Post Whipples complications...

[Tolliedee]

Hi, this is my first post despite that I have been reading all your information for months!

My husband has had an elective Whipples for a pre malignant lesion on his pancreas. This was found as a result of a double hernia (his first stay in hospital ever at 57!) followed two weeks later by cholecystitis (which was removed) followed two weeks later by a massive jaundice and pancreatitis after which he was scanned +++ and on one of these scans they saw the lesion. This was monitored until they finally decided it was a risk to leave it and suggested the Whipples to give us the chance of NOT having that dreadfull diagnosis in the future! Genius! (I am eternal grateful that we had this offer)

He had the op on the 6th Sept and two weeks later was discharged...unfortunately two days later he had a massive infection and was re admitted. Leaking stitches on the illeo- hepatic join had caused an abscess. They inserted a CT guided deep drain and drained off a lot of pus so a great sucess. He improved almost immediately. They left the drain for three more weeks and it has now stopped draining so was removed on Monday.

He now has another 'sub clinical cholangitis' which has made feel awful and have hot and cold sweats. This together with extreme weight loss and lack of appetite.

The consultant and the team have been amazing and remained positive as overall he has done well. They continue to monitor his weight etc and have offered a lot of support and advice. It's just these few complications that have left him feeling really lethargic and ill. I spoke to the nurse on this site today (who was very very helpful and supportive) she suggested some other supplements we could try and guided us re the new diabetes too.

I feel so bad for everyone on here who has been through this and still has chemo to contend with and a lot more...I almost didn't post as I think I should count my blessings that at least he doesn't have that (thanks to their vigilance and forward thinking!) but between the weight loss, the Creon, the change of appetite from before and the shadow of the man he was I find it frightening and I'm sure he does too.x

[nikkis]

Hi there and welcome!

There are lots of people who read this forum, but don't necessarily post, so people will find reading about your experiences really helpful.

I am sure you have been told that a whipples is the most major surgery that you can have. This was really brought home to us when my husband was in ITU and his nurse told us that patients who have had heart bypasses are up and about the next day, weeks later my husband was still finding it difficult to get about!

Really pleased to hear they operated on your husband at an early stage, it was lucky that they saw the lesion, although I am sure you still don't feel lucky when you have had a rough time. This is all so life changing and you have every right to feel frightened.

Hope things continue to improve for you,

Nikki

[Tolliedee]

Thank you Nikki

I know we were told it is the most major surgical operation but I don't think we really grasped it!

I look forward to reporting when we manage to stabilise his weight at least.

Gave him Fortisip this pm and his blood sugar soared .... Will be on to diabetic nurse tomorrow for what to do...increase insulin? Oh this is what we are struggling with....what to do for the best.

Cx

[nikkis]

Hi C,

We have seen various diabetic nurses and consultants, who have given us different advice, but the most recent one, who I trust has said that it is important for Paul to eat whatever he fancies, and the more calories the better. So we work his insulin according to what he eats, and fortisips are pretty high in carbs so he will probably need extra. Definitely worth talking to the diabetic nurse again. Ours also said that if he does have some high bloods sugars it is not such a worry as for someone who has diabetes as a result of disease, as they will have been running high for a long time before diagnosis, whereas Paul became diabetic instantly as a result of surgery. Your don't want to stay high for long, but that did put our mind at rest in the short term, when we had so much else to deal with.

Look forward to hearing new of weight stabilization!

Nikki

[InfoForMum]

Hi there, I can't offer the sage advice that Nikki can, but wanted to let you know not to feel concerned about posting. I've posted about all kinds of concerns from BP issues to district nursing issues to an unexplained rash all while worrying about doing that when folk are going through fundamental crises often with untreatable PC. I needn't have worried. Everyone has been so kind. All on here will help if they can and like to hear about good proactive care that might stop others suffering what many carers and patients here are suffering.

One day, probably 2nd quarter of next year, my Mum may fight her PC off well enough with chemo and chemo/radiotherapy to get a whipple. If that time comes your account and the account of others going through it will be really valuable.

In the meantime, I hope the good advice about Creon usage and eating whatever, goes down, stays down and tastes good sees your man regain some of his strength!

Take care

Sarah

XX

[Tolliedee]

Thanks for that Sarah...

Well it's been a few days now...I took Jenni's advice and contacted the GP with the name of some products for gaining weight.

I also had a Fortisip in the cupboard from when he was in Hosp. I gave it to him and (just as Jenni warned,) his blood sugar shot up to 16! Soo I explored on line and found some Diasip (for diabetics) but had to order them from Belgium and so far they haven't arrived yet. In the meantime the GP prescribed Calogen Extra Shots which we are using to compliment the meals he is having, making them up to six small meals. We have upped the Creon again and have cleared increasing his insulin to accommodate any increase in blood sugar with the surgeon and GP...it's only been a couple of days in this new regime but he hasn't lost any more weight.

I hope that stabilising him for a week or so and getting some nutrients into him will give him the energy to feel more positive and start looking forward.

I can't thank Jenni enough for her phone call to me last week, I was so exhausted trying to do the right thing and we just couldn't stop the weight falling off... Jenni took time to explore with me what we were doing, she reassured me for what we had done and made a lot of helpfull suggestions. You were just what I needed! Thank you!

I look forward to further positive updates!

Colette x

[Tolliedee]

Now that I've re read your post Nikki I realise that that is roughly what we have done....just as you described, thank you!

Colette x