looking for information

Posted , 5 users are following.

I am under 30 and had my diagnosis in October 2014. I was given no information at all. I have had several flares in the last year and hospitalised with one on new years day even for blood loss. My flares correlate with stress each time so far. A colleague of mine gave me a book on DD and I read it in less than a day....that helped with diet guide (being a vegetarian my consultant didn't see the point). But this book suggests that we shouldn't have so many flares in a year.

And should I seriously think about elective surgery?

Regards all

P.S. I will be slow to reply to any feedback as I work long hours 6 days a week

0 likes, 10 replies

10 Replies

  • Posted

    So sorry to hear you are having so many flares and so young to have this awful disease.  I was diagnosed 12 years ago and all I can say is, everyone is different in what they can /can't eat, it is all trial and error I'm afraid, but the best thing I ever did was to switch to the Mayo Clinic low residue diet - it is always recommended when you have a flare to go on low residue but to then re introduce fibre - well I cannot tolerate fibre in any form, it causes wind/gas which inflames the diverticula so I am on constant low residue and it really suits me. I generally only have one or two flares a year and my doctor lets me keep my antibiotics at home so I can take them if I know a flare is coming - that is in itself good as it's so stressful wondering if  doctors appointment should be made or not.  Stress does play a large part of this disease but if you have confidence your diet suits you and you know what to avoid (which does take time) then that all helps. I never eat any meat tho I am not a vegetarian! When I was first diagnosed there wasn't much advice except never to eat beef, pork or lamb as they are fibrous, and I now don't eat chicken either as that seems to suit best. I cant eat any root vegetables, or rice but I can eat salad, tomatoes, white bread (thin), white pasta, cheese, pizza. Of course I miss chips and crisps, and spicy food but I know that the after effects would be bad so that keeps me on the straight and narrow!  I am thankful it is not Crohn's disease or cancer (well hopefully - I am having a CT colonoscopy Tuesday as have had bleeding after every BM which has never happened  before so I am rather anxious to say the least)! In the UK they don't offer you the resection operation generally though I know in the States it is common if you have several flares.  I would say if you can eliminate anything food wise which doesn't suit you (make a food diary) and try the low residue diet then your stress levels would hopefully reduce if you have less flares. I wish you the very best, no one understands this disease unless they have it! so friends/family aren't always that supportive (though thankfully mine are). Eating out can be difficult, I always have to check the menu anywhere we go but luckily Italian restaurants are usually safe! Take care, chin up and good luck.

     

    • Posted

      Thanks . I'll ask about talking to a dietitian and start a food diary. My partner has ulcerative colitis so the low residue diet is something I should know more about for him too
  • Posted

    I expect you have read some of my replies to folk on here.  I have had Diverticular Disease since 2006.  There are a few rules to follow - NEVER have seeds, nuts, pips or skins (not even dried fruit as the seeds and pips are still there; only smaller and dried) as these bits of nut; seed and pip can lodge in the DD pouches/pockets.....and the first you know is when they have festered away for several days and suddenly you get hit with the pain you have just had; yes - you think you are dying......and left untreated; you likely would.  I am not scaremongering; but his is a serious condition we have; and we need to make life changes to reduce the bouts of infection. Also avoid veg and fruit skins as these can get stuck; that means sweetcorn and peas and pulses generally are a no; no.  Find your own way with the "windy" veg like cabbage; broccoli; leeks and onions - I am fine with them; some are not.  Likewise garlic and spices - I cannot tolerate them; others eat them and are fine.  These windy veg and spices do not cause infections; but our guts react to them quickly with pain that is a response and reaction; which can be as painful as an infection.  The other thing to remember is NEVER to get constipated.  Take something like Fybogel to keep things in that department regular.  Straining a gut that has weak points; can created new pockets/pouches (and we do not want any more of them than we already have!!!) Even following all the "rules" on diet; I was ill more than I was well from Nov 14 til July 15 - but then from advice on here; I began taking high dose acidophilis from the UK Holland and Barrett health stores (20 billion) which are healthy bacteria for the gut.  I have been well since July 2015.  It is a JOY not to be in pain.  I wish you well with all the changes you make...I can have red meat, pasta; pizza with no problems. Some say red meat gives them pain.  While your gut is inflamed; keep your diet light, bland and LOW fibre - as you get better and the gut pain goes; increase your fibre intake. My sister is a vegetarian as I was for several years - and that diet tends to be fully of seeds; nuts; pips; skins; wholegrains...(I miss them SO much)...but being without pain is better than any food sensation in the world.  Yes, you are young to start all this; as I was said my dietician - but all se can do is try to follow the guidelines of other sufferers.  I have found I cannot eat sprouts; not the cause of infections like lodges seeds, nuts, pips etc - but gut pain within hours as with even a tiny amount of garlic.  Yet I am fine with onions and with leeks and broccolli (all windy veg).  Good luck.

     

  • Posted

    Unlike your other reply; I do sometimes eat meat and have been fine with all forms of red and white meat and fish.  I can also eat crisps and potatoes and broccolli and cauliflower. I have lots of root veg like carrots; parsnips and swede too. Sometimes mashed; sometimes not.  I also eat fruits....but never pips and skins as in tomatoes; kiwi etc...don't even eat banana and cucumber as they have pips/seeds. But for me the life saver has been the 20 billion Acidophilis from Holland and Barrett.
  • Posted

    I too started taking 20 Billion acidophilus from Holland and Barritt after reading about it on this site. It had been a life changer. I also take charcoal tablets for wind.
  • Posted

    Thanks folks, all going in my notes
  • Posted

    Thinking, I may have been born with a tendency to Dd. Also, the book says that strain also occurs when there isn't enough in the intestine to squeeze normally....I went through a period of DV and the person I was living with wouldn't let me eat more than a small bowl of food each day. I was misdiagnosed with coeliac disease which meant that I was barraged with gluten free food which is highly constipating, and then I found that I am profoundly allergic to quorn which makes me vomit and void until I bleed, ha then I'm not allowed to eat for two days! Ah.... the possible causes of having DD at my age.

  • Posted

    Good you're getting lots of advice and help on here. I can eat tomatoes or cucumber even tho they have seeds - like I said, every single person who has this is able to eat different things, that's why it's hard to be definitive about what to eat! Can't take Fibogel as of course it's fibre!!! (It made me so I'll ) But I do take 10ml of Lactulose every morning and night to keep everything running smoothly through, it's safe to take forever as it doesn't stay in the body and is not a laxative, it's a stool softener, it's been my saviour! You will find your own path with this disease, hope it's soon! 
    • Posted

      As a carer I hand out lactolose regularly (no pun). I have been experimenting with senna as a softener but think this is another thing to bring up at my gp review next Thursday late afternoon. Thursdays are my day off and I want to use all of your tips to be organised by then.. .also have two job interviews to try to get a job that doesn't ride me like a donkey
  • Posted

    Well being a Carer must be very stressful for you so good luck with the interviews.  Yes, good to note down anything you feel may be of help with dealing with this disease - I usually get outside the doctor's and remember something I meant to say!!!   they do give lactulose in hospital too, I personally think it's magic!!!!!   

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.