Im new here Introduction and personal story

Hi, im moving through thr process of what I suspect will be an eventual diagnosis of cirrhosis and portal hypertension.

History of moderate to heavy binge drinker 3-4 night a week for 25 years with periods of abstinence 3-24 months interspersed. Stupidly i occasionally used cocodamol and paracetamol to combat terrible hangovers and the migraines I occasionally experience.

2 years of intermittent URQ pain, liver tests negative and an ultra sound scan for gallbladder/liver negative. given the "all clear" by a doc who i suspect felt I was neurotic (I can be)

i continued drinking dismissing periods of loose bowel movement and worsening rib pain and fullness as possibly an ulcer (antiacids did help) and related to a stressful job. Given my fathers a stage 4 liver in denial with persistent ascites mystifies me how i carried on.Denial.

Spider naevi veins were appearing on my central abdomen and chest and im sure id had a few 'odd' headaches like mild sunstroke which im concerned suggest encephaly) Recently I also developed a persistent smell of smoke.

I ceased drinking again 3 weeks ago.

In the last two weeks dramatically worse rib/flank and back pain combined with kidney pain and a central lower back pain. Its been enough to keep me from sleeping.

Another visit to the doctors elicited more concern. A urine test showed small amounts of haemolysed blood indicating either glomerulonephritis (my mum has it) or hypertension. No sign of infection. Kidney and liver function tests or back wednesday with a likely referral for repeated ultrasound.

Liver pains easing but lower central back pain the worst.

Ive not been sleeping very well. Not at all really. Just seem unable to drop off although tired during the day.

Researching around the topics it to death and as said in some posts ive read that can be self defeating.

Im wracked with guilt, having a lovely wife and 2 kids.. just finding it very difficult.'

Many thanks to all those who share their experience and knowledge here.

Anyhoo hello again. I will update as I learn more

Bhik

10 Replies

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  • Seasons greetings can't comment On the more familial medical history but a lot of your symptoms sound a lot to me like moderate hepatitis. The symptoms of this can often worsen after ceasing drinking and if you've been a heavy drinker it can take.months to improve. Give it another 3 weeks and see how you're feeling cntiuing the abstinence-I'd be surprised if an ultrasound doesn't show fatty liver of some sort. Sounds like your liver needs doe tlc. Good luck

  • Hi, You should not really feel guilty, we all deal in different ways what life throws at us. You have made the biggest start possible by stopping drinking. By sticking to that you will help yourself and help yourself to recover . Good luck.

  • Hi there. First, I agree with with other posyrt. Although not a doctor, I have been sober 8.5 years, am an active member of A.A. And many of your symptoms seem to mimic most of ours in really early recovery. Pain, lack of sleep, some blood, etc are quite common.

    Recovery in its earliest stages also mimic often certain mental illness and disease. Many people take meds for bi polar, depression, psychosis etc, all to find out within the first year they in fact have none of these. Alcoholism mimics s oooo many issues.

    It never ceases to amaze me how many doctors diagnos serious problems all to be stunned when your body flushes itself out and everything is gone.

    The rule of thumb is one month per year of drinking is how long is takes to really know what damage had truly occurred.

    I on the other hand had Hep C. I thought for sure I was dying. I got sober and was fine.

    After 3.5 years I developed massive ascites. I Was stunned. How could this be? Like many..the HepC I had continued to hurt my liver. Everyone else seemed fine, and was no longer sick.

    Again, I am NOT a consultant, not medically trained, but I think unless your doctor and blood tests after a period of sobriety tell you otherwise..focus on sobriety.

    Just my two cents, for what their worth!

    Cheering y out on!

    Kimberly

    Ps. I have since had one new liver, last year, which is failing, eand now am waiting for a new liver kidnney trans plant, I have a very rare form of portal hypertension.

  • Thank you bricollone,brummi and dckimberly. Will wait and see what im dealt.

    @dckimberly. Thanks for mentioning AA my longest period of sobriety (2yrs) involved AA. Time to get back. Im sorry to her about the development of your condition. In my prayers that the wait will be short.

  • Subsequent to last post I seem to be producing a lot of body odour like an ammonia smell. It lingers on bedding pillows and clothes. My wife says she doesnt smell it. 'Normal'. It may be

    I also seem to be producing the most incredible 'chemical breath' feels like im a chemical factory pipe. Tingles a bit inside. Ive had 3/12 of a smoke like smell via the nose but this is being registered on exhalation via the nose and mouth and is on a diffferent scale.

    My wife says she cant notice any bad breathe (she has a sense of smell) but understandably is getting fed up of me asking and I know she isnt wanting to increase my anxiety prior to me seeing a urologist on Thursday (for micro uraemia in kidneys) and scans. My intense 2 week kidney pain has decreased although lingering doubt damage done over last 2 weeks plus I have been a little constipated and wondered if they trigger the Odours.

    Im getting some mild mental fogginess periodically lasts a few hours. HE or tiredness due to lack of a sleep? Im only gettign 1-2 hours if any.

    I do a very technical fine manual job and am a little wary for return to work tommorow

    Its the bank holiday and was wondering do such a change in symptoms (esp if neurological) warrent a visit to A&E (they will be stretched) or leave till thursday albeit im seeing a urologist. Appreciate no specific advice liability blah blah.

  • Have you been offered a fibroscan? My boyfriend became noticeably worse when he gave up drinking although he was also adjusting to knowing something was really wrong with him. I would say it was nearly three months until there was a sudden and very rapidly improvement.

  • Fibroscan refused even privately as bloods and ultrasound normal

    Can source elsewhere I suppose

    Which I was told means you can't have liver disease as it would show. I'd understood it shows imflammtion not necessarily damage. Ive read of people always having normal bloods but having syptoms which showed high levels damage.

    Anyone know anywhere that does fibromax test (not fibrosure or scan) that includes ASH test?

  • The normal gp liver function tests were normal/ slightly elevated which caused the delay in diagnosing cirrosis.

  • @paulineunderstand

    In who your boyfriend?

  • What was his diagnosis? What improvement did he get after 3 months?

    I'm refused any further tests as two normal bloods (I had ceased drinking for 4 and 6 weeks by then) and ultrasound but suspect from symptoms all not well and underlying damage.

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