Update on hubby.: Morning all. So update... - British Liver Trust

British Liver Trust

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Update on hubby.

lyn3 profile image
lyn3

Morning all. So update on hubby..

As ive posted last he was admitted to hospital because hes constantly in pain with his stomach, and was told he had constipation. Which we have discovered since that its not..

Today he goes for the camera down his throat, now he doesnt think they will find anything because the pain is at the bottom of his stomach, but he believes there is something very wrong with his stomach.

Not sure if its connected to his liver with the amount of pain hes in but im really hoping we have some answers as to why hes in so much pain most days with his stomach that he cant get out of bed and darent move sometimes..

Ive had to deal with him talking suicide this past week because he says he cant take being so ill all the time...

His appointment is at 2,20 this afternoon. Will fill you in later when hes had it done..

Hope your all coping with your personal lives and whats going on in the world,

Take care..

Lyn..

34 Replies

Hi Lyn.. Hope all goes well this afternoon amd you get some answers. Remember to ask plenty of questions to help you understand whats going on.All the best.

Laura xx

Mondy122 profile image
Mondy122 in reply to Laura009

Wow awful that he’s talking about ending it I think the doctors need to know this and really try to get to the bottom of it,ive only just joined on here but it seems there is people here for you for advice or just to listen,don’t be alone when your a keyboard away from this place and all the best with the test

Hiya, I hope you get some answers later, thinking of you both x

Hi all thank you all so much for your replies,..His dr knows about his thoughts and all they say is keep an eye on him, hide meds, etc....Just got back home from the hospital. They wouldnt let me go in with him laura, even though i explained im his carer as well.

They told me they would ring me when hes in recovery, was expected it to be 45 mins and na hour later hes walking out of the hospital to where i was sat,no phone call, she asked him if he was ok to walk to the entrance, of course hes going to say yes.

Hes not feeling too good so hes gone back to bed.

They gave him the results on the paper , he gave it to me and suprise,suprise they cant find anything wrong. but they took two biopsies just to check.

I wonder if we will ever get to the bottom of why hes in so much pain and ill all the time.

Take care.

Hi Just to say I'm thinking of you both. It must be so hard for both of you. I think you are right in that one of the nurses should have walked out of hospital with him. It can be frustrating not knowing what is going on, I've been there with that , I or a member of my family have had to fight to get answers which is very draining. PM me anytime of day or night, I'm here for you.

Lots of love and hugs Lynne xxxx ❤️🤗🌈🌹💜🌻 xxxx

lyn3 profile image
lyn3 in reply to Oldham65

Awe ty lynne, bless you..Yeah very frustrating.. Hes been in bed since we got back at 4pm last night and hes still there now and its 10,30 am..I hope we get answers one day. its just exausting know what to do next, how to help him deal with the pain and depression, he just wants to be left alone when he is in pain and not right. Hope your doing ok lynne.. love and hugs,,

Oldham65 profile image
Oldham65 in reply to lyn3

Thank you. Thinking of you both as always All my love Lynne xxxx ❤️🙏❤️🙏

Fingers crossed Lyn xx

Hope all goes well today🤞❤️

Dear Lyn so worrying for you both and still you were so kind to wish us all well. I'll be thinking of you both this afternoon xx

Thank you all,,I dont think we will ever get to the bottom of a true diagnosis. but what can we do other than just live every day as it comes..

Thinking of you both 🧡💛💚💙🤎🤍🖤💜❤️

lyn3 profile image
lyn3 in reply to Catlady1972

ty..

Trust1 profile image
Trust1Administrator

Hi Lyn,

Hopefully the tests will help clarify a diagnosis for your husband.

You may also want to think about discussing with your husband about getting some help if he has mentioned suicide. Maybe the doctors can assist with this or refer to a specialist service who can?

Warm wishes

lyn3 profile image
lyn3 in reply to Trust1

Evening trust1,, i have discussed with the drs my concerns about his feelings etc and all they suggest is i keep an eye on him and hide all meds and only give him what he needs, i said to the dr thats all i seem to be doing is keeping an eye on him....I just want to scream at them and say just give him a diagnosis, but anything said falls on deaf ears...Its now almost 4pm and hes still in bed sleeping. Ive been out shopping..

Ill keep updating on hubby if he gets results..

Laura009 profile image
Laura009 in reply to lyn3

Big hugs to you both xx

lyn3 profile image
lyn3 in reply to Laura009

thank you laura,, hope your doing ok..

Laura009 profile image
Laura009 in reply to lyn3

We are all fine. Thanks Lyn Xxx

Trust1 profile image
Trust1Administrator in reply to lyn3

It sounds incredibly stressful Lyn.....If you'd like a talk, myself and Kirsty are working on the helpline until 3pm on 0800 652 7330

lyn3 profile image
lyn3 in reply to Trust1

Awe ty trust1....Your all gems and i for one am greatful and thank you for all you are and do..:)..

Trust1 profile image
Trust1Administrator in reply to lyn3

Thank you 🙏

I feel for you both, and completely understand the sense of hopelessness and resulting depression when no-one can ever come up with an explanation for pain and discomfort. My partner has been prodded and poked, tested and referred, scanned and tested again for several issues and conditions, to the extent that the liver consultant, a professor at our local uni, has just said she would understand if he did not wish to undergo further testing, due to this e psychological stress he has been under in recent years. Going through these procedures alone has been so hard for him. I have managed to accompany him to some appointments, but was unable to go with him to the PET scan which was literally going to tell him whether he would live or die. Now he is having to go through pretty much the same again, once more dreading the results. I do hope your hubby can get the support he needs, and will find some answers to his problems soon. He is lucky to have you by his side, but I hope that you are getting some help and support too, as you need it. Take care.

lyn3 profile image
lyn3 in reply to Partner20

Evening partner....I feel very much for you and your hubby, its so hard isnt it ? not know what to do for the best, its like wanting a magic wand to find out answers..Your poor hubby must be such a worry with him, do they not know what is causing the problem? has he had the CT scan yet? Awe ty i think all carers on here and those we dont know about needs so much support and thats why i for one am greatful for this group..i love this group and see you all as an extended family.. :). I hope you get all the answers you need for your hubby too.

Partner20 profile image
Partner20 in reply to lyn3

Lovely to hear from you, and for taking the time to reply.🙂 I totally agree that carers need support, which is not always forthcoming or easy to ask for when the focus is on those who are unwell. No-one can understand either my partner's symptoms or any results. From a recent diagnosis of secondary liver cancer, ( bloods, ultrasound, CT), to no sign of cancer, (biopsy, MRI, PET), but no idea of what us causing abnormal results, was bad enough, but now more investigations, bloodwork and MRI are to be done, with all results to be sent to Kings College, London, for evaluation. Once again the seeds of doubt are being sown. Such a worry. Let's hope that your hubby will soon get a definitive diagnosis, and then be able to have treatment to make his life more comfortable. In a way, not knowing is sometimes worse than knowing, because you can't get any treatment at all. Fingers crossed that someone comes up with the answers for you.🤞

lyn3 profile image
lyn3 in reply to Partner20

Thank you so much partner , you too..Its so hard being told one thing and then told its not the next..Hubby was told he had cirrhosis, then told he doesnt, he was told he had lung cancer, then they said he dont........No wonder our hubbys are reluctent to go to the hospital or drs...Hubby at the moment is in bed again because he felt so unwell,(hes been up half an hour ) he said he feels like hes going to have a seziure (which he also suffers with, so hes taken meds and gone to sleep)..Hope your ok,,hugs..and hope you get answers too soon....

Partner20 profile image
Partner20 in reply to lyn3

Hi Lyn3, so sorry your hubby is poorly again. Being told conflicting things with no-one being able to come up with the answers does affect people, understandably. Until you have seen someone go through this, it's impossible to comprehend. Just got the forms through for the next round of blood tests, for liver and various other auto-immune issues. So it starts again. Anyway, on a positive note, it was his birthday yesterday, and we had a distanced outdoor meet-up for a walk, coffee, and a chat with our two daughters, which was lovely. We need these breaks!! Hoping that you and your hubby will have some more enjoyable moments at the weekend. Hugs to you, too.

lyn3 profile image
lyn3 in reply to Partner20

Awe thank you partner...So glad you managed to get out and meet your daughters, Happy birthday to your hubby..Yeah its needed ..Awe always blood tests and never the answers huh?Hubby got up earlier after resting, he came down stairs and said i need to go back to bed again, i cant keep my eyes open,, been back and forth checking on him he comes around not know where he is, or he is some times, he said hes going to contact the dr again next week because he shouldnt be so tired all the time, and i agree..

Its his birthday Tues, we are supposed to be going for a meal with his daughters but i some how cant see him making it, so i might suggest having take away here and inviting the girls over.....Just feel so sad and sorry for him , he just seems to be going down hill more and more . I was talking to with my daughter earlier and we hadnt realised how fast hes gone down hill the last year....

Going to do some painting this weekend, so that should keep me out of trouble. ha ha.

Hope your weekend goes ok..Take care..

Partner20 profile image
Partner20 in reply to lyn3

Your poor hubby, lyn, I feel for you both. Yes, he must contact his GP on Monday, but Covid has made everything far more complicated, hasn't it. We are probably looking at another evening up until 2 a.m. or so, as my partner's mind is too unsettled to allow him to sleep, having other medical issues to contend with, too. Plus water-damaged downstairs rooms, too! Long story. I hope that the upcoming birthday with family meeting will give your hubby something to look forward to, and that you get some quiet time to yourself over the weekend. Take care.

lyn3 profile image
lyn3 in reply to Partner20

Awe ty partner,,He didnt get to the gp in the end, he felt he didnt need to go. Awe how is your husband now? how are you coping with keeping yourself well in all thats going on with hubby? He managed to get out for for a couple of hours for his bd with his daughters , just a meal, and then home...Hes been fine one min and then not well the next..

Hes been in bed since tuesday evening, he did get up 10 mins ago and couldnt bear to be up because his stomach is hurting too much, so hes gone back to bed, i feel so helpless and so sorry for him..He will be in bed till tomorrow now, i just hope that tomorrow is a better day, Im going to be contacting the drs in the morning because im just not happy of hows he been left since he had to have the camera down..

Ill update you when ive spoke to the drs,,.

Take care. Hugs

Partner20 profile image
Partner20 in reply to lyn3

Hi Lyn, I just managed to delete a message I was writing to you, so here we go again! Glad to hear that your hubby managed a trip out for his birthday, however brief, as it must have cheered him up a bit. So sorry that no answer has yet been found, and that help seems to be so lacking. We have just been contacted by a lovely helpful lady from our liver unit, so things seem to vary greatly from area to area. It must be so hard for you trying to deal with things on your own on your hubby's behalf, especially when he may not want anyone to do anything. My partner had a gastroscopy this week, which found acid damage, that he knew about from a previous one, and now it's a matter of waiting for the biopsy results. Another liver MRI at the beginning of next year, and another MRI on Sunday for a possible recurrence of another condition. It's all go! His diet is currently very restricted, but still does not resolve stomach issues. He is actually happy that he can have a simple meal at home tomorrow! I hope that you manage to enjoy tomorrow together. Message me if you want to. Happy Christmas to you both. Heather. xx

I am going through the same situation! A debilitating pain in my stomach(where liver is) dizziness, nausea... so many different tests and no answers, i can understand the hopeless feeling as i have also felt that way, doing my own research and talking to regular people who are going through health issues did help me to come up with some theories on what might be wrong, helped a little but problem is still there, i have had other health issues in the past that kept being brushed off which left me in agony for years until finally the right doctor found the problem so i don't take nothing is wrong for an answer anymore, my worst nightmare is hearing...if we had caught it earlier...when they could have caught it earlier! it helps me to hear others stories because the doctors can make you feel like they think it's all in your head but it's not, don't stop until u get an answer!

lyn3 profile image
lyn3 in reply to Bribri44

Awe bribri, hugs.. Hubbys pain is in his lower stomach, but we believe its connected to the liver problems,Yeah i agree its good to hear others stories and checking on what it could be but its not the same as a diagnosis, there is such a difference having the diagnosis and on paper, hope that makes sense. Did they give you a diagnosis yet or you still being told nothing wrong? ..Yeah when i wrote the one letter to the dr explaining how discusgted of how hubby was being treated, he said to me what do you think is wrong with him?i said i think hes got cirrhosis and thats why he is so ill and sleepy alot and the dr said yeap, and that was it,,So i said so why isnt he diagnosed and the dr said i cant say because i havent been dealing with him but sometimes the symtoms show but the tests results dont and left it at that..Hope you get all the answers you need also,,. Take care

Oldham65 profile image
Oldham65 in reply to lyn3

Hi I really feel for you and everyone else going through such a traumatic time. In February 2014 I had surgery called fundoplication for hiatus hernia and issues with my oesophagus. Anyway I was still struggling with upper right quadrant pain. A supposedly excellent gastroenterologist said it must be muscular!! This was still going on in the Spring of 2016!! Finally an excellent GP at my surgery saw me, she wasn't happy with how I'd been treated. Because I have many conditions I am on a lot of meds. She referred me straight away. I was diagnosed with fatty liver(caused by meds from my drs over the years) , it is very enlarged , it then stretches the capsule around it which causes the pain as the capsule has the nerves in it ( the liver doesn't have any nerves.) In the November of that year I had a biopsy and was diagnosed with Nash, then in February this year I had a fibroscan and was diagnosed with compensated cirrhosis. It's so hard when you are being fobbed off all the time and have to fight your corner. I was very lucky to have a great support network of family and friends and of course there is so much support on healthy locked as well. If you would like to pm me feel free.

All my love Lynne xxxx ❤️🤗🌈🌹💜🌻 xxxx

lyn3 profile image
lyn3 in reply to Oldham65

😍😍😍, hello lovely lady,..always good to hear from you...How are you doing?Hubby was diagnosed a while ago with an ulcer, when he had the tube down the throat there is no sign of it......Hes def a robot....lol...take care..

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