Work after Pancreatectomy

[Refandy]

Hi All

I've been diabetic for about 4 years. I have very little pancreatic function remaining and may have to have a total pancreatectomy at some point in the future. I understand the resulting diabetes can be quite difficult to manage so was wondering if anyone on here who has had a total pancreatectomy was able to continue working full time after recovery from the surgery.

Thanks in advance

Andy

 

[kevinproctor]

Hi All

I've been diabetic for about 4 years. I have very little pancreatic function remaining and may have to have a total pancreatectomy at some point in the future. I understand the resulting diabetes can be quite difficult to manage so was wondering if anyone on here who has had a total pancreatectomy was able to continue working full time after recovery from the surgery.

Thanks in advance

Andy

 

[kevinproctor]

i had my pancreaous taken out in dec 2011, it took me 5 months to recover then i went back to work. my job is in construction and i am a site manager

 

[WuTwo]

Had mine removed in December 2008 but because I had colon cancer I had to have chemo as well. I'm office admin and went back to work (very part time, slowly increasing) in March 2009. Now I do about 30 hours a week at work, but take a lot of exercise and feel terrific! If I can help, I will

 

[Refandy]

Thanks ever so much for replying. It's good to know that it is possible to go back to work afterwards - the only other people i know who've had a TP no longer work but their circumstances are different to mine. As much as I'd love to, I'm too young to retire, kids at university - that kind of thing. I'm a project manager and office based but quite busy and stressful at times, plus the commute into London.

I'm already familiar with taking creon and other things to make up for my dodgy panc. I'm on Metformin for the diabetes at the moment. Obviously If I have the op then I'll be insulin dependant so I was wondering if you have been able to control the diabetes with injections or do you use a pump?

@Kevin - I've taken a note of your phone number and may ring you at some point in the future if I decide to go ahead with the TP but I wouldn't leave your number on the web, you could get all sorts of calls.

Thanks again and take care

Andy

 

[WuTwo]

I'm on injections and after about a year of thinking I was doing OK'ish I woke up to the possibilities of long term damage from complications and decided that my best way forward was to take control of the diabetes. I did the BDEC course online because there weren't spaces for quite a while on the local equivalent of DAFNE, and started carb counting and taking a lot of care over what I ate. A few months later I went to a gym specialising in rehab work and they got me started on the road back to proper physical fitness.
Since then I haven't looked back really. My HbA1C is usually in the high 30's. I still weigh every gram of food, and most of my food is home made because it's easier to control what goes in it.

Be aware that after pancreatectomy one problem can be that normal diabetics will, if their blood sugar goes low enough, experience a liver dump when the liver dumps the body's stored glycogen into the bloodstream as glucose. It's quite possible you won't get that reaction any more (I don't) because the cells that trigger it are in the pancreas. You will need a glucagon injection prescribed by your GP and stored in your fridge, just to be on the safe side. I haven't needed mine yet but feel better for knowing its there! My GP didn't prescribe it automatically - I had to ask for it and get the impression the surgery has little experience of pancreatogenic diabetes.

http://www.mayoclinic.org/diseases-...blog/pancreatectomy-and-diabetes/bgp-20056573

 

[WuTwo]

On the other side of the coin, a good thing is that my consultant says she disregards the type 1 risk levels for heart problems etc. when dealing with pancreatogenic diabetics because we are not type 1's and don't exhibit their specific medical problems and responses. The longer we survive the more our risks increase but never to the equivalent of a true type 1 of our age. Her logic makes total sense to me and is one comforting thing.

Don't let yourself be overwhelmed by it all - the hospital DSN's are great and give really good advice.

 

[kevinproctor]

Thanks ever so much for replying. It's good to know that it is possible to go back to work afterwards - the only other people i know who've had a TP no longer work but their circumstances are different to mine. As much as I'd love to, I'm too young to retire, kids at university - that kind of thing. I'm a project manager and office based but quite busy and stressful at times, plus the commute into London.

I'm already familiar with taking creon and other things to make up for my dodgy panc. I'm on Metformin for the diabetes at the moment. Obviously If I have the op then I'll be insulin dependant so I was wondering if you have been able to control the diabetes with injections or do you use a pump?

@Kevin - I've taken a note of your phone number and may ring you at some point in the future if I decide to go ahead with the TP but I wouldn't leave your number on the web, you could get all sorts of calls.

Thanks again and take care

Andy

 

[kevinproctor]

hi andy, i control my diabetes with insuline. i take levimere at 6am in the morning and again at night it is a backing one which is slow release, i then take nover rapid with my meals. depending on what my sugar levels are prior to eating, tells me how many units to inject which you can do into your arms,top of legs or into your tummy. to control my insuline levels, i would rather use the pens than have the worry of dealing with the pump. regards kevin

 

[Refandy]

Thanks again for the replies and the info.
I knew about the 'liver dump' but I hadn't thought about needing a glucagon injection for emergencies - do you have one at work as well?

Andy

 

[WuTwo]

No, because none of my co-workers has ever felt able to cope with the idea of using it. I do have small tins of full sugar coke (20g Carb per tin), a large tub of Glucotabs and an ICE app on my phone's home screen. It's emergency call is to my husband or if his phone doesn't answer then it phones my son. It has full details of my diabetes - dosages, ratios etc and other meds and my co-workers know to show any ambulance men/women my app.

If any of them had said they felt able to help then I'd have a glucagon injection in the fridge but there ya go - I'm grateful for their honesty.

 

[Refandy]

I must admit it didn't occur to me that people wouldn't do it but I agree I'd rather they were honest and say they wouldn't do it rather than say they would and then not.

I like the idea of the ICE app, I'll have to have a look for one.

Take care

Andy

 

[WuTwo]

You too!

Immediately after surgery when it is very painful, remember that the pain does pass. Standing up for any length of time will hurt even after it looks like you're healed, so plan outings accordingly. Even being able to take your weight on your arms by leaning is enough to take the edge off the pain. If you're overweight (and I was) the best pre-op advice I could give you would be to lose as much of the excess as possible because it will make recovery quicker and easier.

I use an app for record keeping (My Diabetes) and am meticulous about entering data; that way I can spot a trend quickly and deal with it. It's just data analysis but accurate records are essential.

I got John Walsh's "Using Insulin" which taught me how to work out ratios, insulin/carb needs when exercising, how to change my basal dosage etc. He also wrote a book called "Pumping Insulin" which I understand is every bit as good, should you be lucky enough to get a pump quickly. Using Insulin isn't available as an e-book, but Gary Scheiner's "Think like a Pancreas" (also a good one) is. I must admit I read voraciously just to get a handle on it all because there haven't been any other diabetics of any sort in my family and I was starting from a position of absolute ignorance. When I decided to get fit again I found The Diabetic Athlete's Handbook invaluable. Written by a diabetic specialist who happens to be Type 1 and an athlete it is hugely informative and helpful

http://www.amazon.co.uk/Using-Insulin-Everything-Need-Success/dp/1884804853/ref=sr_1_1?s=books&ie=UTF8&qid=1390545428&sr=1-1&keywords=using insulin

http://www.amazon.co.uk/Think-Like-Pancreas-Practical-Insulin--Completely-ebook/dp/B005XQ97FK/ref=sr_1_1?s=books&ie=UTF8&qid=1390545491&sr=1-1&keywords=think like a pancreas 2nd edition

http://www.amazon.co.uk/Diabetic-Athletes-Handbook-Sheri-Colberg/dp/0736074937

Good luck!

 

[Refandy]

Thanks once again. I'll come back to the books once I have seen the surgeon and the final decision has been made. Feeling more confident about it now.

You may have come across this already but if you are looking for another one I have been recommended 'Carbs and Cals and Proteins and Fats'. I haven't read it my self yet but know others who have.

http://www.amazon.co.uk/Carbs-Cals-...1&keywords=carbs+and+cals+and+protein+and+fat

 

[WuTwo]

Yes - it's available as an app too, which is very useful!

It honestly isn't the end of all things - I row, cycle, swim, walk, work, cook, clean house - I live a normal life. I get tired but hey, I'm no spring chicken any more. It's just that life is much more controlled now, and there is far less spontaneity. But that's OK - things could be so much worse! It took a while to get fit, and if you have the surgery I strongly recommend that once your consultant gives the OK you get yourself off to a specialist rehab gym and rebuild your fitness. I say use a specialist gym because you need them to be aware of your diabetes, surgery and any other conditions and to have some clue as to what they might mean!

 

[Refandy]

How did you find the specialist gym? I tried a google search but nothing obvious came up.

 

[WuTwo]

I phoned gyms in the area and when they said they didn't have anyone who could help me I asked if they knew of any other gym that might able to. I also asked at my GP surgery because these days GP's often prescribe short courses at a gym - the practice nurses may well have an idea because they tend to deal with the obesity clinics etc. The one they all mentioned is the one I visited to look round and talk to the staff. Although they have the more customary members they also work with recovering heart attack patients and the very unfit and overweight, and those recovering from hip or knee surgery etc. Until they were sure I was managing my sugars correctly while exercising I got a lot of "please check your blood now" from them, and there was a fair amount of hovering and attention paid to whether I was coping physically or overdoing things, which they got rather firm about. It is a small gym and not one where the bodybuilder types hang out - I steered very well clear of them!

If you have the surgery you could ask the physio department at your local hospital for suggestions too because you'll be meeting them very early on after the op when they come to teach you how to get out of bed and stand up.


You're best off waiting until the consultant gives you the nod and you've learned to handle your sugars before you try a session at a gym. I know you're diabetic now but you'll need to be sure nothing has changed in the way your body copes with it all before exercising, and that the medics are happy that everything has done what it was meant to.

 

[neilalastair]

I had 2/3 of my pancreas removed and went straight onto Levimir and aridrA. Splitting the Levimir at 11pm and 11am with 16 units seems to work for me .
I was in hospital for 6 days with a large abdominal opening . No keyhole unfortunately . I was off work for 3 months but did a bit of working from home after 2. For me the first 6 weeks seem to be the worse but after 4 months I was back to light exercise and. Now after a year I lift weights and can even manage pull ups (about 4 of them) I never ended up on creon tablets and they saved my spleen . Follow ups have reveal no more tumors so far but I have MEN1 gene so you never know what might happen . all the best and I am sure you'll be fine . Where is your hospital that you'll be having this done


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[WuTwo]

I didn't know they could do it as keyhole! I had a huge incision - 56 clips! I didn't realise there were alternatives. Oh well - bit late now

 

[neilalastair]

A friend of mine had keyhole for a subtotal he was in Oxford . And I have seen a US website where the doctor claims he does keyhole for total P.. Might be a newer thing that is coming up. I asked my doc if he could do islet transplantation with my op but he said I would have to go down to a specialist hospital in London plus the islets don't either last or take in the first place , so I opted for the straight onto insulin route .



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