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Support in Essex, near Chelmsford?

Posted , 6 users are following.

loslinos
loslinos

I was wondering if there is anyone in Essex that would be interested in meeting up for support. No- one around me understands this condition and since I am having a flare up now, it's starting to feel a bit isolating  as I can't discuss it with anyone. I have had to,yet again, cancel my plans for fun and enjoyment and am feeling so fed up that my life is just stagnant and I can't move on. I am wondering if a colostomy is the only way to go? I dread the idea of it but maybe it will be better than feeling like this for several months of each year.  I live near Chelmsford. 

1 like, 12 replies

12 Replies

  • appendectomy
    appendectomy loslinos

    Posted

    I was threatened with the sack yesterday from the nhs as my sick leave racked up over the past year after I was misdiagnosed over 2 months. Irony isn't it? Chin up though. I managed to control it with regular toilet, anti inflammatory diet and exercise. If you have a current flare, rest. Don' exercise as it can exacerbate the flare. Be kind to your tummy with fluids, easily digested foods. Absolutely no fibre rich food during flare up. I don't eat insoluble fibres at all no more. Cause they bulk up putting pressure on a already sore intestine. I would have been open for meetings but I live too far away. I hope you feel better soon. Just remember regular toilets and rest and fluids. Best thing.
    • loslinos
      loslinos appendectomy

      Posted

      Thanks so much for you advice and kind words. I really hope your employer starts to understand your situation. The NHS as well! You would have thought they would be in a perfect decision to understand the impact of diverticulitis. Yes I'm on fluid only right now. Fingers crossed 
    • vivian89329
      vivian89329 loslinos

      Posted

      HI totally get it. I a either in the bathroom or cannot go at all which puts even more pressure on the bowel. I am having that kind of day myself. Today I had to take Restorolax and Metanucil and need to stay home by a bathroom. Otherwise another infection. I take Bentylol for pain. It is prescribed. Gang in there. Drink a lot of water. Keep the bowel flowing. Surgery is a thougtg I am contemplating.
    • loslinos
      loslinos vivian89329

      Posted

      Thanks for your message. It sounds like you too are having a bad day. Hope you are feeling better now? Doesn't it get you down when you are just scared to commit to anything "just in case" . Just sick of it. Hope tomorrow is a better day
  • appendectomy
    appendectomy loslinos

    Posted

    I work for the nhs. I'm a specialist nurse in intensive care. I've seen first hand how bad diverticular disease can get many times. Despite sick notes from gp and discharge letters from hospitals they can still sack me. I looked it up. I was told I'm a liability to the organisation hahahaha. I I was quite upset at the time. Now I'm just angry. If they sack me I may have to take action against them. Not because of unfair dismissal but for being misdiagnosed for so long. Told them at the time I was scared I loose my job. No one listened. One or two said they can't sack you if you are genuinely ill. Well I know better now. Good luck with fluids. I discovered some great soups. Very kind food for stomach too.

  • appendectomy
    appendectomy loslinos

    Posted

    I am going to share some of the stuff I learnt from researching our predictament. If you had a episode of diverticulitis your guts will be very sensitive for some time after. Also diverticular disease often co exist with another gi disorder such as ibs or colitis. A endoscopy/coloscopy can determine whats going on inside the colon.Your line of treatment would depend on what they find. My personal experience is that I do get ibs symptoms post diverticulits. Bloating, constipation/diarrhea, pain, spasm. Colicky pain. I used kolanticon, overcounter meds for these symptoms. There are articles out there supporting the theory of chronic diverticulitis, unresolved ongoing inflammation in the guts. One study operated 75 patients who had ongoing pain but no clinical symptoms like fever and raised inflammatory markers in blood. When they removed the affected piece of the colon and dissected it, it was found 100 % had inflammation. One of them even had an abscess that was not seen on the CT scan. This leads me to beleive this is a inflammatory condition too. I done anti inflammatory diet and became totally pain free. Unfortunately I then caught the flu, got constipated and the lack of rutin lead to another flare which then went onto a full attack again. Routine, eat on regular times and eat food aimed at lowering blood sugar levels such as mediterranean diet or research anti inflamamtory foods. Theres lots of information on it out there. It takes time to tame it though. It took me a month but God, I felt fantastic after. I had so much more energy and pain was gone. Theres another term to google, smouldering diverticulitis. Its basically the same really. I begged my doctors for an operation but they refused it. After chronic pain for months they still said no and simply discharged me from the surgical team. I dont really want them to cut me open again. But I do want a life too. I am going to fight this all the way. I wont give up. Its amazing how little effort is put into this from the medical world considering how many people suffer from it.
    • loslinos
      loslinos appendectomy

      Posted

      Smouldering diverticulitis, now that's a term I've never heard and sounds exactly like what I have. It's almost like the colon has a permanent low grade inflammation/ /infection.  The best way I have ever tried to explain the pain is like this... Remember as a kid when your friend or brother used to give you a chinese burn in your arm? That's exactly how it feels in the lower left side of my colon. Almost like someone is doing a " Chinese burn" and squeezing the colon in opposite directions. The feeling is that it is literally going to rip or burst. Same feeling last night, thought I was on my way to hospital cos got sweats and chills and excruciating pain. Things feel bit calmer but still feel so ill. Took days off work as holiday for rest of week to get myself better. I think a completely "clean" diet is what I'll try next. No wheat, no dairy, no life. Seems unfair that some people can get away with eating anything. 
    • loslinos
      loslinos

      Posted

      I had part of my sigmoid colon removed two years ago and then re sectioned  and have not been much better ever since and things seem just as bad now. How is it possible to have the affected bad part of the colon removed and still feel the same symptoms. My doctors don't even seem to care. I am forever backwards and forwards to the surgery,  just because none of them can help me, my frequent return visits make me look like a hypochondriac or something , which I deffo am not.  Utterly fed up with it. It's not like you can just stop eating forever to alleviate the pain. 
  • vivian89329
    vivian89329 loslinos

    Posted

    Hi

    I have Ibs for many years. Always managed it. It was not easy but I got by. This however is a totally different ballgame. I am afraid of having a perforation or a burst pocket. I had about 3 infections but they did not show anywhere. My Gastro says I can consider surgery but he cannot do the referral. My GP has to refer me. My GP says I am nowhere near surgery but based on what? I am in pain everyday. It has become chronic now. It's not like I want to be cut opened but isn't the alternative worse? How long can you live like this before something serious happens? I tried diets but it is not a fix. My bowel always feels inflamed.

    • loslinos
      loslinos vivian89329

      Posted

      Honestly, I do know how you feel. It's horrid. Try and see the same GP over and over, that way they can at least  keep a track of your symptoms. My Gps surgery has about 10 GP's and because this illness flares up with no warning, I seem to always have to,get emergency appointments and am the. Forced to see various random GPs who have no historical knowledge of me or who have clearly not even read my notes. I am booking appointments  in advance now with the same GP and cancelling if I don't need them to try and get some kind of consistency of care going. I wish I could give you some relevant advise that would make you feel better but alas no, coz sadly I am in the same freakin boat!!!! 
    • vivian89329
      vivian89329 loslinos

      Posted

      Thank you all. I end up going to ER as not always my GP is there. Also don't they say that if you wait 48 hours with diverticulitis with no treatment it could become very dangerous. I was told you can die from this. Anyway I have a couple of meetings tomorrow at work so I took my Bentylol so that the pain doesn't wake me up at night and we will see tomorrow. I am glad I found you guys. Not too many people get this. I get tired explaining.
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