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In Agony at moment with extensive Diverticular Disease and looking for advice and help.

Posted , 11 users are following.

jane73671
jane73671

Newly been diagnosed with extensive Diverticular Disease and just out hospital after 4 days getting antibiotics intravenously. Currently on course of oral antibiotics Ammoxicillin and Metronidizole but confined to bed in agony here after trying to eat some soup earlier as i have had no food for 4 days and can only tolerate a small Actimel in the mornings and drink lots of water throughout the day. If i eat i have excruciating pain and foul smelling watery diarrhoea. Really feel ill here and i am at the end of my tether which has prompted me to seek the help and advice of other sufferers. Thank you all in advance for any help you can give me.

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  • angi1
    angi1 jane73671

    Posted

    Jane. I am same as you. On 3rd flare up in 6 weeks and suffering with r a. Have stopped methotrexate because of implications re immune suppressant. I can fully sympathise with you. I was diagnosed at the beginning of December and advised to cut out anything with seeds, pips and nuts. Have done that but still in pain. Hope you soon start feeling better x
    • jane73671
      jane73671 angi1

      Posted

      Hi Angi, its been 6 weeks now since i stopped the methotrexate but i am now terrified to go back on it. I am waiting on docs phoning me back re possibly changing to a less potent drug as i dont want to risk a painful flare up again especially when the antibiotics take so long to get to work. I would rather if Ive got an infection get it treated asap. Its a constant viscious circle!!
    • angi1
      angi1 jane73671

      Posted

      I been off it for about 8 weeks. I haven't had any issues as yet!!  I have contacted my rheumatologist to see what else he can give me as like you I am scared to go back on it. The last time I was in hospital over New Years I ended up with septacemia which reLly scared me and my family.  I've just started another round of antibiotics as got the pains back again. It's such a rotten disease and the dr at the hospital is already talking about removing part of my colon. I've got yo have another scope to see what is going on.....not looking forward to that.  How are you now? X
    • jane73671
      jane73671 angi1

      Posted

      OMG Angi...you are the exact same as me!!! Waiting on rheumatologist calling back about my next move re other drug too. But i have had 3 very severe attacks of Divi and been admitted 3 times in 6months, MRI scan and colonoscopy both revealed Extensive Divi Disease and docs told me it is inevitable I will need surgery in the future but "because of complications involved" (docs words) they would rather avoid surgery until its really necessary. I am not sure if the complications are because my divi is extensive and not just confined to just one part of the bowel, but also think its got something to do with my immune system or lack of immunity with the methotrexate. At the moment i have got pains most days but they are tolerable as long as I watch what I am eating. Living off chicken and fish with lots of overcooked veg!!!! Weight has fallen off me!!! Just hoping as i learn whats good to eat then i will gradually settle down. Just scared to eat now so very wary. Got bloods taken yesterday so expecting my Inflammatory levels for rheumatoid will be sky high now cos ive been off the methotrexate. Its bloomin rubbish!!!
    • angi1
      angi1 jane73671

      Posted

      I've been in twice in a month. First 10 days then 6 days. Told exactly the same re op. Have just found a group on Facebook called diverticular support group uk. May be worth a look if you have Facebook. I can afford to loose weight so that is a plus for me. Every cloud lol. Having bloods on Tuesday so will be interesting. Back to work Wednesday all being well. Only worked  5 days in last 6 weeks. Never realised how debilitating this could be. Hope my bosses are ok as I am told stress is a key factor in causing flare ups. What we go through eh. I also have barretts oesophagus and had my gall bladder out last year. This pain is so much worse. Stay well xx
    • jane73671
      jane73671 angi1

      Posted

      Awe you stay well too Angi! Its Such a horrible disease. Keep well and take it easy at work! Xx
    • angi1
      angi1 jane73671

      Posted

      Hi jane. Went back to work today and the boss was very good. My colleagues have been helping me all day and have said as soon as I feel any pain I have to go home and see my doctor. How are you doing? X
    • jane73671
      jane73671 angi1

      Posted

      Thats brilliant news Angi! Hope all goes well!! I am not too bad, good days and bad. Went for another CT Scan today as apparently theres something untoward with my liver. Wont get results for a few days. The Divi has been not too bad but i am being extra careful. Long may it continue. Xx
    • angi1
      angi1 jane73671

      Posted

      Hope it's nothing too serious. I'm being careful too. Now cut out red meat and bread. Scared of another flare up. I keep a food diary as well xx
    • jane73671
      jane73671 angi1

      Posted

      Yes defo Angi. I dont eat any red meat now either but i do have wholemeal toast in the mornings but limit my bread intake to just that. Most of my diet is chicken n fish n pasta. Drinking lots water and Innocent smoothies to try n keep bowels moving. Every day is just on edge hoping 1....I dont get a flare up. And 2....I dont get constipated. Lol! It is a nightmare though. Hopefully it will get easier.

      You take good care and be careful at work! Hope all continues to be well. Xx

    • madge07350
      madge07350 jane73671

      Posted

      Have you done any research into whether the methotrexate could actually be worsening the diverticulitis. Methotrexate was developed as a chemo treatment and sometimes they can have delayed adverse effects on our bodies. Are you taking a probiotic?
    • jane73671
      jane73671 madge07350

      Posted

      Thank you Madge. I agree, methotrexate is really potent and since stopping it now 6 weeks ago, i am convinced i am feeling better for it. Still waiting on my rheumatologist nurse phoning me back with an alternative.
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