Hi, my name is 2ManyBoxes!

2ManyBoxes

Hello🙂

What awful emojis!

Some basics about myself. I am male, in my sixties and like a joke, although this can be a problem on forums as just the bare letters strips what I'm trying to say of all nuances of tone etc. so I sometimes come across wrongly.

I've been suffering with IBS for 30 years. This started as a result of anxiety / depression but my guts were permanently damaged quite quickly by an incorrect diagnosis, leading to my guts getting assaulted by excess stomach acid. Since then it's been a struggle to prevent health trouble. I try to control this with my diet amongst other things. Over the years it's got progressively worse. I've tried many, many treatments but they're all either ineffective or my body gets used to them over the course of 6 months. There seems to be currently no real permanent cure.

I was finally dismissed on the grounds of ill health some years ago. Since then I've been living off my savings, including during Covid, but I'm running out.

I'm trying to sign up with the DWP. I'm at the first stage but there's a communication failure between my GP and the DWP about what forms my GP gives them, so that they are following official procedure.

I used to work in application support and before that software development, both of which can be done by remote working. So I'm hoping that there's a job that will allow me to work from home mostly and to be understanding if I have bouts of bad health.

I have no idea what agency to go to that might handle someone in a situation like mine, which I think is off the beaten track for a lot of government departments and other organisations.

It's a lot to ask but I have no choice but to try.

luvpink

@2ManyBoxes

Hi and welcome to the community.

If you post in with a heading saying help needed with DWP/benefits advice some of the experienced members will advise you.

@pip

@Esa

2ManyBoxes

https://forum.scope.org.uk/discussion/comment/985351#Comment_985351

Hi Santosha,

It's good to hear from someone who's in a similar situation. However, one of the many problems with IBS that I've fallen foul of is that the S stands for Syndrome. I think this means that it's an umbrella diagnosis for people who have similar symptoms but different causes.

I can't say that I've come across your medications. I suspect that doctors do have distinctions between different types of IBS but they're pretty fuzzy at the edges. I don't have a problem with the idea of doctors being uncertain about things but the profession still has the idea that if the doctor radiates certainty then that's half the treatment. We might have different causes for our versions of IBS. Proton pump inhibitor is something that's never been mentioned to me but FODMAP has.

Have you come across FODMAP? If you google "FODMAP NHS" the Gloucester hospital has a good explanation and a fairly full list of the foods you can and can't eat. Basically it's an intolerance of a particular protein which is present in onion and garlic in high levels. So much for Italian / French cooking 😶 My diet largely follows the foods listed so I know I'm affected by that problem.

Fortunately I haven't been hospitalised by any of my medications. What you describe sounds horrendous, I hope your GP was big enough to admit the need to back pedal quickly. I have had pig-headed GPs who persisted in following the wrong diagnosis and so caused a lot of damage. It's a horrible situation that was only solved by changing GP practice.

I saw a consultant but I jumped the queue by going privately. This was 15 years ago in Sheffield and cost £200. It depends on what you're prepared to do, but I was fed up with getting nowhere at the time. However, he said that the then current treatments were largely ineffective and there was nothing more that could be done. So I've struggled on with modifying my diet. I've also found that physical activity needs to be carefully considered. Bending over and doing something vigorous (like cleaning the bath) is a very bad idea, you are squashing your guts up and then giving them a good shake. Sitting still is bad but so is too much walking / housework. I certainly can't tackle country trails etc.

If you're not afraid of the term 'proton pump inhibitor' then it sounds like you have a background connected in some way to human biology, which I also have. However, doctors aren't trained for 5 years for nothing so my level of knowledge is sometimes more dangerous than helpful.

I hope you can pick something out of my rambling that might be useful and I hope we can keep in touch. I'll have a look at the IBS Network, I've not joined any of the forums because it's difficult to work out which are useful. That one sounds ideal though.

Cheers

Julian

2ManyBoxes

https://forum.scope.org.uk/discussion/comment/985652#Comment_985652

Santosha,

Wow, I thought I'd been through the mill but blimey 😮 5 colonoscopies? They should give you an MBE for that. I've only had 3 and that was bad enough. The access to gas and air is some compensation (good stuff that 😉) but not enough. Colonoscopists seem to have had highly successful sense of humour and empathy bypasses, all they care about is their precious camera.

Doctors do like diuretics, don't they? On a recent hospital visit they had the entire ward on them because we weren't moving around as much as we had been at home. Then they couldn't understand why everyone was suddenly going to the loo all the time 😄

I can't feel my feet for some reason yet to be determined. I can cope pretty well at home because I've got the whole place mapped out for handholds. I can also walk around town etc. so long as I have something like a wall that I can grab to stop me falling. While I was in hospital I made the mistake of having 2 falls because of the unfamiliar environment. Everyone went into PANIC mode thereafter, I couldn't walk anywhere unaccompanied by a nurse and so, as they were severely stretched, I ended up spending too much time either in bed or sitting down. As a result I was given a Zimmer frame that was useful while I was there but useless as soon as I got home.

Have you managed to find a good GP? I had one for many years that I got on with very well and he very rarely put a foot wrong, but he's become a locum now, so at least there is one decent locum around here. He was worth his considerable weight in gold. I'm still trying to find a decent doctor after the new practice came in but I've not really clicked with anyone yet.

It does pay to consider if what your GP has just prescribed you is going to be good or bad for you. To be fair to them they only have a stupidly short amount of time with you. The problem is that you don't have long to do your research before your employer / DWP person is asking why you're not available to hod bricks at the local building site. They seem to think that doctors are infallible miracle workers who can cure anything. If you've been given a new medication then you should be fully cured in a few weeks. To them there is no such thing as an incurable condition, no situation that can't be improved with a firm hand. At least that's been my experience in the good old computer industry where the least qualified people become the managers, with next to no training in the art of people management, apart from golf days that is.

Thanks for the website references. I have to work from home which probably rules most pure IT roles out these days. Everything has gone to India to save money with a very thin crust of British people, who are expected to attend every day at the client's site to justify the extra cost. This is what finished my career off as my health just can't cope with being a man in a suitcase, including all the travel, **** food and stress. They'll be expecting people in wheelchairs etc.

What I'm hoping for is a more general support role where the chief skill is being able to talk to irate people who have a problem with your product. In my last few roles I learnt that particular skill so that's what I'm really counting on now.

Always good to talk as they said in the BT advert 🙂

Julian