Newly diagnosed. What helps control symptoms of gas and bloating?

Creon needs to be optimized for each meal. Following the “general” recommendation of your prescriber may be insufficient for the amount of enzymes to cover the the the carbohydrates, fats and protein consumed. Optimization is made easier using the on-line calculator at pertcalculator.org.

When taking Creon or any pancrealipase, take the first one at the start of the meal. When additional capsules are calculated, take them spread out evenly through the meal to ensure consistent levels of enzymes for thorough digestion.

High fiber foods are comprised of oligosaccharides which are complex carbohydrates. The enzyme needed to digest oligosaccharides is alpha-d-galactosidease which is not one of the enzymes found in Rx pancrealipase like Creon. Eating foods of high fiber will produces excessive gas resulting in bloating and possibly painful cramps if it gets trapped in the intestines. If you eat corn, peas, raw carrot, broccoli, cauliflower, turnip, cabbage, Brussels sprouts, potato with skin, various grains like oats, bran, popcorn, brown rice, barley, all varieties of legumes, they will require the enzyme alpha-d-galactosidease. In North America, it is sold as the OTC product Beano. A capsule taken with these foods will digest them eliminating gas and bloating. This is the proactive way in dealing with gas.

If gas has formed, the reactive way in dealing with it is to take a simethicone-containing product. Examples in the North American market are Phazyme and Gas-X. This doesn’t prevent gas formation…it deals with gas that has formed by breaking it up into smaller packets easier to expel. The better method is proactively preventing it by using a product like Beano first.

It is not uncommon for someone to develop lactose intolerance and/or gluten sensitivity following the Whipple procedure. If you develop a lot of gas from eating dairy, that is an indication of deficiency of lactase enzyme. You can purchase lactase capsules or dairy items that say Lactaid on it. Gluten sensitivity is another culprit. If you suspect either sensitivity, it is easy to check for by removing all foods containing lactose and gluten and then introducing back one of them such as dairy. If you produce gas, then dairy is a problem requiring eliminating or using lactase enzymes or Lactaid products.

Then check for gluten sensitivity by stopping dairy and eating foods with gluten. If you produce gas and GI symptoms, you, have your answer and need to eliminate gluten from the diet.

There are other GI symptoms with various causes. If enzymes don’t provide a solution, then a consult with a GI specialist is suggested. They will do a work-up to check for Small Intestine Bacterial Overload (SIBO), IBD/IBS, Crohn’s Disease, colitis and others. In the vast majority of post-Whipple cases, it is optimization of enzymes and adding alpha-d-galactosidase to digest high-fiber items. There are OTC broad spectrum pancrealipase containing additional enzymes not found in Rx pancrealipase. If you eat fruits with skins, onions and other hard to digest items and don’t wish to eliminate them from your diet, speak with a Registered Dietitian about using Pure Encapsulations Digestive Enzymes Ultra, NOW Super Foods Enzymes and Enzymedica Digest, Digest Gold or Digest Spectrum. These are frequently recommended in GI clinics. They also contain in addition to amylase, lipase and protease, cellulase, hemicellulase, alpha-d-galactosidase, glucoamylase, invertase, pectin ASD and several more. Digest Gold is higher potency and the one R.D.-C.S.O. credentialed dietitians are likely to recommend.

@johnny1955
There are a lot of different strengths of Creon. Up to 36,000 lipase per capsule,. I thought that my recommended dose of 24,000 (1 capsule) per snack and 48,000 per meal, so up to 216,000 per day was too much. It's been 10 weeks since my Whipple surgery and through trial and error, I have come up with 120,000 per day. I'm still working on it. A lot depends on diet and how much fat you eat. I try to keep to a low fat diet, eating as many healthy fats as possible. I have also been in communication with a dietician and she said over dosing with Creon is less likely than under dosing. Also, I'm taking what would be considered a low dose. Consult with your doctor, keep a food journal and track your dosage is my recommendation.

@kakalena
My creon is 36,000. Supposed to take 2 capsules at meals and 1 at snacks.

I am still having problems with gas and bloating and it has been almost 5 months since whipple surgery. I have tried all the things mentioned but nothing works completely.

@johnny1955
I had Whipple done 8/25
Had the same problem. Frequent loose stool then I lost 30lbs. My dietitian told me because of poor absorption, not enough pancreatic enzyme. She told me to take 4 each meal and 2 for snack. My weight is stable(although not gaining)
Bowel movement normal twice a day. You may need to check if you need to increase Creon too

@johnny1955 for sure oatmeal or any bulk fiber will help the loose stools it takes about of week of consistency eating with it to balance out…. I only take 3 cream per day, because it gave me gout.

Hi annieraatz,

I'm in Australia, so I'll assume the level of medical expertise in your country is at least as good as here.

I'd like to relate my story because it has similarities to your husband, and he might find something useful in it.

First, I have no medical training, so my comments are obviously *not* recommendations.

Second, I have great confidence in my medical care being the very best in every respect, and I follow the usual advice: do *exactly* what they say and *only* what they say.

Third, even if your husband's medical people might get a bit miffed, *ask questions*. They'll soon tell you what is good for him and what isn't. Please be careful taking advice from the internet - *do not* change *anything* without first talking to his team.

My tumour was the rare-ish Ampullary of Vater Adenocarcinoma. It was at the far end of the duct system, on the duodenal wall. I presented with almost no symptoms except for very high liver function values that were stumbled across by my doctor during a regular checkup.

Six months ago, I had a very successful Whipple surgery, but 4 out of 20 resected lymph nodes had tumour cells in them, so I'm having aggressive chemotherapy to mop up anything that may be floating around. My chemotherapy includes three chemicals, at least one of them responsible for extreme diarrhoea.

I've had 8 of the scheduled 12 fortnightly chemo cycles, and though my side effects have been manageable, diarrhoea has been by far the biggest problem. Every time I eat/drink (except water), I take a replacement enzyme medication, but I've had a lot of trouble getting the eating/loose BM right. As a result, I've been taken back to the hospital several times to correct my electrolyte balance and hydration.

I've had a very similar experience to your husband, trying to comply with the oncologist's advice to eat lots of protein and calories, take my enzyme replacement meds, but also manage my stools. I eat every few hours and have some electrolyte drink when I have an 'episode' in the bathroom.

Fortunately, I don't have pain, but immediately after eating, the gases start gurgling around my guts and can become quite loud and uncomfortable before I invariably end up back in the bathroom with severe diarrhoea. A few days after being 'fixed up' in hospital, it returns.

Last week, I left this situation *far* too long (over a week!) and ended up having to spend 9 days in hospital. The inflammation of my intestinal walls was quite bad, and the risk to the heart function is threatened by an electrolyte imbalance. Please don't hesitate to call for medical help if he's worried.

Just today (Monday), I called my emergency team to discuss a diarrhoea relapse over the weekend. The advice was to go back to the schedule they sent me home with last week. I won't tell you the exact details because your husband should get it from his medical people, but it involves three different anti-diarrhoea meds.

I accept that my intestines will never be the same again, but I've put myself at risk by not seeking medical advice at the first sign that things aren't right again!

Good luck and I hope you got something out of my rambling!
🙂

@johnny1955 saw my gastro doctor yesterday and he recommended activated charcoal. Haven't tried it yet but found it at Walmart.

I was told by my gastro doctor to try activated charcoal. Got mine at Walmart. Do not take with other drugs. Usually
One hour before or after eating or other drugs. Just started yesterday so not sure how it works yet.