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Advice please...

Posted , 4 users are following.

charl123
charl123

My story: 3 weeks after having my son April 2014 I developed severe necroting pancrititus due to gallstones. After being admitted to ITU for 5 weeks I recoved. I had my gallbladder out a month ago at the royal free. Managed to do the procedure laparoscopic although was a lot more complicated than they believed (the surgeon told me my gallbladder was matted to nearby organs and was very 'sticky'. I still have 2 psydocysts that are slowly shrinking on there own and have significant scaring and damage to the head and the neck of my pancreas.

1. Where my gallbladder was is very painful. In the past 2 weeks when I sneeze I feel like someone is stabbing me?

2. As there is scaring and damage does this mean I'm at risk of chronic pancrititus?

3. I was due to go back to work today after my maternity leave has finished, my GP has singed me off work. My work aren't very understanding and have made me feel like I'm in the wrong for not returning even tho they are fully aware of what has happened. When I took my sick note in they told me there changing my contract from 40hours to 20hpurs.

4. I work as a restaurant supivsior in a hotel, I honested don't think physically I could do my job anymore: I get awful back pain from day to day tasks.

I don't see my surgeon for my check up for another month....

Any advice welcomesmile

0 likes, 10 replies

10 Replies

  • robin0
    robin0 charl123

    Posted

    I had my attack in boxing day a year ago. although my was idiopathic I am still in daily pain and sometimes you get the ones that can knock you for six. even little black outs.

    I have been unable to return to work as the physical movement or even just sat for periods of time causes pains.

    I learnt from two other suffers I met in hospital that it never goes away and then on top your company may not be insured for you and the disease and also due to the pain relief you may not be insured.  

    You will be higher risk of diabetes and other issues.  but dont think about them stick to the diet and enjoy life in the best way you can. If your doctors are like mine I was the first patient with the disease in there two practices.  They have been learning of me and have even told me that alot of doctors wont do referals because the surgery has to pay so you have to fight for it. 

  • stuart13
    stuart13 charl123

    Posted

    As regards your recovery then it really is early days and you should not make any hasty decisions regarding work. If necessary take advice from citizens advice.

    it doesn't automatically folly that you will have chronic pancreatitis. Each case is very individual and is down to any permenant damage that may be caused to the pancreas.

  • robin0
    robin0 charl123

    Posted

    I agree with stuart. everyone with disease is different but the same if that makes sense.  Due to the lack of research of this disease doctors only go of the same information that we have as patients.  YOU know your own body as a such no the limitations. This is a life changing disease that has left its mark. Now is the time when you can sit and worry what might happen or get o  and enjoy life and deal with  things as they pop up. learning to live with pai  is the hard part. stick to the basic rules and do trail and error and enjoy life.
  • cathy31644
    cathy31644 charl123

    Posted

    Im really sorry you still stuggling, pain is so exhausting, and so painful! Im not sure if your employer will look at a staged return to work? do you have a union or occupational health rep? you do have RIGHTS and perhaps you could evan try citizen advice.

    I had gallbladder out march 2014 and still find painful around site at times, and mine was a easy keyhole,no stones justa non functioning G>Bladder. So you had a much bigger operation and it will take time to get over it,plus a baby takes all your energy,time and doesnt allow your body to rest and restore itself.

    seems to me youve done brilliantly to cope with everything, must be really tough.

  • genna07944
    genna07944 charl123

    Posted

    If you have pain coughing or sneezing I would say it's normal. If bending over hurts I would want an X-Ray to see if an instrument was left behind. 
  • charl123
    charl123

    Posted

    Thankyou for the advice and support Ive been signed off work for a while. I'm struggling with depression at the moment (from being in intensive care: hallucinations, procedures and being away from my son for so long)

    Hopefully I'll get there soon! 😃

  • stuart13
    stuart13 charl123

    Posted

    Hallucinations are not uncommon when on morphine or similar drugs. You will be feeling very down after all that you have been through but do keep your GP informed of this. Being back home and relaxing will work wonders although if you can go for walks this will help.
  • charl123
    charl123

    Posted

    update...

    Last week I saw one of my HPB surgeons at the royal free, my gallbladder showed sever inflammation upon lab results, so pretty glad it's out! The pain in my stomach is there but it's no where near as intense so feeling positive about that.

    Surgeons more concerned with the constant pain in my back and the sharp pains in my left shoulder after I've eaten. Been prescribed a creaton 10000 to help with digestion so far so good! Booked in to have a CT in 2 weeks with some bloods, CT will show if another op is required to drain my psydocysts. There pretty positive that I have chronic pancreatitis so trying to figure out what this means and the impact it will have on my life *as I'm only 20*. So any advice or knowledge would be greatly appreciated😃

    Work wise the surgeons have written to my GP that I'm not fit which is a major relief for me as I was starting to feel like I was being a fraud for not working even tho I was being told I had a valid reason! Stupid now I know!!

  • stuart13
    stuart13 charl123

    Posted

    For continued support and advice log on to one the the specific pancreatitis forums and contact those who have a similar problem to yourself.
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