My husband called me at work to say he hadn’t been able to eat anything not even his porridge, which he has been enjoying. When I got home he was so down and he said he feels so poorly it is the worst he has felt. We think it may be the last of sleep but who knows.
It appears to me how he feels goes in a circle never good but less bad and then gradually worse and then less bad again. Despite the colonoscopy not turning up much he is in a lot of pain which we mentioned to the GP who successfully avoiding committing to an opinion
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Bs1524
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Hi Alf, thanks it is horrible seeing like this I have said let’s call but he absolutely refuses although he did relent and say the GP he likes is on tomorrow. As I said before he doesn’t or won’t see that he is not going to get over this and his condition is chronic I am so hoping the Heptologist can help the situation
I wonder if it's possible for you to let your husbands hepatologist know before the appointment (possibly via his secretary) that your husband doesn't seem to fully understand the situation that he's in and maybe he could talk to him about it?
Sometimes at appointments specialists don't realise this because they are dealing with it day in and day out. They expect that if they are not asked questions that you understand everything. It's a huge lot to take in anyway!
I learnt far more from this forum than from anywhere else. Unfortunately it was after my transplant.
I've said many times on here that I wish that I had known about the BLT Forum long before my transplant.
It's a shame that your husband doesn't come on here and speak to members. Maybe then it would become clearer for him.
Hope today is just a glitch and he feels more like eating tomorrow.
Thanks that is a good tip seems so obvious now you have suggested I speak to his secretary. I am worried that it will distress him and that he may be choosing not to know. He certainly isn’t asking any questions about his illness. I just worry if he is confronted with the reality he will give up. He has never handled serious issues very well.
I realise what you are saying. You want to protect him from himself and that is only natural under the circumstances.
If he were to realise the full facts though, then maybe he would take more interest and more responsibility In the fact that if he keeps doing all the right things, not only will it be far better for his liver and overall health but also that if he needs a transplant he will be stronger and in a better position to have one.
At the moment he needs to eat little and often and I'm sure that you probably worry about these things when you are at work. If he were to be in possession of the full facts and from the specialist himself he could then take more of that responsibility and you would know that he's looking after himself properly when you can't be there to urge him to eat or to try and do some exercise.
I'm sure that it would relieve a lot of the pressure off you if he were able to accept his health situation and face it head on.
I feel very nervous to do that terrified it will destroy any positivity he has. He has a phobia of hospitals and seems to become a wreck as soon as we get inside so not sure he will actually hear what is being said to him. I wish I had a magic wand.
I can't imagine one not being depressed and discouraged when they are doing what they are supposed to be doing to feel better and have Yet to experience better relief and some rewards for their efforts. Let's hope that the medical team addresses that pain your husband is in sooner than later. The pain is in his abdomen? I need to call the specialist this a.m. as my husband's blood sodium concentration is low again as per last blood work results I've checked. Pretty much everything else is good now. Is your husband getting his blood work done regularly? It was good to read that your husband likes his GP. That's one roadblock lifted at least. Wishing you both a far better day!
Hi, yes he has blood work done and we were told not as good as it could be??
He thought his pain was due to heamarroids but following the colonoscopy he doesn’t have any internal ones so confused why he is in so much pain. We told the GP this and she was very noncommittal.
It's time IMO to get copies of all blood test results, scans, xrays, reports, etc.
I learned that it is our right to receive copies a long time ago and strongly recommend one does. (Perhaps that right varies depending on location?)
Not as good as it could be …… is not a good enough answer. Sorry.
If you aren't too far from the GP's office or the next time your husband is seen, you might want to give them a heads-up beforehand that you would like Copies of Everything up until now and how soon can they be ready.
Up until recently, my husband was having blood work every two weeks. Fortunately, I can check the results on line. Thus my nudging the Specialist this a.m. about the sodium issue.
You have had some lovely supportive advice from our members, has hubby been referred to a hospital registered dietitian? if not he may want to discuss that referral with his liver specialist. They may be able to help him with a specific dietary plan.
If he really cannot tolerate food and continues to feel unwell we would also suggesd that he is seen and assessed by a doctor as soon as possible.
He has seen the dieticians a few times and in all honesty they did tell us anything we didn’t already know or was doing. If someone has no appetite it is very difficult to eat.
Hi pam. I've been there where your hubby is it's dreadful. U can't face food appetite just goes. I had to force feed myself for a month. Eventually it subsides, I had the u wellness too its like something u can't describe. I felt that poorly I went to A&E at least 12 times. There's nothing they can do. U have to ride it out unfortunately. Its not easy. But I wish your hubby well. Just keep going . Chris
Your hubby is very similar to me. I go from just about OK to feeling really rough, sometimes daily. As he has so much pain, like me, all the time, it's difficult not to get down about it. Doctor's, both GP's and Hepatologists, are all frightened to recommend suitable pain relief for cirrhosis sufferer's. The closest I got to an answer, was codeine.....but in reduced doses than for healthy livers. With me, in the end,I got so fed up with 24/7 pain that I now take the max recommended dose, in sheer desperation. I also take amitriptyline and paracetamol as well.
Thanks David I think I need to Male much more fuss about his pain. Something is causing it and if it isn’t heamarroids then what is it. To make matters worse he got a letter today calling for another colonoscopy next month but when I called it was a mistake so they are not fussed about the colonoscopy and the polyp they removed. On top of everything else it is so rotten for him.
I wish you luck in asking his consultant to address his pain.
Where is his pain, as it needs to sorted. If it's within the rib cage, as mine is, then it's probably due to liver and spleen being swollen and putting pressure on the Glisson's capsule. My pains started in my shoulders and round to my shoulderblades, and then, as that eased, moved to inside my rib cage.
I am going to give my consultant an ultimatum when I see him in April. Either he acknowledges that my pain is liver related, and therefore offers effective pain relief, or I will report him to PALS, and then seek another Hepatologist who will listen to me, as I first reported my pain to him 15 months ago.
I was only given one colonoscopy at the start, and also had biopsies taken and four polyps removed. I was then diagnosed with diverticulitis.
Unfortunately, it's very easy to get overwhelmed by all the things going on, which in my case led to depression, but that was soon sorted, and I have now come to terms with my cirrhosis, and most of what it throws at me.
Maybe it's either diverticulitis, as I have it and do sometimes get pain there, IBS, again which I get, or ulcerative colitis, which 2 of my children have. Was he diagnosed with any of these after his colonoscopy?
Nope they removed a polyp and that was it the consultant is referring him back to the heptologist before the colonoscopy the consultant mentioned maybe there is a fissure or a muscle in spasm.
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Day 21 Hubby update - looks like he might be heading back to square one
You guys must be sick of hearin from me.hope not though.Its nice knowing i can share on hubbys process.
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