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Type 3c Diabetes

Discussion in 'Type 3c (Pancreatic) Diabetes' started by leather_ferret, May 24, 2010.

  1. Shar67

    Shar67 · Guest

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119846/

    Alcohol is biggest cause of chronic pancreatitis. If your panc is damaged to the point you become diabetic then you have chronic panc. Removal of gallbladder usually sorts out pancreatitis caused by gallstone (though a very tiny % may still produce stones without having gallbladder! student doc guess was 5% consultant said is was more .5 % you can drink alcohol after 6 months or so. If your panc is damaged by alcohol you shouldn't drink alcohol again. If the doctors don't know what has caused pancreatitis it is also advised not to drink alcohol. It is also noted the drink of alcohol might not cause problems on day it was drunk but could be months later.
    Repeated acute attacks are usually caused by alcohol or they don't know cause, repeated attacks usually lead to chronic.
    I am in pain every day, every single day, from the day of 1st attack 2012 still now, no let up no stopping, reason Unknown, but the more you know about the disease the better you can deal with other issues it causes.
     
  2. sean1964

    sean1964 Type 3c · Well-Known Member

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    Heya Shar

    Again where do you get these from??

    "Repeated acute attacks are usually caused by alcohol or they don't know cause, repeated attacks usually lead to chronic."

    I have found no evidence for this. Do you honestly think "they" know?
    I just wonder who is collecting these stats??
    What is their source.

    I just find so little real evidence for anything to do with pancreatitus generally. With all the apparent medical oversights (?) I read of - would any tally of the cause (really is there such a thing?) be accurate.

    In particular 30% is a "dont know"
    X% (depending what u read) is alcohol caused.
    What level of alcohol consumption gets you from "dont know" to "alcohol caused"??
    Is this consistent across doctors / hospitals?
    Can we trust the acuuracy of the person ticking the boxes?
    Which boxes? Where do these "stats" come from?
     
  3. Shar67

    Shar67 · Guest

    If you read the post you will see link at top
    One of the biggest problem people have, you can join a group to ask yourself, is getting doctors to treat pancreatitis without asking how much alcohol do you drink, telling you to stop drinking alcohol and not believing if you don't or have stopped. The fact doctors are asking this makes it difficult to get the treatment you need straight away.
    As to how much alcohol causes pancreatitis, who knows, one glass of wine, 30 years of a bottle of wine a day.
    When people are diagnosed with pancreatitis and start googling it, they find that 1 it is caused by alcohol, 2 if it becomes chronic you will be dead within 5 years, a lot of my group and others have tried swamping internet with info that, 1 there are many reasons to get pancreatitis though alcohol may be a cause, 2 chronic is rare and can be managed if you follow a low fat diet and don't drink then your life expectancy should improve.
    The group also suggest you get a pancreatic specialist rather than a gastroendologist.
     
  4. Kirktown

    Kirktown Type 3c · Active Member

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    From my own experience of chronic pancreatitis ( 14 stays in hospital ) I don't actually think how much you drink has as great a bearing than stopping drinking as soon as you have had even one bout. Alcoholics will find it virtually impossible to stop drinking without a great deal of support. I had my last bout after 6 months tee total but it was milder ( Only 1 week in hospital! ) and thankfully I have had no more since. The diabetes took 11 years to surface and I was never told that this could be a possibility, not that that mattered as there would have been nothing I could do to prevent it anyway.
    I must say I am very sorry for those who do suffer through no fault of their own. I was treated like dirt in hospital because I was alcoholic and to be treated with suspicion when you are not is horrible.
     
  5. Shar67

    Shar67 · Guest

    The thing with alcohol in Britain, is it is a huge part of our socialisation, we meet in pubs and bars, we take a couple of cans to the picnic, bbq whatever. If you don't drink people want to know the why not, a simple I just don't doesn't seem to cut it. Having pancreatitis through alcohol must be horrendous as you are battling 2 things at once.
    To me people who have pancreatitis through alcohol are no different from me, no matter how we ended up on the pancreatitis road our journeys on it will follow a similar path, the harder road is the huge change to your lifestyle, some will play Russian roulette with alcohol as it may not affect you the day you drink but a year down the road.
    I think I was lucky, I knew I would become diabetic it just happened quicker than myself and the medics thought. It became one less thing to sorry about.
    The treatment and advise given to pancreatitis sufferers varies so much from region to region, and people seem to be left high and dry, not given advice on diet or alcohol consumption.
    I'm not an expert on the subject but getting to meet via forums and IRL, there is lots of personal experience out there that helps more than anything said by medics.
     
  6. sean1964

    sean1964 Type 3c · Well-Known Member

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    Thanks, read the link, second time around.

    I couldn't see where they got these % from. Which study? which patients were observed and questioned etc?
    I see idiopathic has been reduced to <5% at the bottom here. What happened!? when i've seen it at 20 and 30%??? They just shoved them in the alcohol section??

    Like you say the diagnosis and treatment of pancreatitis appears so sketchy across regions / hospitals / GP's I always wonder where the original figures come from. You think they ask hospitals? Send a survey to GP's? Personally I wouldn't trust those sources to be correct in e.g. my case (and many others going by the panc website), my current GP aside ofc.

    How would you collect figures to show the % causes of CP?

    The ones (%) on the NHS site used to be a lot different to that when i first looked (I think, old brain lol).

    Sean
     
  7. Shar67

    Shar67 · Guest

    I would think that hospitals provide information, though there might be discrepancies in figures as as you say some might be lumped with alcohol when it isn't. The other issue is there is very little research in panc disease. If you look at cancer ones like breast and cervical, you have a better survival rate than 40 years ago, pancreatic cancer hasn't changed one bit in 40 years.
    I know one group who are trying to get more research by raising funds, they are looking at past studies that stopped due to lack of funding.
    I have just read in Tony Poulsons book that alcohol pancreatitis can develop if some one drinks 3/4 glasses of alcohol per day for 20/30 years, though I have seen on a few reality to programmes, teenagers being admitted to hospital after a holiday binge. So I don't think anyone has really pinned down why some get it and others don't.
    My nephew had an alcohol problem and we have a laugh and say I got his illnesses while he had the fun. Thankfully he saw what pancreatitis can do and stopped drinking
     
  8. sean1964

    sean1964 Type 3c · Well-Known Member

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    One thing Shar - if you have CP - how would they know for certain if it were caused by alcohol or not.

    Yeah I think these made up % links with alcohol are 2 things.

    1. They assume a patient who has an alcohol related illness e.g panc from alcohol, injuries from drunk driving etc (?). should receive inferior treatment.

    2. It saves using money on science to make decent studies into acute and chronic panc. 'cos no-one cares about alcies.

    Why make up bogus figs. / feel the need to mistreat (e.g. not investigate fully, well people with CP know what I mean.).

    Not a clue. There you go. Obviously I believe there is a link with alcohol, dont drink myself, but watch out for % pulled from nowhere, and stuff like this......

    How does Tony Poulson know this? Where is his evidence - i mean empirical studies.....How on earth...???

    What % of cases does "alcohol" panc not develop drinking this amount?
    By alcohol panc he means "caused by alcohol" even tho this cannot be checked?

    Is this like "car crash" as opposed to "skiing accident" broken leg.

    "I have just read in Tony Poulsons book that alcohol pancreatitis can develop if some one drinks 3/4 glasses of alcohol per day for 20/30 years, though I have seen on a few reality to programmes, teenagers being admitted to hospital after a holiday binge. So I don't think anyone has really pinned down why some get it and others don't."
     
  9. Shar67

    Shar67 · Guest

    Maybe when docs ask how much alcohol you drink during assessment, if you say none then they look at other causes, one junior doc said to me, white, fat , over 40, gallstones. Later he came and said you haven't been handling scorpions have you. When consultant came he said I was a very very interesting case, amalayse and lipase was 25000 & 30000 he said you should be dead.
    Every time I see my consultant it is the 2nd thing he says, do you drink alcohol, 1st thing is have I seen you before, great, read the notes.
    So we are swept up in the alcohol and drug chasers, I'm on some pretty heavy duty drugs but the don't take pain away, it always surprises me when i get a hypo hangover, you would think they would at least stop that.
    On a positive note if it wasn't for the pancreatitis, I wouldn't have been scanned (lots) and the ovarian tumour wouldn't have been seen (there is some very short studies on female hormones causing pancreatitis), the tumour would have been like a silent assassin, so pancreatitis although it almost killed me it also saved my life.
     
  10. Kirktown

    Kirktown Type 3c · Active Member

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    Alcoholics will always lie about their consumption and minimise it. Its a disease of the mind as well as the body and I expect many consultants know that they don't tell the whole truth. By the time I got to hospital with an attack of pancreatitis I physically hadn't been able to drink anything, even water, for 24-48 hours so my blood alcohol readings were nowhere nearly as bad as they would normally have been. The biggest problem I encountered was I was simply told to stop drinking. Alcoholics just can't stop drinking like that. If they could there would be no such disease. It took me years of denial before I got into rehab and followed it up with proper treatment. It might surprise some of you but GPs get one afternoon of training regarding alcoholism and other addictions during the whole course of their medical training.
     
  11. sean1964

    sean1964 Type 3c · Well-Known Member

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    Hiya Kirktown!

    An afternoon more than panc then! boomboom!!

    Is it really their job tho? Like most things, patient goes to GP with complaint, GP fixes or usually refers e.g for alcohol.
    There are lots of specialist alcohol clinics, no? I'm sure the GP will refer or give advice?

    If you are going to your GP with signs of panc. Then hopefully he will take heavy drinking into account in diagnosis, order the tests / scans to confirm if panc. Advise against drinking and offer help if you feel you need it? i.e a referral to a help group or something.
    Seems fine to me.
    That can break down ofc if the GP cannot recognize the symptoms of panc.

    Everyone (nearly) hates giving up alcohol. Pretty sure it's the first question I asked when I got the diagnosis / prognosis in A+E.

    Still, the panc pain always works as a diversion. I used to love a beer, me. Don't even think about one during football now. That could be the stomach doing somersaults and the back end being a party pooper tho.....
     
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  12. Diddidum1

    Diddidum1 Type 1 · Newbie

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    Hi. ...newbe here.
    Also the middle of the night! But would like to continue discussion at some point. I have t3c diabetes. ...follows pancreatic necrosis and gaulbladder removed. Plus Addison desease and more! Insulin and steroid dependent and more! Finding med management difficult as you may speculate.
    I found this thread extremely interesting and informative. I need to explore the site and thread archive then would very much be keen to chat and share. I'm glad I stumbled across this what appears on initial impression a fantastic resource!
    Regards
     
  13. Shar67

    Shar67 · Guest

    Welcome @Diddidum1
    I will tag @daisy1 to give you some information on the site.
    I have found talking to other people with panc issues a lot more helpful than anything doctors have told me.
    If you have any questions just ask.
     
  14. Shar67

    Shar67 · Guest

    @Kirktown
    Yes people do tend to not admit to how much they drink, and even if you haven't had a drink for 24 hours your body and blood will still show signs of consumption which doctors will be looking at.
    I agree that the help offered is not great especially when you have been in a life threatening situation. There will always be some people who don't want to stop and others who try very hard without a lot of support.
    I know with my nephew, he always slipped back into old habits. Part of his problem was he had denial as he was a functioning alcoholic, had a full time job thought he was just being young. One day he asked if he could walk the dogs with me, he walked about 100 yards and collapsed, he ended up in hospital, whilst in there Amy Winehouse died, he was the same age as her. It was the wake up call he needed, he had to wait a couple of months to get into a residentail programme, half way through treatment he thought he was 'cured' he wanted to leave programme, the only way to have him stay was to have him sectioned for 28days, his mum said no, but his grandad signed the papers. When he finished programme he then had to go to outpatients and AA, it has been hard but worth it for him. The flip side is how many people fall through the cracks of waiting for a programme and the number of spaces available.
     
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  15. Kirktown

    Kirktown Type 3c · Active Member

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    This is so true. It's very complicated. People don't like to admit they have an alcohol problem in the first place and if it's not a problem ( or they don't see it as a problem) they don't imagine a social drink will do much harm. As we know whether you are alcoholic or not any drinking is a no no once you have had pancreatitis. I am very glad your nephew is getting the support he needs. Unfortunately there is no cure for alcoholism. The only reliable treatment is total abstinence and AA to help. I like to remember the definition of insanity is ' Doing the same thing over and over again expecting a different result '. Iv'e actually found many AA principles have helped me since I have started my insulin regime. I'm just taking life a day at a time and consider myself fortunate that at least I have a treatment option.
     
  16. jonmac

    jonmac · Newbie

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  17. jonmac

    jonmac · Newbie

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    Hi Dave,
    I have the same problem. My pancreas doesn't produce Glucagon either and this means I can often get hypos. I saw a consultant last week and he switched me to Toujeo as a basal insulin. It has only been a week so far but the consultant assured me it will work better than my old Levimir insulin. I hope so.
    jonmac
     
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  18. Kirktown

    Kirktown Type 3c · Active Member

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    I hadn't heard about Glucagon levels before ( But this is all fairly new to me ). My insulin levels are coming down but they're not ideal and I have had quite a few hypos at home. I now have a fear of going out in the car and taking a hypo so I admit I don't take as much insulin in the morning as I would rather be a bit above the ideal than below. I must mention this to the specialist when I see them again on the 21st Nov. I am assuming that any specialist will be familiar with type 3c - are they?
     
  19. Kirktown

    Kirktown Type 3c · Active Member

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    I discovered a telling piece of info at my last hospital visit. I asked the consultant why when I was insulin dependant Type 3C was I classified as Type 2 on some hospital paperwork. I was beginning to think I must have misunderstood my original diagnosis. She explained that the hospital computer has only two choices to enter - Either Type 1 or Type 2. They have no category for any other type of diabetes so they lump us into Type 2. Is it any wonder that there is so little information if the hospital statistics don't even allow for the condition as a seperate illness. I don't know if this is Nationwide, perhaps other do?
     
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  20. JRW

    JRW Type 1 · Well-Known Member

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    Although it's much akin to T1.

    When in hospital I found the knowledge levels of the staff to be poor, I only got a straight answer from a consultant. Although a somewhat cryptic one.
     
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