Anyone else here on Creon or Pancreatin?

[LorraineP]

Hello I've been having persistent sickness for the past 18 months (I still don't have a definite diagnosis and I'm in the system for more tests) and one of the conditions diagnosed so far is Pancreatic Endocrine Insufficiency (PEI).

I was given Creon tablets but stopped taking them after 6 weeks as the frequency of sickness became worse. I was then given antibiotics and an alternative to Creon called Nutrizym 22.

I decided not to take them both at the same time as I wanted to see if the antibiotics would stop the sickness. I finished the course 2 days ago and sure enough I felt much better. So only yesterday I started taking the Nutrizym (which I think is just a brand name for Pancreatin) and last night I was sick again. It could just be coincidence but now I don't want to take the Nutrizym.

I'm not asking for advice on whether I should stop the tablets but I just want to know if other people have had experience of vomiting while on Creon or Pancreatin and did the vomiting settle down with persistence?

 

[mikeyB]

Hi Lorraine. I take Creon for the chronic pancreatitis. Do you take your tablets while you are eating? That is, in the middle of the meal rather than at any other time. If you aren't, then doing that should fix things. I've never had vomiting with Creon.

 

[LorraineP]

Hi Mike, yes I take the tablets either during or after a meal. From what I've read online other people seem to multiply tablets using a formula based on number of grams of fat eaten at each meal. I've been told to take just one tablet with each meal and given no dietary advice (it was only a quick telephone call from GP) so I could be taking too much or too little for what I need at each meal. I've no idea.. It's a shame I was so sick when taking Creon as it really settled my erratic blood sugar results for a while.

So this morning I booked a private appointment with a gastroenterologist as I need things explained to me. I'll have to pay for it myself as I have no insurance but I've waited a year already to see a gastroenterologist on the NHS and the earliest I will be seen is July or August. I can't wait that long as 18 months of regular vomiting is taking its toll on me. Needless to say blood sugars are bonkers!!

 

[khskel]

No problems with creon which I take for exocrine insufficiency.

 

[pottersusan]

A fellow creonista here - I take them by the shed load (at least 4 x 40000) before I eat. I know there's a formula ... in theory, but I don't do sums, I just throw them down by the handful. I was told you cant overdose. My only problem is the vast amount I need to take.

 

[Mikew]

Hi lorrainep, last year I spent almost 4 months in hospital due to necrosis of the pancreas and now have less than 20% of my pancreas left ( which doesn't work) .

I was told to take 3 to 4 tablets while eating a main meal (25000) . They don't make me feel ill at all although on discharge from the hospital I had a lot of high abdominal pains in the pancreas area which I didn't know what the cause was. So I tried less creon and then more to no effect, In the end I have put it down to my internals healing? ( I also wondered if what was left of my pancreas was trying to produce the insulin to cover what I had just eaten.)

It's been almost a year now and I still get pancreatic pain but nowhere near as often or as painful. But I don't think any of my issues were caused by the creon.

Cheers Mike.

 

[Ref]

I've been using creon for around 7 years initially due to chronic pancreatitis and more recently due to a total pancreatectomy. I've never vomited because of them. I usually have anywhere between 4 and 8 25k tablets per meal. I don't use a formula (it's enough hassle counting carbs without counting fat content as well) but you just get an eye for it over time. Keeping a food diary will help you get the hang of it. You can't overdose as they are enzymes rather than medication.

One suggestion - please make sure the gastro you see is a pancreas specialist. The pancreas is a specialist organ and you might find a general gastro doesn't have the answers you need.