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HELP please with My sons chronic pancreatitis

Posted , 4 users are following.

paul90974
paul90974

My son has had chronic pancreatitis  for a number of years now (he's only 25) he doesn't drink or smoke, He under a pain specialist now and every time he goes they increase his dosage, my lad is in pain 5 out of 7 days all year round,I am after advice what to do next it's killing me seeing him hurt so much, he's had his gall bladder removed.

His ears go a red colour when he has these attacks,

 

0 likes, 10 replies

10 Replies

  • Shortie79
    Shortie79 paul90974

    Posted

    Do you know how he got it? My GI specialist advised me it’s not common for people my age (I was 37 at the time) to get chronic pancreatitis unless you have a family history or another condition, one being cystic fibrosis. I advised that specialist I had no family history of either but I didn’t know my biological father’s side of the family. I had to get a genetics blood test for CF which came back negative. I had been in agonizing pain for a year (even on pain meds for a different medical condition) but the pain medication wasn’t touching this pain. The GI specialist ordered a MRCP which revealed I had Pancreas Divseam (congenital abnormality where you’re born with two pancreatic ducts that never fused together). Throughout the year I had a series of tests, none of which caught my two ducts. I was sent to a pancreas specialist who performs ERCPs every other month for treatment. I have two narrow ducts that get clogged and apparently that’s what caused my chronic pancreatitis. The doctors go in and dilate my ducts. I’ve had a temporary stent implanted and removed already. Each individual is different but I would see a pancreas specialist. ERCPs are also used to treat pancreatitis. Things I was told to do during an attack … don’t eat any solid foods for a couple days. You need to rest the pancreas but stay hydrated. Ensure and chicken broth are good for days you  needs to rest your pancreas. You also need to be on a low fat diet (I was already on a low fat diet because I don’t have a gallbladder or appendix). Switch to six smaller meals rather three big meals as it’s easier on the stomach to digest. He may need to be on digestive enzymes if he’s not on them already. Heat packs on the stomach and upper back help for some pain. I was advised there’s a nerve block for chronic abdominal pain but I don’t recall the name. I’m sure you already know a lot of the above but I really didn’t get any answers or started to feel any relief until after I saw a pancreas specialist. The ERCPs have helped me with my symptoms. I still have pain but it’s bearable. I’m no longer losing weight and I’m slowly gaining my strength back. I’m 38 and still consider myself young but chronic pancreatitis knocks you down. I’m also a mother, I couldn’t imagine having to watch your child have to endure such pain. I’m so sorry for you and your son. I truly hope he finds relief soon. 
    • DJ-RN
      DJ-RN Shortie79

      Posted

      That is very good information you gave her. I’m sorry both of you have it so bad. I have chronic calcific Pancreatitis. I have 4 stones embedded in the head of my pancreas. I had total blockage of the main pancreatic duct and had ESWL with ERCP. I’m doing well now but I have flare ups some. I just pray they don’t grow and re obstruct another duct of vessel. My dad died at age 59 with pancreatic cancer and his mother of Pancreatitis. My risk for pancreatic cancer has went up 20 to 30 fold. They watch me closely. I’ve had some episodes of pain but nothing like you and others experience. 17% of those with chronic Pancreatitis doesn’t experience pain and I’m fortunate to be one of them. But, when it does flare up I go NPO for several days other than juice and water and my Dr. gives me Dilaudid P.O.  as soon as it starts to override the pain and stay on top of it. That works for me. I take 20mg Oxycodone Tabs q. 6 hours. I have other bone and joint problems that keeps me in pain. But not that much from the pancreas. I can only imagine what you’re going through. As an RN I have cared for patients with severe Pancreatitis and its Tough. The pain is like noneother. I wish you well. 

      DJ

    • Shortie79
      Shortie79 DJ-RN

      Posted

      Thanks for the compliment. I used to be a paralegal before my medical conditions took over. I always research my test results, doctors advice, medical terminology and options. I feel I need to educate myself with what’s happening to my body. I hope your stones don’t move or cause any future problems. Have you done a genetic mutation markers blood test? It screens for pancreatic cancer. My pancreas specialist had me get one and told me if I tested positive then he likes to remove the pancreas and have another organ act as the pancreas. (Technology nowadays is incredible). Fortunately, I tested negative for the mutation marker.  I hope your bone and joint pain don’t give you too much trouble. Take care. 
    • paul90974
      paul90974 Shortie79

      Posted

      Hi Shortie

      Thanks for your post, no family history of Pancreatitis, they doctors say that you get Pancreatitis through smoking (he dont smoke) drinking alcohol (he dont drink) and a third is unknown what causes this so he falls into the category.could you tell me what ERCPs is please, also any advice on a low-fat diet, please.

       

    • Shortie79
      Shortie79 paul90974

      Posted

      There’s many different ways to get pancreatitis. There’s medication induced pancreatitis, idiopathic, alcohol, congenital abnormality (like me), just to name a few. Whoever is informing you there’s only three ways to get it, is giving you misinformation. Your son is too young and should have further tests done to get to the route cause (in my opinion). An ERCP is like an endoscopy (they put you to sleep) but they concentrate only on the pancreas. They won’t just perform this procedure because of there’s risk of a pancreatitis attack. I only had an attack with my first ERCP but it was very mild compared to my other attacks. I haven’t had any further attacks with the ERCPs and I go every other month for them. I would ask for a MRCP first, it’s a noninvasive test which can show if the pancreas is working properly. As far as the low fat diet, each person is different. We can develop food intolerances without knowing it, therefore you might want to speak to a dietitian to make sure your son hasn’t developed any. I mainly eat ground turkey, pork roast, chicken and maybe once a month I’ll eat lean red meat. I can only drink fat free milk (food intolerance) but I also drink two Ensure a day. I eat oranges because it helps with my abdominal pain but I can’t drink orange juice as it upsets my stomach (it’s weird I know). I eat applesauce instead of apples because it’s easier to digest. Basically stay away from fried foods, cheeses (anything that’s high in fat). Raw veggies may be hard to digest depending on the individual, I was recommended to steam my veggies. I also eat pasta and rice. You might want to research for a chronic pancreatitis cookbook. 
    • DJ-RN
      DJ-RN Shortie79

      Posted

      Indeed there are. Also, there’s gallbladder gallstone Pancreatitis. Yet, most of those with Pancreatitis usually is a result from a history of alcohol abuse. I forget the percentage but it’s very high. Like you said, with idiopathic  they just don’t know. Perhaps genetic. My father died from pancreatic cancer and his mother my grandmother from Pancreatitis. I have four stones left deeply embedded in the head of my pancreas. So there’s also calcific Pancreatitis. 

      DJRN

    • Shortie79
      Shortie79 DJ-RN

      Posted

      Yeah there’s many different ways to get pancreatitis. I was researching it when I found out I had atrophy of my pancreas but before I knew I had Pancreas Divisum. I even thought perhaps I got it when my gallbladder was removed because I had a stone on my pancreas but that was back in 2003. Little did I know I had two narrow ducts that were getting clogged up. It’s amazing what the body can do and how much we can handle. I’m fortunate my condition isn’t hereditary but it still scares me that something might be passed down to my kids. I don’t want them to deal with what I go through. I hope you don’t inherit your family history either. Take care DJ. 
  • DJ-RN
    DJ-RN paul90974

    Posted

    I am so very sorry to hear about your son’s condition. Pain is horrible. He needs to see a top specialist and see if his pain might be controlled better on higher doses of opiates or consider, if he’s a candidate, and I only say this as a last resort, to speak to someone and learn what options are available or he is a candidate for. If his condition is that bad with as much pain as you say that want go away, there is surgery available to treat those in excruciating pain. It’s called a Whipple procedure or Frey’. The surgery is very invasive but it might help with his pain. I would be hesitant to have that surgery unless all other avenues prove to be disadvantaged. Many people undergo this type surgery for pain relief but again, I would talk with a specialist and find out what options he has. They are coming out with new experimental things all the time. I had a stint placed in my pancreas via ERCP. That too might be an option. I don’t know what type of Pancreatitis he has but you must take him to see one of the best Dr’s even if it means traveling to do so. I take it you are not from the US? You used the term “lad” and that’s usually British I believe. Just guessing. Please make sure he is under the care of a top specialist. I’m so sorry he’s in so much pain. Has he tried fentanyl patch? That is quiet strong. Again, I don’t know his history or any details of what caused his Pancreatitis to give you any other suggestions. But, he MUST BE under the care of one of the best Drs you can find. And I don’t mean a general pravtioner or internal medicine. I’m talking about a very highly recommended GI specialist or endocrinologist. Pancreatitis is a progressive disease and it usually just gets worse over time or, often will stay at the degree where it is now. Research Endocrinology and the pancreas in your area. 

    DJRN

    • paul90974
      paul90974 DJ-RN

      Posted

      Hi DJ-RN

      Thanks for your post, my son is under a Pancreatitis specialist but never get to see her and he always gets to see someone else, Yes I am in the UK, He is also under a pain specialist and every 3 months we get to see him and I explain the situation and the pain he's in the specialist just ups his dosage,this seems to work for a couple of days then he's back in pain,my lad is also autistic and has been in and out of hospital for years and is getting fed up with opps & needles, the pain specialist did mention about a patch but said if he use this my lad will be addicted to ths patch, not sure if its the fentanyl patch you refer too?

      I seem to be hitting a brick wall with the doctors and specialists now?

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