Pancreatitis

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does anyone know if they can remove stones from my pancreas

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    Hi , I have stones in my pancreas it seems that they can't remove .

    I was diagnosed with CP chronic pancreatitis last March and been messed about ignored well basically just left .

    I waited 17 week for a urgent app with a consultant at Manchester Royal .

    He informed me that the stones are in my pancreas and that he is concerned about me as i have lost 2 stone . He told me that he wanted me in the ward within next 3 week to sort out my treatment and that i would feel like a new women !

    how ever, 9 week later and still in pain No hospital app ,which now I understand because of this Corono virus .

    I'm goung to ask if they can remove my gallbladder so nomote stones can go walk about.

    once I'm in hospital and sorted I am putting the biggest complaint in possible

    I feel so let down by the Doctors I have seen or not seen

    I have fought my way through thiz I've been told I'm at stage 3 ,but not explained, what this means! I feel totally disregarded, with no regard for me and how i feel.

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  • Edited

    Does anyone else get extreme back ache? I was diagnosed with Chronic Pancreatitis June 2016 and have been on Creon 25000 ever since. I have improved considerably since then with very little support from NHS and no useful advice, but lots of advice on diet etc online which I have been consistently following - lots of greens ,cutting out the bad stuff etc. Now of course The NHS relating to this Dept aren't even answering the phones - I understand we are in an extreme situation with the Coronavirus and that the rest of us will be taking a back seat as far as advice and attention is concerned. However - I wondered if anyone else experiences extreme back ache. Without that I would be feeling almost A1 . I had thought previously the back pain was as a result of ongoing pain I have had on and off all my life from an accident I had at the age of 8 years. However after reading more reports from sufferers on other sites it seems that this is fairly symptomatic of CP. and that far from doing exercises for the back pain that I have thought essential, I should actually have be resting it, which is what I am doing now. About a month ago these pains shot all over the place, but now they have settled around the back waist , midriff area, sometimes going up the left side to the shoulder blade. They manifest most of the time when I work on meals in the kitchen and are reduced when I sit down again.

    Any help, advice or just hearing anyone else's experiences would be so welcome . Thank you.

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    • Edited

      There's a sac of nerves right behind the pancreas it'll cause horrific spasms and bring you to tears. There's the Celiec Plexus block but if you have nerve issues I don't recommend it. Other than that, I found eating six small meals and substituting certain foods helped me when I had my pancreas. I would eat applesauce instead of apples, frozen instead of raw veggies and oranges have a natural anti-inflammatory in them which helped me.

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    • Posted

      I'm beginning to feel scared to eat as it causes problems

      I seem to be able to eat sweet stuff I do have a sweet tooth , I know i shouldn't but I think eating something is better than nothing !

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    • Posted

      I craved nothing but carbs! I totally understand what you're going through. I was on a pasta/rice diet for months lol. Eat whatever you can handle but if you feel pain then rest your pancreas. Resting the pancreas gives it time for the inflammation to go down, you do that by not eating for a couple days. Drink broth/clear liquids. After a couple days try bland foods, if there's any pain then go back to liquids, if not then continue with foods.

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    • Edited

      Thanks for your input - to know that it is ''normal '' is extremely comforting. I do wonder why out consultants don't give us more info on this - or don't they know?

      Duh! I have had more information on this site and the Face book site than any I have been given by my ''specialist consultants''.

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    • Edited

      Ensure - (8-fl oz) bottle of Ensure Original contains 220 calories, six grams of fat, 15 grams of sugar, and nine grams of protein. The top six ingredients are water, corn maltodextrin, sugar, milk protein concentrate, canola oil, and soy protein isolate.[1]

      From my reading the pancreas doesn't respond well to most of these ingredients so I wouldn't use it. What it does respond to well are leafy greens and most greens and other veg anyway. As long as I keep to these plus a little of what I fancy I progress. My plates of food tend to be 2 thirds greens to a third of something else. I have found the digestive system has it's own brain - it usually tells me pretty quickly what it likes and equally what it doesn't like. If I don't listen it will soon let me know in no uncertain terms - painful!

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    • Edited

      There's a plant based Ensure and/or other products like Ensure but when you cannot eat anything my specialist tell me to drink these. It will be different for each individual as to what they can handle. However, if you're lactose intolerant these are okay for me. I have many days where I cannot eat especially since they removed part of my intestines, so liquid diet it is lol.

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    • Edited

      I think it's a grey era, on this fourum I have seen people have the problem we have different doctors or surgeons do different operations I'm confused about it all, I will carry on with the tablets, for an operation will be the last resort for me as I don't like any of them.

      take care

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  • Edited

    Not without removing a portion of the pancreas. The only stones they can remove are in ducts and even that depends on the location. I've had ten ERCPs to widen my ducts but the only stones I had were gallbladder which they removed back in 2003 but it caused me more issues.

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    • Posted

      I think it depends on the person and for me because I had two pancreatic ducts instead of one, my ducts kept getting clogged up more and more. I didn't have issues until after they removed my gallbladder. Then the bowel issues that they don't warn you about. If you do remove your gallbladder, don't eat anything fried!! You will literally be running to the bathroom within five minutes lol.

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    • Posted

      Removing the gallbladder can cause Sphincter of Oddi dysfunction, which results in terrible esophageal spasms. It often results in an intolerance to many opioids (especially Morphine) as well as causing random spasm attacks. That means that if you are in the ER trying to get pain relief, you may wind up in even more pain!! The best way to stop spasms are with sublingual nitroglycerin or Levsin.

      I am allergic to Morphine, Tramadol and Fentanyl. I had to have part of my pancreas removed recently and had it done with Ketamine because I couldn't take anything else. It was INCREDIBLY painful.

      I even had an awful SOD attack last night -- all because I switched coffee creamers!! It can make your life miserable.

      Just make sure that there is clear evidence that your gallbladder needs to be removed.

      Also, there are pancreatitic stones as well as gallstones. So, removing the gallbladder may provide zero relief.

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    • Edited

      I don't know why doctors prescribe Morphine for pancreatic patients, one of the side effects is GI problems and I think pancreas problems. Maybe the doctors aren't aware but it definately makes the pain worse and can even cause bladder spasms. I too am allergic to Fentanyl which contributed to my pancreas symptoms. I hated being on Ketamine in the hospital, I couldn't talk correctly or anything. I don't like to be out of control where I feel drugged up or loopy. Usually my pain medication makes me energized, I always get the opposite effects. I completely agree with you, don't remove the gallbladder unless it's necessary, I wish they kept mine in!

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    • Posted

      Yeah, Morphine is the devil. I thought for a while that I was also allergic to Dilaudid, but it seems that I was having problems with how quickly they dosed me. And I hope to never need Ketamine again. I was trying to explain how much pain I was in after surgery, but couldn't form the words. UGH.

      Regarding gallbladder scans, someone told me recently that the HIDA scan is not the best diagnostic tool for gallbladder. I don't know if there is a preferred imaging tool?

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    • Posted

      They did an ultrasound on me for my gallbladder but I had flu like symptoms and thought I had an ear infection because the pain was radiating up my neck and to my ear. They pressed on my belly and I screamed, I didn't even know my belly hurt lol. They told me I needed emergency surgery the next morning. I started having issues a week later and they performed exploratory surgery after that. They took out my appendix and said I had adhesions. I was never the same in/out of the hospital ever since! They never told me back then I had Pancreas Divisium and you can't tell me you're going to take out a gallbladder and not know there's two pancreatic ducts instead of one. It's too hard to find pancreas specialists nowadays. I believe nowadays they can treat a gallbladder through an ERCP and diagnose through EUS but I don't remember since my focus was on the pancreas.

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    • Posted

      Weird, I was just reading about gallbladder pain manifesting in the shoulder and jaw. First time I had heard that.

      I had left shoulder pain (bursitis from sleeping on it), and when I tried to massage it, it zinged into my ear and nearly deafened me. The body is do weird...

      I wonder if they even knew what divisum was when they operated on you...

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    • Posted

      oh see I feel so ignorant! the truth being I've just been left ! I don't know what's going on . I know I'm at the last stage and he said it is bad ! but I really don't understand what the hell is happening or what is going to be done! 2to 3 week in hospital to make me feel like a new women ! Yeah right ! am I going to die ? is this going to kill me ? I asked about reg cancer testing He told me that because I don't drink that won't be necessary ?

      They found a nodule on my lung Im suppose to have reg XRay to keep a check on this ... have they NO !

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    • Edited

      You're not ignorant, you just don't have a specialist explaining anything to you. Trust me when I say we have been there. If you're having gallbladder issues and it needs to be removed then get it removed but if it's your pancreas, see a pancreas specialist not a GI. A regular GI doesn't have enough knowledge of the pancreas. You can live without both organs, I'm living proof of it. My pancreas was removed this past October.

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