Hello. I'm new to this forum, I don't know why it's taken me so long to join, but there you go. Right now I find myself at something of an impass in my life, so maybe I feel this could help. So, because I really need to try to exercise my demons,( and I know this will be long and tedious for some, I'm sorry for that), I'll begin at the beginning as they say.In April 2019 I was diagnosed with a 'something' in the right side of my liver, which was later confirmed to be a hydatid cyst. I'll never really know when or where I picked the parasite up, or how long I had it, but the position, very close to the portal vein, and damaged it had already caused was extensive enough to need right sided liver resection surgery quite quickly, including the gallbladder. At diagnosis I was told I had already a clot in the portal vein, and later, after pathology, told it could mean or maynot have ment the parasite had breached. During recovery I suffered another clot in the portal vein, and a serious wound infection. Safe to say recovery took all and more of 3 months.
Things settled somewhat, though I did continually get some gut problems, which weren't to bad to begin with and I put it down to still recovering. But in 2020, things got worse, to the point where some days I need the loo up to 12 times a day. Colonoscopy confirmed diverticular disease and areas where infection had left scaring. Excessive bile release contributes by causing more irritation. A complete rethink of my eating habits became necessary.
Between Christmas and New year 20/21, I was ill with accute diarrhoea and pain ( nothing unusual in that alone), but a few days later my eyes and skin went yellow, so my doctor sent me to A& E. It was thought I had a blocked bile duct but an infection in the gut again was the diagnosis but the scans had shown up another problem. Osophangeal varices. Blood had been detected many times in my poo, but, ofcourse it was though the diverticulitis was the primary cause for this. In April 21 I went for a endoscopy to assess how serious they were. Unfortunately, I was told later, that it was obvious I had been bleeding slightly from the worst ones for a while. Indeed at the appointment one burst, resulting in me needing an emergency procedure to band it and others to stop the bleeding. I spent 5 days in hospital. A few weeks later I had a spontaneous bleed which almost cost me my life. I had 2 more appointments where banding was need that year, the last one in the August. I have been lucky since.
Portal vein hypertention was diagnosed for which I take Carvadilol 12.5 mg a day.
This year I began to get some pain on and off in my upper right side, but which eventually got so bad my husband called an ambulance they thought I may have had a bile duct blockage, but everything was clear on the scan. A second serious bout and another stay in hospital and it was put to me that I could be experiencing nerve pain, which can happen years after major surgery. I have be taking Gabipentin to see if it helps. At my last endoscopy appointment I was told I have a new crop of varices at the top of my stomach, but everything is stable and it will be a year for the next appointment unless anything happens. A bitter blow to me as I thought, all things considered, I was doing well. And I am, but, ( and here's the crux of my current problem), my physical health has taken such a battering I suffer from constant fatigue and muscle weakness I often struggle to get up in the morning nevermind go to work and do everything at home. My mental health and anxiety is so bad I find myself having a panic attacks atleast once, sometimes 3 times, a day. I constantly worry something is going to go wrong again, and all the time I know this stress and anxiety isn't good for me atall.
I've been trying some self help techniques I've found, and signed up for councilling again, ( I had some at the beginning of 2020 whiched helped). I'm 60 years old, and feel time is slipping away from me. I can't give up work yet as we still have a morgage to pay, but I seriously cannot see myself making it to 67 and retirement. This scares and worries me too, as I have grandchildren I want desperately to see grow up. I feel everyday, my health is getting worse because of all this, and to add more into the mix my husbands just had a cancer scare too. What am I to do? I hold my hands up to being someone who isn't always sympathetic when people go off work for months on end with mental health problems. I pride myself on being mindful of the others in our small team. But I don't know how much longer I can go on like this. And then there is the financial side too. I doubt very much I'd get any help except SSP.
There you go. I've had my rant and got it all out there, and I know I'll probably do some of it again to the councilor. Lol. Thanks for ' listerning'.
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ScoobyPoodle1
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Oh my goodness you have been through so much no wonder you feel so battered bless you. Its not surprising at all that you are suffering with fatigue, weakness and panic attacks.On the positive side (and I feel we all need to look for one) you have survived the battering and although you still have issues it sounds like you are on top of things and by that I mean that you know what your symptoms mean and you know what to look out for moving forward so that you can be proactive. I truly hope that you are over the worst and that you can continue to seek help for your mental health.
I suffer with panic attacks and anxiety and suffer with bad fatigue and at times weakness. I also have diverticulitis. I am 65 and had to give up working as I just couldnt physically cope.
I really feel for you It must be such a struggle having to work. I am assuming you have looked into financial help and support.
I am glad you have reached out to our little community. There are lots of lovely people on here who have and have had Varical bleeds and survived so hopefully they will read your post and offer more support. Hopefully by sharing your story you feel a little comforted
Thank you Aztec632 for you reply, its helpful to hear from people who are suffering in a similar situation. I have never claimed benefits in my life, so I don't have a clue about the these things. Having taking on board what you said, though, I'm at that impass now where I am no longer coping physically, or mentally for that matter. I do think it's time to look properly down that avenue, as much as it goes against the grain. I would expect I'll need some kind of supporting paperwork from my consultant and GP, can anyone confirm that? I would think the claims help line maybe, or citizens advice would be able to help?I have some good friends, but even they have a limit to their patience. I want to move on but I'm stuck at the moment, I hope this forum will help with that. Thank you again for listening.
I was the same always worked hard and found it very difficult excepting help but I lasted as long as I could. I receive financial help in the form of PIP (personal independance payment.) I had to back up my claim with medical paperwork and I am sure you have plenty! You can claim this up until retirement age. I now knit for the samaritans charity for children so I feel like I am doing something useful.
Thank you so much for that information. It feels a bit like that hug you mentioned, and gives me some hope that I may be able to focus more on improving my situation.
Look up Dr Claire weekes for her books. They have helped me to process the awful feelings of panic and anxiety. You can buy them on Amazon. I take a beta blocker too.
Hey Scooby, you have been through a lot and it sounds like you are doing all the right things. Anxiety and panic attacks are awful and unless people have had them consistently they don’t realize how bad they affect ones well being. The “tools” counselors give us help a lot when practiced but when that’s not enough medication should be considered. I had to give in and get on meds and it’s helped a lot and I try not to take any medication. Sounds stupid but journaling also helped me.
I have a different perspective on work but I understand everyone’s situation is different. Work can help not have an idle mind, hobbies do the same thing. Bertrand Russell mentioned in one of his books that someone he knew collected Pennies and while he wasn’t a fan of it he was sort of envious of such a simple activity because it helped keep the mind active
I can’t imagine what you are going through aside from previously having panic attacks. You have made it this far and I have faith in you that you will conquer the anxiety!
Hello Pushthrough, thank you for your reply. Your tag name says it all for me, as that is what I have been doing for the last 4 years. I have a similar outlook to you, that work keeps my mind working and gives me focus. Despite the chronic fatigue, weakness, pains, umpteen visits to the loo some days and aches, I have kept on going. If I'm honest, I would like to continue, even if only a couple of days a week. But at this moment in time I spend alot of my free time sleeping, resting and recovering after fighting my body, which is why I think my mental health is suffering. I know it's not good but I kept pushing through, and I feel I have to accept I may have to stop. I hate the idea of being another burden on society, but if I'm to see my grandchildren grow and have some quality of life left, I have to do what's right for me now. I've spent some time researching self help for the panic attacks and in the early stages of using the ideas. A couple of them do seem to help with the night time panics, but the daytime ones are proving abit harder. Hopefully the councilor will help. I have never thought about a journal, though a friend did mention it sometime ago, I dismissed it. I think I'm will reconsider and give it a go, after all, I have alot to say on this forum, lol. Thank you again for listening
Hi scooby Aztec and Pushthough wrote just about everything please just know that there is a lot of us all feeling for you and are sending you our thoughts and love 💕 . The wife and I send our thoughts to you, good luck with everything .
Thank you so much for your kind words, I really do appreciate it from everyone who has replied. I will let everyone know how I get on in the next few months. I have an appointment with the hepatic team in a few weeks and I hope to hear about a date for counciling soon. And I will keep plugging at the relaxation techniques to try and get the anxiety and panic attacks under better control. I've started my journal as well. Thanks again. X
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