Excruciating stomach pains post-Whipple's

[VickiR]

My father, who turned 67 earlier this month, was diagnosed with pancreatic cancer in December '07 and was admitted for his Whipple's procedure just a few days later on December 16th. The operation took longer than usual but was pronounced "a success" by his surgeon. He did, however, suffer a large number of initial setbacks which meant that his discharge from hospital did not take place until January 16th, following a stay of exactly a month. These setbacks included prolonged and severe delirium (lasting nearly 2 weeks and which was attributed at the time to the morphine he was being administered), pneumonia, an infection in his feeding line and a bang on the head when he fell from bed during his state of delirium.

My dad has always been fit, active and alert and this has been a very distressing time for his family. I am unable to recall even a day's illness prior to his being diagnosed with PC. He has spent his life as a self-employed builder and accomplished sportsman. Apparently, his fitness was a deciding factor in whether to go ahead with the operation.

During his stay in hospital, my dad did not eat well and lost a lot of weight, approximately 2 stones. As he was not overweight in the first place, this is a huge amount. There was some concern over his lack of eating at hospital but my impression was that they felt he would be better off once home.

Once at home, my dad did eat, but little and often as described thoughout the posts on this site. On good days he was able to keep a little food down, but on bad days, nothing would stay down at all. He was also having difficulty with his bowel movements, which was something that had plagued him even prior to the operation. He could go several weeks without visiting the toilet. That has eased somewhat now but it can still take several days (following medical intervention). After he had been at home for a couple of weeks, my dad started to develop excruciating pains in his stomach, chiefly when he ate or drank anything. These were often, but not always, accompanied by vomiting. The pain became so unbearable that my mother called out a doctor and he was re-admitted to hospital for another week. He was found to be suffering from "dehydration and a sticky bowel". I have been unable to find anything concrete about 'sticky bowel' in an internet search and feel that this explanation was insufficient. I should say that this second stay in hospital was local rather than at the specialized cancer centre. He also had an x-ray to his stomach which picked up nothing unusual.

My dad has now been out of hospital for another week and the pains are back to what they were. He says that he is sick of being 'nice' and just wants the medical professionals to listen to him and ease his pain. He is in a vicious circle of excessive weight loss caused by lack of nutrition but is extremely anxious about eating or drinking as it might lead to this unbearable pain.

My dad is determined to beat this insidious and devastating disease and has approached his fight with characteristic good humour.

For information, the drugs he is taking are:

Omeprazole 40mg 1x day

Lisinopril 10mg 1x day

Domperidone 10mg 3x day

Amlodipine 5mg 1x day

He has also been given a vitamin drink to help build him up, but this was prescribed well after the stomach pains had begun

I wonder if anyone out there has had a similar experience of stomach pain (with or without vomiting) that I might be able to share with my dad? How did you deal with it? Was any cause pinpointed? And for how long did it last? I would be extremely grateful if I could relay some information to him. I feel next to useless as I live some 250 miles away and have 2 very young children (16 and 3 months). I would like to be able to help him in this way. Any advice or shared experiences would be most gratefully received.

[sharmayo]

Firstly just to say how sorry I am to hear about your dad ,it is a awful cancer to have.

My dad's circumstances were different to your dad as my dad had stage 4 pc which was inoperable,but his syptoms were the same as your dad's.

From the time my dad was diagnosed he lost over 3 stone in 12 weeks.

He found it very diffuicult to eat food and survived on anything bland like porridge,readybreak,soup,milk.

He also used to get severe stomach cramps but never suffered with constipation ,but every now and again he would get diarohera which the doctor said was down to all his medicaion.

My dad was also nervous about eating as he used to feel so sick after.

My dad was also a very fit and well man before geting pc.

Has your dad been offered any treatment.

Drinks such as Ensure are very good for replacing meals and also to build you up.

My dad could not tolorate them but I think it was just down to the flavour.

Take Care

Sharon

[morpaul]

Hi Vicki,

I am so sorry to hear of your Father's distress. I am not the same having had a complete pancreatectomy but understand some of the traumas he is living with.

I would expect some degree of bowel sensitivity post surgery given it is out of use for perhaps a week and therafter just a gradual build-up. Clearly there is some issue here that needs investigating. Neither I nor my nurse wife have ever heard of 'sticky bowel' I believe like you that is was made up to placate you! I really think you need to get back to the surgeon or his team at the hospital where he had the surgery. A local intermediate hospital does not know his case nor is experienced enough to understand all the implication of the exact procedure your Father had. I strongly urge you to phone them up and get him seen or admitted there asap.

Best of luck,

Paul

[VickiR]

Many thanks, Sharon and Paul, for your kind replies. It is good to know that there are people out there who understand what we are all going through.

I have tried to get my father to eat foodstuffs such as porridge and to a certain extent, he does manage to keep it down. He has always been a 'meat and 2 veg' man and is finding it very hard to adapt. The medical professionals keep on saying that he can eat anything but I feel that this is just not true. It was only after his most recent hospital stay that he was given dietary advice and this consisted of mainly full-fat dairy products and the like. He is on 'Enlive' to build him up, but this has only been for a couple of weeks. He managed to open his bowels 2 days ago and this has eased his pains a little.

He went to the hospital to discuss his chemotherapy yesterday and was told that he is no longer a candidate for the treatment as he is too frail and weak. I am staggered, though, to learn that my father does not in fact have pc but cancer of the bile duct (apparently a very rare cancer in the UK). My Mum is adamant that she was told it was pc. Apparently, the treatment and symptoms are very similar, though, so this must have been why the mix-up occurred. He was weighed during the appointment and is now just 8 stone 6lbs, which is nothing for a man of medium build. He is now apparently only to receive chemotherapy should the cancer recur (and he was given a 70 per cent chance of this happening). If he does then have the chemo treatment, he was told that there would only be a 1 in 20 chance of this being successful.

I feel as though we have gone from a position of reasonable optimism (my dad's surgeon kept on repeating that the operation had been a 'success') to one where the odds have been significantly shortened. This seems to have been as a result of his massive weight loss, which in itself is a direct consequence of this on-going stomach pain. My Mum has 'phoned the hospital and was told that an new appointment is in the post.

Thank-you both again,

Vicki

[Support Team]

Hi Vicki

the international Whipples Warriors have been networking by email to try to get an answer for you.

Barbara from NZ has said:

"I had a prolonged stay in hospital after my whipple, 7 weeks to be exact and I also could not eat because of vomitting and was fed intravenously with TPN. My stomach was slow to start working as my surgeon implied my stomach was sulking after being cut! I carried a pottle around with me for a month after coming home as never knew when I would need it. My eating started off with mashed potato and gravy. Anything sloppy that did not require too much digetion. Home made vegetable soup was really good, I started just drinking the liquid but progressed to actually eating the vegetables. I drank complete food like Complan mixed in milk. I also drank Ginger Ale, at first this was the only drink I could enjoy the taste of as everything really tasted awful to me. I had my first real meal nearly 3 months post whipple. I also had to have laxatives to help me go to the toilet and still do at times. At other times I just about need the very opposite.

I suffered horrendous pains, I went to my doctor one day telling her my 'new plumbing' was coming apart, that is what the pain felt like. I was on slow release painkillers at night for around 18 months. I still get attacks of pain at times, breath catching, unable to speak kind of pain. BUT I am a 5 years survivor in just 14 days time and I am so grateful to be so blessed."

Hope that helps but as Paul said best to try to see the surgeon and/or specialist nurse at the surgical centre to check. Is your father on morphine or pancreatic enzymes as worth checking on that. The morphine would cause constipation so laxatives woudl be needed and pancreatic enzymes may need adjusting or a different type.

[Support Team]

response from Jan in Australia

"This fellows delirium may have been in part to the morphine and part from the infection. I had a low grade infection with my operation and was off with the pixies a couple of days. The morphine may have contributed to constipation while in hospital, a common problem. Dehydration can add to constipation. I don't know about the medications if they may be adding to this too. I don't think I can contribute much here.

This is not a pleasant comparision. I do know a lady who does vomit, but not immediately after eating. Initially it was every two days, as a result she lost a lot of weight, and was dangerously low in potassium. Her specialist proposed that due to the cutting of nerves that the peristalisis (snake like

movements) of the stomach and intestines was affected. Nerves can regrow but can take a year to do so. At 10 months after her operation, she needed every night to purge her stomach of the food contents of the day, (she was attempting to have normal nutrition) and connect at night to food suppliments that fed directly into her intestines. She was not in pain during this time. Another guy I know was in pain after eating. He sought a second opinion and another surgeon who advised that the positioning of the rejoining was too close to the liver. He underwent virtually another Whipples and has been much better since.

Being in pain after eating is difficult to pinpoint. Is he eating to make up for lost weight and putting too much strain on his system? The recommendation is small meals often and high in calorie value. Is he eating processed foods? Foods high in preservatives can trigger pain. Homemade cakes and biscuits vs packet. I was told of one guy who could eat fresh organic chicken but not frozen supermarket chicken.

In summery, medication, nutrition and a second opinion. I hope he is feeling better soon. Emotionally I imagine this has been a tough road for him and for his daughter being so far away."

[VickiR]

Thank-you to all those who took the time to post replies to my previous messages and also for the private correspondence I received. It meant a great deal.

We found out about a month ago that my father's stomach pains, nausea and dramatic weight loss were not due solely to the whipple's procedure he underwent. He has developed a number of (some large) abscesses on the liver. He was refusing medical attention but his GP (called surreptitiously by my mum) managed to persuade him to attend hospital as he was extremely ill. He has had 2 drains fitted for the abscesses and these have now been draining for over 3 weeks. I did some research and found some obscure medical papers that discuss liver abscesses in post-Whipple's patients. His mood, and that of my mother, is extremely low, to say the least. He has spent the best part of 3 months in hospital. He is hardly eating (although he is being fed by a tube at night) and is extremely frail. Has anyone had any experience of someone undergoing a Whipple's procedure and then developing liver abscesses? I want to be able to give my parents some hope.

[VickiR]

Dear All,

I am sorry to report that my father's cancer has now spread from his bile duct to his liver and he has been given a matter of days to live. He has fought so hard and so valiantly but this last few months have been painful, confusing and distressing for a man who was once so fit, both mentally and physically. He is now staying in a hospice in the West Country.

As a family, we have discussed whether, in hindsight, we would have allowed the Whipple's operation to proceed had we known the immense amount of pain and turmoil this would lead to. Yet hindsight is a wonderful thing. I think that everyone would, given the option, welcome the slimmest chance of extending their lives if that was offered to them. Yet my dad hasn't had a single day of any quality since he underwent his operation in December. Nor has he eaten a single 'proper' meal since that date either.

He is a determined, popular and charismatic individual and I am so sad that my children will never get to know their wonderful grandfather properly, except in photographs.

Many thanks for all the support that I have received through this wonderful website (even though we subsequently found out that my father had bile duct rather than pancreatic cancer).

Vicki

[sharmayo]

Hi Vicki

I am so sorry to hear about you dad.

My thoughts are with you.

Sharon

[VickiR]

My lovely, brave dad lost his fight last Thursday. We are all devastated. My children will never get to know first-hand what an exceptional person their grandfather was. I feel as though we have all been robbed and so bitter that his final 8 months were unremittingly awful. I hate cancer.

[sharmayo]

Hi Vicki

Just to say how very sorry I am to hear about your Dad.

My thoughts are with you and your family at this very sad time.

Take care of yourself.

Sharon

[mel72]

I just want to say I lost my mum to pancreatic cancer in January 2008 after 11 months from diagnosis. Its so awful life is never the same losing a parent like this is its not fair. I have no kids but watching mums grandchildren grieving is so hard, Im sure you are finding things tough. If you need to chat I am here because its hard sometimes to express your feelings to people who dont understand how it feels.I miss mum so much every day as does her whole family, she was my best friend and why does this have to happen.