4 weeks post whipples - any advice appreciated!!

[HsMum]

Hi,

My Mum who is 52 had the whipples operation on 21st December 2009. She spent 9 days in HDU following the surgery during which time she was unable to eat or take fluids as anything she did consume seemed to make her sick. Thankfully it turned out that the sickness was being caused due to the feeding tube she had in place had risen up and was irritating her stomach.

Once on the ward she began to eat small amounts although she felt full very quickly. After a total of 16 nights in hospital she was allowed home although she is now an insulin dependant diabetic. Other than insulin she is on no other medication but is finding that she is suffering from excriciating pain and discomfort which she can only say feels like wind. She has tried reducing her meals and various eating pattern to no avail. The district nurse got some buscopan tablet for her in a hope that they would provide some relief but unfortunately these have not worked.

I was wondering if anyone who's experienced a similar problem could shed any light as since being discharged from hospital she has had no medical contact other than 1 visit from the district nurse, so we feel a little bit in the dark.

thanks.

[Juliana]

Hi H's Mum,

Welcome to the forum.

I had a whipples op nearly two years ago and this is what I suggest:

Ok firstly it is great she is able to eat - she really should be on small meals, probably every 2-3hrs. Like child portions. Also make sure it's home made, simple stuff like steamed veg and white fish (poached sole is lovely!). Small amounts of bread as this can bloat - too much wholemeal will do the same, try to keep intake low - and maybe every other day. Plus try to keep fat intake to minimum, and red meat as these are difficult to digest. Natural fats should be ok, a little olive oil on a salad etc, fat from dairy (again not too much too quickly).

I was lucky, I went back to normal eating more or less soon after coming home from hospital....infact, the first night home - I ordered chicken tikka masala

Anyway.....the wind issue will be 1 or both of 2 things.

1.When your intestines are messed about with - and trust me, during the op they would have been aggrivated no end, they take a while to settle down and the wind thing is basically them readjusting to slightly new position and slowly trying to settle down into how things used to be. For this, I suggest some peppermint tea - it's great for soothing digestion/wind. I also suggest your Mum starts on some acidophilus (good bacteria) either capsule form from a health shop, or yakult/yoghurt form, whatever she can tolerate. Her system has endured a lot of medication and needs rebuilding.

2. The Dr's have prescribed insulin as her pancreas no longer creates enough for her system to work properly. What they have failed to do by the looks of things is consider the other very important job the pancreas has, which is the production of DIGESTIVE ENZYMES! Without these enzymes, your Mum will not digest food properly, will lose weight, will have terrible colic pain and the visits to the loo will not be pleasant at all. She can check this herself the next time she does a no:2 - if it's pale, pasty, stinks and on the water you can see a film that looks a bit like oil then it's definately lack of enzymes (sorry for the details!). This can be remedied straight away - pancreatic enzymes called CREON, ask your GP and personally I would go straight onto the 25,000 strength. Start with taking 1 with each meal and if she still gets colic, double the dose.....you cannot overdose on these things - what is not used just gets eliminated.

I will add that when I left hospital I left with c.difficile - which can cause terrible abdominal pain and the runs....she can also be tested for this quite easily, just needs to provide a stool sample (personally, I think it's better to be safe than sorry).

Remember it will take a while for things to settle down, but if it's the lack of enzymes causing it she really really really needs to get on them asap!

I can appreciate how you feel not having much contact/advice - post this op, most of what I did I learned off the internet - even the dietician at the hospital had no clue as to what to do with the enzymes.

Hope this helps, feel free to ask any other questions - I will try to help as best as I can.

Kind regards,

Juliana

[HsMum]

Hi Juliana,

Thankyou soooo much for the reply. I have passed it on to my mum and she is going to contact her GP today. It also provided her with some hope of things getting better and made her realise that there are others who have been in the same boat (this is the first contact she's had with someone who's had the whipple!).

Thanks again.x.

[Juliana]

Hi H's Mum,

You are very welcome.

I hope things start to improve for your Mum and if she has any other questions please do not hesitate to ask - also, if you think she would benefit to talking to me on the phone let me know and I will get the adminstrator to supply you with my contact details.

Kind regards,

Juliana

[Nardobd]

Hi H's Mum and welcome to the discussion board "family". We all have our own experiences and there's usually someone who can offer practical advice as Juliana has done (and very well, I might add!).

There's just one other thing that occurred to me - your Mum should have met a nurse-specialist either before her op or whilst she was in hospital and you can always ask them for help. They usually give out cards with their numbers on and although most of them are very busy they always have time to talk and try to resolve problems. My husband's nurse specialist even faxed over instructions to our GP as to exactly what meds to put him on! If they can't resolve a problem themselves they will either ask the consultant or arrange an appointment for your Mum to discuss any issues.

If your Mum doesn't have the details of the nurse specialist, phone the hospital anyway and ask to speak to the consultant's secretary - she should be able to give you details of who can offer support. Many hospitals have a macmillan branch attached or nearby and they will also be able to give you details of who you or your Mum can contact for more support. That's not to say that you can't ask here too - just that sometimes it helps to have a "medical" opinion as well as the great practical advice that many of our contributors will give.

Hope that your Mum's current discomfort is short lived and her health continues to improve.

Nicki

[HsMum]

Thanks again ladies,

We spoke to GP yesterday who said he was unable to prescribe the CREON in the first instance as this had to be done by the hospital in order for him to continue prescribing it. As Nicki suggested we will contact the specialist nurse (who we had completely forgotten )who she was assigned before the op. With a bit of luck things will begin to improve soon.

Zowie.x.

[Nardobd]

Hi Zowie and you're very welcome. We're always very keen to hear from those affected by PC and do let us know how your Mum gets on.

Nicki

[Claire M]

Hope you managed to get the creon for your Mum. I think these are essential after whipple surgery. My Mum had her whipples surgery four years ago and she is still doing well although she has had a recurrence and more chemo. She also had trouble eating at first but now she eats everything! She does feel full quickly so only has smallish portions. Fried food can cause her problems so she does avoid that but apart from thsi she is doing fine. Wind is a problem as well! Mum has managed to put on a bit of weight since her op but is still quite thin. Hope your Mum continues to dow ell. Take things slowly. It took my Mum quite a few weeks to get back to her usual active self and then she started chemo! Is your Mum having follow up chemo? Good luck.

[Guest]

hi there,

my dad had the Whipples op on Dec 24th - I would agree with Nicki about utlising the specialist nurses. Once he was discharged he had an infection around his stomach causing him to be sick - we were unsure if this was 'normal' but as it got worse it clearly wasn't. The GP referred him straight back to the hospital where he had the op. He is now much stronger and 3 weeks later is back at home and - touch wood - seems to be ok with eating / digesting. It was recommended last week that he start chemo in a few weeks. I know that my mum felt particularly 'at sea' with eating and knowing what to do. The district nurses were very generic and although helpful didn't have any expiernece of this type of op. The most helpful resources I've found were the nurse specialists at the hospital who willalways get back to you and have access to more specialist services andthis website!!

Getting full quickly seems to be a problem whilst my dad has also needed to put on weight as he lost even more post op due to the infection. I have been focusing on (amongst other things ) making soups that have the most amount of calories in the smallest portions.

hope things progress really well for your mum - my advice is if you feel unsure about anything, contact someone and ask.

Cx

[worrier]

Welcome to the forum,

I had pancreatic surgery August 2008 but was not put onto Creon until almost 18 months after when I complained to my GP about the terrible discomfort I was suffering. He sent me to E A U and the doctor there who happened to be one of those who assisted at my op put me on Creon but very low dosage (10000) On the subsequent vist to the consultant it was increased to 25000. I still suffer from some discomfort particularly in the evenings. I will be raising this with the consultant in the very near future. Unfortunatley my wife was diagnosed with breast cancer at the end of last year but fortunately it was in the very early stages and she will start Radio Therapy next week for 15 days. Once we get this behind us I will contact my consultant to see what can be done. With my wife's condition there was a lot of very helpful information that came in the way of a small booklett and I think the same could be done with people who have had a whipples. The information about Creon is very sparse and I cannot understand why I was not told that I would quite possibly have to take it. It really is unsatisfactory in my opnion. In an effort to overcome the pain I was in my GP put me on Fibrogel, a peppermint capsule, and also suggeted pepermint tea none of which had any real benefits. The current thinking concerning recovery is that it will take at least two years to overcome a whipples and I can quite beleive it if my own experiences is anything to go by.

Anyway good luck hope your Mum starts to feel a little better soon.

Peter

[HsMum]

Hi,

Just thought i'd post a quick update as i've be unable to get on here for a while. My mum is now almost 14 weeks post whipples. I think she has made an amazing recovery and only has a few slight problems she is suffering post op.

When she went for her 6 week post op check at the hospital she was slightly concerned that she had not had her histology results back. To our surprise the surgeon informed us that this was infact because they didnt have them themselves. When they looked at what they took away in x they had never seen a case of pancreatic cancer like it ans so sent the stuff off to x - needless to say they were stumped to so at that time it had gone from there to x . they had a feeling it was a hormonal cancer that effects 2 or 3 in a million but could not be sure. All they knew for sure was that the tumour was only 1 cm long (after 3 years) and that there had been no signs at all of it having spread.

2 weeks after this we went to x (edited-moderator) to see what course of treatment my mum would have to have. We were speechless when the consultant there said the results had come back and the tumour my mum had was actually rarer than 2 or 3 in a million!!!! He said it was the best news she was ever going to get in her life because it was not agressive and the operation had cleared her of any cancer!! All her scan, bloods etc have now returned as normal and she does not need any chemo etc - she will just be scanned every few months in the future. The consultant actually said there is no reason why she shouldnt live a full, long and happy life .

As u can imagine this is the best news we could ever have hoped for!!

Zowie.

P.S. My mum is still experiencing a real soreness underneath the area of her scar that gets gradually worse as the day goes on. Has anyone experienced the same or know what might be causing it? We dont know if this is normal for healing????

[Ellie]

Hi Zowie

What a story!! That is wonderful news for you and your Mum! The relief for you all must be tremendous.

I am so very pleased to read of a happy ending for once on here.

Hopefully, you will find something which will help with the scar soreness so that can be the icing on the cake.

Best wishes for the future

Ellie

x

[Nardobd]

Zowie that's just fantastic news! I'm so pleased for you.

The Whipples is a huge operation and it's not unusual for people to take a year or even longer to fully recover. The pancreas is deep within the body and the surgeons would have had to pass through a lot of layers of tissue to get to the tumour, all of those layers needing to be sutured back together afterwards. If you take that into consideration, it's not surprising that there is some soreness.

However, the best advice I've read is that If your mum is getting pain or discomfort that is worse than when she was discharged from hospital she should seek advice from a doctor or qualified nurse familiar with her treatment since there are some complications which might cause pain such as a hernia or leakage from one of the joins that were made during the operation.

Hope that helps

Take care

Nicki x