difficult options

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Jan 2015 ruptured true cyst,hospitalised acute pancreatitis and developed hepatitis.hepatitis thought to be due to mucky cyst debris entering liver.

Most days spent in variable degrees pain,vomiting,fatigue,severe blotting ,little appetite,weight loss.and hypos( notknowndiabetic)

March will have CT scan with contrast and then the experts will decide what to do or not do with me.

I'm not sure what I should be pushing for,will surgery help?

Is managing symptoms and diet pain control better option?

Should I be fighting to get back to work,or accept that this is how my life is going to be?

I have been told that removal of the 3 true cysts by surgery ( with pancreas end removal,spleen removal?bowel) would stop the pain and CP but at what cost? Your comments thoughts welcomed.

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10 Replies

  • Posted

    as far as work and life it will never be the same. I have through personal experience found that I am unable to do the job I use to or even any hobby as the pain can be crippling. I would with regards surgery speak to your own gp before you make a decision as the pros and cons are better pointed out by a doctor who knows who and not just you and your condition. if that makes sense I found this out as having surgery would leave me worse as advised by my g.p. yet the surgeon do it and to be honest I rather trust my gp who knows me than a man I met for 10 minutes.
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    • Posted

      Thanks for this robin.Have had issues trying to get my own Gp onboard,but after my last attack and hospital admission, (and the blood results that confirm i am as ill as i say)Gp has started being supportive,but lacks knowledge.He does however seem to be researching more about C.P so thats good.
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    • Posted

      My doctors has two practice's in the town I live in. And I also found out there lack of knowledge about the disease as I am the first person with it that they have had. They had a meeting and read of the net what is recommended. I soon put them right and together we have all been and still are on a learning journey. That's why I suggested you ask the gp as to there opinion and ask them to look t everything as they know you more personnelly than the surgeon.

      It is a life changing disease that has little or bi research done and you feel like no one believes you. But hello we are all here and know without words how you feel and will hopefully help you gain an understanding. Remember your not alone anymore

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    • Posted

      thanks Robin your advice is very thought provoking.Got appt with Gp tomorrow for more blood test and a sicknote and review.Everything changed with my Gp when one of my pancreatic cysts burst and i was so very ill and feverish,hepatitis and pain, but more importantly it all showed up on blood test and u/s so at last he could see it wasnt all in my head.

      So tomorrow i start by asking Gp to research,because after the Ct and test i am having in march the speciaist wil be seeing me to disscuss management and possible surgery options.thanks again cathy

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  • Posted

    Sorry You are going through such a bad time. I hope you get some good advice. I know there is something wrong with myself. But I cannot get the doctors to beleif me. I think sites like this are a good ideal as you will find more information then a local doctor.

    Let us all know how you are doing

    Good Luck

    Melanie

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    • Posted

      Thanks Melanie.well today is my Birthday. So thinking what food treat I can have without setting symptoms off. So far had porridge with low fat milk and blueberries and a humbug sweet. Any thoughts on low fat treat?
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  • Posted

    Happy Birthday Try Yorghurt and Fruit. I would stick to a Vegan diet as much as possible I think that would help. Most of the Vegan diet is low fat.

    Hope this helps.

    Mel

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    • Posted

      Well i had quorn shepherds pie and then stewed fruit and homemade mango and lime low fat yoghurt icecream. very yummie.Yes i find vegan a good diet to take and Thai food ,not with coconut thu,is very good.
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