Ensure and smelly gas

[pauljonathan]

I had an extended whipple operation one year ago and continue to have problems with: (1) having to drink three Ensure bottles a day, which leaves me bloated, uncomfortable and often in pain, and (2) smelly gas, which is embarrassing, especially if I am in a friend's house or at work and need to use the bathroom.

When I had the operation I understood that any problems would be resolved within a year, but the last time I saw my consultant she said this could go on for years and perhaps the rest of my life.

Any suggestions welcome!

[sandraW]

Hi there, Paul or is it Jonathon, welcome to the forum, sorry I can't help you with any suggestions, but just wanted to say hello, take care sandrax

[J_T]

Hi pauljonathan, the age old question - are you taking Creon? I am no expert in Whipple situations but I do know taking Creon helps enormously with digestion.

Why not give one of the specialist nurses on here a ring? They work office hours and have a mine of information! 0808 801 0707

Best of luck

Julia

[pauljonathan]

Thank you for your suggestion(s) and support!

My consultant suggested I increase my Creon from 25,000 to 35,000 units per meal. When that made no difference I increased it to 50,000 but it still made no noticeable difference.

I have read some people taking up to 150,000 units and I am now wondering if I should be trying much higher doses.

[nikkis]

Hi there,

May be worth asking about different drink supplements. My husband had Peptamin, this was recommended by a specialist dietitian and unlike a lot of foods/drinks, never caused him any problems with pain, as it is very easy to digest.You could also ask about a super probiotic such as VSL# 4, that can definitely help with the wind as the type of surgery you have had often causes a bacterial overgrowth. There are also antibiotics than can help with this,

Nikki

[PCUK Nurse Jeni]

Hi PaulJonathan,

Welcome to the forums.

Sorry to hear about the issues you are having - certainly sounds like Pancreatic Enzyme Insufficiency. Do increase the creon to much higher doses - these products are produced predominantly for children, so the doses you are having are still small. Some folk take 120,000 -160,000 per meal - also, it needs to be titrated with the amount of fat in the meal, so the more fat, the more creon needed.

Try doubling every dose for a few days, and if no different, do give is a call and we can chat through alternatives. Also, make sure you are taking them just before you eat with half glass of water (nothing else).

Kind regards,

Jeni, Nursing team.

[pauljonathan]

Thanks all; I feel happier today after talking to Jeni and seeing my consultant.

I learnt yesterday that I have put on two kilos in the last three months (having not put on anything in the previous seven months) and so feel better about continuing with the three Ensure bottles per day. It's not easy but at least now I can see some reward. That is something to celebrate!

I am also feeling better with my higher Creon dose. My slight frustration is that one year ago my consultants started me on 25,000 units per meal and despite me voicing my difficulties the only suggestion I was offered was to increase it to 35,000 units. It was only by coming to this website recently that I realized I could and should be taking much higher doses.

Nikki - I asked my consultant about Peptamin but was told it was not available. I also asked for a flora test to check if I have bacterial overgrowth but was told it is not necessary. Nonetheless I am going to pursue both of your suggestions - so thanks for that.

Paul

[Guest]

Hi Paul,

So pleased you are increasing creon. It annoys me so much that so called medical professionals give such wrong advice.

With the Bacterial Overgrowth, I would be persistant and be tested for it. I thought my Dad had this, and we asked his gastroeinterologist who said, he doesn't have it, not necessary. I demanded he be tested for it. Just to rule it out if nothing else. He has tested positive for it. The professionals don't always know better.

I think it is worth being tested for everything, so you can rule it out.

Leila xx