Next January will be 4 years post Ivor Lewis as, per all of our experiences it’s been a journey. My surgeon has been amazing but he’s an extremely busy guy and despite prescribing Creon at my first post-op followip hasn’t really addressed the dosage.
I’ve experienced a lot of issues with bile reflux, pain around the incision on my rib cage & drainage hole scars and other issues associated with “digestion” (to be polite).
At my last post op follow up he introduced me to his new senior nurse practitioner who spent 30 minutes talking to me about diet, medication, etc. She has spent a bit of time with a guy who researches Creon and Pancreatic enzymes.
The upshot of all of this is that I have been SERIOSULY under prescribed Creon. Apparently, eating 1/2 a cheese sandwich would require 75,000mg of Pancreatic enzyme (Creon) to digest properly. Taking a cup of tea with a single digestive biscuit should be accompanied by 25,000mg of Creon, the protein bars I use as snacks (instead of lots of frequent small meals) should be accompanied by 25,000 or 50,000mg.
Prior to this conversation I’d been taking a total of 12 x 25,000mg Creon throughout the course of the day. Her estimate based on my diet is that it should be more like 18 tablets. I have increased my intake and things are working a bit better (if you take my meaning).
I’d suggest discussing Creon with your GP, Specialist, etc if your experiencing lose stools, oily stools, etc as you may be under prescribed.
According to both my surgeon, the nurse and my GP Creon is an enzyme and really can’t cause complications or be overdosed on !
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Aussiepete
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Hi I am 9 months past Ivor Lewis and have problems with dumping syndrome and acid reflux. Recently my stools have been very loose and pale. I have never even heard of creon do u think this is something that could help me?
Hi I am 8 years post op and took creon for a while, I used to take it only when I was eating a fatty meal to aid digestion or my stools floated and wouldn't flush, I had to take the tablets after I had started eating about 2 mouthfuls in so it kept up with my meal. If I took it after the meal it never helped, suppose it depends on how you digestion has been replumbed. I took it on and off for about 2 years about a year after the op and it did help to get some weight on but as your gut improves and heals I was told I could cut it down, and haven't taken any for about 5 years now.
I had a lot of problems with digestion but when my surgeon took my gall bladder out he found I had got some adhesions which were causing me problems, he readjusted things and since then it has improved. Just got bile reflux started again this year and looking to find something that calms that down
Hi, I am 6.5 years post total gastrectomy op and was prescribed Creon as the pancreas wasn't working to produce the enzymes needed to digest food. Initially I was told to take 3, 3 x daily with a meal however a couple of years ago my specialist nurse told me I should take 1 creon for every 10g of fat I am eating including snacks and all meals. I have an App on the phone called Carbs & Cals that gives all foods and what they contain with various sizes of it and based on that how many creon tablets to take, i.e. 30g of fat take 3 creon. Must say it is a bit of a pain and I do not follow it as I should and that is probably why I still suffer, badly at times, with bile reflux. Taking Creon is difficult as you can under take as well as over take and either way affects your stools.
I'd recommend asking your surgeon, GP, nurse practioner, etc about it. I genuinely think it makes a difference to lose, floating, oily, etc stools. Can't hurt to ask.
I wasn't taking it initially, but after chemo finished I was genuinely struggling with all sorts of issues - these improved after I started taking it - improved again now that I'm taking more.
Hi that’s interesting. I was put on it by my dietician and take about 10 a day. I was told 3 with main meals and 2 with snacks but not with fruit or biscuits. It does help me with loose stools regulating my bowel movements and helping with dumping syndrome. I still get a bit of bile reflux i do not have a gall bladder.
Hi from Australia - I recently was prescribed Creon by my doctor after sever diarrhea with taking strong antibiotics and adding to the diarrhea following removal of my oesophagus 6 years ago. I only took 1 after each of 2 meals and became really unwell. I further investigated and found that elevated sugar levels are the most common side effect, and as after this surgery that happens adding Creon is not a good idea. As a back-up my doctor gave me info on a product called Energast which is classed as a food supplement to support management of gastrointestinal disorders. I tried it and it really works and for the first time in years I don't have to worry about diarrhea whilst out. The ingredient is sodium butyrate which my doctor said was not a drug and had no side effects. I am so glad I tried it after my bad experience with Creon. The product comes from Poland so you should be able to buy it (I bought mine online from the Australian distributor) really worth a try as daily colononic irrigations are not much fun.
All of us are different. Removal of some/all of your stomach and oesophageous changes the biom in your gut. Damage to the veygas nerve is inevitable - at worst severing it.
I’m not surprised something that worked for me didn’t for you. I’m going to check up on Energast.
I wrote my notes because it worked for me and I thought it was worth discussing. One of the things I was told is that Creon is typically under-prescribed ....
Yo Aussie. Do you know why your on Creon, as I’m on it but I was told that they may have to take my Pancreas out as it was welded to my stomach wall. I’m still not sure if they did take it out, but that is the only tablet I take regularly. I’m also on WarfarinAnticoagulant.
yes I am another Aussie and I had Ivor Lewis op 2009 and find that by grazing during the day I get through fine. I cannot eat full meals and/or have the want for the large meals. I have dumping syndrome through eating little dairy as that set me off. dealing with acid reflux I had that problem also now I have found by not eating or drinking 2 hrs before sleep helped me and funny enough sleeping on my right hand side also made a big difference, not saying it works for everyone.
Hi there I am 5 years post I L and am fine but I do Break open 2 creon tablets a day as I can’t swallow tablets now. which has helped with stools when abroad I need to take more from lab
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