Diverticulitis disease

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Hi

Collapsed last April. Admitted to hospital for 4 days sent me home as seemed to be a bit better and they were short of beds ! Admitted again 2 days later even worse than first time sent me home after 5 days still with the symptoms. Since then have had 6 flexi sigmoidoscopy the last one under sedation as they were unable to get where they needed to get. Had 6 colonoscopic scans. They thought cancer or chrohns but got letter today saying they reached the area high up in bowel and there is a large stricture but as they can pass the small scope through I should be ok. No cancerous cells but diverticular disease.

Since April I have been in constant pain and go 10 times a day (rabbit droppings lol). All I have been told is go on the internet and look it up. That doesn't help with the pain and the embarrassment I have not been anywhere for nearly a year as too embarrassing.

Been on gluten wheat lactose free it hurt lots. Put on low fibre diet it hurts. Put on even lower fibre diet basically eating rubbish makes me so tired as I am getting no decent nutrition.

As I have no help from the NHS I am asking for help from here. What is best to eat to try and get better. What do you recommend as I see a lot of you have had this dreadful thing for years. I just want me life back. I suffer with chronic fibromyalgia and that takes away enough of my life as it is

All suggestions will be very gratefully received

Thank you

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6 Replies

  • Posted

    It's terrible I can not eat any fibre . I don't eat bread that helps with the bloating I eat very simple food grill bacon sausages lots of tin fish .chicken cauliflower soup (chicken) . NO red meat corn windy veg tomatoes cuncumber lettuce and chocolate keep a food list of things you eat and when you have something that starts a flaire up you will soon know . Unfortunately yesterday I started on fibregel again wish I hadn't in terrible pain so will go on a liquid diet for another 24 hours to give my bowel a rest I try not to go on antibiotics but after 48 hours of liquids only and still bad I will

    .always drink lots of water

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  • Posted

    I too found the NHS no help and turned to this site.  Julia1040 has made a very helpful post on food which some of us have added to.  Everyone is different and what suits one does not suit another, so keeping a food diary is an excellent way of finding out your needs. 

    If you are passing small hard pellets, it may be you need a stool softener to make them easier to pass and perhaps less painful.  I was prescribed Fybogel by my GP which does soften and bulk them.  I found for me one a day was mostly OK but sometimes I needed 2 a day.  But too much and you get the runs!  I regularly have 4 - 6 movements, but on a bad day it can be 8+.  That is something I have had to learn to live with.  I don't let it rule my life, but I do know where the next loo is and keep a spare pair of pants in a plastic bag!

    As for food I see you have a stricture, so you might be best with soft or liquid food.  I make a lot of home made soup and blend it thoroughly.  That way I get nutrients and easily digestible fibre.  The other thing I take is meal replacement drinks like Complan which contain added vitamins and minerals.  I don't know how they would come out without lactose, but I think you can get lactose free milk now.  I used unsweetened almond milk, or coconut milk, but there is also rice milk and oat milk.

    I have lots of soft food like steamed fish, mashed potato and vegetable puree of carrot, swede and parsnip.  I also like scrambled egg and sloppy porridge (but not everyone can take this).  I avoid insoluble fibre like potato skin, apple skin, and all nuts, seeds, pips, popcorn.  I soak my tomato in hot water, remove the skin, quarter, then remove the pips

    As for the pain, I'm afraid that can take a long time to go, as your insides heal.  I have had this disease for 15+ years, and had a flare last August, then December and am finally free of pain since February, apart from the odd twinge.  To help myself I have taken pure aloe vera (juice or capsules) plus a daily probiotic since December, and the pain started to recede almost immediately.

    The positive news is it is not cancer, which must be a great relief.  It will take time and patience but I hope you will find what suits you.  Best wishes.

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    • Posted

      Thank you for your comments and some good help there. Looks like the soup maker is about to come out of hiding. Had enough of soft white food only lol
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  • Posted

    Hi, sorry to hear all of this. It sounds like you don't actually have diverticulitis. I think diverticular means the pockets are present but that does not necesarily mean you will ever get diverticulitis. After my recent diverticulitis I was put on daily probiotic pills (1 billion active cultures) for 2 months and it really helped (after 1 week) my system regulate and the diarrhea has stopped. Also with the stricture I wonder if eating 6 small meals a day and no insoluable foods (corn, nuts, seeds, raw vegetables) that are hard to breakdown and digest might help.

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    • Posted

      Hi. It was confirmed after a year of tests and hospital to be diverticulitis disease and this has caused a large structure and apparently it won't get better. Good point to eat more often smaller portions. All good advice I am getting. Looks like no help from NHS so going to go fluid only for a few days then try slowly putting some of the info from everyone's comments into practice.

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