly rarely).

I find mint tea ( fresh or teabags) really helpful. (Also good old-fashioned porridge with water, salt and sugar seems digestible).

Did you restrict your diet under advice? As you've eliminated eggs, wheat, meat, and dairy for a quite while now, it seems unlikely they are a culprit? See what your dietician says of course, but would think you could start to slowly reintroduce one at a time now.

Have you kept a food diary for a couple of weeks? The dietician will almost certainly ask you to keep one, so it may be handy to go ready prepared.

Food allergies / intolerances are a possibility - if the dietician doesn't help, see if you can get a referral to an NHS allergy clinic for the pinprick/scratch tests ( it takes a while..). I had some anaphylactic reactions (pre TBI ) about six years ago and actually found the test results enormously useful in identifying what I wasn't allergic to (saves eliminating innocent common allergens). The diagnosis was a sulphite intolerance - basically for me it means largely avoiding processed foodstuffs (and wine) so not toooo difficult (though bit sad about the wine to be fair!) Bizzarely enough although it is technically an intolerance, it triggers histamine production - so the end result presents like an allergic reaction.

I have noticed since that low 'doses' of sulphites (like eating frozen chips or crisps, when I'm not at home) don't trigger a mega reaction now, but will still affect my gut quite badly.

Good luck with the dietician

Jen 🌸

[Glenquoich in reply to Painting-girl]

Thanks.

I'm reluctant to return to eating anything other than the restricted diet I'm on. I've tried reintroducing some foods over the last few months and red meat(unbearably itchy skin), eggs (bowel seizes), dairy and bread(bowel loosens) have all been tried a couple of times.

Overall though, it's generally just as bad. In hindsight, I've had a few periods in my life where I felt really good and my fatigue was minimal. At these times I was on a veg soup (my own recipe), juices and smoothies (a la Jason Vale) and only one meal early evening of shellfish and seaweed.

However, I rely on help at home because since moving here a few years ago and I don't really get much. I'm still trying to navigate my way around the house, I can't find things the same. My wife and son lived here for a year before me because I was still renovating the old house to sell. They've both got their own routines and spend most of the day at work, both are really busy with covid related extra workloads. I've been unable to get out of bed for the last month for any more than an hour or so for the past month, so it's fruit and bowls of nuts during the day and a salad at night when my wife comes home at 8pm.

This is probably not helping, I've asked my wife and son for help at organising the house a bit more conducive to my needs and help with making up food but they're both really busy.

No doubt my current daily living isn't helping and it's a downward spiral because my fatigue. headaches and depression make it impossible to bootstrap myself. I've thought about the psych ward again for a month to see if it can kickstart me a bit(my wife's health insurance covers that) but the gastric problem prevents me from getting into the hospital.

I'm sure once I've seen the OT for the dyspraxia and the dietician my wife might get her head turned from her workaholic life and get the wake up call, I desperately need.

When I moved here, I was burned out after the house renovations, it's really been a downward trajectory since then.

[Painting-girl in reply to Glenquoich]

So sorry you are bed bound. Sounds rough. Being depressed makes everything feel really hard too. Are you able to access psychology appointments via Skype/ Zoom to help work through what could help?

Bit of a vicious circle. You won't feel great on a limited diet, but while your fatigue is bad, you'll find it difficult to plan food.

Can you do it in stages - plan something simple like lentil soup or a casserole with potato one day, organise ingredients another week, and cook on another - so you can freeze individual portions to just microwave when you feel lousy? It'll take a while but probably worth it.

(After my episodes in the summer, I know the horror of the erupting bowel when I'm out - so sympathise).

Just a thought - have you had bloods done recently? Are you low on vitamin D and B12? Vitamin deficiencies make you feel really awful

When are your appointments?

[Glenquoich in reply to Painting-girl]

Thanks for that tip, organising it over 3 weeks and getting it done is much better than trying to do it in one week and three weeks later having nothing done.

I see my private sector Psychologist about once a month over zoom, a 3rd sector mental health counsellor once a month on zoom and an NHS OT phones every 10 days or so; she's clueless about BI, patronises me and tries to convince me I'm doing well when I know I'm not.

I've no idea when the dietician appointment is, I was only told I was getting referred yesterday by the Gastro consultant. It's on insurance so shouldn't be too long a wait. The same with the OT for dyspraxia, although I'm using my savings for that assessment.

I've not had my bloods done for vitamins, I get my bloods checked every 3 months to monitor liver function because I'm on Agomelatine (an anti-depressant). It sounds like a good idea to ask about a vitamin tests.

I suppose what's really needed is the conversation with the family about structuring life a bit better. I've not had much progress trying on my own. I hate to speak ill of her but I need to get my wife's thinking round to the idea that throwing money at a problem is not always the only solution.

Thanks for your replies, they're really helping. I'm grateful.

[Painting-girl in reply to Glenquoich]

Glad if it helps... 😊

I'm having a knocked out week from seeing the family last week - knew I would feel rough afterwards, but it's always a shock. Keep having to remind myself it will ease off soon. So might be giving good advice, but trying to follow it myself this week is harder. For some reason I didn't take regular breaks today - and I know that's disastrous, even if I'm not doing much in-between!

Shame about the OT it's annoying when dealing with people that don't know about BI, isnt it?

Glad you've got psychology going still. Me too. My neuropsychologist is good for practical stuff. I was on my firm's private medical cover until August, but at least it got me in front of some good people in the end, was still a hefty element of chance involved though, worryingly. It sounds as if it was a bit more helpful than some of the NHS experience.

I only know about the vitamins because I got severely low on vitamin D some time before my TBI - and it was only picked up by the NHS allergy clinic consultant - he said that he always screens for D deficiency, because in his experience lack of it makes allergies worse / more likely. My energy levels were amazing once that was sorted out. If it's very low, you can get D as a series of loading doses on the NHS - only costs them about £10 - and it's miraculous. I think B12 is also a similar risk factor for deficiency if you're vegetarian - and iron actually, come to think of it. My iron and D levels took another dive after the TBI - not a good plan on top of TBI fatigue. Whenever I have bloods done, I just ask them to check my D levels as well. I'm just taking OTC multivitamin and mineral tablets to maintain my levels now.

I live on my own, but every so often when I'm stuck I yell for help from friends / family - it's usually about how to problem solve and organise things in small stages, and I have trouble doing it on my own - unfortunately usually wait till I'm desperate, and/or bad tempered, which isn't ideal of course. But I find unless I say very clearly what I can't do, people really don't realise. I hate admitting it, and it's difficult to explain clearly.

Did some working out with the neuropsychologist about when my energy levels are higher - for me it's the evening - so that's when I try and do any planning. It's hopeless if I try to do the same stuff in the morning.

My latest thing is to identify just one thing that I want to do the next day, either something for me like a walk, or painting, or a household task that is driving me nuts leaving it undone. Then the next day I just aim to do that, and anything else I manage is a bonus 😊