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Pancreatectomy

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Jamiesamp

Jamiesamp

Member
Relationship to Diabetes
Type 1
i will be getting this done soon just wonder what peoples experience have been who have had it done as i`ve herd some horror stories on other site so just want my mind easeing
 
Welcome to the forum. I've not had a pancreatectomy but there are a few members on here that have had a full or partial pancreatectomy and are definitely alive and kicking!! It's a scary operation but hopefully members on here will be able to put your mind at ease as much as possible.

Are you already T1 or will you become a pancreatectomy induced type 1?
 
Hi, I've had partial pancreatectomy. True it is major surgery. I was in royal Liverpool hospital. Mr Chris halloran is my surgeon. I was in hospital for 2 weeks. Your pain control is well managed either by epidural or morphine pump. You will look like a shark has bit you from the scar but I had mine done 3 years ago and scar is much less visible. Can't advise on diabetes. I only became diabetic due to the operation. You will be exocrine deficient . And need to take enzymes every time you eat. I take 20 creon per day. If you're having op to cure chronic pancreatitis be aware it may not work. I'm only saying this as I still have chronic pancreatitis after the op. All the best hope everything works out well for you.
 
Jamiesamp said:
i will be getting this done soon just wonder what peoples experience have been who have had it done as i`ve herd some horror stories on other site so just want my mind easeing
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Of course you only read horror stories. The folk who are doing perfectly well after the op tend to just get on with their life rather than report problems to a forum. And that is the majority of people. Surgery is done to make people better, remember🙂
 
Hi I don't usually post much but thought I should tell you my OH had a total pancreatectomy last year I don't know what age you are but he is 75 and has recovered well. He was in high dependency for a week and in hospital for 3 weeks and is insulin dependent and on Creon but is really doing fine. His was also pre cancerous so we consider ourselves very fortunate to have such a skilled surgeon who was willing to do the op on someone in their 70s.

Yes we still have problems with Blood sugars and it's been a steep learning curve but he certainly is very glad he could have it.

I know everyone is different and we have been very lucky although it has been a change of lifestyle it has been well worth it

Hope our story helps
 
If it's to do with cancer prevention I personally wouldn't hesitate to have the operation. Prevention is always better than the cure. Hope all goes well.
 
mikeyB said:
Of course you only read horror stories. The folk who are doing perfectly well after the op tend to just get on with their life rather than report problems to a forum. And that is the majority of people. Surgery is done to make people better, remember🙂
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In an attempt to redress the balance. I had a TP last year and I'm doing pretty well. My body is still getting used to the new layout of my insides so I still have an issue or two from time to time but overall I'm much, much, much better than before the surgery and have no regrets even with the tricky D trying to take over my life. I'm back at work full time though work from home some days as the travel is tiring. I wouldn't go so far as to recommend a TP but it has turned out ok for me so far. Of course it hasn't been plain sailing so I can wheel out a couple of horror stories from my time in hospital if you like but I can also trot out tales of kindness, laughter and sadness from the same period.
 
Hi again I hope my post didn't seem to say a TP is an easy option I certainly wouldn't like to say that at all as Ref says it's not plain sailing but I just wanted you to know people can get on with their lives and enjoy it after surgery. We are lucky OH is retired so work doesn't come into it but I notice he does get tired easier than before and maybe you are better to go by Ref then us. Good luck
 
Not at all - and tiredness is most definitely an ongoing issue.
 
Ref said:
Not at all and tiredness is most definitely an ongoing issue.
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Just to be different...
I have more bounce and energy than I've had for years. My friends liken me to the Duracell bunny:D
 
I had a distal pancreatectomy along with splenectomy 9 years ago on 19th December age 47. Spent 3 weeks in The Freeman Hospital in Newcastle, fantastic team of surgeons and nursing staff. Mine was because of what turned out to be a pre cancerous tumour. I had four months off work, I only work part time now, I made a good recovery, I lead a full and active life, the main problem is, in my case, is the bowel problems but you just gobble Creon like it's going out of fashion! I hope you're good at taking tablets, they're kinda big! I have a lovely scar that I'm not afraid to show off in a bikini, it draws peoples eyes away from my fat backside! Good luck, any advise or just need a natter about things feel free to PM me. Elaine.
 
Hi, I have recently had necrosis of the pancreas . I don't know what is involved with a pancreatectomy but for my problem i spent almost 4 months in hospital , after 2 months they performed a "skunk" procedure which involved a ct guided drain being inserted into the left hand side of the pancrease and allowing access for the surgeon to insert a tube to allow him to scrap away the decaying material. I then went onto a irrigation system which flushed the pancreas to remove the dead material . from my last scan it looks like I have lost over 80% of my pancreas, I am still healing and only had the drain removed fully last week. I am also on Creon but feel really good my biggest problem now is getting to grips with the diabetes , I am managing to keep my bg in single figures but I really need to gain weight and this is the difficult part. Hope this is of some use , my op was also at the Royal Liverpool and I have nothing but prase to say about the staff there.Hope all goes well.
 
eggyg said:
I had a distal pancreatectomy along with splenectomy 9 years ago on 19th December age 47. Spent 3 weeks in The Freeman Hospital in Newcastle, fantastic team of surgeons and nursing staff. Mine was because of what turned out to be a pre cancerous tumour. I had four months off work, I only work part time now, I made a good recovery, I lead a full and active life, the main problem is, in my case, is the bowel problems but you just gobble Creon like it's going out of fashion! I hope you're good at taking tablets, they're kinda big! I have a lovely scar that I'm not afraid to show off in a bikini, it draws peoples eyes away from my fat backside! Good luck, any advise or just need a natter about things feel free to PM me. Elaine.
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thank you thats the hospital i am going to thanks everyone i know it will be life changing but i know with good management my life can go on
 
You'll be in very good hands @Jamiesamp. My surgeon was Byron Jacques, don't know whether he's still there. He even came to see me on Christmas Day fully resplendent in his festive jumper! It was a "testing" time should we say but I'm still here, alive and twice as ugly! Let us know how you get on. 🙂
 
Jamiesamp said:
thank you thats the hospital i am going to thanks everyone i know it will be life changing but i know with good management my life can go on
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Absolutely! Diabetes management in the early days was a nightmare as I was so ignorant about it all, but now it has to fit in to my life rather than my life fitting into diabetes.
 
thank you been a rough week for me as my father died the day after the doctors told me.
there i are loads of things going though my head like will be able to have kids in future as i heard as a male your equipment can go to sleep etc but i am sure down the line there are places i can go for help if that happens
 
If you mean due to the diabetes, it's much less likely if it's well controlled.
 
thank you i let people on fb and got loads of support my Sister is on insulin and she has been my rock going though thing she even give me some glouse tablets to help going hypo. i got a suprise when JoJo from Take me out side she was diabetic.
 
We do look quite normal, us diabetics, Jamie ! I never met my husband's dad since he died of pancreatic cancer before we got together. You won't do that, and neither will most people who get it now. And the Freeman's specialist subject is all things diabetes just now (various hospitals take it in turns to specialise in certain long term conditions) so you will get massive help with it all.

Good luck!
 
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