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New diagnosis of diverticular disease and confused

Posted , 8 users are following.

pauline15533
pauline15533

Hi everyone, I have been reading with interest all your comments on here, everyone sounds as frustrated as I feel. Having been in terrible pain for 3 weeks and having a large mass in my abdomen.

I was diagnosed last Friday after a number of tests. I was given an information sheet, told not to eat grains, nuts, seeds, milk and take fybogel and paracetamol. I am seeing the GP today as I need more info. Initially I thought great, now I know what it is, I got a diagnosis, that's little use without a treatment plan. The more I read, the more confused I get. I am off work for a few days as I feel really unwell and the pain is like nothing else. Is this what it's going to be like?

A couple of questions for you....are you more likely to get UTI's ?

Would you recommend liquids only at a time like this?

Thank you for any tips or advice you could give a new sufferer rolleyes

 

1 like, 18 replies

18 Replies

  • christine10242
    christine10242 pauline15533

    Posted

    hello Pauline,  I only discovered this site yesterday; so as I am not good with getting back to where I want to be on pages etc; I may not find you again!!

    I first got Diverticulitis in 2006 - a bad time; awful pain; two hospital admissions; very little advice, three bad bouts of D.  Off work for weeks and ill for months.  Antibiotics were Metronidozole (by drip when in hosp) and Cefalexin.  then it seemed to settle down and I would have maybe two or three bouts a year.  The GP gives me antibiotics to keep at home so I can take them as soon as bad pain hits....with this condition everyone seems to be different; and the bouts arrive in a differeng guise.  Sometimes you get twinges and twangs anyway but that is just the nature of the beast and does not mean it is a bout of infection.  Sometimes it comes with a temperature and aching limbs.  Other times it just arrives.  I had very little advice and my mother paid for me to see a Dietician.  No seeds; nuts, pips, skins (fruit skins or potatoes) and no pulses (those skins again).  I have had contradictory advice from doctors; but having seen a hospital consultant yesterday he cleared up some of the advice.  When you have pain and inflammation; follow a low fibre diet; white bread; white rice etc - or a liquid diet of clear broths when really bad.  But when the inflammation dies down and you feel normal (and you will feel normal again!)....then it should be a high fibre diet - and include Fybogel in case you are not having enough fibre.  The most important thing he said was to keep the gut working and moving debis through; not getting a back up/back log. Consitpation and straining is the LAST thing to let happen; as the weakened gut will just make more pouches as you push and strain.  He re-iterated the no seeds, nuts, pips, skins thing.  I have learned that my gut cannot cope with garlic; just a little and I am in pain within a few hours - not an infection but it hurts just as much for about 24 hours til the garlic has cleared through.  Some people say onions do the same thing; even a tiny piece.  Lucky I seem to be OK with onions.  I have heard people say they would rather have six child births than this condition; It is SO painful.  Never had kids myself so don't know; just now its BBBB grim.  Stress seems to make it worse as your body becomes less able to cope with bacterial infections etc if you under stress.  My partner died last year and I have been VERY ill for months; nine bouts since November - hence the specialist yesterday.  My e mail address is ______ if you want to e mail me directly in case I cannot find this formum thingy again.

    Trust me; I KNOW what you are suffering.  Kind regards, Christine

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service. Also there is an FAQ section linked at the foot of every page in the forums if you need help using them.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • pauline15533
      pauline15533 christine10242

      Posted

      Christine, thank you so much for your reply and your advice. I am sorry to hear you are suffering again at the moment, it sounds like you have been going through a lot. Your email address was deleted from your message. I hope you get to see my message to you wishing you well and sending you my appreciation.

      Thank you and take good care

    • christine10242
      christine10242 pauline15533

      Posted

      Yes it seems I was naughty to give you my e address and there is a way to send private messages but I don't know about that.  My thoughts are with you; it is a PIG of an illness to live with when it is bad (as mine has been of late)  --- although I am having a few good weeks; well - three so far; but you learn to appreciate the good times.  The Consultant told me what I already know; I am heading for surgery.  YET I know others who started off with bad bouts and now eat anything and eveything off the taboo list and have never so much as had another symptom.  It really does seem to be the luck of the draw; so I hope you have pulled a better ticket than I have!  If you find the secret private message bit; then let me know.
    • pauline15533
      pauline15533 christine10242

      Posted

      Hi again, you're absolutely right it is a PIG I've never experienced anything like this and I always considered myself to have a reasonably high pain threshold. But this is a real test of patience. I'm off work and don't feel good about that, but they are being great and telling me to rest. Suppose stressing about it isn't going to help anything?!?!.

      I Hope your good period continues...long may it last.

      I will look for private message thingy lol.

      All the very best

      P x

    • vivian89329
      vivian89329 pauline15533

      Posted

      Hi

      I am sorry you are dealing with this The pain is brutal and the ill like feeling worse.

      I have been on antibiotics 4 times this year.

      I lost a lot of weight. A good diet is essential. However you need to avoid a circle. Going from very loose bowels to constipation. I was off work for 5 weeks and just started back last week. However I just took a mild laxative to avoid back up and infection as the constipation is kicking in.Someone on the forum said that aloe vera juice is very good. I am buying some tomorrow. A hot water bottle helps me as well. Also herbal tea.

      Vivian

    • pauline15533
      pauline15533 vivian89329

      Posted

      Hi Vivian, thank you for your message. I saw my GP again this evening and because of diagnosis and my history of recurring UTI he is devising a care plan, including diet, that will be interesting.

      That is interesting about the aloe Vera juice, do you know anymore about it? Strength, dose etc., sorry questions questions!

      I really appreciate you sharing your tips and advice. biggrin

      Thank you

      P x

  • madge07350
    madge07350 pauline15533

    Posted

    If you have signs of a UTI you need to make sure you do not have a fistula (a connection between the bowel and bladder - more common in women who have had a hysterectomy). I find when I have a flare up I get bladder pain though no burning on urinating. This might be because my hysterectomy left me with a scarred bladder as it was stuck to my womb. My gastroenterologist said she had a really hard time doing my colonoscopy as I have very bad adhesions and it could be that as everything is stuck together flare ups effect other tissues. You must follow a liquid diet to rest the bowel till pain reduces. You should check your temperature regularly too. When back to normal keep a foid diary. I think the high fibre advice is overegged. The important thing is to avoid constipation to keep the bowels moving but a very high fibre diet often just results in larger stools which can be a problem. I have had to reduce the amount of wholemeal bread I eat. I find tough meat or anything gristly a problem.
    • pauline15533
      pauline15533 madge07350

      Posted

      Hi Madge, thank you for your message. I have not been able to digest bread properly for a long time and eating muesli and similar would be the same although i never knew why. I appreciate your comments and sharing your experience, so much better than doctors understanding and advice.

      As for the UTI'S I have been having them every few months since I was 6 mths old...im now over 50!!! They've never been able to find a definitive reason for this although a nurse friend tells me with my new diagnosis, I could have had a problem with infection spread for a while. Oh the joy! Thank you again Madge I'm off for a GP'S appointment now....wish me luck

    • madge07350
      madge07350 pauline15533

      Posted

      I mix my aloe vera juice with cranberry juice as cranberry is supposed to help prevent bladder infections. The aloe vera on it's own does not taste very nice.
    • pauline15533
      pauline15533 madge07350

      Posted

      Thank you so much, that's really helpful. I will organise getting some.
  • diva62
    diva62 pauline15533

    Posted

    Hi Pauline

    I had the surgery on June 12 and it is the worst! I experienced a lot of pain and then your bowels have to realign . I am still at home with pain

    • pauline15533
      pauline15533 diva62

      Posted

      Hi thank you replying, I wish you a good, speedy recovery.

      Kindest wishes

      P x

    • christine10242
      christine10242 diva62

      Posted

      Hello Diva62,  I have lived with diverticulitis since 2006 but since November 2014 it has got worse; nine bouts since mid Nov.  Consultant says I am facing elective surgery but must lose weight first and strenghthen abdominal muscles to get over it quicker; clearly no one wants surgery - yours sounds awful.  Was it an emergency or elective?  there is a way on this site to send private messages that include direct e addresses; but i do not know how to do it; and only found the site two days ago....I may never find you again!!  i wish you all the best in your recovery.  If it helps, my God Daughter is a nurse on the bowel unit at Wolverhampton Hosp and sees a lot of people have this surgery and says to me "Just have the surgery and get your life back!!"......so I guess that means there is life after surgery; and perhaps a better one that when you live with persisitent flare ups and pain.
  • Myredmolly
    Myredmolly pauline15533

    Posted

    Just saw my doctor yesterday. sterday. Diagnosed Friday. I am on day 6 of antibiotics Flagyl and Cipro. My diverticular abscess is 2.5 x 3.5 cm so it Is treatable with anti ibiotics . He told me that I could eat what ever I wanted. He said that the seeds and nuts thing is an old wives tale. I have read that too all over the Internet. This is a new diagnosis for me and I am frustrated because I travel on vacation in just 6 days. These meds make me nauseated and have TERRIBLE night sweats. What are you taking for the pain?
    • christine10242
      christine10242 Myredmolly

      Posted

      I found the Flagyl (also called metronidozole) made be sick in tablet form so was given liquid.  Tastes vile but was better.  After almost eight years I can now take the pills; but half them and take 6 times a day with food and then dont get sick.  Sounds like your temp is going up at night with the temperature that runs with infections; mine always rises in evenings when my body is tired and cant battle the infection as well.  Sounds like an abscess is very different to diverticulitis which is where the bowel looks like a stem of brussel sprouts with pouches/pockets (sprouts!) where the bits settle and fester til the infection hits with pain.  I have seen two dieticians and many doctors and only one (and places on the internet) say ignore stuff about seeds, pips, nuts, skins, pulses etc......so for my condition I am following the main advice and avoiding all of them and spicey foods which can cause immediate pain rather than an infection.  Seems mince is also off the radar now as it can have gristly bits in it.  But an abscess should hopefully soon be treated.  Good luck.
    • christine10242
      christine10242 Myredmolly

      Posted

      I have only ever been given paracetamol for pain; liquid morphine in hospital.  I have read on here that some say no paracetamol...don't know why as my doc gives it to me in packs of 100.
    • pauline15533
      pauline15533 Myredmolly

      Posted

      Hi Myredmolly, I am now on Naproxen and these seem to be taking the edge off the pain. It's definetley ok, bearable on them. Isn't it frustrating that there are so many mixed messages and info. My gp in addition to consultant said no to nuts and seeds, however I am meeting them again next week to come up with a care plan, which will cover the kidney problems. Oh the joy!!!

      It's been nice to hear from you and I hope your holiday will be restful for you and help in your recovery.

      P x

    • madge07350
      madge07350 Myredmolly

      Posted

      I found the side effects of the Flagyl far worse than the symptoms of the diverticulitis! I was in hospital (inFrance where I live) having them intravenously and one night they had to bring the ECG machine and call the cardiologist as I had chest pain and pins and needles down my arms. Later on I looked up the side effects online and found others who had also experienced this. Some people can eat different things than others. You must keep a food diary to try and see if there are specific things which seem to precipitate flares. I find I just canot handle big meals any more so no starter, maincourse and pudding when eating in restaurants. I live in a very gastronomic region of France where portions are often enormous so this is a bit of a drag. Going to eat in other peoples houses means explaining that I just cannot eat a lot. I still am not about things like raspberries so I try to only eat purées with the seeds sieved out.
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