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Diverticulitis and IBS experiences?

janice_in_wonderlandjanice_in_wonderland Posts: 259Member Pioneering
edited August 28 in Disabled people
Does anyone suffer from Diverticulitis and IBS as well as other things? At last I am back home, discharged from hospital, which was amazing, (apart from a patient talking on her mobile and her and her visitors thinking it’s a night out) but now I feel lost re what to eat. I will eventually get A&G but this is now and wondering if anyone else has experienced food anxiety who can help, thank you in advance 

Replies

  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    edited August 23
    Hello @janice_in_wonderland   Thank you for sharing. Sorry to hear this.

    I know it might be worth talking to your local wellbeing unit.  Under community health. Council run service .

    They help and advise members of our community with certain issues and problems related to wellbeing and health.

    As some one who had been ill with one of my health conditions. Contacted them through my support worker.

    I have got food knowledge through them.  As also got a lot of general advice.

    Please may I add I would speak to your GP as well they should be helping you.  Refer you to a Nutritionist.

    I would look on line as well. 

    https://www.theibsnetwork.org.

    Helpline 0114 272 3253

    9am to 4.30pm.Monday to Friday.

    Also this link.

    Looking on line called the Fodmap or food map.  Has a list of foods and ingredients you can eat.  The IBS people should tell you.

    I hope that helps you.  Please get in touch if I can help with anything further. 

    Please take care.  Wishing you well for a speedy recovery.

    @thespiceman
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @janice_in_wonderland   Please can I add got the UK support for Diverticular Disease.

    Found this on line.

    https://www.gutscharity.org.uk.

    Helpline 020 7486 0341

    Lots on the website.  Information and related links hope that helps.

    Please take care.


    @thespiceman


  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Hi @janice_in_wonderland, I'm glad you are back home!

    I hope people will be able to share their experiences with you soon. :)

    How are you doing today?
    Chloe
    Online Community Officer
  • OverlyAnxiousOverlyAnxious Posts: 225Member Pioneering
    Hi Janice,

    I'm surprised you weren't given any Low FODMAP info before leaving the hospital.  That's really all the dieticians seem to advise as a starting point for IBS at the moment.  The basis of that is avoidance of gluten (wheat, rye, barley, etc), fructose/fructans (many fruit & veg, garlic & onions, honey, etc), lactose (milk, yogurt, etc) and sweetners like sorbitol.  

    If you use a smartphone, there is a very good app created by Monash University for the low FODMAP diet. It cost's £8 though and I don't have that spare at the moment so can't give any personal experience of it.  There are also various websites and Facebook groups that can be helpful.

    I'm finding breakfast and lunch fairly easy to find but am really struggling to find suitable low FODMAP dinners myself.  I am on a very tight budget and have other health conditions that make food difficult as well though so it might be easier for yourself.

    If you're looking for immediate foods, oat porridge, ready salted crisps and rice cakes should all be good, as well as citrus fruits, strawberries, raspberries, carrots and broccoli.  Meat is fine as long as it's plain and not coated in anything.  And potatoes are fine as well.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @OverlyAnxious   How are you?  Thank you for your post and sharing.

    As I try to give much as I can on the forum .  With my recipes. I do have the time to help those with diet and health concerns.

    If there is anything I can suggest please ask me.  

    Happy to create recipes or ideas for your own self.

    If you tell me what you can have in your diet.

    I would add I am not a nutritionist but have a lot of food related qualifications.

    Understanding health level 2.  Some others.

    I would if I can suggest have a look on line. The Food Doctor he is called Doctor Ian Marber has a lot of ideas and food suggestions.

    I hope that helps you.

    Please take care.

    @thespiceman

     .
  • OverlyAnxiousOverlyAnxious Posts: 225Member Pioneering
    Good evening @thespiceman

    You did reply to my own thread on the subject a few weeks ago. :)   I shouldn't take this thread off-topic so if you'd rather reply on my other thread that's totally fine, I should have updated it since.  I did eventually see a dietician but it was no help, I struggled with it being F2F and they just said about low FODMAP (which I was already trying) but seemed far more worried about my lack of weight than the pain & inconvenience of daily IBS symptoms, they went on to recommended many high fodmap items to boost my weight!  Very confusing.  Anyway, I did leave a food diary with them and I'm sure they mentioned something about food diary analysis, I haven't had this back yet but I think it will highlight the areas I may be lacking so I can target those specifically.

    I really don't want to seem at all ungrateful but recipes aren't of much use to me sadly.  I suffer with severe OCD which makes any sort of food preparation extremely difficult (if you check my recent posts I have detailed an example this in another thread).  I currently just have very simple ready prepared items for dinner such as breaded fish & chicken, cooked honey roast ham, and the occasional quiche Lorraine or Hawaiian pizza...all of which are high FODMAP!  What I really need is to find equivalent pre-prepped foods to these that are low FODMAP but it seems to be impossible at the moment...if the Low FODMAP diet continues to grow I expect there will be more 'safe' items in supermarkets in future.  

    I thought I'd had a breakthrough this week as I found some gluten free breaded chicken steaks in Sainsburys but on closer inspection have found they also contain some high FODMAP ingredients, as do Bird's Eye's gluten free breaded products as well.  It is quite frustrating as a lot of the Free-From items are very close to being low FODMAP, but just not quite there!  I'm tempted to send a few emails to some of these larger companies asking if they'd be interested in tweaking some of their FF products to make them Low FODMAP.  I don't know if the market is large enough to make it worthwhile for them though.

    As well as the OCD making things physically difficult, I am also on a super low budget at the moment so even the Free From items that are safe (mostly bread/rolls type stuff) cost more than I can reasonably afford.  I am hoping to do the FODMAP elimination during September, and be on re-introduction by the end of the month as I simply won't be able to afford it from October onwards when I'll have the heating bill to pay. (I know it sounds daft worrying about heating bills when we're in a heatwave this weekend lol!).  I am currently waiting for the PIP mandatory reconsideration decision but chances are I still won't be awarded anything and will have to wait until at least next summer for the tribunal at the current rates....and of course there's no gaurantee that I'll get awarded anything there either.

    To summarise, I am struggling quite a bit at the moment, but the OCD won't change any time soon, the finances are in the hands of the DWP so all I can do is wait (but have had some excellent advise on here about PIP!), and I'm trying to pick up as much info on low FODMAP items as I can from various websites and Facebook groups. :)
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @OverlyAnxious   Good morning thank you for sharing with me.

    I apologise if I suggested before. I did not know this.  As a community champion on here daily and meet so many members.

    Also have a memory problem..  .So cannot  remember every thing.

    I just wanted to add there are ways and means to do food preparation and I know with OCD there are never any easy solutions.

    I lived with a parent who had OCD I believe and my self have inherited a lot of her traits.

    I am and have been volunteering many times in kitchens and it is there you learn to be first safety aware but hygiene aware.

    I every one is different I just do not like to see members of our community suffering.

    I use a lot of variety of equipment and kitchen gadgets. Have and do always be safe and clean and sterile in the kitchen.

    Understand having problems and issues with people face to face. I know this myself.  Struggling to get out with anxiety.

    I do know there are answers but it is finding what is suitable for you.  Any mental health issues are distressing and can control take over your life.

    I just am a caring, concerned member of our community. Have time and lots of patience and tolerance.

    Used to visit former friends like yourself.  Who have similar issues the problems became their support.

    Unfortunately as most aspects of my life they moved away.

    Teaching and educating those with making nutritional simple food was my aim.

    Tried to get involved in my own local councils wellbeing service as a volunteer but again refused my services and help, plus my knowledge.

    Use this forum to help and guide others if I can.  With suggestions and ideas.

    I am aware of the Food map and all of that.

    I would seriously look at Doctor Ian Marber the Food Doctor maybe find a way to contact him by Email.

    He has a lot of nutritional knowledge has himself coeliac disease and has gluten intolerance.

    Dieticians are not the answer. Nutritionists maybe the answer.  There is a difference.

    I will try to find any of your posts If I can.

    Most supermarkets. Their websites are trying to accommodate those with various diet issues and problems plus mental health issues such as OCD.

    Find might be worth contacting any of the supermarkets seeing what they can offer.

    Know I use TESCO are very approachable and have and want any customer to be happy.

    On their website.   Have lots of diet advice and nutritional information.

    Please if I can help with anything further happy to help and be supportive.

    Please take care.

    @thespiceman

     





  • newbornnewborn Posts: 323Member Pioneering
    What is the A&G?

    Rankins do potato farls which go in the toaster. Ten percent wheat, but only i think one percent  are actually allergic, about another third  of wheat dodgers can manage small amounts, of the right type,   and it's a good taste prizewinner.

    Waitrose do microgreens,  looking like mustard and cress, but can be any greens, and it's a way to get greens without cooking and without your digestive system protesting.
    They also have ready sliced organic turkey or chicken packs, so the three together make the equivalent of a prepacked fodmap meal. 
    They are the only one doing spring water in glass bottles,  if you want to give your body everything clean.

    Any supermarket does non dairy milk and yoghurt, some organic, some longlife.
     A few fake cheeses are ok, but some revolting, so it's trial and error.
    Everyone does organic eggs, and for the small amount extra they cost, it is better to feel safe the hens are treated  well and you aren't eating antibiotics,  growth promoters, hormones,   or other nasties. 


    Any one does packs of sandwich toppers, two kinds. Again, sprouts, but avoid the one with lentils
    Most supermarkets have some types of those wrap things, but made of sweetpotato and not organic.
    Most have ready made odd stuff like mashed potatoes and swede, or carrots and turnips, but never organic.

    If you find you can do  a little dairy, maybe limited amounts, Milk and More deliver organic in glass bottles,  as well as other stuff.

    Fruit is good, not needing cooking and often being organic, but the FODMAPs list will have surprising items on the good or bad side.
    Above all, for a lot of folk, regard Garlic, Honey, Apple and Pear, as identical to Strychnine! The nuisance is, you need a magnifying glass to spot them on the packs.

    Mushrooms are often culprits. Any alcohol is out,  of course. The onion family.   It is hard to find anything without  sweeteners or sugars. There is an organic porrage and organic rice cakes or puffed rice, and baby food the same, and it is possible to use fruit juice or substitute milk.

    Lidle sold a cheap milk frother. Almond can foam spectacularly.  Green and black do organic cocoa,   so that avoids the sweetening problem. 
     
    You are right, the supermarkets will respond, once they cotton on.  Vegans turned the food industry  upside  down when they got recognised.   There needs to be coordination for those avoiding plastic, and for those on limited diets, so the commercial purchasers recognise they are way behind their potential customers. 

    Oh, this thread could be a handy hints and tips site, if only there was a sticky thread system?.
     
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    hI @janice_in_wonderland 
    I have IBD and so I totally get the anxiety around food. I have an ileostomy and certain foods cause massive pain and blockages. The low FODMAP diet is something to look into for sure.

    The NHS say:
    "The Low FODMAP diet is extremely effective in improving the symptoms in approximately 70% of patients with IBS.  However it is a complex diet to tackle without appropriate support and guidance.  Careful implementation of a low FODMAP diet is needed to ensure that the diet is effective and nutritionally adequate.

    Useful Resources The low FODMAP diet should be followed with the support a FODMAP trained dietitian to help prevent a nutritionally deficient diet. However, if you would like further information about the diet before seeing a dietitian, some reliable resources include:
     
    Smartphone App - The ‘Food Maestro FODMAP’ smartphone app (annual cost £3.99).
     
    Youtube Videos  
    The FODMAP Grand Tour Down Under: IBS relief, video by Monash University -  

    King’s College London YouTube videos - Starting the low FODMAP diet -  

    Stage 1 Restriction –  

    Stage 2 Reintroduction –  

    Stage 3 Personalisation –
     
    Twitter Accounts App - @ MonashFODMAP   and   @foodmaestroUK
     
    Facebook Accounts App - MONASHFODMAP   and   FoodMaestro  "
    Scope
    Senior online community officer
  • newbornnewborn Posts: 323Member Pioneering
    All very well for n.h.s to say it should be carefully implemented  with support and guidance.   It's next to impossible  to find  a gp or dietician  who heard of FODMAPs (even within the kings hospital catchment).  Its completely  impossible to  get any follow up to ensure the balance is right, because there is none.   The system is take a leaflet, go away, case closed.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @newborn   Thanks for sharing. Is there anything I can help and support you with?

    Regarding your diet or nutrition.

    I know am not a qualified Nutritionist just a community member willing to be aiding, helping, advising if I can.

    I know that is always worth looking at your wellbeing services in local county councils.  

    Something to consider.

    I hope can be of help.

    Take care.

    @thespiceman
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    I understand where you are coming from @newborn - it took months for me to get an appointment with a dietician and when I did, they didn't know what my condition was or understand what surgery Id had, they gave me a leaflet and sent me on my way.
    Scope
    Senior online community officer
  • newbornnewborn Posts: 323Member Pioneering
    Spiceman Thanks for reply.  And Sam Scope.  I think Wellbeing amounts to a leaflet telling people to go to a g.p? And the rest of the circle is, as Sam and I have both discovered,  a laborious way to eventually end up with another leaflet. (!)

    Wouldn't it be fun, if  people  with grumbling  guts (a lot of the population, and increasing, ) could get some consistent, fully informed, continuous  monitoring?   
     
    They can't.  Not by hook or crook, for love or money, through hell or high water.   The gastrologists are doing lots of operations,  now known to  be in many  cases avoidable  by  tailored, personalised,  supervised,  routinely monitored dietary changes  including FODMAPs.   

    The gps are using up appointments,  and getting  folk hooked on painkillers.  The dieticians are only trained to hand out advice leaflets suggesting fat people reduce their intake of cakes.  A tiny minority have taken extra training,  so they now know how to hand out FODMAPs  booklets, too.

    Oddly enough,  simple  diet changes can have surprising results.  One woman was irritated her son went vegan, but needing to cook for him  meant she thought a bit about food.  Somehow she took it into her head to experiment with cutting out dairy products herself,  even cheese which she adored. Almost instantly,   to everyone's astonishment,  her menopausal  night sweats vanished.  That isn't  supposed to  happen,  but  she's delighted it did.
  • OverlyAnxiousOverlyAnxious Posts: 225Member Pioneering
    newborn said:
    The dieticians are only trained to hand out advice leaflets suggesting fat people reduce their intake of cakes.  A tiny minority have taken extra training,  so they now know how to hand out FODMAPs  booklets, too.
    As the complete opposite of a fat person, I was told to start eating cakes, biscuits and full fat milk by the dietician...shortly after being handed the low FODMAP leaflet. :D  

    I already knew about Low FODMAP before visiting the dietician anyway, didn't find it at all helpful or specific, we have so much generic info on the internet already.  I actually don't believe that FODMAPs will change my digestive issues anyway, it seems to be far more controlled by anxiety and physical exertion than food for myself, I've been keeping a food diary for over 2 months now and can't see any patterns in it.  I also know from experience that there are low FODMAP items that cause me problems personally.  The majority of the allowed fruit is low in fructose because it's high in acid (mainly citrus) which causes me upper GI/reflux.  Lettuce, cucumber and other salad causes me a lot of bloating and gut pain.  

    I've also recently read that completely avoiding lactose causes lactose intolerance in people that previously didn't have it!  And that although we're meant to avoid lactose during elimination, hard cheese, butter and yogurt are fine as long you stick to just one portion... 

    A lot of FODMAP friendly items, even those certified by Monash, also often contain high FODMAP ingredients that I would have avoided had it not been for the certification on the packet...  So does that mean ~1% of an ingredient is safe in other products, who knows!?

    In all honesty, trying to go low FODMAP has so far just caused me a lot more anxiety related IBS! :|  Have you found anything that works for you yet out of interest?
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    edited August 29
    Hello @newborn   Thank you for your comments.  I know your right in what you are saying.

    I agree with you.

    The problems I had coming off with addiction and the subsequent journey know there are available to help you.

    Maybe I had the right people and do know since could be a variant around the country.

    Was over ten years ago things and people have changed.  

    These services but there again some services do not. supposed to do as they should.

    As in a lot of health at the moment whether it is addiction places closing down or Mental health or many aspects of health that we all need to rely on.

    To give the communities the right, guidance and support advice.

    I feel for every one struggling with diet and nutrition.

    I do think it is a stimulating debate. Need to talk about these issues in school.

    Understand may not be to every one but understand the differences of looking at diet, wellbeing, nutrition and food issues and problems may need to be addressed.

    I know we have a obesity issues in this country the Government are just ignoring and those wishing to intervene and make people aware.

    Are being ignored or not being listened to.

    I know done a lot of research . Do my own diet and wellbeing.  Help and if I can pass anything on to the community.

    Always learning, education is an answer.

    One other point. I tried to get in wellbeing services as a volunteer turned me down.  In one area I lived in.  Advertised for volunteers so I applied .

    Never felt so humbled, embarrassed, humiliated and add if I can discriminated .

    All the lady did who interviewed me made a lot of not relevant remarks.

    Need to say the role I did not get.

    Which annoyed me but especially the lad who suggested it as he added . The quote. They need guys like you because no one is listening to them.

    Need I say more.

    Wish you well.

    Take care

    @thespiceman




  • newbornnewborn Posts: 323Member Pioneering
    Good grief, spiceman.   Of course  you were perfect for the task, and willingly  offering,  and unpaid,  what  were they thinking? Duh.... Would you agree with my own observation,  i.e.   Making things professionally run schemes turns them into  tidy systems of tick boxes and conveyor belts and career  paths leading to pensions, .....all with only a cursory  reference to the original perceived purpose.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    edited September 3
    Hello @newborn   Thank you for reply. Thank you for sharing.

    I do agree with you on what you are saying especially since finding my self ousted several times by schemes.

    I thought I was there as a volunteer to help people of society and the community I reside in.

    My thought and feelings have left me shocked .

    Another volunteer role I tried to get into was a food bank volunteer.

    That did not last long either.  Same as along the lines of we want help but not you to tell me how to cook.

    We have a serious problem in this country of first not listening and second not wanting to be learning.

    Attitudes towards reliant on it comes in a tin or packet or a box can I eat this .  

    With out every thinking could I make some tasty, nutritious food.  Save money use common sense when necessary .

    I had in my previous life met Italians, Spanish, Greeks all discuss food as the main debate talking point of the day .

    In fact most cultures and religions the food they eat is a talking point have you eaten many a reply when I used to visit these communities.

    When I get told off in my own communities my own people for sharing, caring.  I have a heart but is heavy with sadness.

    In one neighbourhood being told off by a neighbour your talking about food again.  You driving me mad. I do not want to hear .

    Same neighbours at my door. Eating my food she and her family can eat. 

    Words still resonate today.  

    Something seriously wrong here.

    I have compassion, patience, tolerance and time for every one .

    I am happy to help and be supportive to any one. Who needs it, you have to listen, start being educated about food, nutrition and everything around it.

    No one likes to be told what to do.  Even me but there again you do if it useful. Can be beneficial to your wellbeing, save you money.

    Listening is a skill we should be embracing learning should be mandatory in schools with diet, nutrition and well being.

    I watched with much heart last night Jamie making Meat free meals. I do understand be those who pour scorn can not believe the need to eat vegetables as a main course.

    It  is those we need to be learning and listening.

    I am trying my best . I only ask the simple plea of showing those who should be interested in looking after their own wellbeing. Nothing much to ask is it. It is becoming a problem and an issue in our society.

    There has to be changes and some one needs to do some thing.

    This is the responsibility of the Government needs to start but who is denying  anything is ever going on.  Until they start to wake up and face the stark reality.

    Wish you well.

    Take care.

    @thespiceman

     
  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Thank you for sharing this @thespiceman!
    Chloe
    Online Community Officer
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello @Chloe_Scope   Good morning my friend thanks very much.

    Take care.

    @thespiceman
  • newbornnewborn Posts: 323Member Pioneering
    What an interesting idea. It's  true, other countries have a different attitude to cooking. There  must be some way to make use of your low cost chef skills. In fact, there are increasing grassroots moves to ethical food use.  Im not up to date,  but is there a modern version of the old style communal eating, green, hippie groups near you?

    Sounds as though your natural home will be a perfect fit for you, the moment you find it/it finds you.  People  are also  keen  on staycation  holidays,  glamping or going on retreats or courses. Eco friendly simple  cheap meals are needed. Do you need to get a formal qualification?  Oh, and the police thing to show you seldom or never have the habit of murdering people  (or similar antisocial  hobbies!)  Even for volunteers,  they need to cover their  backs by saying everyone entering their kitchen has produced a bit of paper proving they know about washing their hands, and ideally know not to drop food on the floor, or warm it up repeatedly, or so on!  It should be obvious,  but their insurance will insist on proof. 
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