I’m being investigated for several things at the moment, Liver, pancreas or ovarian cancer. I already have a chronic autoimmune disease of a rheumatoid type and typical add on conditions it attracts. It may be that I have AIP or AIH. My first gastroscopy and colonoscopy are pending soon and in the meantime I plan to eat carefully and well but I’m no cook and don’t shop at Waitrose either. I could do with a single source of information to go to and check on foods that are suitable. Can anyone recommend a site or book please.
I have autoimmune problems and CP too. I am qualified as an animal nutritionist.
I am always too short of time/brain power to do major meal cooking and everything has to be on a minimum budget as I am self employed and struggle to balance life between being able to earn enough and stay well.
Eating a healthy diet is much more simple than you might think.
To maintain a healthy body you are looking for a wide range of plenty of vitamins and minerals, combined with "magic" compounds, with fibre and plenty of fluid.
Vitamins, minerals and the special nutritional compounds are available in their highest proportions in red meat and fish, vegetables, nuts and seeds (including whole grain cereals), salad ingredients and fruit.
The cheapest and simplest way of cooking them is using a microwave, slow cooker or by batch baking in an oven. You can put any surplus into take-away type containers and freeze them for days when you are less well and don't want to cook.
It makes no difference to the nutrition whether things are organic or expensive or cheap: the main thing is you try to use a wide range of things from the above list, use lean cuts of meat and don't add any more oil, salt or sugar than you can get away with. Frozen and tinned ingredients have well preserved nutrition too and are often an easy option as they save lots of prep.
If you can do things simply at home it is much better (and cheaper for the nutrition you get) than eating processed foods which have added salts, sugars and other nutritionally unnecessary ingredients.
A lot of the goodness is in the skin of fruit and vegetables so if you can give things a wash rather than peeling them, so much the better.
Lots of things, like butternut squash, root veg, etc, are difficult to peel and chop up when they are raw but if you bake them whole in the oven first they are easy to deal with once they are cool.
The natural colour of ingredients is a good indicator of varied nutrition so if you can aim to eat a wide range of colours every day you will be sure to be getting a broad balance of nutrients.
Don't be afraid to experiment and try new things too - it can be good fun!
If you like something (non processed - I always want cake!! 😃) there's a chance it's got more of the nutrients your body wants so treat yourself and have a bit more of that in the general balance.
I have PA (pernicious anaemia) and probably something else, as yet undiagnosed. For some reason I have very poor immune responses to just about everything. I have recently managed to get extra vaccinations and am awaiting blood test results to see if they've worked. I have CP which causes EPI (exocrine pancreatic insufficiency) and so have PERT (pancreatic enzyme replacement therapy) to help digest my food.
I also get recurring SIBO (small Intestinal Bacterial Overgrowth) as a result of the poor digestion, so I always struggle to get enough nutrients into me.
I am prone to all sorts of deficiency symptoms but the worst ones are chronic, debilitating fatigue and exhaustion, brain fog if I'm not careful, and joint and skin problems mostly. I'm quite good at managing everything but it's always a battle! 😃
I feel humbled after reading your post and that of Jackie1947. By comparison I’m in tip top condition I think. Stills Disease did alter the direction of my life in a negative way when it arrived at such a crucial age (17) but now at 61 I’m reconciled to the losses it brought.
This current spat of ill health is still under investigation but the support and information you have both shared is invaluable, thank you. If I ever get a f2f appointment with the locum GP at my surgery I will be very well informed. One of the cancers he wants to rule out is ovarian yet he’s sending me for the gastroscopy first….. unless I’m missing something the ovaries can’t be seen via the oesophagus!
I had to swallow a camera a few weeks ago (and, by the way that is a good tip - if you actively try to swallow it, it goes down much easier) and I think they went far enough to check out my ovaries from the inside 😁 but, no, I agree with you!I can't see why they don't just pop you in a CT scanner and check out everything at once? They can do blood tests for lots of cancers too.
I never understand a lot of the decisions! 🙄
I so wish you all the best - it's a horrible position you're in at the moment, isn't it! Good luck! x
PS I know I have my challenges which aren't dissimilar to yours but I definitely wouldn't swap you - except to make your life easier if I could! 8 years ago I'd got so I could barely walk or talk (my brain had stopped working), my teeth and hair were falling out, I couldn't recognise anyone or remember anything, etc, etc, but at least I have managed to learn to manage things with daily jabs and handfuls of pills and have got to a good position now so I can work, look after myself and am improving further.
quick question, I hope you don’t mind? I’m trying to avoid sugar, not that I have much any way but as I’m not drinking I worry juice in bottles available in pubs etc is too sugary and not many places have cartons they pour from or simple cranberry. I’ve read to avoid carbonated drinks, does this just mean fizzy pop style drinks or does it include fizzy water, slimline tonic etc? There’s only so much tea one can drink on a day out with friends that ends in the pub ☕️
Sorry for the delay In replying - I've only just finished work. Thank you for your question - I certainly don't mind! 😃
Good question too!
I have worked in pubs and done bars so I ought to know... But am rather wracking my brains.
My liver packed up when I was 18 and in my first year of agricultural college. I had to restart my course and couldn't drink anything other than water and simple juice while I was at college. There's always an up-side - I learnt to party on fresh air and finished my course solvent!! 😂
I haven't been able to drink any amount of alcohol since, and I've got a genetic heart arrhythmia so I have to avoid coffee. I'm lactose intolerant too so I don't have anything with milk in so I definitely know what you mean about choices when drinking out.
However, I have a scandalously sweet tooth, and so love things like J2O that have relatively high sugar contents.
I'm not sure about the fizz part - if your guts can take it I don't see any reason why carbonated drinks should be a problem - just be aware that some people can't tolerate them. I think it depends on what is causing the CP. I've never coped well with fizzy drinks but my guts have always been suspect! 🙄 I personally think that tonic water is the work of the devil, but as I say, I like sweet things! 😁 I can get away with adding diet lemonade to other things and stirring it to release some of the gas.
Most pubs do still orange juice (which makes me need to wee) and quite a lot do apple juice - which is usually my best option.
Almost all do tomato juice and you can spice it up as a Virgin Mary. It's a good source of potassium, vit C and vitamin B6 too! But I'm not sure how many you can knock back with your friends....
Some pubs do other juices like grapefruit juice - which is very high in vit C - and pineapple juice which also has benefits.
I don't like things cold (fussy beggar! Or at least my guts are) but if you do, get the bar person to load your glass with ice first and the juices will go a lot further.
It's about 10 years since I've been well enough to go out much - I'm either asleep or I'm too likely to pick up something that will half kill me (I went to a meeting with all healthy people in a well ventilated, large hall in November, for the first time in years, and I got pneumonia and then pleurisy, on top of a pre-existing gut infection, and I ended up on 10 weeks of antibiotics and I still can feel the pleurisy, even though I got over the infection several weeks ago). And that was despite being vaccinated for pneumonia at the beginning of November! I've managed to get another protectant vaccine since then so hopefully I'll be OK in future. 🤞
I'm not looking forward to getting covid and am keen to avoid it, if at all possible. 😔
So..... I challenge you.... Please go out and party for me too! If you have a sweet drink you can blame me and say it was mine, so an odd one will be OK! 😜
I too have Rhuemtoid arthritis (17 years) and last June I started getting painful stomachs, diarrhoea and generally unwell. I was diagnosed with IBS so many years ago. I have been on the urgent list since February to see a Gastroenterologist and a Colonoscopy. So far no appointments. However my GP arranged a CT scan which showed chronic pancreatitis, Diverticulor disease. A stool test also showed severe enzyme deficiency in the pancreas. What a shock all that was. I was prescribed Creon but I had an allergic reaction because it contains Pork and I'm allergic to that! Dr waiting for more hospital advice. What is interesting I've been told to stop my weekly RA jabs of Etanacept as coincidentally the stomach pains started 3 months after 1st jab. Been off jabs for 5 weeks and stomach pains all gone. Downside is my RA isn't under control and I'm in pain with fatigue. I have switched to a low fat diet which is easy. Definitely no alcohol easy as I rarely drank anyway and wait in hope of the gastro appointments . Good news a recent blood test ruled out another autoimmune disease. Good luck to us both
hello and thank you for your reply. Having lived with Stills Disease for over 40 years I had researched possible links to IBS or IBD. I was shocked how many times RA come up as a possible cause/effect on many other conditions although I knew from the very start organ involvement is likely with Stills Disease. Having managed so well with Stills since 1979 I tend to attribute all ills to it anyway but my recent gastric (?) episode is still under investigation. Tests ranging from pancreatic cancer to ovarian…… but I suspect gall bladder involvement. Time will tell and in the meantime I’m trying to avoid bad fats, processed stuff and of course have stopped the evil drink. It’s the longest time in my adult life apart from pregnancy that I’ve been dry and I’m not missing it. I miss cheese though!
Thanks again Jackie and I hope you have better days.
gosh, that sounds grim Jackie, May I ask the cause of removal? Clearly you have managed without it but presumably with medical intervention to replace its function ? I have tried cottage cheese since I became unwell with whatever it turns out to be and that was ok. Low fat cheese I bought is far too salty and I’ve read salt, sugar and fats to be avoided plus my cholesterol is high. It’s quite difficult eating out!
Huge gall stones. No medical intervention as you can live without a gall bladder. It runs in the family. Flavoured cottage I do like. I have slivers of cheese and my cholesterol is fine
I've noticed different foods are tolerated (or not) by different people. I found it helpful to keep a food/symptom journal to help figure out what foods I tolerate. It's important to find what works for you.
a good idea , I did start one but after two weeks I noticed it’s the same all the time as my diet was already very limited being fussy, veggie and on a budget 😂 two weeks covered my entire menu range with ease. Thanks fi4 your reply
I don't use it just for food. I also keep track of other triggers and specific times and dates of pain and/or nausea or any other symptoms. It provides detailed information that I can share with my doctors to better treat my chronic pancreatitis.
I never thought of that but will do it thank you, not that I’ve even seen a GP or am likely to be able to show it to one, he said pancreatic disease or cancer of the pancreas, liver or ovaries based on two phone calls and a blood test! Gastroscopy and colonoscopy due, he didn’t offer any dietary advice even though I’ve lost 16lbs in 6 weeks. He dismissed my existing chronic AI condition of 40+ years even though it could have a significant bearing and be the cause of AIP...... seems he’s determined to check for cancers first, I suppose I should be grateful but I would follow the more obvious link first. Anyway I’m getting checked out and my weight seems to have stabilised which was his main concern.
PS: May I ask if Signingfun is anything to do with sign language?)
Yes, Signingfun has everything to do with sign language. I was an educational sign language interpreter for years, before my pancreatitis diagnosis. The school system I worked for had me stay home on short term disability for one year, saying if I was able to return to work full time, I was welcome back... I could not return to work full time, Between my current health issues with CP and insulin dependent diabetes and doctors appointments, I was unable to return to work full time. Now I'm officially disabled.
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