Ongoing hell

I wrote earlier of my husband's problems & the quite shabby treatment, or rather non treatment. He went for a colonoscopy in early October, it couldn't be done because of husband ongoing heart condition. Instead he had to have a endoscopy & CT scan of his bowel. Nothing sinister was found & he was discharged. He has been complaining of stomach pains, weight loss (now 20kg) no appetite & for a while diarrhoea. Last week he was in dreadful pain, I called the doctor who arranged for him to have a gastroscopy, we went to the hospital on Tuesday, he couldn't be done as his blood pressure was so low it could have killed him. Next appointment scheduled for the 22nd December, but what if it can't be done then for some reason. There can be no treatment until the doctor has the test results. His diarrhoea has turned to constipation, but not now, he has either blood or liquid faeces leaking from his back passage & has to wear a sanitary towel . he is in terrible pain, only medication until today, codeine! He hasn't eaten a meal fir two weeks, he is existing on Milford & the occasional boiled or scrambled egg. I phoned the doctor & hospital today, I will call the Daily Mail, they would love this - an old soldier who fought in Malayia. The doctor thinks it sounds like cancer, so do I, my degree is not a medical one. When it first started I thought it was cirrosis It still could be, but surely he deserves better treatment than this.

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  • I am so sorry to hear your post but sad to say I am not surprised. We have had similar experience with a relative.

    It is dreadful you are in testing limbo land and your husband sounds like he is fading before your eyes.

    Personally with the knowledge we have learnt the way to work our local hospital trust is to go to A&E and get admitted. Your husband is definitely poorly enough. Once he is admitted you can chip away ensuring he has the tests he needs as soon as his blood pressure will allow. Maybe his low blood pressure is due to dehydration from all the diahorrea and lack of eating? A couple of days on iv fluids may help this? I am not a doctor but learning fast after having very close relatives in hospital very poorly.

    As you said you may not have a medical degree but you are an intelligent person with common sense, so whichever path you take, question, question question the doctors until you are happy with the response!

    Good luck. Thinking of you.😊

  • This is a confusing and worrying account. I think the best option for you is to phone your GP today for an urgent appointment and then describe all of the symptoms. I find it hard to imagine that nothing would be done. Bleeding from the back passage and weight loss would be enough to warrant some urgent tests. I can't imagine how contacting the Daily Mail would serve any useful purpose.

  • I agree with Mike..Call your GP. If he is bleeding, just go to A&E. I'm surprised you haven't, or have you? Take him back. Don't wait. It does sound like cancer, and I'm no doctor either.

    Codeine can give him constipation, any opiate can. But I don't know if

    codeine is he allergic to morphine?

    Either way, if my partner were that ill, I'd be down at A&E. I cannot see why they would not admit him straight away.

    *** I also agree with Mike, The Daily Mail, truly, will give you no will just add anxiety..I can understand why you feel that way, but surely, no A&E would turn him away if he's that sick.

    I'd go today, now. Twinkle 30 , I believe is giving you good advice about his symptoms too. I'm 50 plus days post transplant, and I have low blood pressure to begin with..but when its really low, they start making me drink fluids right away. IV fluids my be the only way at this point..who knows?

    Your GP sounds like he is off his rocker..I mean, if he is telling you he thinks it might be cancer, and he knows his symptoms...HE should have had him admitted straight away. What hospital are you near?

    I'm at Addenbrookes. in Cambridge. I know they would not turn your husband away. If it is cirrhosis, they have one of the best liver teams in the UK.

    Sorry if I sound frantic, or if any of us do..but what your relaying to us sounds very serious.

    Thinking only good thoughts for you and your partner,


  • I am near Southampton. I could take hi. To A&E, but it would be by taxi & his pain is very bad, he doesn't want to go..

  • She came to see my husband on Wednesday, she saw the blood. She told me that her hands are tied until she gets the results of the tests which can't be done. I telephoned yesterday as he is in great pain & the bleeding has increased. She told me that he hospital will take no

    notice of her I should phone them, she would as well a double prong attack. I did, the best I can get is a cancellation - but if his blood pressure us still low they won't do it.

  • if your husband is passing blood and liquid stools, Its an Emergency.

    i would strongly suggest to take him to ER and get all the tests, that are required to diagnose the ailment, done at the earliest.

  • Hello 😘😘😘 I agree with all of the above xxxxx you said hubby was constipated but is now leaking ?? That is sometimes normal and the term is 'overflow' - it's when the bowel etc becomes full of faeces that the leaking loose bits are overflow - this along with the codeine suggests it could be overflow !!!!! I am sure the hospital will be able to deal with this quite simply with laxatives and enemas 😘😘😘😘 unfortunately you will more than likely find that national newspapers are not interested πŸ˜“πŸ˜“πŸ˜“ with all the incidents my husband had to endure - no one (hospitals/newspapers etc) was interested !!!! I am trying to remember your story !! Is your husband 81 ??? Does he have a good quality of life (when not poorly) ?? If it is the right story then you have to also realise that as we age our bodies age - although his treatment is not acceptable you will have to accept that at 81 he is going to have some illness !!! I wish you lots of luck and send my love to you both - definitely mention 'overflow' as it can be easily remedied and he would feel a lot better after ❀️❀️❀️❀️

  • My husband is 80, for thirty years he has had heart problems, 2 triple bypasses, one 1984, one 1994. A stent in 2006, no more can be done for him as his heart is too weak. The doctor said yesterday he wouldn't be able to have surgery. I accept that he is dying, but surely pain relief which is all I'm asking for. I don't expect a miracle.

  • Oh bless you xxx codeine is a very good analgesic but it does make you constipated xxx have you spoken to GP about this ?? As he would be able to advise many different ways to help with hubby's pain xxx sorry I thought you were asking about him having colonoscopy etc xxx what dose of codeine have they prescribed ?? And is it with paracetamol ??? If they have decided not to intervene surgically or medically then they should at least offer some type of palliative care 😘😘😘😘😘😘 hugs x

  • Yes its called faecal impaction and is treatable. If he doesnt want to go to A&E to be admitted and have this treated, perhaps a District Nurse would come out and give him an enema to help clear the bowel.

  • This is totally unacceptable; i agree re get him to A&E straight away and refuse to leave; he must be admitted to Hospital. I am outraged at such horrendous treatment; good luck x

  • Personally i wouldn't even bother with the doctor; the situation sounds very urgent to me. Get him to A & E. X

  • The medical people might be trying to fob you off, based on his age. This is no excuse, everyone is entitled to treatment and to be treated with dignity and respect.

  • Good morning, I'm presuming that as you haven't replied your husband is in the best place for him, hospital.

    Please keep us updated as to how he is progressing.

    I hope his condition improves rapidly, as for your gp telling you it's maybe cancer, he shouldn't be surmising he should be diagnosing with tests to back it up,

    Please try not to worry and God bless.

  • My husband is in his own bed, where he wants to die. I have posted.

  • Sorry to say it but it does sound like your husband is near the end since there is little that can be done to treat him, even having had tests for other things it is unlikely they could treat due to his heart and other health difficulties. There is no treatment for cirrhosis and sadly when it is seriously advanced then it begins to knock out the other organs. No surgery could be attempted due to his other conditions too.

    At this stage - I feel your doctor should be putting in some palliative care either with home visits from Palliative Care team or local hospice, he should also be provided with supplement drinks which will keep him maintained - like you say if this is the end and he wants to be at home in his own bed then the best thing would be some suitable home care and pain medication to make his last days as pain free and dignified as possible.

    Love and best wishes coming your way. I don't feel an approach to the national press would do anything at all except cause more stress.


  • Think you should go straight back to docs do they know faeces has changed to blood if he had an internal bleed yhis could cause his blood pressure to drop.. but regardless of whats caising it yhey should be treating for pain i would demand that they admit him or get him some proper pain relief .if not go to a and e poor man should not be left in tjis position.if they cant cure him because of his heart prob then they must tell you and get his paim relief sorted.have they done blood tests as this should show cancer markers or raised liver ft so be a stroppy woman and tell them you want it sorted.good luck.x

  • Oh Anya, I have seen your post about your husband being in his own bed. I can confess now that my experience of your husbands symptoms are very real to me as we just lost an aunt to very similar. I must say your husband will get more dignity at home. Our aunt still didn't have her diagnosis on death and we were stuck like you between stupid doctors and guidelines. We knew what was happening a week before she died and just wanted the best end of life care for her but this didn't happen. We ended up camping out at the hospital and being there as much as we could. She died on a 4 bed ward with the poor other patients watching the whole thing. I know she wasn't aware of it completely but we were and know she would of hated it.

    The whole thing was a shock to us as she was only poorly 5weeks in total before this a perfectly fit and healthy 70 year old with no ailments! Her condition did turn out to be lymphoma cancer a very silent killer, supposedly. I had to demand the correct diagnosis after death as they just put a general term on certificate. The family needed it to help come to terms with it.

    Anyway I am basically saying if you can manage with him at home, demand your gp provides you with some additional nursing care and medication. Call your local Hospice for advice, they may only be able to give you this as he doesn't have a diagnosis which is crazy I know. Then try to spend the days with your husband, as time is precious and wasted on too much fighting. I know easier said than done.😒

    Do you have family or friends that could support you?

  • Thank you, I am sorry to hear about your aunt. I spoke to someone at Macmillan last night, they were very helpful & suggested I speak to one of the partners at the surgery. Brian feels he is deteriorating daily, as things are I would prefer him to be at home. He has been given a stronger pain killer, which is giving him ease. I cannot understand the doctor who shouted, as she was going down the drive that she can't do antything without test results & his heart would take the operation for cancer. Unfortunately our family are in South Africa, & there are no supportive friends.

  • Ah Anya you do find out who your friends are in these situations I am afraid. Our aunt did have many friends but we felt like we were comforting them most the time, it made it harder at times.

    The doctor that shouted at you should be taken down a peg or two. Her behaviour was disgraceful and completely unprofessional. I agree with Macmillan's advice talk to a partner or the practice manager at Gp surgery. As you are going to possibly need a gp to help with medication and the rude one needs talking to.

    Can Macmillan help at all? If not medication but advice on where to get any equipment and supplies you may need. Also a friendly voice of experience to talk to.

    Sounds like Brian is guiding you with how he is feeling and what he needs to be is comfortable. So lots of love and comfort will help him, which it sounds like you are already doing. Make sure you look after yourself as this is so important too.

    Incase he needs more medication that makes him extremely sleepy find out if he has any particular wishes about his care. We did this with our aunt and it helped with decisions. She like your husband was refused certain tests as she was too poorly.😒 They too wouldn't treat her as she didn't have a diagnosis. It was only when she was slipping away before our eyes they gave her steriods but it was too late. Can you believe they didn't once tell us it was the end just that they needed test results. On her last two days they withdrew food n fluids and the nurses still wouldn't confirm it was the end and we never saw a doctor those days either, it was like they were avoiding us! Anyway goes back to the point, home can be best if you're both happy with that.

    Thinking of you.xx

  • Thank you. I saw the withdrawel of fluids when my friend died at the hospice. I was feeding her dips of water with a spoon & told it 'would prolong it'. I thought it very cruel then & still do. We are getting through one step at a time.

  • Sounds like a good plan, one day at a time.

    Take care now and let us know how you go, as and when you can or feel you can.xx

  • Sorry, I should not have replied to you without reading the other posts. If you husband wants to die with dignity in his own bed, of course he should get too. But I agree, a palliative care nurse would be very good.

    Good luck, and I'm sorry for all the pain you must be in



  • Xxxxx

  • When you are older and have been with someone for 50 years you will understand. he does not want to die in a hospital, he could go, I would visit, it costs Β£50 round trip by taxi, but I would go. When my dogs have to be put to sleep I hold them too.

  • I understand, sorry, I missed all your other replies. I also wanted to die with dignity. I'm 48 so maybe not that old, but old enough. I was so sick from liver disease I was just done. But then I got my transplant.

    Good luck to you and your partner


  • Sorry to hear how bad it all is for your hubbie and you; i had thought that maybe there was some hope; either way; try and get as much medical support as you can, in order for him to remain at home then; as this is his wish; A great shame you have no family over here to support you. . Im glad he has some decent pain medication at least. How can a doctor shout at you at a time like this; they are supposed to have empathy!

    At least he has you with him; best wishes.

  • I'm doing my best, I'm no Florence Nightinale but am trying. I am keeping calm & not wailing, it wouldn't do any good at at all. We all have to go to 'the tall trees' sooner or later.

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