My husband's recent Whipples op

[HMac]

I am new to this site but have already read many of the postings and have been greatly encouraged by your support to one another. My husband had a Whipples procedure on 10th February 2011. He is now home but has about a 5 inch section of his operation scar open and covered by a stoma bag into which large amounts of lymphatic fluid drain each day. I found this quite frightening at first as it can be more than 2 lts/day but the surgeon does not appear concerned so long as my husband keeps drinking as much as possible - not easy following such major surgery. Has anyone else had experience of this following a Whipples ?

Any advice at this stage would be comforting.

[PCUK Nurse Jeni]

Hi,

This topic has been moved to "Surgical patients" forum.

Moderator.

[AnneD]

Hello,

I had a Whipple in December and my wound still has about three weeks of healing to do according to the district nurse.

The wound was stapled in hospital and the middle third healed quickly. The two outer thirds became infected, however,

and I was amazed at how much liquid came out of the wounds.

I can remember lying in the treatment room at the hospital with liquid pouring out and splashing on to the floor.

Anyway, that was about ten weeks ago and with at first daily packing of the wound at home, and now twice-weekly it has nearly healed.

I understand how frightening this can be, but it will heal although you need to be very patient.

Best wishes,

Anne.

[HMac]

Dear Anne,

I'm so glad that you are finally 'on the mend' - that must have seemed an awfully long time. Thank goodness it's finally healing - that must be such a huge relief and also make daily life far more comfortable. Thank you for replying as I was beginning to think that my husband was the only one to go through this leakage following a Whipples which was making me feel very worried.

He's still losing over a litre a day - were you losing that much ? Did it just get less and less gradually until it stopped leaking ? What sort of collection bag did your District Nurses use to collect the leakage ? I'm sorry to bombard you with questions but our DNs are doing the very best they can, and are still trying to come up with a satisfactory method which won't result in seepage of the fluid around the edges of the collection bag. This is so unpleasant for my husband as he gets soaked and I have to keep changing him. This exhausts him and I feel helpless.

Most of his wound has healed nicely and the staples have been removed - it's just the last approx 10 cms which is basically a gaping wound. The DNs 'close' this gap daily with Micropore tape, or the like, allowing small gaps in between to allow drainage. It really is quite an alarming sight adn, at this moment, almost impossible to imagine it ever healing.

Anne, I hope you continue to improve and to feel better. My heart goes out to every single patient on this website - you are all very, very brave. This website must be an enormous source of comfort to you , and all of the carers, friends and families - I know it has been to me. Mu husband doesn't like to discuss his illness/op very much and is very down at the mo. I think he finds the slow rate of recovery extremely frustrating as he was so active before despite being in his early 70s.

Helen

[AnneD]

Dear Helen,

My district nurses didn't use a collection bag for the fluid.

There was a suggestion that they use a vacuum pump but in the end they decided to just pack it.

They packed it every day with loads of padding on top. It still used to leak and I would put incontinence pads round it as well.

Luckily I had treated myself to loads of pyjamas for my hospital admissions because there was a lot of washing to be done!

Anyway, the packing has gradually been reduced, and now the nurses are using waterproof dressings so I can have a shower.

We're nearly there but it's three months now since I had the surgery and it will have taken four months to heal.

It's quite frightening when you see how deep these wounds are, isn't it?

I couldn't really believe it but it's all worth it - we're still here!!

Anne

[richiebirch]

Big Hello to you both !!

I had my operation in September 2009 and finally i am reading about others with open wounds ! I thought i was the only one. Like yourselves my wound took 3-4 months to heal with regular visits and packing from the DN's.I only had minimal leakage from the actual opening,but left Hospital with 2 drainage bags that had been put in on each side of the stomach 6-8 inches below the wound.These filled up every day for weeks-did you have these?.Anyway im sure its very uncomfortable on top of the trauma associated with this operation,but if the surgeon is happy,please try not to worry, it will heal!!!

Everybody is different with there recovery expieriences and living in a village in North Wales, my Doctor and DN's were marvellous, but admitted that there dealings with post op whipples/PC was very limited and I needed reassurance from the Hospital specialists over wound care, diet etc. I lost 3-4 stone and found eating very difficult for a couple of months.Again i had pressure from DN's and family to eat,i think they didnt understand that such invasive surgery causes the digestive system to go into a sort of closedown and each individual is different with the time it takes to start eating again. Again the Hospital didnt seem to concerned, in fact the Consultant joked they had assisted me in losing the weight i had tried to lose for years!!. Forgive me for making light of what was a traumatic time both mentally and physically,recovery was a slow process and on days it can be emotionally draining for all. The important thing is that we had the chance of surgery,and although im a postitive person its sometimes a difficult journey for me and loved ones even 18 months after the operation. I know things will improve for you all and if there is anything you need to ask me about anything please be in touch. Kind regards Richie

[HMac]

Dear Anne,

What a fantastic idea ! Incontinence pads - why didn't I think of that.. my husband has been using hand towels to mop it all up and I couldn't agree more about heaps of washing.

That's great that you can have a shower again - must really feel a bit more like normality. I give my husband bed baths but I'd love to wash his hair for him out of the question at the moment.

He 's been very low today and also constipated (3rd day). Our GP has rescribed Movicol and I gave him 1 sachet but no luck yet. I think he's feeling very uncomfortable due to the constipation and fed up with the constant leakage.

Yes, the wounds are pretty frightening and deep , particularly when the intestine pokes through - the nurses have now started to 'close up' the wound slightly with tape in order to keep the intestine from poking through and drying up ... my poor old hubbie. Neither of us had any idea how tough this would all be, and I'd read so much info on the internet with the idea of preparing myself for it so that I could be strong for him.

Anne, you've had a really traumatic time and I really hope that the worst is behind you. Thanks once again for your help - I really do appreciate it.

Take care and best wishes

Helen

[HMac]

Dear Richie,

A big hello to you too ! Thank you for sharing your experience - my husband had his op nearly 3 weeks ago and has been home for 1 week. I couldn't find any reference to open wounds either and feared that my hubbie was the only one so I was so relieved when Anne posted her reply, and now you too.

I'm so sorry you had to have this op but , as you say, at least you had the chance to have the op. My husband had a drainage tube below his incision for the first few days but this was then removed. After a day or so, the wound started to seep on the right side and the nurses eventually fitted a small drainage bag over it. The surgeon instructed the nurses to remove the staples in this area, I think to improve drainage as there was so much fluid. This has resulted in a gaping 10cms part of the wound. The district nurses come daily to 'close up' this section with micropore tape or the like, leaving gaps for drainage. There's still about 1 lite draining off each day and mu husband is very fed up with this. Just as you experienced, the district nurses (and our GP) were not expecting to see such a wound and have very little, if any, experience of dealing with Whipple's patients. They do their very best to make him comfortable and I'm so grateful for their visits.

My husband has never had a huge appetite anyway, so now it is even worse. He manages small amounts and has protein drink supplements. It's a balancing act of trying to keep his fluid levels topped up and trying to get him to eat a little in order to get some strength back. He just doesn't seem to fancy food at all. At the moment, I'm just going with the flow as far as the food is concerned and not pushing him to eat. I keep offering this and that, but I don't try to persuade him. Maybe I should do that eventually but not just yet. What do you reckon ?

Please don't apologise for trying to make light of anything - you've been through a very stressful and traumatic time, and I'm sure that having a sense of humour can take away some of the strain from time to time. My husband and I always used to laugh and joke, and it feels like we haven't for ages. I know it'll all get better and that I have to be strong for him. As you say it's a difficult journey for the patient but also for their loved ones.

You've done amazingly well Richie to come through this horrific ordeal and I wish you well. Thank you once again for posting your experiences - I'm sure you can appreciate what a relief it is to speak to others who have experienced the leakage problems that my hubbie is having.

Take care of yourself and best wishes

Helen

[AnneD]

Hello Helen and Richie,

Yes, it is comforting to read other people's experiences.

Everyone does want you to eat, don't they?

My diet for a while after leaving hospital was Ready Brek, Cuppa Soup and mashed potato - not all at the same time.

After the surgery I couldn't drink tea or coffee and I love a cup of tea.

I realised I fancied salty things and used to drink cups of Oxo - why did my body tell me I wanted this, I've never drunk it before?

Now I can eat and drink pretty much anything, in small quantities and with added Creon.

Helen, I'm sure your husband's appetite will pick up soon.

Best wishes,

Anne

( Richie - both my drainage bags were removed within a few days of surgery. The drains have left red marks.

[PCUK Nurse Jeni]

Hi Helen,

I work for PCUK, and haven't replied as I have been asking other health professionals about this problem.

If you could email me at support@pancreaticcancer.org.uk, then there may be some suggestions I can offer, but would need some more details from yourself.

Many thanks,

Jeni.

[richiebirch]

Dear Helen and Anne-Lovely to here from you both.It took me a couple of months to start taking sufficient foods,Oh how i remember those little bottles of "ensure" and my partner trying to sneek an egg onto my plate !! Another little peice of advice i thought may be usefull (and which you probably already know) is be very carefull not to cause any excessive strain around the area as i unfortunately have an inscision hernia.I cant be sure how it happened,and the medical team have expierienced this many times before, but im sure on reflection i did some unessesary lifting which couldnt have helped with the healing. Best wishes to you all and if you have the time ,keep me posted.It would be lovely to here from you.

Regards

Richie

[HMac]

Dear Annr, Richie and All,

Just to give you an update, and anyone else who may be experiencing the same problems post surgery, the drainage of lymphatic did eventually

dry up after about 2 weeks. I would not have believed this at one time as it was as much as 2 litres/day .. however, the wound is now being

packed and re-dressed daily by the distruct nurses. The surgeon reckons that it should heal within 2 weeks. My husband is so much more

comfortable without the drainage bag - it was pretty unnerving seeing his intestine poking though the gaping wound whilst it was still draining

but at least we can now joke about it by saying that not many wives have seen their husband's intestine !

Best wishes to you all.

Hmac

[AnneD]

Hello Helen,

Glad to hear that the wound has stopped leaking.

Mine is being dressed just once a week now instead of every day, but they still think it will be yet another three weeks.

They've been saying this for - three weeks!

My surgery was Dec.3rd.

Isn't it amazing how we can laugh about these things?

All the best,

Anne

[HMac]

Dear Anne,

I'm really sorry that you're having healing poblems - it must be so disappointing to get to the end

of the 3 week stretch, only to be told that it'll be yet another 3 weeks. I couldn't agree more about

having a sense of humour and being able to ease the tension by having a laugh. Anne, you've had

the strength and determination to survive such a huge operation , and the awful post surgery

complication of drainage so keep smiling and those 3 weeks will be over before you know it.

Thinking of you an wishing you well.

Helen

PS. Whilst they were needed, the incontinence pads worked a treat - although my husband did think

they were my sanitary towels at first !!!

[AnneD]

No way!!

The ones I used were about two foot square!!

Another little chuckle and laughter is good for the healing process according to the paper today,

by generally increasing blood supply.

[HMac]

That's it then - it's official. Laugh your socks off .....but don't split your

stitches !!!!

Best wishes

Helen