Total Pancreatectomy

Chat about anything you like... Fed up with the state of the world today? Tell us!
Post Reply
DavidC
Posts: 12
Joined: Thu Dec 10, 2020 12:04 pm

Total Pancreatectomy

Post by DavidC » Wed Jul 14, 2021 11:46 am

Hi After disillusionment with my specialist Pancreatic team I have asked my gp to refer me to an alternative specialist in Blackburn. This sudden change of direction has alerted the original consultant to get in touch and offer a total Pancreatectomy! This extreme option has not been explained and appears to be unsupported by medical findings or consultation with the gastroenterologist that looked after me as an inpatient on four occasions since October 2020. (Last stay was May and lasted one month).
Naturally I now have reservations that the original consultant has my best interest at heart and has made a decision as a knee jerk reaction to Blackburn contacting them for my notes. It seems like they are scared of losing a patient or fearful of a complaint being lodged by me. I have expressed my displeasure to them.
Has anyone had a total Pancreatectomy? Could you explain the experience and offer advice on what I could expect if I proceeded. Is it a long recovery time?
Thank you.

User avatar
maz
Posts: 7770
Joined: Fri Jan 01, 2010 11:29 am
Location: Harrogate, UK.

Re: Total Pancreatectomy

Post by maz » Thu Jul 15, 2021 9:34 am

We have a few members who have had a total pancreatectomy, and they might be along soon to offer help and advice. It is usually a last resort and maybe not something to be undertaken lightly, so getting more in depth information is a good idea before going forwards.

I can't comment on the reasons your first specialist suddenly decided to offer you this once you had moved to another specialist, it seems odd for sure.
Marilyn

paul...m
Posts: 318
Joined: Thu Jan 30, 2020 6:53 am

Re: Total Pancreatectomy

Post by paul...m » Thu Jul 15, 2021 7:12 pm

When I had my pancreatitis attack asked about having it removed . My consultant said its last resort as it means supplements for life to help with digestion and instantly diabetic so not a decision to be taken lightly but as Maz said there will be someone along who has had it done

DavidC
Posts: 12
Joined: Thu Dec 10, 2020 12:04 pm

Re: Total Pancreatectomy

Post by DavidC » Fri Jul 16, 2021 5:31 pm

Thank you. I'd certainly be interested in people's opinions. I've requested full information from the consultant on the offered surgery but after speaking to them on Wednesday again they have back tracked about it being a done deal.

User avatar
Janey Dal
Posts: 10142
Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Total Pancreatectomy

Post by Janey Dal » Sat Jul 17, 2021 12:11 pm

Hi David

I work in a GP practice and I cannot understand your original consultant's change of heart. It is certainly odd. I cannot imagine it is for either of the potential reasons you mention. Hospitals (unless private) don't care about 'losing' a patient. And if you were suggesting a complaint I cannot think for a moment that that would lead to the complete turn around. It would make me think twice personally about staying with him. I would also, if I were you, ask the question as to why he changed his mind.

You don't mention your history (unless it is somewhere else on the site) and certainly a TP is a VERY big step. You will become diabetic and that carries its own risks. Consultants are usually reluctant to even do a partial pancreatectomy because it a massive operation and will only be done if your quality of life is severely affected and they believe the operation may help with that.

My suggestion to you therefore is do some further research (try to use sites like the NHS because there is a lot of misinformation out there) and more importantly, find a specialist you trust. This is vital! If you are considering surgery of this kind of magnitude you need to understand exactly why they think this is the way forward and what the prognosis is.

Julie will probably be along at some point. She has had a TP so can advise of her experience.

Meanwhile if you want to you can share your medical history with us which may help us to understand why the specialist has offered the TP.

Hugs

Jane xx

DavidC
Posts: 12
Joined: Thu Dec 10, 2020 12:04 pm

Re: Total Pancreatectomy

Post by DavidC » Sun Jul 18, 2021 2:27 pm

Hi I've been a chronic pancreatitis sufferer for 8 years and type 2 diabetic, initial suffering abdominal pain. Over the last three years I've been an inpatient four times a year, the last being a month stay while tests were being assessed.
I have lost over 5 stone in the last 18 months and have moved onto fentanyl patches since May.
Despite the extensive tests (blood, MRI, ct scans , abdominal xrays, pet scan, endoscopy), no cause of the pancreatitis has been found. This has meant I've not received a treatment or health plan to avoid the frequent flare ups. The specialist consultant has seen me face to face once in 2 years and each telephone consultation leaves me feeling they have no idea on how to treat me. I end up repeating my health history every time and at the end of the call just feel deflated. I don't feel I've received adequate support from the consultant and have loss faith in him. I will explore the NHS website on TP and also discuss this with my gp. I have an alternative referral at Blackburn September which I hope will be fruitful.
I would love to hear from TP patients to get more insight.
Thank you.

refandy
Posts: 873
Joined: Thu Aug 13, 2009 8:40 pm
Location: Kent

Re: Total Pancreatectomy

Post by refandy » Wed Jul 21, 2021 8:03 pm

Hi

I had a total pancreatectomy in Sep 2015 (or to give mine its full title a stomach, duodenum and gallbladder preserving total pancreatectomy and splenectomy - in other words my surgeon did not have to do any re-plumbing).

I'm not sure what you want to know - is it the surgery itself or life afterwards?

A few thoughts (contradicting as nothing is black and white)
1 A TP s not an easy option. The surgery is risky. It takes a long time to really recover. I say really recover as it depends upon your definition of 'recover'. I've had several points when I felt i'd recovered only to have the same feeling a while later.
2 There will be a complication of some sort following the surgery - the question is what kind? The recovery is not smooth and there wil be setbacks
3 The diabetes is a pain in the a*&^. If you are seriously considering a TP then do lots of reading pn managing diabetes - I recommend Think Like a Pancreas by Gary Scheiner. Also the DiabetesUK website (the blue one not the red one). You have a big advantage over other diabetics in that you know it is coming so you can get your head round it and prepare.
4 It is possible to have a life after a TP. since mine I've changed employer, been promoted several times, moved house etc etc.

A number of NHS trusts publish guides to TP surgery and they are worth a read - https://www.google.com/search?client=fi ... maiton+nhs

There's so much more I could tell you but I would rather you ask the questions you want answers to.

I haven't been on here for a while due to work, my sons wedding, a slipped disc and numerous other things but I'll make an effort to do so and answer your questions.

Take care
Andy
Last edited by refandy on Sat Jul 24, 2021 5:53 pm, edited 1 time in total.

DavidC
Posts: 12
Joined: Thu Dec 10, 2020 12:04 pm

Re: Total Pancreatectomy

Post by DavidC » Wed Jul 21, 2021 9:28 pm

Hi Andy thank you so much for sharing your experience. I suspect I need to follow your advice and really research this. The option for surgery has really come out if the blue so it's early days on me making a decision but I'm pleased to say you're making me understand its not a risk free option and I can't just expect a quick fix with no side effects post surgery. That's more insight than the consultant has offered. I will check out the reading recommendations and post any specific questions I might have soon. Thanks again for your input.
David

User avatar
Janey Dal
Posts: 10142
Joined: Mon Jul 26, 2010 10:34 am
Location: Stockton on Tees, NE UK.

Re: Total Pancreatectomy

Post by Janey Dal » Sat Jul 24, 2021 2:31 pm

Hi Andy!

Good to hear you are still on the forum, we hadn't heard from you for a while. Obviously you have been busy.

I am sure your advice to David will be absolutely brilliant in terms of helping him make a decision.

I am sure you enjoyed your son's wedding and not fair on the slipped disc!

Hugs

Jane xx

refandy
Posts: 873
Joined: Thu Aug 13, 2009 8:40 pm
Location: Kent

Re: Total Pancreatectomy

Post by refandy » Sat Jul 24, 2021 5:52 pm

Hi Jane

I'm still here! I have logged on everyone now and again just to catch up with what people are up to and if there are any questions I can bring my experience to . Working from home has meant I'm on a laptop all day so by the time I finish I just can't face beig on it, even for social stuff. Son #1's wedding was a little different becaue of Covid but the restricted numbers meant it had a very 'cosy' feel. Son #3 has now announced his engagement

@David. Just realised I didn't differentiate between the physical and mental recovery in my response. The two are very different and go at their own speed. My appeak to you would be not to take this decision lightly. Yes it is possible to have a positive, fulfilling life after a TP and I haven't let it stop me doing anything I want to do. But there are ongoing day to day impacts - making sure I have my medication (including jelly babies) ; during covid I was on the extremely vulnerable list due to having no spleen; any medical treatment in a hospital requires lots of planning; tiredness is an ongoing issue etc etc.

This is a big decision. Please ask questions. There are a few of us on here who've had a TP so you should be able to get a good view of what you are letting yourself in for.

Take care
Andy

DavidC
Posts: 12
Joined: Thu Dec 10, 2020 12:04 pm

Re: Total Pancreatectomy

Post by DavidC » Sat Jul 24, 2021 7:02 pm

Thank you Andy I will certainly take your advice on board. I have already started to research, i'll try to build up a fuller picture prior to discussing my options with the consultant.
David

Post Reply

Who is online

Users browsing this forum: No registered users and 13 guests