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Work after pancreatectomy

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Hi All

I have been diabetic for around 4 years now. I may need to have a total pancreatectomy at some point in the future and I understand the resultant diabetes can be quite difficult to control.

I was wondering if anyone on here has had a pancreatectomy and still able to work full time after recovering from the surgery?

Thanks in advance

Andy
 
Hi Andy, not me personally, but we do have members who have although they may not necessarily see this. Certainly, one person I remember did experience difficulties with control, but a good working solution was found by using an insulin pump, so this is something you might want to start looking into right from the start.

If you don't get any responses I'll try and contact the people I know about for you.
 
Thanks Northerner

Any information would be useful. I know a few people who've had TPs but their circumstances were different to mine before the op.

I have thought about a pump and plan to talk to my GP and consultant about it if the operation becomes more of a certainty.

Andy
 
Total pancreatectomy

Hi Andy
I've had a total pancreactomy (and various other ...ectomies!) it's tricky knowing what related to lack of pancreas and what relates to other missing bits!
You're better off than me in some ways cos you have some knowledge of diabetes already, where i became diabetic rather suddenly and had a very steep learning curve and a pretty useless diabetes centre.
Advice... Hmmm
It's like type 1 in many ways but it does seem to be a law unto itself sometimes. I don't really know what is typical to type 1 and what is different.
It's much better pumping than injecting which I did for a year. I find that my pattern of need for insulin can change over night.
You would also need to take Creon with every thing you eat. It's a pancreatic enzyme that helps to digest fat. Creon is that rare thing - a natural product on which you can't overdose. I take shed loads of the stuff, much more than the recommended dose, but this doesn't worry the docs. I think dumping syndrome is related to this. At one stage I was taking masses of Imodium but my body seems to have come to terms with itself.
I don't know where you live but Bournemouth diabetes centre, where I now go, do have at least one other patient without a pancreas so have some experience.
Make sure you stand up for yourself and don't let them treat you like an 'ordinary' diabetic 'cos you're not! I think my local hospital hate me!
As to work - I'm sort of early retired however I do run a part time business. The majority of the time it's not a problem. There are odd days where I couldn't go to work just cos of dumping syndrome (look it up on the web!) but they're few now.
It's amazing what your body can do without!
If you put susan Rostron cancer bbc into google you'll find me !
If I can help in any way please get in touch. 🙂
 
Hi Susan, thanks for the reply.

I have chronic pancreatitis from pancreas divisum (not alcohol as most assume) and have only a little (2 or 3%) pancreatic function remaining. I also take loads of creon so I'm used to that. I'm currently getting by on Metformin for my diabetes so i'm not used to carb counting or injecting or anything like that.

I know what you mean about Drs - technically we're type 3c but you won't find any information on it on any diabetes website - the best description I saw was on a forum like this where someone described it as type 1 with bells on. My DSN at my GP surgery refused to accept it was any different and told me i'm type 2 - because i'm taking Metformin - and tried to send me on a course which just wasn't suitable. I refuse to see her any more. I was fortunate to see one consultant who 'gets it' and is at a London teaching hospital so she always makes the student with her explain why it is different from the norm, which is more for the students benefit than mine but I don't mind. Anyway, I always ask to see her.

I'm out of non-surgical options and there is not enough substance to my pancreas to attach it to anything so the only option is to take it out.

I'm too young to retire so I just want to be confident I could carry on working afterwards.

I did the google search and read a couple of the articles. Good luck in raising awareness and I hope you remain in good health.

Andy
 
It'll be hard work to manage your insulin requirements and other missing hormones and enzymes after pancreatectomy, but doable - as pottersusan and others prove.

Of course, probably there will be a period of at least a few weeks immediately after surgery when you'll need some time off work, as it's major abdominal surgery. But that's a short term situation.
 
Andy,

I had my pancreas removed 4 years ago due to neo-endocrine tumours (also not alcohol related). Previously I had no issues with insulin / blood sugars and was only advised the night before the operation that the surgeon was going to take the pancreas and not the tumours out. I therefore had to start from scratch as a diabetic. This involved lots of trial and error especially in the first year until I did the DAFNE course. This helped but I found that I had issues with both levemir and lantus. I therefore tried to get a pump only to be told that under NICE I was not a type 1 diabetic. Eventually I got a pump through a different budget. My MAIN advice to you would be to ask that a pump be included in your post operative care. Whilst I still have issues with my diabetes it does seem easier to manage just using Novorapid.

You will need to be prepared for a change in your insulin ratios as your pancreas may still be producing some insulin so you may need to take more insulin. However.......my insulin needs were way lower than the Type 1 diabetics on my DAFNE course.

I'm not sure how good your insulin management currently is but I would say that mine is re-active. I can eat the same things, do the same things every day, only to find that on successive days Ifind that one day my blood sugar is up the next it is down. The same applies to exercise a 30 minute walk one day results in a hypo the next the blood sugar could be in double figures.

Where I do have an advantage over you is that before the operation I had been using Creon for 2 years. This is a lot easier to manage than diabetes especially as it is hard to forget to take the pills as you should take them everytime you eat. I am not that strict as I do not take creon with snacks. Also I seem to have landed on a reasonable regime where I take 20000 units at breakfast and 35000 at lunch and dinner. Occaissionally I will increase the dose at dinner if eating out. Creon isn't something I am over worried about as your body soon lets you know you messed up by the state of your stools.....
Also you will need Domperidone - which I take with each meal.

Work next........I have a good employer and I have a lot of flexibility with working hours and working from home. Even so my work load has changed, I was a project manager but now work in the project office with resulting reduced pressure and face to face client contact. There are many days when I do feel that I am not contributing - it can take longer to do a task or I can re-read an e-mail and find just about every word misspelt.
I have a constant worry that if I was made redundant I would not find another job - I probably wouldn't employ myself.

I would also mention:

Following my operation I have a very big scar and post op hernia which makes it hard to go swimming and wear a tight t-shirt.

Having the pump on one side and the hernia on the other makes sleep difficult.

Most afternoons I am very tired and I can drop off to sleep early evening.

I now have a very short temper and feel down a lot of the time (you will need family to be patient and understanding)

apologies if this all seems a bit dark - but I would have liked to know what life was going to be like before I had the operation. having said that 4 years on I am healthy and living a reasonable life.

More than happy to provide support and help going forward. The first 3-4 months post operation it would be good to have someone to bounce thoughts off. I know it would have helped me.

Regards

Martin
 
@Copepod - I'm expecting to be off work for a few months after the surgery. My main concern is after the initial recovery period.

@Martin - Thanks for the info, i'd much rather know what i'm getting into. I'm already used to the Creon and expect to need more per meal post op. I'm just using tablets (Metformin) for my diabetes at the moment so i'm not used to injecting or using insulin. I'm also a project manager which, as you know, can be quite busy and stressful -tiredness is already a challenge with the CP. None of the people I know who've had TPs are working so it is good to know it is possible to carry on. I've noted your advice about the pump and will speak to my GP if the op goes ahead. And thanks for the offer of post op advice - you may regret that :D

Take care

Andy
 
Ref said:
@Copepod - I'm expecting to be off work for a few months after the surgery. My main concern is after the initial recovery period.

@Martin - Thanks for the info, i'd much rather know what i'm getting into. I'm already used to the Creon and expect to need more per meal post op. I'm just using tablets (Metformin) for my diabetes at the moment so i'm not used to injecting or using insulin. I'm also a project manager which, as you know, can be quite busy and stressful -tiredness is already a challenge with the CP. None of the people I know who've had TPs are working so it is good to know it is possible to carry on. I've noted your advice about the pump and will speak to my GP if the op goes ahead. And thanks for the offer of post op advice - you may regret that :D

Take care

Andy
Click to expand...

Andy - you can extend that to pre-op as well. Some invaluable free advice: - If the op does go ahead make a poster that says something along the lines of "I WILL BE INSULIN DEPENDENT FOLLOWING MY OPERATION" and stick it to the wall behind the bed (might even be worth sticking a post it note to your forehead). I was on a specialist ward but still ended up in intensive care as no one realised I needed insulin.........

Keep in touch - and utilise the Private Message function if approporiate.

Dropping into work mode - I'm working on a ToR and my concentration levels today are not good. It seems like I am adding one paragraph an hour as I keep rechecking the document to cut down on repetition. Scope, Deliverables, Objectives... don't all need to say the samething (apologies to the non PM's for this bit).
 
Thanks again. I'm still waiting for my appointment with the surgeon. I'll let you know what happens in due course.

Take care

Andy

PS - I have the same problem with repetition in those docs and I haven't had the op yet!
 
I think it was me described as type one with bells on!
I was in Southampton for two weeks and then I ticked the boxes for being sent home. My consultant and family disagreed so I went into a private hospital for a week( the bill was painful but it was the right thing to do). I made my first short flight six months after. I reckon it took me 18 months to be as fit as I am now - but do remember I had a lot of bits removed besides my pancreas.
Hopefully your employer will be understanding.
As to counting carbs - if you've got half a brain it's not rocket science. Inevitably you get it wrong sometimes! The problem I have is that sometimes I get hypo symptoms and sometimes not. I'm working on my diabetes consultant in the hope of getting a continuous glucose meter that will talk to my pump.
As you know diabetes does not stay the same - that would be too easy!
I do now forget my pump a lot of the time and I am determined to make diabetes fit into my life, rather than fitting my life around it. It is doable though not always easy
 
On the other hand I feel better than I have for years. I very rarely have an afternoon nap. I do take a small anti depressant dose, but that's more for sending me to sleep!
I do sometimes think the surgeon removed my memory and didn't tell me. My temper is better than it's ever been!
I take at least 3 x 40000 Creon with everything. I could do with a use for all the empty plastic bottles - maybe an extension to my potting shed...
We're all different
 
Thanks, all this is very reassuring. I was worried as I'm too young to retire, kids at uni and that sort of thing. Still being able to take care of my family has been my main concern. My employer has been pretty good so far and hopefully that will continue. Now, if I can just get my wife to stop worrying..........

Thanks to all for taking the time to reply.

Take care

Andy
 
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