Whipples Operation - questions

hello all

I'm due for Whipples next month due to a tumor on the ampulla - at this stage thought to be benign - but it's growing up into the bile duct - they're not sure how far ... I'm wondering if the operation is as bad as the anticipation ?

Can anyone tell me let me know what to expect ? Do they cut your breast bone or ribs or just an incision ?

My Surgeon wants to re attach my pancreas to my stomach instead of my intestine - has anyone had this done with success is this usual ?

Does feeding via the neck tube hurt ?

many thanks in advance - Mel xxx

Hi Mel,

Welcome to the forum

Hi had a whipples op nearly 2 yrs ago to remove a tumor on the head of my pancreas.

The small bit of pancreas remaining is sewn directly onto the stomach, and surprisingly makes enough insulin for me not to be diabetic - but does not make the enzymes for me to digest my food, so I take Creon capsules with all my food.

The breast bone is untouched.

There will be a large incision made from one side of your stomach to the other - literally running just under your ribcage in a slight arc shape. You may have staples and internal stitches....the staples look horrific, but trust me the scar should heal quite neatly regardless of how it first looks - I'm happy to wear a bikini down the beach as it's barely noticeable.

The op will take roughly 8hrs. You may also have your gallbladder, duodenum and bile ducts removed during the op. You will probably have an epidural up between the shoulderblades to numb from the chest down, this will remain post op as part of the pain relief regime. There will be several tubes sticking out of you when you wake up, about 6 abdominal drainage tubes, 1 may be a jej-peg (access to the lower part of your stomach for feeding) but the rest will have bags that will fill and need emptying and recording. The feeding tube in the neck I am not familiar with, I was fed a milky substance straight into the blood stream via a cannula in the arm (something I would highly recommend to avoid!!!) so hopefully the neck tube is a better option.

This first 24hrs you will probably be in intensive care. The next 2-3 days you will be in a high dependency unit, and if all is going well you will be moved down onto a normal ward that is geared towards upper gi op patients.

You will be allowed liquid foods when you start to open your bowels as they want to make sure everything has woken up and is functioning properly post op, this may take several days. I had to wait 9 days before I was allowed any food and I have to say it was probably the worst part of the experience for me.....I could have quite easily mugged the old lady in the bed next to me for her portion of porridge in the morning!

Personally, the sooner I started eating the better I started feeling, but everyone is different.

Sleeping will be difficult as you will be monitored closely, and with all the tubes the catheter, the PCA (patient controlled anaelgesic) you will feel like a puppet, strung up.

Make sure you have:

A comfy pillow

Baby Wet wipes (helps you feel fresh as you won't be able to wash and my nurses didn't offer to wash me)

Disenfectant wipes (be vigilant with anyone who comes near you, your tubes, your stuff - I got C.Diff whilst on the ward, and it's the last thing you need when trying to recover)

A good book

A rubbish bag hung close to the bed (you won't be able to move, you want everything in arms reach)

Your mobile phone/charger (my call button wasn't working for 4-5days so the nurses didn't know I needed help - I used to have to call the ward directly and ask for assistance)

A good book (although the first few days you will be out of it, I would say from about the 5th day onwards you will want to read or have some form of distraction) or an ipod/radio with headphones

Lip balm (as they do not allow even water for the first 3-4 days post op your lips may get dry and cracked)

I also took in a jar of manuka honey to help start building me back up, but I had been very very ill prior to the op - hopefully you have a decent 'reserve' to help see you through. The sooner you can eat and start moving around, the better you will feel.

If there is anything else you need to know, just ask and I will try and answer - it's not an easy op to go through, the 'trying to pooh whilst laying down with a cardboard potty underneath me' is listed quite high in the 'things never to do again' list....

Hope the above helps.

Kind regards,

Juliana

Oh Juliana - I cannot begin to thank you for telling me your experience !

Your description really gives me a good idea of what to expect now ! Have made a note of the list you've suggested....

I was concerned about the pancreas going onto the stomach as I read that food can more easily go into it there causing pancreatitis.

I'm pleased for your sake that you're not diabetic - that is also a concern for me ...

I'm so sorry to hear you had infection to deal with ... that must have been tough... I'll get disinfectant wipes for sure !

You poor thing having a broken 'help' button - I can't believe it - that must have made it way worse for you !!!

Good to know they don't cut the breast bone at least ...

So thank you for your honest but kind descriptions - I'm ever so grateful...

Huge big hugs to you- Mel xxxx

Juliana

Just thought of some more questions ...

I'm wondering - why did they put your pancreas on your stomach instead of the intestine ? And why do they take the duodenum ? My surgeon said he's taking my duodenum out also ... I'm just not sure why ?

Thank you so much again for your reply to my post - it's been ever so helpful.

Warmest regards - Mel x

Hi Mel,

It's true apparently having the remaining pancreas sewn onto the intestine is supposed to make digestion easier - I cannot recall why they didn't sew mine on, but chose the stomach instead - I'm not sure if it was related to the amount of pancreas I had left and the way my intestine was positioned.

The duodenum I think is slightly connected to the head of the pancreas, usually a whipples op removes the lower end of the stomach too - but the op has progressed today and is able to preserve the pyloris, this makes life for the likes of us - much easier. So the removal of the duodenum is because I think it's much harder to try and slice the pancreas away from it without causing lacerations or leaving possible cancerous cells.

If you have a look at this picture it will give you an insight as to how it's all connected:

http://images.google.co.uk/imgres?imgurl=http://daphne.palomar.edu/ccarpenter/Models/pancreas_spleen_duodenum_posterior.jpg&imgrefurl=http://daphne.palomar.edu/ccarpenter/Models/duodenum_pancreas_spleen_posterior.htm&usg=__V03oFeQ9iUy_ipFc8o8vF0CEb4g=&h=1044&w=1680&sz=56&hl=en&start=8&um=1&tbnid=T3dGOfsmdu6FhM:&tbnh=93&tbnw=150&prev=/images%3Fq%3Dpancreas%2Band%2Bduodenum%26hl%3Den%26client%3Dfirefox-a%26channel%3Ds%26rls%3Dorg.mozilla:en-GB:official%26sa%3DN%26um%3D1

Kind regards,

Juliana

Hi Juliana

Your replies to me have been invaluable ! I can't thank you enough. You have a really nice way of explaining things - casual - friendly - but very informative. I've been feeling really good since reading your replies...

I know it's not going to be a picnic - but hearing your experience is somehow heartening....Although I was sorry to hear you had to endure the broken button for the nurses - and the infection ... great that you're out the other side now !

Warmest regards - Mel xx

Hi Mel,

You're welcome

I just hope you have a better time of it than I did (my first night in intensive care was a nightmare as they didn't plug my bed in so my mattress deflated and I was laying on the metal supports - plus my epidural wasn't working on one half of my body and the stupid nurse said I couldn't have any more painkiller when infact I should have been having additional....*sigh*....lets hope your hospital gets it right!)!

When exactly is your op booked for?

Juliana

Oh my heart bleeds for what you've been through Juliana!! It's so wrong that you should have been subjected to that lack of treatment !!!

did you go to a Private hospital or public ? Are you in the UK ? did you have it in a big hospital or small ?

I was living in London for 3 & 1/2 years - had to return here to Australia in Jan 09 due to credit crunch ...

I'm booked for my op for 8th Feb. I'll be keen to get it over with ... I've been waiting since before xmas - but they said all the Docs who could do the op were on holidays so had to wait... only 5 surgeons in Sydney who are capable of this surgery....

My surgeon has done 28 of them so far - I'll be 29 ! He's worked in xx Hospital for 2 years and in the Mayo clinic in the States for a few years also - so I'm hoping he'll be good .... he does liver transplants - so I guess he's used to mico surgery....

Did you have to have chemo after Whipples ?

you are welcome to e my private mail if you want ?

Mel xxx

Mel's email address has been removed for privacy and data protection reasons. If two contributors to the board wish to be put in direct contact with each other please both send an email to "discussionboard@pancreaticcancer.org.uk" with authority to disclose your email address to one or more specific persons.

Thank you