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.

Bluebell21

Hi @2ManyBoxes Welcome to the Community. I hope you enjoy your time on the Community. Any questions just ask.

I am sorry I am not able to answer your question regarding getting a job. I hope another member will be able to.

Have a look round and join in when you are ready.

Take care.

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

Santosha12

Hi @2ManyBoxes I'm sorry I can't exactly answer your questions re jobs etc. but just a couple of thoughts for you from my experience (I have IBS (M)) and 2 other intestinal problems that affect me daily and long covid plus many health issues since Covid that led to my dismissal 18 months ago.

I'm a member of the IBS Network, they also advise on benefits and work (reasonable adjustments etc) and have a helpline run by specialist nurses. They've been brilliant but I'm at the stage now where I don't think any of mine are 'fixable', just waiting for another consultant gastroenterologist appt. I've not had nhs approved hypnotherapy which is supposed to help but not offered/funded where I am, can't travel to be referred elsewhere but is that something you would be interested in/a conversation with your GP.

I've been on Omeprazole for c 12 yrs (proton pump inhibitor) that's helped a lot. Have been took off it/switched to Famotidine which caused major problems/emergency a and e admissions and now back on Omeprazole thankfully (I had 'nutcracker oesophagus' that mimics cardiac pain from rebound acid after Omeprazole was stopped by GP suddenly).

I'm not ignoring what you've said about your treatments so I apologise if my post doesn't help but happy to answer any questions if you do have any.

Someone more experienced here might advise you on LCWRA and PIP in the event you are too unwell to work or are able to work but only limited hours, I do not work now and receive both, the latter on standard rate for daily living. These have ensured I survive financially. I think they are only prior to retirement age. I do hope you find the answers you're looking for on here. Scope also have a helpline and thise I've spoke to are very helpful and knowledgeable. All the very best to you and take care.

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

Santosha12

@2ManyBoxes Thanks for your reply Julian, it made for interesting reading.. IBS (syndrome)... maybe I've become too cynical but when other tests have been exhausted and negative, IBS is the fallback position for a diagnosis of sorts. I was diagnosed by bowel consultant after numerous tests, mainly 5 colonoscopies which I was then also diagnosed with severe diverticlar disease (had diverticulitis c 13 times now in 2 years/antibiotics every time, sometimes two lots needed) resulting in 22 sickness absences in 2 years, dismissed from nursing job. My consultant said you've got IBS as well and just need to learn to live with it.

I asked GP for referral for 2nd opinion as my Calorotectin levels were always high indicating Crohns or Ulcerative Colitis (I don’t drink alcohol or eat foods known to cause inflammation) but was told covid can get in the biwel causing long term inflammation. My suspicion is its microscopic colitis but I cannot prove that. My new consultant gastroenterologist suspected bile acid malabsorption so was referred to the Nuclear Medicine dept for tests but they were normal.

But a SEHcat scan showed structural abnormalities and an MRI damage to the small intestine as well. The latter led to me being wrongly diagnosed with Coeliac Disease, was on a gluten free diet for 4 months until I was informed it was an incorrect diagnosis as it can only be diagnosed from a Gastroscopy - my Gastroscopy was normal.

THEN (so sorry this is long and is even sending me to sleep 😴 💤 writing it )..... I went on a Low Fodmap diet for a year, reintroducing foods very strictly, it made no difference. Because I spent c 1,000.00 on taxis to appts, then ran out of money and decided to eat every other day..... continued.…🤭🤣

Santosha12

@2ManyBoxes My Omeprazole was prescribed years ago but for GERD and i have a low dose 10mg daily, i think it was 40mg a few years ago.

The Famotidine which I was swapped onto because of dangerously low magnesium should not really be prescribed if on Citalapram (anti- depressant), this change at Christmas caused pretty serious heart arrhythmias 🙄😬 with a heart rate of 145 and another hospital admission.

Basically, there's been so many mistakes with medication and the worst one was being prescribed Indapamide a diuretic early Dec for high BP which stripped my potassium and magnesium (causing hospital admission) and ignoring the fact that going to the loo so many times left me dehydrated and low electrolytes surprise surprise.

The end result of all that and especially the Indapamide is I lost 30% of kidney function (will know soon if permanent but is looking likely its damaged the nephrons), had pneumonia at Christmas which wouldn't have helped kidneys, hospitalised 🥲and then became double pneumonia. Just recovered from that so took 7/8 weeks but oxygen drops to 86% still when I move around for 10mins.

It's all just been a perfect storm really. Apart from osteoarthritis, I had nothing wrong with me before Covid and now apart from mobility, lungs and bowels there's around another 15 things wrong I've been diagnosed with. Life is a laugh a minute 🤣. I wont allow my medications to be changed again without me giving it a detailed analysis!! I have my small dogs that keep me on the right side of sane. I was moved to a HA bungalow 2 yrs ago so I'm very grateful for that and consider myself lucky to be here at all!

I hope this hasn't depressed you or anyone reading it; some days I'm still shocked at what happened and still struggle to adapt to a new way of being, I miss my job which I loved, only qualifying 12 years ago after a career in HR previously.

This group/Scope have been brilliant as have the IBS Network and The ME Association who now deal with Long Covid. I do have moments/small short flashes of great inspiration and mental strength when I think I can do anything, including working again, then within 20 minutes the shocking fatigue hits and I'm out like a light. Covid has a lot to answer for. You wouldn't know it from the above but I actually still have a reasonable sense of humour and love music which my dogs do too so not all bad! 😊 I hope you have a good evening.

Santosha12

@2ManyBoxes oh just remembered another charity who've helped me is GUTS UK, in fact, it was them who suggested I should ask consultant about Bile Acid Malabsorption which I did/had test although it was negative.

I am racking my brains for answers regarding the type of work you do of application support/software development and will let you know if I get any ideas that might help you at all.

Santosha12

@2ManyBoxes I've just found 'Careers with Disabilities' in UK (sorry, I know you do not describe yourself as having disabilities as such, but rather ill health). I only did very quick look, Castle Point (council) in Essex for example, have IT/software type role. But will have a proper think of agencies.

Bluebell21

Hi @2ManyBoxes I have Ulcerative Colitis which I have had for many years. Ulcerative Colitis is Characterised by Chronic Inflammation caused by immune systems reactions. It is an autoimmune Disease. I am on medication for this and also take steroids when I have a flare up. I also have a large Hiatus Hernia and I take Omeprazole for this. My symptoms were made much worse when I had my gall bladder out 18 months ago. With the help of my Consultant and GP we now have it under control most of the time.

I have to be very careful what I eat and tomatoes are a no no in any form as are onions. No fried or spicy food.

When I was first diagnosed I kept a food diary to help identify what food made my symptoms worse. I do not drink alcohol or coffee or anything fizzy.

I have a Radar key and check where any toilets might be before I go anywhere new.

I do hope you are able to find a job.

Take care.

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

Santosha12

@2ManyBoxes Since all the prescribing 'errors' one GP at my surgery has been brilliant and the GPs' pharmacist so I know who to see now. I've realised now that with so many comorbities, it's too much to untangle effectively at a 10 minute appt so I have to be super-focused to help. My main focus now is on bloods which are done every couple of weeks because of magnesium supplements and kidney issue, in particular my eGFR which shows the effectiveness of my kidneys.

I'm probably the patient from hell. I try not to be but have experienced the consequences of errors. My first colonsocopy was at a hospital during Covid year, never got my results after 8 months so referred to a different hospital for another.

My last colonoscopy was actually very funny. I had arranged prior to have pain relief injection plus sedation plus entonox plus that they use a paediatric scope/all agreed with consultant who was doing it himself. On the day they seemed to think I was only having sedation nothing else that had been agreed. I got off trolley said I'm going home then. They then agreed all the above. The consultant was saying something that made me laugh. A lot. He was telling me off for laughing as it could damage his camera which made me almost have hysterics, I remember saying well stop making me laugh then, then they tried to get the mask off me as I was on that gas and air for the hour the procedure took but I wouldn't let them, I was super-strong and chewed into the mask at times ha ha. Little wonder he discharged me 🤣 he was a 😇 really.

I had refused to have that last one done, thank goodness I did it though as two polyps found/removed that he said would have been cancerous in a couple of years which surprised me so lucky, and grateful to him too in being persistent.

Good luck Julian with your job search; maybe the 'good' legacy from Covid is still the opportunities to work from home that wasn't so common before. All the very best to you too.