• Hi all and welcome to TheWoodHaven2 brought into the 21st Century, kicking and screaming! We all have Alasdair to thank for the vast bulk of the heavy lifting to get us here, no more so than me because he's taken away a huge burden of responsibility from my shoulders and brought us to this new shiny home, with all your previous content (hopefully) still intact! Please peruse and feed back. There is still plenty to do, like changing the colour scheme, adding the banner graphic, tweaking the odd setting here and there so I have added a new thread in the 'Technical Issues, Bugs and Feature Requests' forum for you to add any issues you find, any missing settings or just anything you'd like to see added/removed from the feature set that Xenforo offers. We will get to everything over the coming weeks so please be patient, but add anything at all to the thread I mention above and we promise to get to them over the next few days/weeks/months. In the meantime, please enjoy!

Another disservice by the NHS.

Pinch

Old Oak
Joined
Jul 22, 2014
Messages
2,858
Reaction score
58
Location
Llangollen
This is a bit of a delicate subject and without going too far into the depths, I have recently learnt there has been a ‘disservice’ by the NHS at my expense.

The short story is: Five years ago, I was diagnosed with an apparently rare disease called ‘collagenous colitis’, which causes inflammation of the colon and colon’s lining. The diagnosis was made after a series of tests including a colonoscopy and biopsy of my colon. The consultant told me there is no cure, but it should stabilise and not get any worse with medication. But, if it worsens, I would be looking at possible surgery. He also told me there would be a follow-up with prescribed medication to ease the discomfort and inflammation.

As the weeks and months went by, I heard nothing and I just got on with life. I somehow got into my head to simply deal with it the best I could and just get on. I was still going to my local GP’s surgery on occasions with stomach pains and other symptoms. There was no mention of my diagnosis from the GP. I did tell the GP on a few occasions that I was diagnosed with collagenous colitis by the gastroenterologist, but my GP's records were showing the results of my colonoscopy and colon biopsy as ‘Normal’. I questioned this but the GP assured me all was okay – just a common bout of IBS and that I simply had to learn to live with it.

After a few years had gone by, my symptoms gradually got worse. Symptoms are stomach pains & cramps, hot flushes, diarrhoea around 5-7 times a day starting from anytime between 4-5am onwards, occasional bleeding, fatigue, losing more energy week-by-week and an overall feeling of ‘can’t be bothered to do much’. In the last months to a year, my condition worsened even more, so much so, I went back to my GP (different GP now). I tried to explain to the doctor how miserable my life has become with constant fatigue and diarrhoea which had now been going on for years. The doctor then arranged more referrals including back to the gastroenterologist, the dietician (which was a waste of time) and now a neurologist (for other symptoms which could be related) which is now set for next month.

I went to see the gastroenterologist again on the 6th October (a couple of weeks ago) and he was about to arrange another colonoscopy, when he suddenly realised by my notes that I had this procedure 5 years ago with a diagnosis of ‘collagenous colitis’. He then asked me what drugs I’ve been taking during the last 5 years. I told him I haven’t had any drugs. His jaw dropped and he told me his department contacted my local surgery 4 times 5 years ago with the prescribed medication. There-and-then, he put me on a high dosage steroid (Budesonide) for 9 weeks and another high dosage inflammatory tablet (Mesalazine) for the rest of my life. This is when he said on two occasions, there has been a disservice here. I now have the ‘upper gastrointestinal endoscopy’ coming up (no date yet) and the appointment with the neurologist next month. Also, after yesterday’s events (without going into detail) and a special visit to the GP, I am now being referred for another colonoscopy as well.

I’ve been on the steroids and the other drug for almost two weeks now and my symptoms have improved with energy levels rising a bit, not on the loo as much and stomach pains have eased – until yesterday; hence, special visit to the GP’s surgery.

In the last months/year, my symptoms have gradually got worse with consistent diarrhoea 5-7 times daily starting from 4-5am onwards, occasional bleeding, hot flushes, very little energy, very little motivation & focus to do anything, almost crippling stomach pains on occasions, discomfort with walking on occasions and an overall feeling of tiredness and fatigue.

I don’t want to sound ungrateful because we’re fortunate to have the NHS and they do a lot of good work, but... I have recently learnt I have suffered these symptoms for the last 5 years unnecessarily, and, if I started the drugs 5 years ago, my condition would have had a much better chance of stabilising.
My GP is now on the case and she has promised me “We will get to the bottom of this!” I did smile when she said that and I replied “Thanks, and I forgive the pun!”

I obviously don’t know who’s at fault here. If the Gastroenterology Department contacted my local surgery on 4 occasions 5 years ago with a prescription, why wasn’t it followed through by my GP? Why does my local surgery’s records show my biopsy result as ‘normal’ when a diagnosis of collagenous colitis was confirmed by the Gastroenterology Department?

I’m aware the NHS are making life changing mistakes all the time (some worse than others) for various reasons which is unacceptable, but when their mistakes affect your own personal health, it’s real.

In the last week or so, a few people have mentioned to me that this could be a possible case of a claim against the NHS. This hasn’t entered my head until it was put to me, and now, I’m actually considering making enquiries to see if there is a possible claim. But to be honest, I’m in mixed feelings. If there was a claim on the table and it was successful, a compensation for loss of earnings and poor health would be something.

What would you do?

A tricky question I know, but my head is fighting my heart and visa-versa.
 
Sorry to hear of your troubles Pinch. Darren Fletcher, ex Manchester United player suffers with the same thing and it nearly ended his football career a few years ago. Luckily treatment has stabilised it enough for him to be able to continue.

Very difficult situation you find yourself in. I personally despise the litigation culture that has crept in evermore rapidly over recent years or 'where there's blame there's a claim', but in this instance your health has been badly affected by a cock up either by either the NHS Gastro team or your GP. Finding out where that might have come in will no doubt prove difficult but even if you were not of the mind to go for a cash recompense, at least finding out where the failure is might give some peace of mind.

Personally I don't know what I would do, in the same way you are struggling with it, but good luck with whatever path you choose.

Cheers
Mark
 
Pinch,

That's an absolute bugger! Bloody livid that you've had to live with that for so long, and pleased to hear you're getting some relief.

I had a situation many years ago where my ex M-i-L , chronically arthritic, a frail little old lady, and in her late 70s, had to have a knee replacement. The outcome was that they broke her femur in hammering the joint in, didn't know they'd done this and all treatment was based on a healthy convalescence. Well, you can imagine the pain the was in while trying to do physio as well as normal routine.

When it was eventually found out, they moved heaven and earth to help her recover.

I was asked by my EW and her sisters to make representation on the family's behalf to the hospital management, which I did. The aim was not to seek compensation necessarily, but in the case of a large organisations and it's partners, sometimes things do go wrong, as in your case and they have to be investigated so that at the very least, the gaps can be plugged so that the same situation does not happen to someone else.

I hope you can come to terms with it all.

ATB

Malcolm
 
Lost for words Paul. Can only offer sympathy I am afraid and a hope that a easing of the symptoms. I think I would certainly demand a full report and explanation from the GP and then take a view as to litigation.
 
A friend of a friend lost her husband to cancer a while back. She is a nurse. She is now suing the NHS for not diagnosing his initial pain symptoms as cancer. Being an insider she feels the NHS is a soft touch for this sort of thing and expects to win just like all the cases she has witnessed during her career. (not said as bluntly but implied).

So can't advise you what to do but if you sue you will probably win.
 
Jeepers, Paul. I feel for you, my friend.

This phrase screams out at me ..

"His jaw dropped and he told me his department contacted my local surgery 4 times 5 years ago with the prescribed medication."

Why would his department contact your local surgery four times? This implies a closed loop in that his department would be looking for some form of response or acknowledgement from your GP surgery. I have never come across this in the NHS unless a specific question had been asked or some sort of follow-up required. So if they were expecting a reply or response then why was there no backstop in the event of a non-reply? Clearly there is some failure/inadequacy in the end-to-end procedure and, if it were me, why I would be pursuing this - if only for the common good. If you were reluctant to take any compensation (but TBH you deserve it considering what you have gone through) then give any compensation to charity. There are several that deal specifically with gastro-intestinal diseases and heaven only knows why there is so little research into this area - the gastro-intestinal tract is still one of the least well-known organs of the body as there is so little funding for it.

The second failure is in the incorrect reporting back to your GP that the results were 'normal'. If indeed that that is what the response said and that your GP surgery is not covering their backsides (no pun intended).
You are perfectly entitled to ask for and see the results sent back from the hospital.

From what position do I say all of this ? Simple. Been there, done it and got the T-shirt. Similar scenario but fortunately not a similar outcome simply because I refused to rely on what the 'system' in its broadest sense was telling me. Similar 'misleading' reports from over-worked GI departments to my GP. I ended up doing all the chasing myself and virtually referring myself back to a consultant for further referral/treatment.

OK...I'm probably pushier that you are...I can get pretty assertive at times..but sometimes needs must.

Budesonide...I was also prescribed that. Excellent..did the business. Just make sure that you taper off the tablets as you will/should have been told. I'm sure that you will. Didn't need any anti-inflammatories as it eventually sorted itself out. By the way, I'm sure you've been told that Mesalazine is one of those drugs that (a) has sightly different formulations (particularly in terms of release) so that it becomes effective t the right place in the gut (b) different manufacturers mesalazine can work in different ways and so your treatment/effectiveness can depend on brand.

From a natural complementary perspective, in my research I came across two products that had very good reports in terms of reducing the symptoms. One was 'Heather's Tummy Fibre' (I kid you not but that is its name but don't be put off by it) and the other Flax Seed (Linwoods a recommended brand)...all to do with the balance between soluble and insoluble fibre. Most websites fail to differentiate between the two.

I am also a great believer in very high dosage of a good brand (Cytoplan, for example) of Vitamin E.

Also research both drugs on the American websites as often they will give sometimes critical information that the PIL (Patient Information Leaflet) omits...quite why I do not know.

You are very welcome to PM me or call me in confidence.

EDIT: I am not a subscriber to the idea of long-term medication. You might like to ask your consultant/GP that you hang fire before taking the mesalazine to see what effect the budesonide does. It would be great for you if the budesonide clears it up without having to go long-term on the other.
 
Sorry to hear of your problems Paul but can't help thinking that you are partly to blame for not following things up especially for all that time.
Every time I've had hospital treatment/investigations I've come out with a copy of the discharge letter - the original sent to my GP. And if I've been prescribed new drugs I write to my GP (enclosing a copy of the hospital letter) asking that they be added to my repeat prescription.
And every time I've had a phone call back from the GP, a little chat on how I was getting on and "of course the new drugs would be supplied".

Rod
 
I don't know Rod .. I've given up with my GP

Similar symptoms for about 4 yrs

Twice last week I slept for 14 hrs straight and still woke up exhausted !
This is the 1st day in a few weeks were I feel I can actually do a good days work (and catch up! )

I suspected gluten, after keeping a food diary .. GP said not celiac, but didn't really know much about it, and also said "Non celiac gluten sensitivity" was a made up phrase .. no such thing !

1st GP .. I'd made a list of symptoms .. it seemed my 10 minutes were up ..
a few months later I saw a different GP (same practice) she looked at my notes from my last visit, and they just said back pain (which I've had for about 20 yrs) no mention of anything else.
Her usual answer to everything is .. "Are you stressed?" .. "maybe get a different job" ! yeah, cause it's that easy !
I explained again how bad I was feeling .. she said maybe lung cancer and sent me for an Xray !

I've been self medicating for a while now, just to get through day to day .. unbranded imodium before bed, so I can mostly sleep though.
Cocodamol in the morning seems to settle my stomach and slow things down.
Careful what I eat .. haven't eaten out or had a takeaway for 3 yrs (last chinese I had I couldn't function for about 3 weeks), and not drunk beer for 2 yrs .. real ale used to be my favourite thing !
I read all the labels on food .. but it seems I sometimes get caught out.

So I can see why it's easy to not follow up, as they don't seem to do anything

I hope you feel better soon Paul, and am glad you are getting treatment :-)
 
Rich...the first GP you saw was a Grade 1 pillock and hadn't got the faintest idea about coeliac disease. There is a test for coeliac disease...he/she should know about it. Not 100% accurate but a good starting point.

You can self-help. Rigorously ONLY ONLY ONLY eat freshly prepared food that you have control of the ingredients. Do NOT eat ANY prepared food. The list of ingredients only lists stuff that are in above a certain level. There are also other things that they stuff in such as xanthan gum and guar gum in lieu of wheat to give a longer shelf life. They will affect a coeliac just as much. So will soya lecithin. Obviously no buns, bread, biscuits, cake, pastries, beer (sorry). Even using gluten-free flour. Not for the first six months, at least, until you get back on a more even keel.

Seriously....it's GOT to be desert island tactics for you to (a) prove that it is coeliac disease (and sounds very much as if it is) and (b) start to flush out of your body all the toxins etc that are making you feel crap. Beware - once you have got on an even keel - and believe me you will - then you will find that the slightest amount of gluten or any of the other substances I mentioned will have a much quicker affect simply because your body has become more sensitised. A moments weakness will set you back ages. Fight it. It IS worth it. Living with my coeliac wife, we know all about it. She could write a book.

I also had a crap GP...long story short...failed to recognise that I had giardiasis even though I'd told him that I'd spent effing Christmas Day looking at my stool samples - in between dashing to the bog - until I found the little buggers "Are you qualified to recognise them ?' Grade 1 a*hole. Diagnosed by my mate who was a doctor in the TA for a while and his comments were "Most GPs wouldn't know giardiasis if it bit them. I saw more cases in the short time I was in Bosnia then they will see in a lifetime." So I self-medicated with a private prescription for Metronidazole off the web. Sorted.

But I'd let myself get very dehydrated. Forget colour of urine. Forget the skin pinch test. Not indicative. But I really felt like s**t. GP not interested. Happened to see my mate for a pint. He told me in no uncertain terms to either go back to my GP or A&E the next day. Without fail. So I went to A&E, obviously. 1.5 litres of IV saline and it was like lightswitch going off inside me. Sorted. I owe my mate big time. He saved my kidneys.

Had to see my GP a few weeks later and told him. "Oh yes" he said "I saw you that morning and thought you looked a bit rough". Did I say he was a Grade 1 a*hole ?

He retired, thank God.
 
Yeah, I tried to educate my GP that I hadn't been eating gluten for a while so the test wouldn't work .. it doesn't make any difference, she said .
I've read that 13yrs is the average time to get a coeliac diagnoses !

I've read lots about it .. didn't know about xantham , that was added to the cupbaord when I stopped having gluten
I don't drink coke .. or put malt vinegar on my chips etc etc.

I think my biggest obstacle is I am the main cook for a house that eats gluten !
I can't tell if my wifes pasta is cooked just right ......
or tasting anything with ingredients such as soy sauce is a no no

I have my own frier and pots and pans.

We live on the edge of the canal, and I even wash my hands after feeding bread to the ducks, and try not to breath it. hmmm .. and bread crumbs everywhere ! lol

trouble is, it's too easy to not be careful , when you've been feeling well for a while !

The best I feel, is after I've been i'll enough that you get too scared to eat for a few days ! lol .. and that's never a good thing
 
Bt the thing is....your doctor does the test and says 'Yes, you are coeliac'. But you already know that! There is no medication. Just a rigorous diet. I'm trying to think if there are any other 'gotchas' that my wife discovered. If I remember any more I'll let you know.
 
ta
I looked at the website, uk and american a lot when I 1st started learning about it.

I've never really got on with the gluten free breads .. better just not to have bread.
But I still have the odd GF 4 pack of Pita when I am feeling better and think at least I am eating something.


as for the test .. you can have coeliac and the (blood) test be negative.

When I am i'll , I rack my brains and question everything .. even that it's nothing to do with gluten at all... but if I really thought that I'd be drinking beer again ! lol

hmmmmm ... Beeeer !!!
 
Wow! Chaps, thanks for the comments. Roger, you should be a doctor chap - 1st class matey and thank you!

After yesterday's normal and congealed bleed, I phoned the local surgery and they called me in - I know I've already mentioned this bit, but yesterday turned out to be another day of pretty much nothingness. I was too tired to do much. Today wasn't much better. This morning, I phoned the hospital for advice on why I was clearly bleeding internally and I left a message with the consultant's secretary. I've been out here-n-there and I tried going to the shop to do some work, but I ended up just sitting there doing nothing - I couldn't be bothered, so I came home again. Later this afternoon, the consultant's nurse phoned me and after a long conversation, the consultant has now instructed me to leave off the Mesalazine until I've completed the steroid course (7 weeks remaining) before picking up the Mesalazine again. He believes the combined meds have caused the bleeds, which incidentally, have occurred in two separate parts of my bowel - lower and higher. I really must try and get in a day's work tomorrow. :|
 
TrimTheKing":jfexblyt said:
Sorry to hear of your troubles Pinch. Darren Fletcher, ex Manchester United player suffers with the same thing and it nearly ended his football career a few years ago. Luckily treatment has stabilised it enough for him to be able to continue.

Very difficult situation you find yourself in. I personally despise the litigation culture that has crept in evermore rapidly over recent years or 'where there's blame there's a claim', but in this instance your health has been badly affected by a cock up either by either the NHS Gastro team or your GP. Finding out where that might have come in will no doubt prove difficult but even if you were not of the mind to go for a cash recompense, at least finding out where the failure is might give some peace of mind.

Personally I don't know what I would do, in the same way you are struggling with it, but good luck with whatever path you choose.

Cheers
Mark

Cheers Mark - I really appreciate your words. I'm still undecided, but I am leaning more towards a direction. 8-)
 
Pinch":3frttorg said:
.... Later this afternoon, the consultant's nurse phoned me and after a long conversation, the consultant has now instructed me to leave off the Mesalazine until I've completed the steroid course (7 weeks remaining) before picking up the Mesalazine again. ..|

I'm delighted that my diagnosis has been of help! ;) Fingers crossed for you.
 
Malc2098":18i1y3io said:
Pinch,

That's an absolute bugger! Bloody livid that you've had to live with that for so long, and pleased to hear you're getting some relief.

I had a situation many years ago where my ex M-i-L , chronically arthritic, a frail little old lady, and in her late 70s, had to have a knee replacement. The outcome was that they broke her femur in hammering the joint in, didn't know they'd done this and all treatment was based on a healthy convalescence. Well, you can imagine the pain the was in while trying to do physio as well as normal routine.

When it was eventually found out, they moved heaven and earth to help her recover.

I was asked by my EW and her sisters to make representation on the family's behalf to the hospital management, which I did. The aim was not to seek compensation necessarily, but in the case of a large organisations and it's partners, sometimes things do go wrong, as in your case and they have to be investigated so that at the very least, the gaps can be plugged so that the same situation does not happen to someone else.

I hope you can come to terms with it all.

ATB

Malcolm

Cheers Malc, yep, it's been a complete swine, but probably like most us us chaps, we tend to just get on with things without the fuss - or at least, until it catches up with us.

Glad she got sorted and top marks for representing. 8-)
 
Andyp":337bbrwb said:
Lost for words Paul. Can only offer sympathy I am afraid and a hope that a easing of the symptoms. I think I would certainly demand a full report and explanation from the GP and then take a view as to litigation.

Cheers Andy, sound advice - much appreciated chap. 8-)
 
Robert":twmmq03l said:
A friend of a friend lost her husband to cancer a while back. She is a nurse. She is now suing the NHS for not diagnosing his initial pain symptoms as cancer. Being an insider she feels the NHS is a soft touch for this sort of thing and expects to win just like all the cases she has witnessed during her career. (not said as bluntly but implied).

So can't advise you what to do but if you sue you will probably win.

Cheers Robert, that's very sad. One of my mate's sister lost her 6 year old to the NHS making an act of terrible neglect.

Yes, I may well be going down that route.
 
RogerS":wrbriutp said:
Jeepers, Paul. I feel for you, my friend.

This phrase screams out at me ..

"His jaw dropped and he told me his department contacted my local surgery 4 times 5 years ago with the prescribed medication."

Why would his department contact your local surgery four times? This implies a closed loop in that his department would be looking for some form of response or acknowledgement from your GP surgery. I have never come across this in the NHS unless a specific question had been asked or some sort of follow-up required. So if they were expecting a reply or response then why was there no backstop in the event of a non-reply? Clearly there is some failure/inadequacy in the end-to-end procedure and, if it were me, why I would be pursuing this - if only for the common good. If you were reluctant to take any compensation (but TBH you deserve it considering what you have gone through) then give any compensation to charity. There are several that deal specifically with gastro-intestinal diseases and heaven only knows why there is so little research into this area - the gastro-intestinal tract is still one of the least well-known organs of the body as there is so little funding for it.

The second failure is in the incorrect reporting back to your GP that the results were 'normal'. If indeed that that is what the response said and that your GP surgery is not covering their backsides (no pun intended).
You are perfectly entitled to ask for and see the results sent back from the hospital.

From what position do I say all of this ? Simple. Been there, done it and got the T-shirt. Similar scenario but fortunately not a similar outcome simply because I refused to rely on what the 'system' in its broadest sense was telling me. Similar 'misleading' reports from over-worked GI departments to my GP. I ended up doing all the chasing myself and virtually referring myself back to a consultant for further referral/treatment.

OK...I'm probably pushier that you are...I can get pretty assertive at times..but sometimes needs must.

Budesonide...I was also prescribed that. Excellent..did the business. Just make sure that you taper off the tablets as you will/should have been told. I'm sure that you will. Didn't need any anti-inflammatories as it eventually sorted itself out. By the way, I'm sure you've been told that Mesalazine is one of those drugs that (a) has sightly different formulations (particularly in terms of release) so that it becomes effective t the right place in the gut (b) different manufacturers mesalazine can work in different ways and so your treatment/effectiveness can depend on brand.

From a natural complementary perspective, in my research I came across two products that had very good reports in terms of reducing the symptoms. One was 'Heather's Tummy Fibre' (I kid you not but that is its name but don't be put off by it) and the other Flax Seed (Linwoods a recommended brand)...all to do with the balance between soluble and insoluble fibre. Most websites fail to differentiate between the two.

I am also a great believer in very high dosage of a good brand (Cytoplan, for example) of Vitamin E.

Also research both drugs on the American websites as often they will give sometimes critical information that the PIL (Patient Information Leaflet) omits...quite why I do not know.

You are very welcome to PM me or call me in confidence.

EDIT: I am not a subscriber to the idea of long-term medication. You might like to ask your consultant/GP that you hang fire before taking the mesalazine to see what effect the budesonide does. It would be great for you if the budesonide clears it up without having to go long-term on the other.

Wow Roger and cheers matey. 8-) I read all of this earlier before signing in and I can honestly say I was taken back by your experience and knowledge with this stuff. I need time to take everything in as my brain is somewhat slower these days, but you make complete sense and I wrote an update earlier that after getting in touch with the hospital, I've now been instructed to leave off the Mesalazine until I've completed the course of steroids. I'm fuming! The more I think of the last year to the last 5 years makes me quite emotional - mixture of anger and relief.
 
Rod":3rac4722 said:
Sorry to hear of your problems Paul but can't help thinking that you are partly to blame for not following things up especially for all that time.
Every time I've had hospital treatment/investigations I've come out with a copy of the discharge letter - the original sent to my GP. And if I've been prescribed new drugs I write to my GP (enclosing a copy of the hospital letter) asking that they be added to my repeat prescription.
And every time I've had a phone call back from the GP, a little chat on how I was getting on and "of course the new drugs would be supplied".

Rod

Cheers Rod. I had my reservations in not writing anything because of what you're going through and I am so glad the NHS are looking after you well.

Yes, you're right, but although I didn't mention above in great detail, I did leave messages with the Gastro Dept on 2-3 occasions shortly after my diagnosis meeting with them 5 years ago. I think this is why they tried contacting my local surgery 4 times - in reply to my left messages, but I don't know that for sure, like I also don't know if they actually tried making contact at all. I really don't know. When my ex GP told me their record was showing my result as 'Normal' and that I have common IBS - "you've just learn to live with it" - that's exactly what I did, I got on with life learning to live with it. But years later, enough is enough.

I haven't even got a 'copy letter' from my recent meeting either.
 
Tusses":mw0563oo said:
I don't know Rod .. I've given up with my GP

Similar symptoms for about 4 yrs

Twice last week I slept for 14 hrs straight and still woke up exhausted !
This is the 1st day in a few weeks were I feel I can actually do a good days work (and catch up! )

I suspected gluten, after keeping a food diary .. GP said not celiac, but didn't really know much about it, and also said "Non celiac gluten sensitivity" was a made up phrase .. no such thing !

1st GP .. I'd made a list of symptoms .. it seemed my 10 minutes were up ..
a few months later I saw a different GP (same practice) she looked at my notes from my last visit, and they just said back pain (which I've had for about 20 yrs) no mention of anything else.
Her usual answer to everything is .. "Are you stressed?" .. "maybe get a different job" ! yeah, cause it's that easy !
I explained again how bad I was feeling .. she said maybe lung cancer and sent me for an Xray !

I've been self medicating for a while now, just to get through day to day .. unbranded imodium before bed, so I can mostly sleep though.
Cocodamol in the morning seems to settle my stomach and slow things down.
Careful what I eat .. haven't eaten out or had a takeaway for 3 yrs (last chinese I had I couldn't function for about 3 weeks), and not drunk beer for 2 yrs .. real ale used to be my favourite thing !
I read all the labels on food .. but it seems I sometimes get caught out.

So I can see why it's easy to not follow up, as they don't seem to do anything

I hope you feel better soon Paul, and am glad you are getting treatment :-)

Cheers Rich. Crikey, you're in the wars too! Fortunately for me, it hasn't mattered what my diet has been, there were no changes whatsoever. I even stopped having my beers at the weekend for 6 months a few years back and there were no changes at all. I've tried various diets including, dried food, wet food, bland food, spicey food, all sorts - made no difference to me.

I never even thought I was ill. Yes, not feeling good and going to the loo lots and lots from the early hours through to the late evening, bad stomach pains etc etc - I just got used to it and got on with things without moaning about it, but I have never really accepted I was actually 'ill'. And now, I realise I am actually ill. Although, things will start to improve over the coming weeks and months - hopefully. 8-)
 
RogerS":31aciowo said:
Pinch":31aciowo said:
.... Later this afternoon, the consultant's nurse phoned me and after a long conversation, the consultant has now instructed me to leave off the Mesalazine until I've completed the steroid course (7 weeks remaining) before picking up the Mesalazine again. ..|

I'm delighted that my diagnosis has been of help! ;) Fingers crossed for you.

Yep, top marks mate! I shall read through everything again later.

:text-bravo:
 
I'd just like to say Thanks Pinch and Rog ...

I'm having a rubbish day (after a good day yesterday) .. and it is kind of comforting to know it's not just me

I've been messaging and emailing and invoicing, trying to catch up, and yet to cut a single thing .. but I need to, so the day is not over yet ...
It seems like a message I thought arrived a day or two ago, was really a week or two ago :shock:

Orders need to go out in post tomorrow ...........
 
Rich, ditto matey. I've been the same all day as well. It's not good is it. :|

I think I'm on a withdrawal since stopping the Mesalazine yesterday evening. I have been so flat all day and you've actually done more than me today so well done chap! 8-)

Apart from feeling very tired, I've been feeling light headed and as if I'm walking through treacle all day, and still do. I actually went up into the crow's nest at work and went to sleep for most of the afternoon.

I'm just praying these symptoms aren't the side effects from the steroids, because if so, I have another 7 weeks of this. :|
 
I don't know about you, but I really don't know what to do yet. Like you, I'm in the middle of a job and I'm way way behind with it. I really tried again today to do the 'mind-over-matter' thing, which I've been doing for ages now (probably like yourself), but it isn't just about physically doing the work, I just can't focus without making mistakes. My mind is a mess and worn out. :| :|

We must try again tomorrow - tomorrow will be good!! 8-)
 
Pinch":v7ds7nis said:
.....
I'm just praying these symptoms aren't the side effects from the steroids, because if so, I have another 7 weeks of this. :|

You did read the PIL, I hope ?

And Google Budesonide ??
 
even though I haven't got a diagnosed .. Celiac (coeliac) call it "Brain Fog"

Yes, I can sit down and think "what to do today" .. and the next thing I know, several hours have passed !

I think about a job I should have quoted yesterday .. look at the paperwork, and it was a week or so ago ..
Then the more than to often "Sorry for the delay in replying" message :-(
 
Rich, me again chap. I've actually shed the odd tear with the frustration and feelings of inability to do anything - I have felt ashamed and embarressed and guilty as if I'm a lazy plonker. I did a bit today, especially after feeling quite buzzy last week when the drugs were kicking in. But mate, there is nothing to feel bad or shameful about, it is simply the way it is and it isn't our fault.

Onwards and upwards chap... onwards and upwards.

I'm not going to let this darn illness grind me down.

:text-bravo:
 
Tusses":olc76aeh said:
even though I haven't got a diagnosed .. Celiac (coeliac) call it "Brain Fog"

Yes, I can sit down and think "what to do today" .. and the next thing I know, several hours have passed !

I think about a job I should have quoted yesterday .. look at the paperwork, and it was a week or so ago ..
Then the more than to often "Sorry for the delay in replying" message :-(

I'm very similar. I don't know the best thing apart from keep fighting it, but for how long, I don't know. Do you get some days where you do a decent'ish day's work and then, pretty much nothing for several days?
 
yes .. if I am really strict with my diet .. then I get to feel "useful" for a bit .. but if I get .. what they call "glutened" .. then it can be a couple of weeks to recover. (and I'm still not 100% convinced it's gluten, but it's something!)

I am thinking I will have to try FODMAP .. but that REALLY doesn't sound appealing at all ! I like tasty food !

Tonight, I hope I "can't" sleep through.. so I can get up early and catch up a bit before I can crash again, and try and catch up over the weekend !


It's seems to be more like .. work when I can, sleep when I can't .. and what happened to the rest of life ! ?
 
This is one area where I'm not affected - my diet. I can eat/drink anything and the symptoms are no different and my appetite is very healthy. I also haven't lost weight in all of this, I've actually put weight on in the last 5 years - middle age spread probably. It sounds like your condition/illness/disease (whatever) is far harder to manage than mine. Rich, which symptoms would you say affect you the most? With me, I got used to going to the loo a lot and I got to the stage where I didn't care where I was or who I was with; a restaurant, someone's house, a pub or anywhere public, but, the big one for me was/is the constant feeling of fatigue, tiredness, not bothered to do much, and ultimately feeling very low and depressed.

I have other strange symptoms which might be related, I don't know yet, but I guess the neurologist will find out in good time. I struggle to focus on a sentence for the first time. I can see the words clearly, I just can't put the words together in the correct order and I have a mental block. In the last months, my speech has started to to slur a bit and I dribble ( :lol: easy, easy...), I fumble around a bit when picking things up and often drop them, pins & needles in my finger tips, and I can't stand high pitched squeaky noises like cutlery on crockery - I'm an absolute nightmare in a restaurant you know. Oh man, the list goes on... But, some of this could be related to the bowel disease. 8-)
 
RogerS":2i1p79wx said:
Pinch":2i1p79wx said:
.....
I'm just praying these symptoms aren't the side effects from the steroids, because if so, I have another 7 weeks of this. :|

You did read the PIL, I hope ?

And Google Budesonide ??

Yes, Mrs P has read the paperwork and the side effects are horrendous. I'm starting to perk up a bit during the course of this evening, so I hope this is the withdrawal. Fingers crossed all is going to be good tomorrow.
 
I've always had a problem with my head being too fast for reading .. etc .. I think we've touched on this on the other forum.. I have to read things a few times to get anywhere close to what it actually says ! .. and then getting a few pages through and realizing you haven't a clue what you have just read ..

also I've read that the bowel system has it's own neural network, separate from the brain .. and any disruption can affect mood and function ..

For me , worst is the huge fatigue.
Next Concentration .. can't think how to pick up a piece of wood, let alone what to do with it once I have !
It's crazy .. and I guess no one else will understand, unless they have felt the same.

after that .. anxiety .. when you realize what is going on, you are sooooo behind, but still cant concentrate enough to do anything about it

lastly .. the "odd" clear moments when you can actually function and carry on doing what needs to be done.

then .. repeat !

I also get the speech thing .. but so far I have put that down to being so introverted that I haven't spoken to anyone regularly enough to keep up a fluent conversation .. at least typing this, I can read it and correct before I press "go" !
Even then, sometimes (most times) I can't be bothered to be 100% grammatically correct !
 
Pinch":219gakpw said:
RogerS":219gakpw said:
Pinch":219gakpw said:
.....
I'm just praying these symptoms aren't the side effects from the steroids, because if so, I have another 7 weeks of this. :|

You did read the PIL, I hope ?

And Google Budesonide ??

Yes, Mrs P has read the paperwork and the side effects are horrendous. I'm starting to perk up a bit during the course of this evening, so I hope this is the withdrawal. Fingers crossed all is going to be good tomorrow.


yeahbuttt .. most of the times .. the listed side affects are what you are taking them for in the 1st place !
waddayoudoo ?

like diarrhea tables .. may cause diarrhea

head ache tablets .. may cause headaches !!!
 
co-incidentally Pinch .. you ever had an IQ test ?

I have, and without giving figures, it was high .. and in these kind of circumstances I've found it a dissadvantage
 
I've been asked this before and during my 30's, I was referred to various psychologists and psychiatrists for what was later diagnosed as 'Visual Intrusive Thought' - not as scary as it sounds. I didn't like the psychiatrists that much, they just want to pump you with drugs, but I found the psychology interesting and was seeing a professor of psychology for a year. I took a short/quick IQ test during this time and I was marked 100%. But it was short and not an IQ like a Mensa IQ. I did one online (probably not that strong) and my score was in the 160's, but this was also years ago. I remember the prof telling me the most complex intelligence is creative intelligence, which is logical I think. It's all the peripheral thoughts which go with it. I should think these days, my score would be below average.
 
Yes, I'm similar in those ways too. My spelling and grammar are terrible. I've never read a book in my life - I lose the plot and concentration and I find it difficult to focus. In the shop today, I must have been sat in my chair just staring into nothing for 3 hours or so. I'm not just dreaming, I have all sorts of different thoughts rushing through - a lot of comedy sketches funnily enough. I often burst out in laughter which might look a bit odd to someone looking in. I don't know where the time went. Next thing, my neighbour came in with the news about OFL. I think part of this is the fatigue and not being bothered to do anything, but I've always been a bit like this. I can sit and drift away for ages. I've never been consistent in anything I've done - I've either been a bit manic or not at all. I once wondered whether I was a manic depressive, but I don't think I was and it wasn't suggested by the doctors 20 years ago. But, my illness has made stuff more 'not at all'.

Anyway, I hope you sleep well Rich (or don't sleep and get up early) and tomorrow is a gooden.

:text-bravo:
 
A very silly question, guys, but how much water are you drinking each day? Especially Pinch with the diarrhoea.

I bet you're not drinking as much as you think you are.

Or should be.
 
RogerS":2u66p2t8 said:
A very silly question, guys, but how much water are you drinking each day? .

I've just put slightly less an amount of water as the amount of The Black Grouse whiskey that was in my glass, so in answer to you question Rog, just the right amount. :obscene-drinkingcheers:
 
Doug":30p3sj4i said:
RogerS":30p3sj4i said:
A very silly question, guys, but how much water are you drinking each day? .

I've just put slightly less an amount of water as the amount of The Black Grouse whiskey that was in my glass, so in answer to you question Rog, just the right amount. :obscene-drinkingcheers:

Yebbut, you're not losing it out t'other end faster then you can take it in at the other. :D
 
Back
Top