Advice

Good morning

I'm just wondering if anyone can provide advice on the particular circumstances that I find myself in at the moment?

In 2012 I had surgery, following chemotherapy, to remove oesophageal cancer. The first surgery went well to start but, during the night there was a leak, and my stomach and oesophagus was infected. In order to save my life I was advised that it would be necessary to remove all of my stomach, and all of my oesophagus. Three further operations took place which ended with reconstruction using my bowels in November 2013.

The results of this surgery means that anything that I eat transits my system quite quickly, and diarrhoea is a daily event. Having said that, it's something that I have more-or-less got used to (apart from the odour issues, etc) and I've found that taking regular imodium causes more discomfort than the diarrhoea, as what I eat then has no way of getting out of the pipework that I now have. I've developed my diet so that I am now maintaining my weight at around 12 stone (reduced down from 16 stone pre-op), and the important thing is that I'm still alive.

The difficulty is that since losing my job in February this year, where I was in a position where I could arrange my work space to be very close to the toilet, things have gone a bit down-hill. I'm currently on Employment Support Allowance, apparently waiting to hear whether I'm on one particular stream or another. I have tried to find alternative employment; I have over twenty years experience of management accounts, administration and running various offices, but have had no positive responses. I actually applied for a number of positions within local health authorities, and at the hospital where I had the surgery (thought it might be nice to help the people who had helped me), but I was told that I couldn't have an interview because I didn't take the necessary examinations in 1979, despite my experience. Perhaps it's wrong of me to mention my medical issues in my applications, but I personally feel that it's right to do so.

I'm trying to create a 'work from home' business in the field of Family History Research, which has been a long-term hobby of mine. Although, if successful, this might allow me to be financially self-sufficient, while being able to manage my particular needs at home, I have to accept that this venture might not take-off. If this is the case, I need to be able to get money from somewhere.

I was wondering what the experiences of others in a similar position to myself were when it comes to benefits claimed?

Many thanks

Paul

5 Replies

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  • Hi Paul sorry your not having a great time at the moment regarding your job, I am now back on the sick after trying to return to work for a few monthe but found it a real struggle so am hoping i may be offered ill health retirement and i have been told i may be able to claim pension credits you may enquire to see if you are entitled to other benefits too....sending best wishes on your recovery x

  • Many thanks Margie.

    I have what will probably be my final check-up with the surgeon on Tuesday, so I'm going to speak to him regarding what he suggests.

    Best wishes to you also x

  • Hi DaddyPig

    I have been incontinent of faeces for 23 years post Ivor Lewis.I finally found some measure of control with the preparation called "Questran". In my case the syndrome is called BAD -- Bile Acid Diarrhea.

    I have a large body of peer reviewed research which I would be happy to share with you --if you are interested come back with your email address.

  • Hi Gutless (Love the name)

    Many thanks for your reply, it's appreciated. I'm going to print your reply out for future reference but, for the time being, I'm going to continue as I am. I don't know if it makes sense, but the diarrhoea has become a part of my life, it means that I can eat what I like/need, more often than not, with little discomfort other than the need to go to the toilet regularly.

    Again, many thanks, and best wishes to you for the future.

    Cheers

    Paul

  • This all depends on whether you think that diarrhoea is natural / acceptable in your situation doesn't it. I understand that you accept it as the better of two evils, but if at all possible it would be good to live life out of toilet range wouldn't it. I am just wondering whether some of the problem could be small intestine bacterial overgrowth, where the benign bugs in your system are not working properly. There are some specialist antibiotics that may be helpful. There is a specialist unit at Royal Marsden under Jervoise Andreyev that might help, but it is quite a specialist gastroenterologist problem. Here is an article that may help: medscape.com/viewarticle/77...

    It is speculation on my part, but I would feel inclined to take the article along to your GP / back to the hospital, and ask to see a gastroenterologist.

    Most people do have to change their employment situation after this surgery.

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