Following heart surgery five months ago (two more stents fitted to coronary arteries) l was prescribed a very strong anti platelet drug called Ticagrelor.
The alarming side effects to this drug put me in hospital and I lost a lot of blood from both my prostate and a pierced bladder which was damaged when they fitted a catheter very badly.
I had a week of bladder irrigation filling bag after bag of what looked like red wine.
For those of you that are still reading this post (my apologies for those of you who have delicate stomachs) l am now home from hospital very week and anaemic and had to call the Doctor out.
She prescribed Ferrous Sulphate tablets (iron tablets) 2/3 per day, so on Monday I took 3 tablets.
Tuesday, after several hours of stomach pain I went to the toilet and to my horror passed black stools and some blood.
To anyone out there who is still reading this I apologise for the content of this post but assure you that the worst is over.
Got back to my Doctor who tells me that these side effects are common and that pretty much all the iron tablets for aneamia carry the same side effects and pretty much left it at that.
I am having steak for lunch today to help build me up but if there are any anaemia sufferers out there that could advise me the best way to build myself up again I would be very grateful.
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Classicmichael
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Were you not given blood transfusions to replace the blood you lost in hospital? That the iron supplement will cause black stools doesn't surprise me in the least - but I'm a bit alarmed that your GP thinks passing blood is also OK and to be expected. I'd be inclined to call your hospital consultant (or their secretary) and ask for advice, telling them what has happened since.
Mind you - after a story like that I think a call to a lawyer wouldn't come amiss either - that really does sound like a real catalogue of errors. I do hope you feel rather better very soon!
Hi PMRpro, I was told that I would not have to attend any further out patients appointments on discharge which is just as well as the Hospital concerned was voted one of the worst in the UK and was put in special measures.
I probably have a good reason to sue as the report states that bleeding from the wall of the bladder was possibly due to catheter changes.( they put the wrong one in and hours later and in agony they discovered the mistake and at last fitted the correct one in order to start irrigating the bladder, I was in bladder retention (Blood clots prevented me from peeing) for seven agonising hours.
I am not sure if I want to take this further as I don,t know whether a formal complaint will improve the way patients are treated at this Hospital.
I will certainly be taking your advice on building myself up with lots of iron rich foods and ditching the tablets.
I'm inclined to feel taking it further might be a good thing - if you can face it.
Funny - I nearly asked what hospital it was as it sounds awful and should be kicked up the bum.
Keyes has given you some good tips - but above all, insist on being taken seriously if you notice more blood in your stools. If you continue to bleed then you will just keep getting more anaemic. It is possible to have iron injections which do build you up much faster.
Classicmichael, so sorry to hear about your experience, it all sounds absolutely horrific.
Your Dr is right, all iron replacement tablets cause black stools and can make you very constipated as well. There are a few practical things you can do though.
Vit C aids the absorption of iron and tea inhibits it so drink a glass of orange juice or similar with your meals and don't have a cup of tea till at least an hour after you have eaten.
Red meat is probably the best source of iron but don't forget green leafy veg such as spinach, kale and cabbage. Keep yourself well hydrated and use an aperient such as lactulose ( which softens stools ) if you find yourself becoming constipated.
Build yourself up slowly, don't rush to do too much.
It will take a few weeks to recover from the experience that you describe. In the meantime if you have any more evidence of active bleeding then get back on the phone to the Dr.
Hi Keyes, thank you for your very valuable advice on dietary foods etc to build me up, as you can see from my last post PMRpro is also passing on dietary tips I am binning the iron tablets and I am having a nice steak today, tomorrow's menue is liver and bacon with spinach.
I think that this will be slow progress but at least I am home again.
If you are going to stop taking the tablets there is a product called spatone which is basically sachets of iron rich water which you can mix with orange juice. They are gentle on the stomach and fairly effective at helping to replace iron. You can buy them at the well known High St Chemist!
From what you say it sounds like they inserted a normal catheter instead of an irrigation catheter and you went into urinary retention secondary to not being able to pass the blood clots caused by the anti platelet drugs. Did they change your anti platelet drug to something else?
Hi Keyes I certainly will get some spatone sachets it sounds just the thing I need.
You were right about the wrong catheter, basically I clotted up at home after passing first blood followed by large clots and then nothing.
After waiting in A&E two hours an F1 inserted a basic catheter and left me saying I would be taken up to the ward shortly. Another two hours later having been left in a cubicle I caught the attention of a nurse and said I wanted to make an official complaint.
Within minutes a Doctor and nurse arrived and when the Doctor examined me he discovered the wrong catheter was put in.
He asked the nurse to take note of this before putting me through untold agony of removing one catheter and forcefully putting in the two way one, without showing any concern, in fact I had the impression that he was taking out his annoyance on me for calling him away from what he was doing.I imagin my screams were heard throughout the entire hospital.
They did change my antiplatelet drug from Ticadgrelor to prasugrel but they are both nasty drugs that carry a high risk of excessive bleeding.
All I can say is thank goodness I,'m home.
Thanks for letting me whinge and get it off my chest.
After that catalogue Mike - get yourself a good complaints lawyer, I wouldn't stop at PALS. That is utterly disgusting and this needs airing to make sure it isn't swept under the carpet. You need more than a whinge - you are fully entitled to it. I've had some poor treatment but nothing to match that.
And before anyone accuses me of "having it in" for the NHS, the entire family works/worked in the NHS. Medical science in the past, and currently a nurse and a paramedic. If either of them even pass a throw away comment that could be construed as criticism they are at risk of dismissal - and that report the other week isn't going to make an iota of difference. If you suffered - shout and get the appalling top-down influence that is ruining lives for staff sorted out.
Mike, that's terrible. The irrigation catheters are really painful to insert as the diameter is so wide and it sounds like the Dr made no attempt to make the experience less traumatic for you. I would echo PMRpro and urge you to phone PALS and complain, practice never changes unless people are held to account for their actions.
I hope you the anti platelet you are on now doesn't cause you similar problems and that your GP is going to monitor your Haemoglobin.
It really saddens me to hear examples of such poor care, I feel it tarnishes the whole of the NHS.
Ferrous sulphate is the cheapest form of iron so I think that is why it is prescribed first. I could not tolerate 3 tablets of it a day but can tolerate 1 of ferrous glauconite which is still very cheap so see if you can get your prescription changed. I know this is not the 3 tablets a day we are supposed to take but it is still a lot of iron and if like me you have low iron stores you are likely to be on it a long time, so finding something that you can tolerate is important.
You have been through a lot and have a lot of healing to do.
How much energy you will have to complain about your appalling care is up to you but do look after yourself first.
Michael - so sorry to hear of the disgraceful comedy of errors for the want of better words.
I swear by a liquid organic iron (II) from ferrous gluconate, vitamins B2, B6, and C made by Salus Haus Germany, distributor Salus UK Ltd.
This is an easily digestible tonic which has a shelf life of one month upon opening. Not cheap but worth every cent when struggling to regain better health in your present predicament.
I took this into hospital when I had heart surgery many years ago - I never looked back then and have started using it again with my recent diagnosis of PMR as I haven't had an appetite, nor wanted to eat very much at all. I very rarely eat red meat due to my digestion, although I note you do.
This is available from most Supermarkets in NZ, chemists and can be bought on line, so gather it would be readily available in the UK as listed above with the distributor.
Gluten free with no yeast is the one I use and hope this may help you in some small way.
Thank you all for your invaluable advice and apologies if I hav'nt answered you all.
Just a post script to Keyes, yes I did ask the Doctor if I could have entonox or some morphine before inserting the irrigation catheter but that fell on deaf ears before he forced it in and punctured the wall of my bladder causing further bleeding (this is documented as found in theatre and appears on my discharge notes) this caused further bleeding to add to the bleeding from my prostate which I was admitted with.
I also rang the bell on the ward to have my bag emptied and was completely ignored the two litre bag filled with blood and urine until the pressure built up and forced it to bypass the catheter and soak the bed, I was left like this for two hours and when they eventually changed the bed sheets they were saturated.
Still very weak after ten days at home, but really angry to have been put through all of this.
I have decided to make a complaint to the Hospital.
Definitely complain! If you don't get anywhere then take it to the Health Service Ombusman who can order financial recompense in England ( I think ).
I have never seen a bladder wall puncture secondary to a catheter insertion. Points to mention would be were you appropriately consented for the procedure ( were the risks and benefits explained to you ).
By not emptying the urine bag and leaving you in retention for so long ( both in A&E and the wards ) they put your kidneys at risk due to hydronephrosis. If the urine can't flow it backs up the ureters and into the kidneys, basically your kidneys could have been awash with urine. Also they had no way of monitoring your blood loss if your catheter wasn't patent and draining.
If you were still anaemic when discharged from hospital but were sent home without a discharge prescription for iron tablets then that's another thing to mention. I am sure you will go to town on pain suffering and the total loss of dignity ( be sure to mention dignity ) assocíated with sitting in a sodden bed for 2 hours and the general lack of care and compassion ( everyone talking about compassionate care! ).
I hope the rest of your recovery is uneventful. Kindness and compassion cost nothing, I feel truly despairing when I read stories like yours.
Thank you Keyes, you and others have been so kind and supportive on this site and although I am still feeling very weak and traumatised by the whole experience it is People like yourself, PMRpro and many others that have helped me so much by just listening to my story.
I am determined that I shall do my upmost to make sure that there are some changes made at that Hospital to make sure that there will be changes to the way that patients like me are treated and that they realise that bladder retention is a medical emergency and patients should not be left for hours to suffer, should be given adequate pain relief, and know which catheter to use etc.
I'm with Keyes all the way. Even if you personally don't want to feel you are being mercenary - you are entitled to compensation and sometimes it is the only way to make the point. My husband always encouraged patients to complain when it was something he couldn't do anything about because of manglement and their attitude.
Having got some compensation for the suffering, both physical and mental, you can assuage your conscience with a donation somewhere useful if you like.
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