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[milly]

I think if anything its more likely to be PSC, more readily linked to IBD.

As you know my enzymes were sky high and climbing at each test, but still I am at the monitering 3 monthy stage ,with likelihood of a transplant still a few years away.

One thing might just help, when I was very anxious about health, particulary this issue,my husband asked me what it would take for me to believe anything consultants etc were saying... I said basically it would take them to say I wasnt going to die any time soon, or suffer..

So he did no more than wrote to both my GP and consultant explaining my fears...although I had been saying this to my GP.

My consultant wrote me a letter, took a while, but it helped enormously. My GP called me in for a chat.

Result was that I finally accepted it, the problem is still there, but not the fear.

[CLKD]

Your Consultant told you to go on holiday - that's his way of telling you to move forwards.  That nowt is likely to go wrong that will require his attention.

Your GP is following up on concerns by arranging a scan.  The liver is the only organ that can re-generate and can take a real hammering.  You've been taking pain relief = liver over-load?

Of course this isn't 'all about you' but you are the 1 who had the surgery.  Book that holiday for YOU! there's later in the year for abroad ……… little steps 

[wombat62]

Hi groundhog

My liver enzymes were very elevated, well over 10 times what they should be, same with the pancreas! My doc couldn't work out why I didn't feel really, really ill!

I know how you feel a bit, I'd just got over the last attack when I had the one positive blood in stool test result and then felt very deflated of, now what... more worry until I had the all clear.

I also feel for you with the eating put thing, I feel like I can't trust anyone to give me a low fat meal after last time. I had to eat out a couple of weeks ago, one pub was really understanding and another place the kitchen didn't understand and my dinner was swimming in oil so back it went. I now take back up food everywhere just in case! Hopefully this will only be short term for me but I hope you get back on an even keel, the holes heal and you can start to feel better about everything again. I think just the eating issues drag you down as I'm sick of looking at menus and everything is a no no.

Let's hope you don't have to wait too long for scans and test results and get an answer.

[groundhog]

Morning all,
I actually saw my consultant yesterday. He had a cancellation.  I think what annoyed me CLKD is I don't think he had seen the results so discarded me not realising this blood test had been flagged,  on saying that he wasn't concerned but he never is !  He's told me to have the scan and he thinks it will be fine,  there are lots of reasons for an elevated gamma GT .  He checked my last ct and it was fine, liver wise. 
Thanks wombat.   Can imagine how frustrating things are with menus,  thing is I don't have pain like you had.  I have had episodes of upper abdominal pain but not severe like the classic gall bladder pain.
Oh well another day and it's sunny so I'm going to try and make the most if it 🌞🌞

[CLKD]

'don't think that he had seen the results'  - why didn't you ask when he had looked at them?  You seem angry?

I doubt whether your lack of healing isn't the problem of any surgical intervention.  You have a huge medical history which would make anyone worry if there wasn't a 'good' result, I thought I would be the type of person to constantly check all over after I had breast treatment and radiation: thought I would look at the tattoos and think 'it could come back'.  After each check though: initially 3 weekly, 3 monthly, 6 monthly and then …….. discharged eventually, I am more relaxed.

Let your body heal in it's own time?  The reminder of the sinus leakages must be a worry but over-all, how do you feel? 

[groundhog]

Ladies I am sorry I missed some of your replies.  Taz - thank you will listen to that radio programme in a bit.  Kathleen,  yes my husband is a rugby nut and is talking about going to New Zealand next year but he won't go without me.  I'm trying to explain I'm not the same person but he won't accept it,  he won't change anything to account for the changes in me.  His own fault.  I've decided I won't be pressurised into going abroad,  I dint want the unnecessary stress of it all!
Hi Milly,  yes I've heard about the liver disease linked to IBD.  I'm not sure if it is that,  but knowing my luck............you are right about acceptance and that is half my problem.
I've heard of milk thistle Tiggergirl,  will definitely look into that for a bit of liver cleansing. - thank you.
How do I feel CLKD.  Im OK, not 100% but ok.  I get exhausted easily and have to pace myself,  I'm uncomfortable but not in pain.  I was a bit cross with my consultant because I left hospital assuming he'd seen the results onky to get a phone call saying one of the bloods was abnormal,  but he's a busy man and I'm assured if it had been serious,  he would have known.
Hope you all have a nice weekend ladies,  nice and sunny here today 🌞🌞

[CLKD]

You *are* making progress    ……… when I worked in the NHS blood tests etc. would be checked in the appropriate Dept., then sent to the Consultant/GP who had ordered the tests - as secretaries we filed the tests in the appropriate patient notes.  Anything outside of 'normal' would be flagged with a red star which had to be shown to the Consultant/GP.  If results were within normal limits the Doctors didn't see them until the next Clinic appt..

I think choosing *your* holiday is important.  To go where you are comfortable with.  I remember the stressors of booking and wanted to come home quickly, so that I knew if I'd been OK or not  but of course, a week was 7 days - and very long if anxiety took over  . 

How would you feel if your OH went to NZ with a group of mates? 

I have to pace myself too.  If I do too much or get too keen on something, then I burn up energy = anxiety surges  .  It took years to realise what was causing the sudden surges ……..

[Justjules]

Groundhog, don't know all your full history but I had a bowel access in my twenties, was neglected, nearly died of peritonitis and was diagnosed eventually with Crohns but I have always disputed this as I have never had medication for it from that day on and also I had just got over an infection in a Fallopian tube and I am convinced that it seeped into the bowel and caused the abbess. I had surgery to remove infected part of ileum and was left with an open sinus for 6 months until they sorted it with a further op that same year. It took me two years to recover. That was the start of my HA and left me traumatised as I was a single mum with two young children. Anyway, the reason I am sharing this is that my healing was eventually via trying every alternative therapy possible, a good homeopath, an excellent naturopath and acupuncture a few years later for energy etc. also lots of probiotic supplements and extensive research on alternatives to drugs. Is this something you have looked into at all? Sometimes we have to look further than the NHS for healing ourselves and bodies. xx

[CLKD]

The body heals itself in many cases - but we as humans, can't wait  . Life, movement, survival all takes it's toll; i.e. a frozen shoulder takes about 24/28 months to heal without intervention but because the body breaths, there is constant movement 

[groundhog]

Justjules - hello,  I I didn't realise you had similar problems to me.  I also now have health anxiety I think as a consequence. 
I have looked into alternatives but probably not enough.  I have had reflexology which I found very relaxing,  I try and eat healthy but I have a strange relationship with food now and eat little and often with lots of protein.  I take a vitamin supplement and probiotic.  I think it does take years to recover from this type of bowel event,  I'm 15 months in.  I suppose that's why I reacted so bad,y to the blood test result.  I just seem to get fixated on things now to do with my health , it's quite miserable.  If you are willing to share any of your knowledge on alternatives,  I'd be interested. How did you cope with the sinus? Did it weep ? 

Hello CLKD.  Yes I am progressing I suppose but this experience has left me a nervous wreck.  Plus my life seem to revolves around things I can no longer enjoy so I have to make changes.  I don't think I'd mind if my OH went to NZ on his own,  it's something he's always wanted to do and I can't say I enjoy his absolute passion for rugby.  But at the moment he won't hear of it. 
Thanks again all for comments and advice xx

[Justjules]

Well I read your posts and can really feel for you but mine was over 30 years ago now and I try to forget about it but that's because I am not suffering anymore. Yes, my sinus did weep from the first op in May, after I had a few metres of small bowel removed. Came out of hospital in July and then had sinus sorted by op in the October and then it was all cleaned out as far as I know and was left to get on with it. Told not to have anymore children, or unlikely I could, no medication or advice. Two years later, turned up at hospital app very pregnant and consultant nearly fell off his chair! All was okay and haven't looked back really.

I initially went to a homeopath in Liverpool and to a naturopath who sorted me out a proper diet to follow to help and apparently vitamin A I think was the main one as it sorts out inflammation in the body, gave advice as to how to take it and then acupuncture another time to rebalance all the body energy and also got diet advice from that. This was over a few years and it was a case of finding the right practitioners but I would have tried anything as I was so let down by the medical Drs. I went through hell. Was left on the toilet floor in the hospital prior to my op as two nurses just laughed at me and told me to get up and back in bed. Rang my mum at 6:00am in the morning to tell her I was dying and to come quick and by 11:00am I was in theatre where they found an abscess the size of a grapefruit in my stomach cavity....hence not much faith in Drs!! Things have moved on a lot in 30 years thank goodness but if I can, I always would go alternative as well. X

[CLKD]

How's 2-day been?

[groundhog]

physically ok CLKD,  mentally - not so good.
Cleaning the garden which is good,  just popped in for the loo,  Feel marginally brighter than the morning I thnk.  Thanks for asking xx

[CLKD]

Half a day at a time!  Give yourself time to heal.  Small tasks through the day, I used to make lists the night before so that I could tick off stuff done - however small, it gave me an idea as to what I was actually achieving  .