Whipples and sore stomach

[worrier]

I went through a whipples procedure 3 months ago today. Fortunatly the tumour was benign, however over the past two or three weeks I have developed a soreness in my stomach and I cannot understand why. My wife believes that it is probably the stiches healing but I am not so sure. I am eating well but also suffer from some flatulance. The doctor has given me a high fibre drink to try and it does seem to help. Does anyone have any comments?

Peter

[worrier]

Since I posted my piece on this forum My stomache seems a lot better. (Always the way isn't it). I will ask the doctor abour Creon and see wht he has to say. Yesterday I went out for lunch and suffered for it with terrible griping pains which after a painful 20 minutes on the toilet did eventully disperse.

[lorraine]

Hi

My dad had the op in july and for a good while after he had and still now sometimes suffers the same .(wind not so bad as it was now).I just think it's everything trying to heal as it can take a long time .But i will ask dad more info and let you know how he manages.

Best wishes

Lorraine

[worrier]

Hi gang,

Back in the summer the pain in my lower abdomen was so bad that the doctor sent me to E A U (emegency admissions unit) of our local hospital. After the ususal examinations the doctor on duty who happened to know me because he actually assisted when I had the Whipples recognised me and came to the conclusion that I needed to go onto Creon and I was prescibed 10,000 dosage to be taken before every meal. These did help but I found that I needed to take 2/3 to get any benefit. In August I had a follow up visit to see the consultant who told me that the 10,000 dosage was not high enough and prescribed the 25,000 dosage. I now find that in the evening I am suffering from pains in my stomach and am wondering if I need to actually take a capsule before every meal especially as my evening meal consists of a sandwich, a slice of cake and ususally a piece of fruit.

I would be interested to know if anyone else has had similar problems.

Peter.

[worrier]

Dear pennyb

thanks for your reply and I have printed off the information you suggested it does seem to concur with what I am suffering. Can you or does anyone know the symptoms of overdosing on Creon. Could the discomfort I am going through be caused by too high a dosage?

I am going to try and contact my consultant on Monday to see what can be done. I do have some 10,000 Creon capsules and will try to these when having breakfast which for me is just a bowl of cerial.

Peter

[Ellie]

Hi Peter

I think you will find that you cannot overdose on Creons. They are a natural, organic product, designed to break down the fat in your food, so take more creons with higher fat content foods and maybe less with things like fruit etc. My husband had a whipple and is now on Creon 40,000. He takes 2 with cereal, 2 with a sandwich, 3 with a fattier meal.

It doesn't seem that anyone gets very good advice when they are told to use Creons. It seems to be a bit hit and miss what you are told, but probably different people will need a different dosage, depending on their circumstances and diet.

Hope you soon get sorted out! It was a huge operation for you to go through, but thankfully you were lucky the tumour was not malignant.

Best wishes

Ellie

[Juliana]

Hi Peter,

When I first started taking Creon I still has all my pancreas, and was taking 10,000 with every meal/snack - it was nowhere near enough. Once I had my whipples I moved onto a combination of 10,000 for snacks, 25,000 for meals - it was an improvement, but I would still get colic pains or feel like I'd eaten something 'off'.

Whenever I asked for advice about dosing, the replies were extremely vague - basically, you can't really take too much - however if for some reason you do take an excessive amount/overdose the only side effect is........an itchy bottom!

I've never had discomfort from taking too much, but certainly get it if I haven't taken enough.....and a visit to the toilet can get a bit messy :S

Currently I've moved up to the 40,000 as it just saves on the quantity of capsules I am taking. For meals, and that's including breakfast I take atleast 40,000 - usually its a 40 + 25. For small snacks, a 25 or 40 by itself. If you were eating something particularly fatty, you can open the capsule and sprinkle it over the meal - just don't chew the bits too much as they don't taste very nice.

My surgeon also said there were different types of pancreatic enzymes, not just CREON and he said some of his patients did better on a different brand....may be worth an enquiry.

Hope this helps and good luck,

Juliana

[worrier]

Hi All,

thanks for all your reply's they have been most reassureing. I wasn't told about Creon until my GP got cpncerned about me and sent me on emergency to hospital, not even by the consultant. I have upped my dossage and now take 1 X 25,000 with my breakfast, 2 with my cooked lunch time meal and I am going to take 1 with my tea which is usually just a sandwich. We will see how I get on.

Thanks for all your hel p

Peter

[worrier]

Hi gang,

After increasing my creon dosage I have been feeling better. I now take 2 X 25,000 with breakfast. 3 X 25,000 for with cooked lunch & 2 X 25,000 with tea. I am still suffering with some pain in my lower abdomen in the evening and during the night which prevents me getting a good nights sleep. I am beginning to wonder if my bowels are not opening enough times a day and that the soreness is due to a build up of waste product in my intestines although I do not get the urge to go to the toilet. I have an appointment to see my GP tomorrow to discuss this somewhat delicate problem.

Peter

[Juliana]

Hi Pete,

Glad to hear the creon are helping out a bit, it's all trial end error and you may come to notice certain foods regardless of the creon just do not agree with you. I've read many stories where people just cannot tolerate dairy, or spices or citrus etc. It may be worth keeping a food diary just to see if there are certain triggers to the uncomfortableness.

I know with me, it was eating late - even if I took a lot of creon I would have trouble digesting - even if it was just a couple of rounds of cheese on toast.

Infact, this past weekend I've had pains in the abdomen, keeping me awake all night and it started after I had 6 crackers with cheese as we had friends around watching the X-factor....My stomach hasn't returned to normal yet, its very swollen, hard and tender - but I am going to the loo ok.

Besides....there is always the dreaded IBS - just because we have cancer doesn't mean we won't experience other joyus health issues

Last year during treatment I had terrible stomach spasms.....I thought I was dying and not even morphine and gas and air would calm them. They told me I was constipated - even though I was going sometimes 3-5 times a day (my creon dosage wasn't right at the time). They put me on all sorts of laxatives which caused me discomfort - but one I did try which was very gentle was 'Movicol'. Stay away from the Lactulose - it caused terrible abdomen gripe/colic.

Anyway, hope you get it sorted - and lets hope we both can get a decent nights sleep!

Juliana

[worrier]

HiJuliana

The doc has put me on Fibrogel. I had this when I first came out of hospital before the medics realised I needed Creon so we will see how we go.

Regards

Peter

[worrier]

Hi gang,

just an update on my situation. After approx 15 months Whipples recovery. I have to say that I am feeling a whole lot better and seem to have found the right dosage of Creon & Pepermint Capsules to keep me reasonably comfortable. I take 2 X 25,000 Creon and 2 X Pepermint Capsules before all meals. I also seem to get some stomache pain after having my bowles open, I take Co-Codamel to alleviate this, most evening I suffer from lower abdomen discomfort and am not quite sure why. I have to see the consultant in August hopefully he will be able to throw some light on why this should be.

Good Luck to all you fellow sufferers. KEEP SMILING!!!

[worrier]

Dear All,

I am not sure what I am going to describe is anything to do with the whipples op. On 3 occassions I have come over quite ill. I start to shiver and have hot sweats at the same time. I feel quite ill, slightly sick and with a slight headache. I have to take to my bedd for the rest of the day. Has any one had similar symptoms?

Peter

[Guest]

Hi Peter,

I agree that you need advice particularly in case there's an infection. My dad had the Whipples op in December and he experiecned similar symptoms. Not very often but occasionally incredibly flu like stuff going on. He then had some post op chemo therapy and has had the occasional temperature rise and shivers but at least seems due to the chemo whereas we just weren't sure what it was before. The advidce we have always had though is that if you expierence such symptoms then get them checked out, and any time I've had to call a specialist nurse or general nurse at the hospital about symptoms like that I've never been made to feel like it wasn't worth it. Not sure how helpful. Positive that it comes and goes infrequently but I'm sure you'd feel less concerened if you had plausible explanation.

C

[volmod]

Dear Peter – Sorry to hear you’re having these worrying episodes. If you think that besides seeking medical advice it might help you to have contact with someone who has also been through Whipple’s please get in touch with us via enquiries@pancreaticcancer.org.uk (or the office on 0203 1771 686) and we’ll do our best.

Regards, Vee (Moderator)

[worrier]

It is almost 3 years since my operation at last things are looking better and most of the time I feel pretty good. I still get occasionalyy pains in my stomach especially after going to the toilet, I try to control this by taking co-codomol. I have also found it is better if I cut out my evening meal or eat later in the evening instead of my usual time which is 5.00pm. It It has been a long haul but hopefully I will soon be 100%

[PCUK Nurse Jeni]

Hi there,

This is great news.

Well done to you, and hope the recovery continues in such a positive mode.

Jeni.

[worrier]

Hi,

I went through my Whipple's in August 2008 without too many problems. For some time now on occasion I get a pain in my chest similar to having gall stones but not quite so bad, a bit like heartburn without the burning sensation. This develops into sore stomach and a feeling of nausea and on occasion I have actually been sick. After I had the Whipple's, the surgeon did tell me that one of the side affect can be a narrowing of the bile duct and I am wondering if anyone else has had this problem. When it it does occur I have to take to my bed and I shiver and sweat both at the same time. Sometimes this can take a full 24 hours to clear up and then I can be fine again for weeks. Has anyone else experienced this sort of thing?

Peter

[PCUK Nurse Dianne]

Thanks Peter,

Thank you for your question, and often something we hear of from people a few years after Whipple's surgery. It may be related to a bile stricture as you mention or even some 'reflux back through the roux-loop' that has been created with your Whipple's surgery. I will email you some further details as this is a bit lengthy for the forum and may require some further information on your part.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK.

[worrier]

Hi Dianne,

just to let you know that I do take 1 X 30mg tablet of Lansoprazole every morning and evening before going to bed.

Peter