I’m new in this forum, but thought many of you must have tried to deal with this for a long time, so your advice would be gold-dust to me at this stage .
I have a number of chronic health problems, Sjögrens, neurological issues, IBS,gastritis etc. I got appendicitis in 2019, which wasn’t dealt with quickly enough and it abcessed. I ended up having a second op for removal some months after the onset. Post op I was told , I was at risk of bowel blockages and my digestive system chronically affected.
Fast forward to about 12 months ago and bowel problems and greater sensitivity to food started. In mid November I got sent to hospital with a suspected bowel blockages, which thankfully was ruled out, but I had to limit my diet more to cope . By October the gp , thinking it was bowel related referred me to a lower GI consultant, all tests were negative including ultrasound scans of pancreas/ gallbladder.
In December I was referred to a dietician who discussed the diet I had put myself on to cope and symptoms . She decided i urgently needed a pancreatic function test. I had it done a couple of weeks back.
the gp who ordered the test assumed it would be negative and told me that as most my pain is on my right side in the upper GI area/ lower bowel nowhere near the pancreas, the test was simply to rule it out.I have lost 7 kilos since the end of November.
This week I was told the result was abnormal and an appointment booked for next Monday to discuss with the gp. 5 days ago the pain started to get worse, so saw an gp to help me cope with symptoms,and then got told the faecal elastase result is level 1 , severe pancreatic insufficiency. The level is 87.5 .
I am still in shock, and have a few questions before I see the gp for a more detailed follow up . I will need to be referred to a gastroenterologist apparently.
I’ve been put on Creons, initial dose 2 per meal. Is this a low dose? How high can you go? How quickly do they start working?
All my upper GI pain is in the location of my gallbladder, with pain in my back directly behind . I’ve had 2 episodes of spasmodic intense chest pain on that side, which was so bad, I contemplated going to hospital. The pain subsided after about 30 mins each time. Could I have an undiagnosed gallbladder problem which has led to pancreatitis or is from your experience, related to the run of pancreatitis.
what questions should I be asking the gp at this stage when I see him on Monday?
I feel for all of you who have been coping with this debilitating illness for a long time, and value any info you can give me from your journey through this.
Many thanks
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25clai
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First thing, first - at least you now have a diagnosis and can now do all that's needed to manage this latest addition to your "list"!
You are obviously a very bright lady and are used to managing worse things than this so the diagnosis is a good thing that should help you improve your quality of life.
If you have a Facebook account I suggest you join the Pancreatitis UK group and the Type 3C diabetes Group.
(Type 3c diabetes is another potential complication for those of us with bad EPI/very little pancreatic function). It too is manageable, it's just good to be aware of it). You will need to get your HbA1c sugar levels tested periodically to monitor this.
CP is not common and therefore you will be very lucky to find medics who are trained and experienced in it. Be prepared for shockingly bad/ignorant treatment in hospitals, especially the smaller/less specialist ones, I'm afraid. This can apply to all areas of the health service though, including GPs, so it's great if you've got a good one.
Some of the negative prejudice you may encounter is because a percentage of people with CP have it as a result of alcohol abuse and their addictive nature makes it seem like they are trying to get strong painkillers (morphine, etc) to feed their addictions and the medics can be less sympathetic if your condition is self-inflicted. Obviously with us it's not, but if they have had a bad experience with one that is, it can dampen their sympathy for us.
It doesn't help that for a reason unbeknown to me, most pain from CP is translocated - mine manifests mostly in my left shoulder and can cause gnawing pain down to my elbow, or as a stabbing pain in my lung next to the left side of my heart! Thankfully I have heart arrhythmias on my "list" so I know it's nothing to do with that and my heart is healthy, even if does have some paddy-fits. I'm sure it's to do with something (inflammation?) upsetting the vagus nerve and getting "feedback" from other nerves in your CNS. You'll probably be more aware of this sort of thing than I am.
The best thing is you will (should) be given PERT = Pancreatic Enzyme Replacement Therapy. These are capsules of enzymes that you take with all your food.
The usual one is Creon 25,000. Be aware that sometimes the UK runs out. Yes, really! Try to build up a bit of stock as a safety margin, but if it happens, you can hopefully get a script for either Creon 10,000s (small capsules that you will need 2 and a half times as many of to make up to whatever you would normally need of the 25,000s), or you might be able to get Nutrizym 22,000s instead. These are more expensive so not the first ones available.
It's a bit of trial and error to work out what dose you will need. Too many is likely to make your tail pipe sore and too few means you won't digest your food. If you're lucky you might be able to get "normal" stools with the right balance! 🤞
This will help with digestion, and therefore nutrient absorption, and if you're lucky it will stop your pancreas trying to work hard and therefore ease some of the pain. PERT isn't a cure (sadly there isn't one) but it can help massively. I hope you are one of the people who is tolerant of it - a very few don't get on as well as most of us.
My last fecal elastase test came back at 33 and I need PERT with everything, including fruit juices, even if I should get away with them in theory. I don't have milk (my pancreas doesn't produce lactase either) but be aware of this if you have it in drinks. I do have cheese for calcium and other minerals and vitamins, so take lactase tablets along with the Creon. One word of caution - don't eat or drink hot things as it can impare the effect of the enzymes.
The main consequencial problems of CP you are likely to encounter are SIBO (Small Intestinal Bacterial Overgrowth) and vitamin and mineral deficiencies. The best information on these is available as webinars from Skye's excellent "Mission Cure" posts on here, but there's useful stuff elsewhere online too.
Getting the right balance of nutrients, especially vitamins and minerals, makes such a difference to our bodies, that it's worth learning about them and doing whatever you can to get everything right. Expect to need vitamin and mineral supplements. If you can get your gut microbiome working well it will help you in lots of ways, including clearer thinking and better immune system and can help dampen down the autoimmune flares. Probiotics are recommended by my specialist team.
The worst things are the acute flares like you've just had. If they are bad, you will be in a bad way, unfortunately. However these are usually manageable too and if you suspect one is coming on avoid all food (and ideally even the thought of it as this is enough to trigger your pancreas into thinking it ought to produce enzymes) and drink as much clear fluid as possible to flush your system. The standard advice is nothing but clear fluids (I mostly have sugar free squash) for 48 hours and to try to drink 4 litres/day. It sounds fairly horrendous but actually is OK when you do it: the clear liquid stops you feeling hungry. Peppermint and ginger teas are recommended and can be part of your clear fluids.
I've been having a semi acute attack since the beginning of October and I find that I just have to be careful about eating. Some days are better than others. My pancreas prefers going as many hours as possible without food and then it lets me eat again. I generally feel much better if I don't eat so I don't mind, but obviously do get hungry in the end.
I try not to use painkillers or NSAIDs normally so they are more effective when I do need them, but if my cranky panky is grumpy I can find that ibuprofen will let me eat a bit and I think its anti-iflammatory properties help. The downside is I have to be good enough to eat to take it to protect my stomach, obviously.
Another thing you might find good is lying on your right side - this can help to drain it.
I'm sure there's more, but I hope this helps for a start.
Hopefully if you can get a good supply of PERT and learn how to balance everything, it may well help with your other GI tract issues.
My goodness do you have my sympathy and I wish you all the best!
thank you so much for your long reply and taking the time to fill me in. You have had a really rough time with it, but it’s good to know you have managed to find ways of coping with the symptoms and pain.
You are right, I’ve had to scrape myself together from some grim health problems and some of these are chronic. You mention that the medical community tend to have limited knowledge of this and therefore response can be unsupportive etc. I wondered why the gp I saw in the emergency clinic took so long to find out about the drugs I need to take etc. She is very experienced and works in a and E at a local hospital too.
She has put me on Creons, so it is really helpful to hear that the dose can go up or down depending on how I am dealing with it. I may have been lucky with the pharmacy, as I went round and they had them on the spot. I hope that continues to be the case.
Unfortunately, I know exactly what you mean about lack of empathy/ knowledge / prejudice in the medical profession. Most doctors think that Sjögrens just means dryness in the body. In my case , it took at least 7 years to diagnose and crashed my kidney function. The only time they started to pay attention was when I started to pass out constantly. Thankfully drugs have balanced it all out.
With regard to diet, the dietician I saw told me to improve gut microbes. I am unable to tolerate any probiotics I’ve taken in pill form and haven’t been able to take the multivitamin I usually take for at least 3 months now, my system is in a mess, it was even before pancreatic function decided to crash.
I’ve now gone onto kefir to help me, which my gp pushed me to try. It’s pleasant, so I’m not complaining. Do you ever get back to enjoying creamy things / fatty stuff or is that a big no no ? The other problem I have is that I was on the slimmer side of life before this, so I’ve been told i need to put weight on. Been told to eat little and often , which for me much like you doesn’t work at all. I’ve been telling dietician/ gp that I am best when not eating at all, so tend to go for bigger gaps, much like you.
This probably sounds like an odd question given the state I am in, but do you ever get back to drinking alcohol? I am not a big drinker and have had long periods when I can’t drink . However, I work in sales for a brewery, so it’s pretty vital I know my products. So far , I’ve managed to stay clear, but it’s not practical going forward, as I have to do client tastings and really know what I’m talking about.
Overall though, this will be another condition to add to the list. I will just have to work out how to cope with it. I am very lucky with the gp I have who got to know me when trying to get a diagnosis for Sjögrens. He sent me for a second opinion after a rheumatologist told me all my problems would resolve if I took time to relax and took up yoga. Thankfully the second rheumatologist diagnosed me and I am lucky to still have her helping me some 9 years down the line. I am sure both will help me.
I will join the Facebook group , as this will help me understand more about it and hearing from others makes the path forward easier to cope with. I am so grateful you have taken the time to fill me in.
One thing autoimmune conditions give us is a sense of things for others - like empathy but with something extra too.
Sjögrens is just dreadful and I'm glad to hear you are managing it acceptably.
I spent 10 years milking cows (lactose intolerant) and gave that up for 10 years growing vines, and making and selling the wine! So I know your quandary and the industry. I loathe spittoons but they are an option.
My liver packed up when I was 18 and my heart doesn't like alcohol so I haven't really drunk much. If I do I tend to pass out so I just used to do what I had to for the tastings. Apparently I've got a good palate (I've beaten MWs in wine/flavour tasting competitions! 😃) but I do 99% of it (other than plain sugar levels) on the "nose" - volatiles and aromatics, rather than taste, per se.
It's possible with beer but harder, because the level of hop (bitterness) is much more a tongue stimulant, like the sugar levels, isn't it. Tiny, tiny amounts?
It only needs to be a molecule or two thick across your taste buds to be able to tell so you should get away with it.
That said, if mine's bad it throws its toys at just the smell, never mind the alcohol!
I know what you mean about probiotics. I bought a tub of 30 in November and still have several left. I do try to take them. If your guts won't cope with them it might be you have SIBO already (quite likely). I think I've probably got a build up of bad bugs again too. 🙁
You'll know all about that with your brewing industry knowledge (I have a little knowledge from dealing with a couple micro breweries).
The antibiotics for SIBO are doxycycline, metronidazole and rifaximin. You normally need more than the Drs will give you to fix the problem so you might need to ask for them more often than you actually take them so you can get a therapeutic level together for when you need them.
Must get to work now! Take care of yourself! (Like you do, like no other is going to!!).
I'm glad you joined us here. There are some lovely knowledge people who will give you careful advice on dealing with this horrible condition. You've had some good advice already so I'm pleased for you. The Creon dose is really trial and error. I try to stick to unsaturated fat but if I eat more fatty things I take an extra 25000 capsule. Also if I'm out for celebration type meals with friends and family that have several courses it's always wise to take extra Creon to accommodate the extra food and fat. The people who produce the Creon enzymes have a website that can give you information about it too. Good luck with your diet and any treatments you might need. I find mango and mango juice (Rubicon brand is great!) really soothing for the gastritis and reading up on and avoiding acidic food and drinks keeps it under control. The pancreatic specialist dietician also told me to only drink decaf tea and coffee and natural yogurt is also very soothing. Good luck with all your appointments and hope you'll be feeling much better soon.
Thank you very much for your input. There’s some good advice to take from you. I have been working out what works for my diet through this, without knowing my diagnosis. I stick to non saturated fat mostly or very little, but best avoided. I have to have a pretty liquid diet, bland etc. I can’t eat solid pieces of meat or insoluble fibre. Doesn’t really leave a lot of choice, but the idea of mango juice really appeals and I have found low fat yogurt helps, plus kefir.
Interesting to know the dose ofcreons can go up or down. I think I’ve been put on a low dose to start with, so this will need to be reviewed. It sounds like you are able to still be sociable around food and keep symptoms at bay. Something for me to aim at! Thank you for your help
I can’t add much to the advice you’ve been given already. I live in the US, and the ignorance and stigma about CP is the same in the medical community. My pain is located in the same area as yours. I eliminated most fat and all dairy from my diet. I try not to go above 20 fat grams per day.
did you have any problems with your gallbladder is it all to do with the pancreas? It was by chance I got tested, due to the dietician having suspected it , but if it was down to my gp he would have missed it, as he told me all the symptoms should be on the left side of the body. It is interesting to hear you have the same location as me
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pain... not yet diagnosed.
neck shoulder and low rear rib pain and discomfort 
Introduction - necrotising pancreatitis
