pancreatitis and narcotic bowel disease

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Hi I'm posting this on behalf of my boyfriend gavin. He has chronic pancreatitis for which he has had part of his pancreas removed. This was caused by excessive drinking. He has now been sober for 3 years but is more poorly then ever and we don't know where to turn next. He's been on extremely high amounts of morphine, gabapentin, amytriptiline and more fore over 5 years and he now has narcotic bowel disease which they have just diagnosed. He has severe stomach pains on lower left side and has an impacted bowel. He bleeds at every bowel movement and since they have upped his gabapentin to deal with this pain he is completely spaced out. Barely awake and falling asleep even while eating or walking around. We have tried to speak to gp and out of hours gp who either refuse to see him or refer to hospital who run scans and say there is nothing wrong or I call ambulance out when it gets too bad and the emergency department are beyond unhelpful and just treat him like a drug addict even when he's not asking for pain killers just help. Has anyone had narcotic bowel disease and can you suggest anything that may help. He also has severe diabetes and we're are struggling with his diet and weight loss. I'm worried that if thi continues he won't survive much longer and we have two young children... Please help if you can.

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  • Posted

    I have a lot of bowel issues related to the pain medicine also.  What is his diet like?  How regularly does he need to take the opiates?  I just got out of the hospital on Saturday, and I spoke with many doctors and the dietician about ways to manage these problems.  I don't take the opiates unless I absolutely have to just to avoid adding to the abdominal pain.  It's a catch-22.  I also am on an extremely low fat diet for the pancreas, but to aid the bowel issues, I need to avoid large amounts of fiber as well.  I take stool softeners, Miralax and Senna daily to help too.  And plenty of fluids, even when I am having an attack.  I try to avoid the hospital unless I know I am dehydrated because I know the feeling of being treated like you are med-seeking.  Prior to the ER transporting me to a larger hospital last admission, they refused to give me anything for the hour long ambulance ride! What has your BF tried to help?
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    • Posted

      Thanks for replying. He still on all the meds twice daily although he has reduced them massively over last couple of months. He is still on 180mg morphine daily and the gabapentin is currently being upped to manage pain. His diet is a mess. He's told not to eat when pancreas flares up but then it messes with his sugar levels. He's on low fat foods but because of his sugar levels his diet is hard to control and he can go days with no food when he's too drowsy as I can't keep him awake to eat. He's taking mutiple stool softness but nothing seems to work as well as fibrogel. He drinks plenty of fluids which is the only good point. The hospital are useless. They gave him all these meds and now it's caused a problem they don't wanna know. The gabapentin causes his drowsiness and seizures but it's the only way to wean him off the opiate and control pain... its a vicious circle
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  • Posted

    I am glad to hear that the gabapentin is at least helping him to manage the pain.  I am supposed to take that, but I don't notice that it makes a difference.  The other thing that I know makes a slight difference is bowel motility is being able to get up and move around.  Is there a time of day that he can at least walk a little, whether it's around the block or around the house?  I admire you for being so proactive in his care.  It must be scary to not even be able to keep him awake to eat.  Sadly, all of these conditions tied together seem to make one another worse.  I have a problem with blood clots and anemia, and I think I near gave my BF a heart attack a few weeks ago because I was near delirious from medication, blood loss, and infection.  I don't know where you live, but if you can get him to a different hospital next time, perhaps they will treat him differently since they are not as familiar with his case.  The ambulance ride I had to take two weeks ago took me to a different hospital, where I was seen as a 'new' patient.  I met with the internists, surgical team, GI specialists, OB/GYN docs, and a nutrition team.  I didn't get all of the answers I needed, but they found things that my local hospital wouldn't have simply because they were trying to familiarize themselves with my illness.  I wish you and Gavin the best of luck. 
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  • Posted

    sorry to hear of your partner's dilemma.  As you know pancreatitis is a really awful disease. My husband passed away a month ago from it, he didnt survive the pancreatic surgery where they removed dead tissue from it. He got blood poisoning and all his organs shut down. He was only 55 and drank a lot when he was younger but had cut back to 2 beers a night for the last 10 yrs.  I was treated badly by the hospital as well, they kept telling me I was a delusional wife, that he was secretly drinking etc.  They thought I was some stupid twit in denial or something, His liver was perfect and one of the doctors said it is unlikely that his liver could be fine if this was alcoholic pancreatitis But anyway...have you talked to the gp about giving him enzymes.  They said that my husband would have to take them when he recovered. They are mentioned a lot in the treatment of chronic pancreatitis. Can you see a gastroenterologist who specializes in pancreatitis?  I did tons of research on it and they recommended acupuncture for the pain of the pancreatitis.  Of course diet too- low fat, healthy.   I wish you the best and I will send out positive thoughts for you and your family.  It is heartening to hear that he made it through this awful disease and hopefully you can find some answers to give him a better quality of life. You are a comendable caretaker for him and God bless you
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