fifth flare up in 5 months.

Posted , 10 users are following.

Diagnosed 2 years ago , all quite until 5 months ago, now having flare ups once a month. I do have a referral to gastro department but there is a 45 week waiting list. I can not keep taking time off work , I have lost a stone in weight and now under recommended BMI .

After second flare up suffered dreadful ABS, managed to get that under control by taking psyllium husk, inulin and slippery elm. Occasionally take prebiotics and alo vera juice and L glutamine , to top up my gut flora.

Feeling a little desperate, anybody got any ideas.

0 likes, 17 replies

17 Replies

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  • Posted

    Hi. Sorry to hear about your multiple flare ups. Like you, I was diagnosed 2 years ago and was also having monthly flare ups. I lost weight as I was constantly having to go on liquids only, low fibre diet, then introducing fibre again slowly. I was depressed and worn out with it all and constantly seemed to be at the doctors. A family member who is also a GP, suggested it could be linked also to neuropathic pain in my bowel. Consequently my own GP had also started to consider this too. As a result I was prescribed Amitriptyline, taking 10mg before bed. I also take an Aloe Vera tablet at bedtime and a daily probiotic. And apart from a few niggles at times, it does seem to have helped me and really hope it continues too. I really hope you can find some sort of relief soon as this really is a life changing horrible condition.

    • Posted

      Many thanks for your reply, which very interesting as my recent flare ups only started after I was taken off Amitriptyline . Which I was on for anxiety , I had to come off it as I started to have episodes of arrhythmia (fast heart beat) which can happen during the menopause. I have looked up neuropathic pain, most of the papers are far to advanced for me to understand. If you could point me to any sites that are not so high brow I would be most grateful. Thanks

  • Posted

    i would suggest if you have not already done so, a change in diet. For me what worked was: no fried foods, low dairy, no red meat, no super sugary foods. Juice is ok, no dark soda (pepsi, coke), no coffee or teas. Pasta is good, any sauce to be kept to a minimum and no oily foods. Hope this helps.

    • Posted

      Would the oily food include olive oil I add it to my food after I cook it like when I make my veggie chicken soup I let it cool 15 mins and then I add the olive oil. I make a big pot often I add healthy request cream of chicken soup, sterile water , frozen cauliflower, broccoli, carrots, frozen precut organic sweet potatoes, green beans, frozen precut potatoes, onion powder, garlic powder, cayenne pepper, turmeric then after it's done I let it set 15 mins and add 1 tablespoon of olive oil. I had to back off on over dosing on the onion powder and garlic , but this soups taste awesome!

    • Posted

      Hi thanks for your reply. I do eat healthy and have done for years . I start my day with porridge and flax seed. Hardley ever eat fried food , eat heaps of vegetables which I grow myself. Not a big meat eater and do not drink sugary drinks and do not have a sweet tooth. But many thanks for taking the time to reply.

  • Posted

    You not taking antibiotics every month are you? When was last time you was on antibiotics and which ones did you take and how long?

    • Posted

      Hi , no only took antibiotics on first flare up , about 5 months ago, and then only after I had been struggling for over a week. It was a seven day course , at the moment unable to remember what they were. Could phone my doctors and find out. Never been sure if it was the antibiotics or the diverticular that started off the IBS something I never had till these flare ups. Hence why I take all the potions etc. Thanks .

    • Posted

      Posy I'm a little confused where you ever actually diagnosed with diverticulitis and what test did they run on you to say you had actual diverticulitis thats when the pockets are infected.

  • Posted

    Hi posy hope you get sorted soon I had elective bowel resection 1st Aug like you I had a lot of flare ups landing me in hospital every time for a week. I would suggest cutting out the cayanne it caused me some of my flares also.

    Hope this tip helps

  • Posted

    Hi many thanks for your reply. But until I see a gastro specialist , I have no idea what my options are, if any. Still got another 6 months before any chance of an appointment. As for the cayenne I used to take it with apple cider vinegar but have not for a while. I do find with diverticular there are so many different opinions and what works for one person does not work for another.Thanks

  • Posted

    Perhaps take probiotics every day rather than occasionally? That one course of antibiotics you took will have affected your good gut flora for anything between 3 months and a full year or more (depending on what the antibiotic was - any chance you've remembered?).

    Can you tolerate live yoghurt? This will give you a steady dose and may help soothe your gut. Or you can buy capsules - or maybe do both to get a good variety. The other things you mention should all help so perhaps take them all every day (I know it gets expensive though!).

    Do you grind the flaxseed? I know some people have to avoid seeds altogether but grinding them might help.

    Your anxiety might be at the bottom of all this (your diet sounds great!). Studies show that the microbiome is linked in with our emotions so maybe finding alternative ways to deal with the anxiety is a key here. Sending positive thoughts!

    • Posted

      Hi thanks for your time. I have just phoned docs and my antibiotics were Co- amoxiclav 500mg/125 mg , three tabs a day for seven days.

      I will start taking probiotics everyday, though I do top up with live yoghurt and occasionally kefir and sauerkraut.

      Maybe it is just coincidence that DD started when I came off amitriptyline , but is it, to much of a coincidence. Since the 18 months I was on it, I had no major flare ups. I am not aware that I am overly anxious, but I am still going through the menopause. Finding it hard to find any information on microbiome and neuropathic pain.

      Its not just the physical side its the negative impact on the equality of life, ie making arrangements and then have to cancel them and letting down friends etc.

      Many thanks for you help, any other advice would be most welcome.

  • Posted

    i have been reading these posts and am very interested i like most of you have a history of the big D Had another attack last week and landed in the hospital for three days Am now home on CIPRO and FLAGYL . still a lot if stomach pain saw DR again today not as bad as it was when i landed in hospital but she is confused why i am still in pain i would appreciate any advice you can give as you know it is so frustrating

    • Posted

      Unfortunately my experience with DD is that the pain can last anything from 4 weeks to 18 months before finally going - the worst the attack, the longer it takes for your insides to heal. If you were admitted it was a bad attack. BUT - if it is more than an attack - for example, you developed a fistula or abscess - then the pain will remain and you should get that checked out.

    • Posted

      Hi , I am a newbie to this and still trying to understand it all. There is something called 'post diverticulities IBS , ( PDV IBS) Also your gut flora may be out of balance . There is some excellent information on this site , by people who know a lot more than me.

      Wishing you well.

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