NICE clinical guideline

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The National Institute for Health and Care Excellence in the UK is now in the process of developing a clinical guideline on diverticular disease. It is intended to assist patients and clinicians when making decisions about treatment, diet and other methods of alleviating symptoms. I am one of the two lay members of the guideline committee and would be interested in the views of patients on how they have managed their own symptoms and what advice they would give to other sufferers. This seems to be a useful forum and I'll be reading it regularly.

More detail can be seen at: https://www.nice.org.uk/guidance/gid-ng10064/documents/final-scope

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  • Posted

    Hi Jon, I've only recently been diagnosed with severe DD, but neither the GP nor the hospital have given me any guidance on what and what not to eat. I've also taken note from this forum that I should contact my GP for some stand-by emergency antibiotics in case of a flare up. Sorry, but my experience is that the only guidance and information I've found is from this forum! I have been diagnosed and now been left to get on with it without any information from any Doctor about managing it, what foods to eat, do I need any medication etc etc.. That's pretty poor don't you think? Sue

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    • Posted

      Yes, it's appalling how little the GPs seem to offer to DD sufferers. The guidance from NICE is due to be finished in October 2019 so it will be a bit of a wait but I hope it will be worth it in the end.

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    • Posted

      Go to Divi Diners, lots of really useful info on there. google it if you can't find it on here .Well worth a visit  I know ,,,because I started it,, and i'm into my fifth year ...

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  • Posted

    I take fybergel mabevarine and a probiotic every morning. I don't eat anything with skins on I also don't eat tomatoes red meat any fruit with seeds no nuts   I don't drink fizzy drinks. I keep a food diary so I can see what upsets me   I find my DRS don't seam to know much about it. I get most of my information from this forum. Everyone is different what upsets one person is ok for another 

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  • Posted

    Welcome.

    I hope that together we can find a common thread concerning the management of DD. This thread was quite helpful to me. My first attack, and it was severe, was Dec 13, 2017. As of today, I am doing much better. The fear of the pain returning is always in my head though. Now that I can eat, I keep it soft, fiberful, nutritious and full of probiotics and prebiotics (raw goats milk). Feeling so much better. Btw, raw goats milk tastes EXACTLY like whole cows milk. Delicious. I will continue to watch this forum.

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  • Posted

    I was diagnosed with DD April 2016, after having symptoms for possibly two years. I have found the forum very useful, for advice and tips from others that are also suffering from this awful disease. Not enough information is out there as not everyone suffers the same. I manage it as best I can, trying different things and finding triggers which isn't always easy. Would be very interested to see what the NICE guidelines will do to benefit those like myself how to best manage this disease. Good to see that it has been recognised.

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  • Posted

    Hi Jon. I amsuffering at moment with flare up. 4 weeks now. Had 1 week antibantibiotics.have not eaten for 3 days now. I'm afraid to.not never constipated but loose.with bloody mucus. Getting me down I feel weak and should eat I don't know ??? Any help out there

    Do see my GP today.

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    • Posted

      Gloria, I know how you feel.  I felt the same way after my worst attack and ended up not eating solids for 4 weeks and lost 45 lbs.  Not good.  But, I will tell you that you will be able to eat things.  Start very slowly.  For me, having 3 soda crackers with home made chicken broth (no spices, no pepper, just some salt) for a meal 3 times a day, started me being able to eat again.   Jello is my best friend.   As I gain confidence that I am not going to have that debilitating pain (or any, for that matter), I start to add baby food: strained green beans... then strained carrots...then strained sweet potatoes and gradually I add baby food chicken.  I never have any kind of corn or corn products.  For me, rice is not good either. I was told that it is the tiny kernels inside the corn and rice that act like seem to act like seeds in the bowel.  

      I avoid all seeds and nuts.

      If I take probiotics and have a psyllium based bowel regulator (I choose the orange flavoured kind), my bowels run smoothly.

      If you start very slowly, hon, you will build up your confidence again. 

      I am so sorry to say that I have had repeat attacks but I have learned so much on this forum since I joined a few days ago and I identify with a lot of what different people have said.  I am also finding that I can avoid the pains now by paying attention to my body:  I know that feeling of an attack coming on and so I want to do anything to avoid it.  I know the feeling of fear. 

      I am writing down, in a diary, everything I have to avoid as I find out what they are.

      Gloria, I live most of my days without pain... enjoyably.  smile    The worst pain was a year and a half ago when I didn't know how to manage this disease.  So, please know that you will be able to enjoy your life again, for sure!  Hugs you.

      Things I avoid:

      corn

      rice

      fresh veggies (I used to eat huge salads all the time and now I cannot) so I am very very careful about how much I eat at a time :  rarely and about a quarter of a cup in one day

      seeds, nuts

      roughage in any form  (I use the psyllium based product as I find it gentler and it does the trick of settling down the diarrhea and keeps my stools soft).

      Things I have heard cause problems:

      dairy products

      fats (especially animal fats)

      over eating (keep meals small and more frequent)

      sugars

      carbonated drinks

      brussel sprouts

      You are in a position right now where you can add something very carefully in little bits at a time and see how you respond.  If you are like me you will know to respond to the twinges before they become debilitating pain.  Keep a food diary!

      Things I have heard help:

      mild exercise (I like walking and am going to start gentle yoga)

      6 glasses of water a day

      being attentive but not obsessive about how your body is feeling so you can nurture and care for yourself

      I am learning more by the day in this forum.

       

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  • Posted

    Fresh veggies are not my friend.  That is an important thing to know when you are telling people who have diverticulitis what to eat:  every person is different and needs to find out what they really can eat so that they can live their lives as normally as possible.  Products made with psyllium for the encouragement of regular bowel movements regulate my bowel movements so that after 12 yrs of very loose and unpredictable stools, I

    have normal bm's and may even be able to not wear protective "gear" when dressing now and then.

     

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  • Posted

    I also didn't know, until I came to this forum, that the first twinges of diverticulitis don't necessarily mean I am infected and need cipro and flagyl.   I understand that there is no infection without higher fever.  Going on a liquid diet with care to what one ingests is supposed to help clear up the process before infection sets in and I can avoid the horribly nasty side effects from cipro and metronidazole.

     

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    • Posted

      So true  Bonnie! The meds are very tough and when you feel a bout coming on I do the same thing. Also lots of sleep. 
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  • Posted

    Hi Jon

    I have had two attack’s of DD in the last 5 years. I have found by trial and error what I can and cannot  eat. As I have mentioned in this group is that boiled beets are a miracle for my digestion. Whenever I feel the pressure in my lower left bowel I boil up some beets and it goes away! Amazing! I also try to have light broths with lots of veggies in it. I avoid heavy food like red meat and sugar, on occasion, I do indulge but I have to then go back to lighter meals. A friend of mine who also suffers from DD has switched to a glutton free and dairy free diet and she said she feels great! I also think that dehydration can be a culprit since I so drink alcohol and I MUST stay hydrated. Hope this helps. 

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  • Posted

    I was diagnosed over 16 years ago, at 51, but with hindsight had it much longer.  My experience from then until now is that doctors seem to know very little about the disease apart from basic facts, and simply don't have the time to talk to patients.  A "one size fits all" approach is taken, but 15 months on this Forum has shown that everyone is different, and needs to work out for themselves what suits them best.

    Recent research seems to indicate that a low fibre diet may not be the only reason this disease develops, and it is not necessarily the fault of the sufferer for years of bad eating.  Many people, including myself, have always eaten a diet high in fresh fruit and vegetables, and low in saturated fat and processed food, yet still develop it.  Published reports have suggested that there may be a genetic component as well.  Several members of my family have had this disease, and we all suffered from hypertension as well, plus the older members did not have access then to today's diet.  Transit times through the bowel vary enormously, and normal levels are quoted at "3 times a day to once every 3 days".  So I am guessing everyone's bowel works at differing rates and wonder if this too might be significant.

    When I was initially diagnosed I was prescribed a daily psyllium based stool softened, Fybogel, and it works well for me.  My movements have never been regular, but this does bulk, soften and regulate me.  However I do go 3 - 6 times a day, it does seem to irritate my bladder, and I have infections from time to time.  I was also lucky to speak to a nurse, who suggested I cut out gluten.  This too worked for me, as it reduced bloating.  Now if I have gluten, the following day I get the niggling pain associated with Diverticulosis.  From this start I kept a daily food diary, and was able to work out that for me full fat, and ice cream in particular, triggered symptoms.  Just recently I tried a different GF bread, which contained more seeds than before, and this too triggered niggles.  Other people have reported all sorts of different trigger foods, from popcorn, to red meat, dairy, skins, nuts, kale.  The one thing we have in common is we all have different trigger foods.  So the current doctor advice of "eat what you like" is, I feel, misleading.  I would add "but identify any trigger foods first, and eliminate them from your diet".  Stress also plays a part in triggering symptoms:  family problems, work problems, other health problems, or sometimes just subconscious stress.  I have only recently realised that my symptoms flare up before I am due to go away.

    Sufferers are told "eat more fibre" but not what sort.  My experience has shown soluble fibre is best, in the form of blended soups, vegetable puree, and well cooked, small meals, thoroughly chewed.  I limit myself to 1 slice of bread or 30gm proper porridge daily.  Many people have problems with skins on fruit, vegetables, potatoes, and remove them and the seeds before eating.  Some people cannot eat raw vegetables without triggering symptoms.  I am fortunate, as I can eat salad, and it helps keep me regular.

    When I feel I might have an attack coming on, I go on a 48 hour fluid only diet, with herbal tea, broths, jelly, meal replacement drinks, plain yogurt.  That gives the bowels a rest and usually settles things down.  Then I slowly introduce low residue food back into my diet until I can get back to normal.  This includes mashed potato, steamed fish, crustless white bread, grilled chicken.  If my tummy becomes rigid, very tender, or I develop swamping cramps, or a temperature, then I call the GP.  So this is how I managed my disease for many years.  But sometimes it is very difficult to differentiate between a developing infection, and the symptoms of inflammation, and I err on the side of caution.  I am more experienced now, but for new sufferers, telling the difference is a real problem.  My GP, with justification, is becoming concerned with the development of antibiotic resistance and more reluctant to prescribe.

    In 2016 I had a nasty flare up, followed by 2 more, and it took several courses of antibiotics and 10 months, before settling down.  Following advice from members on this Forum, I introduced pure Aloe Vera juice and a probiotic drink into my daily regime.  What the medical profession does not tell you is how long it can take to recover from these flare ups, and just how bad you can feel.  It took 4 weeks to recover from the first flare in 2001, and it is now taking me considerably longer.  4 - 6 weeks seems to be about the norm but I have heard of others taking up to a year. 

    But the other things you are not told about are the lingering symptoms of pain, diarrhoea, bloating, constipation, bleeding, mucus, depression, weight loss and fear.  Fear of eating anything in case the pain starts up.  Fear of going out in case you need a toilet or soil yourself.  Fear that you are never going to feel better.  Fear when you are away from home, possibly abroad, without medication, and that you will become ill and have to communicate your problem and medication needs.  Lack of understanding by family and friends who can't understand why you can't eat exactly what you like, or why you still feel ill. 

    The advice I give is to ask family and friends if you can serve yourself when eating away from home, saying you don't want to start feeling unwell and spoil the day for others.  I don't worry any more about causing offense by not clearing my plate.  Or researching the eating place first so you have an idea of what you can eat.  Or go for the self service buffet option.  Regarding the fear of eating, I suggest to people they try a very small taster of a particular food, then see how it goes over the next 48 hours.  

    This is a long rambling post, but I hope I've included some useful information for you.  I really hope the new guidelines will be beneficial, and are long overdue.

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    • Posted

      Thanks, Felinia. All very helpful information. For my part, I've always eaten lots of dietary fibre, porridge, muesli etc, and I was therefore shocked when I learned that I had severe diverticulitis at the age of 60.  As I understand it, diverticular disease is on the increase and is affecting increasingly younger people - that is, the under 50s. Nobody seems to know why. To me, diet seems likely to be the culprit but maybe there are other factors and it will be interesting to see whether anyone has found a correlation with smoking, obesity and alcohol.

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    • Posted

      This post of yours is gold... pure gold... to anyone who wants to know about diverticulitis, felinia.  Thank you for posting this.
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