How do I know if creons are doing any good?

[kittycat]

My husband has been taking creons for a few months now and I had hoped that his weight would increase but it isn't really. He puts a couple of pounds on then loses them, sometimes because of diarrhoea, and although his appetite is good and I am fortifying his food there is little change. He is having a pretty rough time with fatigue and has several days where he is in bed quite a lot and has little energy but I had hoped for an increase from 7st. Has anyone else experienced this.

Sue

[Bowie]

Dear Sue, yes James experienced weight loss in the beginning, it was his only really symptom, that and diarrhoea. Anyway despite the croons his diarrhoea continued and the 'experts' kept telling him to take more, but with little affect,

It was Leila on this site that researched and found out about Small Bacterial Intestinal Overgrowth (SIBO) Anyway James finally saw a Gastronenterologist and a lot of patients with PC also have SIBO and the treatment is antibiotics. The Gastronenterologist was brilliant and suggested he try several different kinds, so he experimented, but now takes one that suits him, with a break of up to 2/3 weeks or until the diarrhoea starts up again, also takes colesevelam, for bile adsorption, again apparently a really common problem for PC patients. Overall much improved and no longer losing weight, even put on a few kilos. Thinking of you both and everyone else with this terrible disease. Fiona X

[kittycat]

Thanks Fiona, I'll take this up with the Oncologist this week. It's just so demorallising to keep trying to feed him up to no effect. The dietician says we're doing all the right things but you can't help wondering what more you can do, but I will pursue the SIBO on Thursday.

Sue

[Guest]

Hi Sue,

Is your husband still having bad diarrhoea? Also, I don't mean this to sound like I think you are stupid but is he taking them correctly? I ask this because my Dad would always go on quantity rather than the fat content. The more food he ate, the more creon he thought he needed. If he ate a chocolate bar, he would think he didn't need that many. It was an argument we often had.

Also, your husband might not be about to tolerate the coating on the creon. Why not try having the creon with mashed banana or apple sauce. Don't mix them together, just sprinkle it on top. He must have it straight away though, as the creon will be activated straight away on opening. If you want confirmation you can do this, ask the nurses on this site, it was them that suggested it to me. If you are then still having problems with diarrhoea, then I would definitely ask your Gastrointerologist about SIBO. They will probably tell you that it will be a very slim chance he has it, and therefore not worth being tested. Tell them you would still want to be tested, if not just to rule it out.

Leila xx

[kittycat]

Hi leila, yes he is, but only once a day and it is definitely getting better. He is managing to maintain his weight just about, but does the amount of fat in the meal dictate the amount of creons he should take? He's taking 100,000 with a meal and 25,000 with a snack. Some of his meals are quite high fat because I'm using cream and butter to increase the calories. I didn't get chance to speak to the doctor on Thursday about sibo because she wax running very late and couldn't get us out fast enough!

Sue