Acute Nectorizing Pancreatitis

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Hi all,

A close relative whom I care for has been in a long haul hospital stay following a acute form of pancreatitis (caused by gallstones), which has now lead to some form of tissue necrosis.

She has a somewhat large collection of fluid around her pancreas and the hospital had a put a drain in to help with healing. She has been recovering well but the drain was upped in size recently as it is taking time to drain. The plan is to let this drain and then in 6-8 weeks look at how to remove gallstones.

Whilst recovering she has however not been eating well - very small portions if anything and feeling nauseous.

She got discharged and ever since then she has not been able to eat because anything she puts in causes her to either feel nauseous or vomit watery green/yellow liquid (which looks like bile).

She had been put on Creon and we found that this caused excessive stomach rumbling, sometimes constant toilet runs or just pure constipation. However one important thing to mention is that we have noticed this causes vomiting. Explained to the doctors and they were not really concerned but took her back in hospital to monitor. Since then we have decided not to give her Creon and see what happens (doctors thought bad idea as can cause diarrhoea). However, she has now had more food and liquid intake, including a main meal and no stomach rumbling, no vomiting however constipationstill remains.

I came across this rather helpful and knowledgeable advice and just wanted to seek some first hand advice and ask:

Is Creon likely to cause this? and what is the consequences of not having Creon but eating a low fat but normal diet? Could this mean she actually doesn't require it?

I am bit worried about this tissue damage - what is the affects of this medium term / long term?

They plan to remove the gallbladder or gallstones after 6-8 weeks is this normal?

Sorry I know I am asking questions more aligned to what a doctor can ask but I am getting mixed to no proper answers and it would certainly be great to get some knowledge / advice from people who have had first hand experience of this

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  • Posted

    Unfortunately we cannot answer your questions because we're not doctors but we can give you information from our own experiences. Creon is used to replace the digestive enzymes the pancreas stops producing. The body needs them in order to digest foods, if she cannot tolerate Creon then maybe she can tolerate a different brand like ZenPep. I was allergic to ZenPep but Creon worked for me. When a person is experiencing a pancreatitis attack, their pancreas is very inflamed and they will not be able to tolerate foods … vomiting, constant nausea is actually normal BUT I would recommend a liquid diet like broth or Ensure for a day or two then start with oatmeal or rice and see if there's any pain after eating or nausea … if there isn't then proceed with food but if there's any pain continue with liquid (you can add jello too). The key is to keep the pancreas hydrated and it'll also help with constipation. Removing the gallbladder is the new normal nowadays. Mine was removed back in 2003, but my CP wasn't diagnosed until 2017, and it was due to the way I was born. I was born with Pancreas Divisium (two pancreatic ducts that never fused together). They should be able to remove the gallstones through an ERCP unless they're removing the gallbladder. The tissue damage isn't something I can really comment on … I don't know if the tissue damage is on the pancreas or just around it but if it's around it then that's better because the body is amazing at healing itself. If the tissue damage is on the pancreas, to my knowledge once the pancreas is damaged, it's damaged but I am not a doctor and only a doctor can advise on that. Don't get me wrong, pancreatitis basically is a damaged pancreas and you can live a long healthy life with pancreatitis. I would suggest you look for a pancreas specialist and they can educate you on what to do. You can learn when to rest your pancreas (that's when you stay on a liquid diet), what foods might trigger an attack, talk to you about diabetes, etc. I also would recommend your family member start eating six smaller meals rather three big ones as it's easier to digest. Substitute applesauce instead of apples and frozen veggies instead of raw (also easier to digest). I also suffer from constipation and have to have a prescription, I never have the opposite bowel movement. Even if I forget my Creon I still am constipated. I also have gastroparesis so I also have to take Reglan in order for my stomach to digest foods in a normal amount of time. Without digestive enzymes or Reglan your family member might not be digesting and/or absorbing what they're eating. However keep in mind, with the fluid build up, the pancreas may be inflamed and making it harder to eat and it might not have anything to do with the supplemental enzymes. The Creon comes from either a cow's or pig's pancreas and it's the same enzymes our body produces. My entire life I was in/out of the hospital but I never knew I had a pancreas condition because my blood never showed it (even to this day). I have undergone every treatment possible but because I have two very narrow ducts, it causes attack after attack. Next Thursday I will have my pancreas removed and my islet cells transplanted to my liver (my liver will produce insulin and act as my pancreas). With technology nowadays you can live a long and healthy life without a pancreas. Keep a positive outlook and positive things will happen. My biggest advise would be stay away from Dr. Google, he's the worst thing for you! I hope your family member feels better soon! Good luck and prayers to you and your family.

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  • Posted

    It is normal to wait to remove the gallbladder. I had this issue. The pancreas must heal before they can remove the Gb, if they dont wait they risk making everything worse. Im not the doctor, but CREON seems premature. I have chronic pancreatitis now (had it for 3 years) and I was JUST put on Creon a few months ago. They may have put her on it to "rest" the pancreas. Supposedly it lets her eat without taxing the pancreas. Creon might make me a bit more gassy, but I've had no adverse effects from it at all.

    THE necrotizing pancreas isnt good, but as the pancreas is essentially digesting itself, it is not unusual. They probably put her on antibiotics. Hopefully it will get better. Im surprised they are letting her eat at all. I was intentionally put on a nothing by mouth diet each time I was hospitalized. Had I NOT improved as I DID, the next step was a feeding tube until my pancreas had healed enough.

    TAKE CARE.

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  • Posted

    Just a heads up when you say low fat but otherwise normal diet??!

    whilst I was waiting for my gb to be removed I was on a NO fat diet and by that I mean no fat, no dairy, no animal fat etc. even bread has fat in it. Make soups that are delicious, full of nutrients likewise smoothies, lots of fresh fruit and some almond milk, I ate porridge for breakfast made with water, added bananas and blueberries etc. If I strayed off this diet I was in trouble, after my gb removal I stuck to this as I had mild pancreatitis which settled, I didn't find the additives given by my dr helped. I had blood tests which showed I was not lacking any vitamins even on my reduced diet.

    very best wishes.

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  • Posted

    Hi All,

    Thank you for all your replies - they have all been really helpful in understanding Pancreatitis better, so I really appreciate this.

    I think it helps to understand an individuals own experiences better as it gives a better flavour of living with it than what a doctor can.

    She has been on a nothing by mouth diet for just over 3 weeks - they've since removed the feed tube she had and she is apparently allowed a low to no fat diet.

    So Creon was stopped as they felt her pancreas was working and it has reduced the nausea feeling. She was digesting food without this (i.e. no diarrhea, 'til today when she had green diarrhea (almost like bile colour). Has anyone experienced this? The doctors now say she needs Creon and started it again. However I did give her a cup of tea made from Lactose Free Milk (which I believe contains Lactase and I think Creon has it too) and I suspect this may have caused it. The doctors are still adamant on Creon but I'm not convinced hence asking for your views?

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