Managing digestive symptoms

Pancreatic cancer can cause problems with your digestion. Here people talk about their experiences of managing digestive symptoms after a diagnosis of pancreatic cancer.

Digestive symptoms of pancreatic cancer are treated with medicines, such as antacids and Pancreatic Enzyme Replacement Therapy (PERT). There are different brands of PERT available. People we spoke to talked about Creon.

A consultant explains that many people with pancreatic cancer will need medicines such as Creon…

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Now, just as those patients have had a reduction in their insulin production, they’ve also often had a reduction in their digestive juice output of the pancreas, be that either from a resection or even just from, in those patients who haven’t had a resection, due to a blockage of the pancreatic duct. And in these patients they tend not to digest their fat nearly as well as they should.

Adding in a pancreatic enzyme supplement of lipase, the commonest one within the UK being Creon, but there are others such as Pancrex, can help the symptoms of fat mal-absorption, which tend to be a feeling of bloatedness, often with a loose, rather than true diarrhoea type stool, and the key feature of it is that it’s quite difficult to flush away.

And if you’re needing to flush your toilet a couple of times then the likelihood is you may well have some, what we would call, steatorrhoea, and you should be on pancreatic exocrine supplementation as this can often help, greatly, your symptoms.

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Sometime after surgery Helen started having diarrhoea and wind. The doctor told her to take Creon…

Age at interview 49

Gender Female

Age at diagnosis 47

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You mentioned earlier that you were taking a drug called Creon to help you with your digestion. When did you have to start taking that?

I really only started taking it properly about six months ago. I hadn’t needed it post op, which I think was quite unusual, as most people do take Creon almost immediately. But I found that I wasn’t really having digestive problems. I was having a few problems with my, with wind basically and, and I started getting bouts of diarrhoea, which when I asked the registrar about at one, at one of my appointments, he said it was because I wasn’t taking enough Creon. And at that time I was only really taking it when I felt that I needed it. So he recommended that I start taking it with everything that I eat, and take more of it as well. You can take as many as you need basically of Creon. And they’re capsules, and they just help the food, they help your system to digest food so that it’s disposed of normally, basically. And it, and it does help a great deal. But I, I am finding now that I’m having to take more and more. If I don’t take them then I’d go back to having diarrhoea again.

Do they come in so many milligram tablets?

They do come in different doses. My dose, they’re 40,000 units, but they do 10,000 units as well I believe. I think it’s used in different conditions as well. So I suppose, pancreatic seems to be the 40,000 dose.

So you take that, one of those every time you have a meal?

More than one actually. I can take as many as I need, as many as I think I need. It depends on what you’re eating. If you’re eating a particularly fatty meal or spicy, or, you know, with onions in or something, then I do tend to take about three or four with that meal.

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Creon has helped Richard to digest fats and has made him look and feel much better.

Age at interview 63

Gender Male

Age at diagnosis 60

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Apart from the chemotherapy and painkillers, do you have to take any other long-term medicines as a result of the pancreatic problem?

No, no. Oh, well, except the Creons. And the Creons I’ve been taking I think possibly even before the operation. The pancreas produces enzymes which help digest fat. So if your pancreas is not working too well, one of the effects can be that you’re not producing these enzymes. So the fat doesn’t get digested, and that, that fat comes out in your stools. And that’s one of the reasons that you can get floating stools as a symptom of pancreatic cancer. If you take, the trade name of the ones I take are called Creon, and they’re, they’re pigs’ enzymes. And you take those with meals and it helps to digest the fat. And I think of, of the, of one single item that, that’s helped, it’s been those. Because obviously I was, if you like, on a fat-free diet before I was being treated. And now, now I’m getting, the fat that I’m eating is being digested and getting into my system and making me look a lot better.

And do the stools look normal now?

To be honest, I’ve forgotten. This has gone on for so long. Yes, I’ve half forgotten, sorry, I’ve forgotten what normal stools look like. But, yes, they look better than they were, yes, much better.

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Bob found out about Creon online when he was worried that he felt sick when he ate. He asked his specialist for it. Steve feels bloated and uncomfortable if he eats a fatty meal without Creon.

Lesley is a vegetarian and wasn’t happy about taking Creon because all forms of PERT are made with pig enzymes. She felt had no choice about taking it because she lost weight quickly without it. She asked the Vegetarian Society and they were reassuring that she was still a vegetarian.

If you’re taking Creon, you need to work out the right amount to take.

Before each meal Vicky has to estimate how much Creon she would need to digest the fats. She…

Age at interview 55

Gender Female

Age at diagnosis 53

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I’m on obviously quite, I’m still on medication, which I will be on for life, for the pancreas, and my digestion is pretty good, but again if you get your pills, I think it’s a matter of getting the pills, taking the right amount of pills, you can suddenly have a day when you have really bad diarrhoea for half a day, and you feel completely washed out. So, you know you just have to write off a day. So, but apart from that
What pills are you taking?

I’m on Creon, which is, that’s for the digestion, because having had a large part of the pancreas removed I can’t, as far as I understand I can’t digest fat. The pancreas digests the fat for you. So the pancreas is not producing the enzymes to digest fats, so before each meal, before I eat anything I sort of mentally think, Right how much fat am I going to eat And I have various different measures of Creon, and I either take a small one or two small ones, or a big one, or something. And its, it’s a very, it’s slightly ad-hoc so I think sometimes you don’t take enough, sometimes you take too much, and that reacts, you know, and can cause you diarrhoea really.

So you take it before the meal?

I take it before, yes.

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Most people said that taking Creon helped their digestion, but it hadn’t worked for Simon’s wife, not even when she followed advice to open the capsules and sprinkle the contents on her food.

Some people said that taking Creon meant they could eat anything they wanted to, even in large quantities. Other people still had problems with some foods. Ann said it was difficult learning what she could and couldn’t eat. She no longer enjoyed cooking because it made her feel sick. A few people mentioned that they found it difficult to digest meat and so had fish and eggs instead.

Phil managed small meals without any Creon. He could still eat all the foods he used to eat but in smaller quantities. Some people, such as Adrian, found it hard to eat enough to keep up their body weight. Their doctors suggested eating small portions at frequent intervals.

Dietitians might suggest special drinks to boost protein and calorie intake. Lilian didn’t like them because they were so sweet. Hamish said they gave him diarrhoea. Adrian said that, like food, they made him feel too full. Lilian also didn’t like some of the high calorie foods that are recommended, such as milk puddings, pastry and cakes.

Fred had to eat his last meal before 7pm so that he didn’t get indigestion or discomfort in the evening. Hamish found it hard to eat enough because of bloating. He also said his taste buds were not working and his food tasted like cardboard.

Some people, such as May, still had bowel problems and lost weight in spite of taking Creon. May also took omeprazole to reduce gastric acid, and metoclopramide, which her doctor prescribed for sickness.

May took Creon but she still had diarrhoea and had her bowels open two or three times a night…

Age at interview 75

Gender Female

Age at diagnosis 73

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How long after the operation was it before you could start eating a little bit?

Now where my food’s concerned, I always had a wee bit every day.

didn’t matter if I felt like eating or not I always had something. Something that was easy to digest.

And now can you eat most things?

I can eat most things, but there again I’ve got to be careful what I’m eating because my toiletries are not that great.

And I’m up during the night quite a lot. So I’ve got
Do you have, do you have to get, get up and go to the toilet
Yes.

.. and your bowels open quite a lot?

Aha, aha, aha.

How many times a night?

I’d say about two or three times a night. But they’re trying to overcome that with, they increased my tablets.

Which tablets are those?

Creon.

They increased them and they can’t give me any more now, they were doing some tests on that to see if they could help me in that way and they have helped a bit, I’m up maybe once, twice a night now which does help.

Is that like with diarrhoea?

Hmhm.

No, that’s
Aha.

… disturbs your sleep doesn’t it?

Yes, it does, aha.

Do you have to take any other tablets apart from the Creon as a long term result of having the operation?

Oh, I take quite a few tablets. I take about 15. The, the Creon…

Do you have, did you develop diabetes as a result of
No, I haven’t, I haven’t developed anything at all ..

Oh that’s good.

whatsoever. I’m just, if I could put some weight on, that’s the only thing. I mean, just put some weight on.

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Some people took many medicines. Peter, for example, took Creon and domperidone, which helps to move food faster through the gut, and helps to prevent nausea, bloating and regurgitation. He also took cyclizine, an antihistamine used to treat sickness or dizziness. At times he also took loperamide (Imodium), which is used to treat diarrhoea. This drug slows the forward movement of intestinal contents by the intestinal muscles. He also took thiamine (vitamin B1), and painkillers. Fred took about 13 tablets each day, including Creon, and iron tablets.

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