Response!

[Jackie1947]

What I've noticed is there are 6 posts with not one comment. It's a strange support group. I can't as I no treatment for chronic pancreatitis including no enzymes. As previously mentioned I'm intolerant to pork products. I'm just going to put a ❤️ come on folk surely some can help?

[AnnieJ123]

Dear Jackie, I wish I could help you more. All I can offer is sympathy I understand and share your frustration. I too have RA and suffer from bowel problems that were mainly lower GI, for decades . Tests inconclusive and given a label of SIBO , IBS, d, or c with insufficient testing. This was 10 years ago.Then I had upper GI problems 10 years ago. A small gall stone identified, pain on the pancrease side, but nothing shown on ultrasound. I was told to leave it. I now have a large gall stone .I have been on the waiting list for surgery for 10 months. 5 weeks ago I had an attack of chronic cholecystitis and went to A &E. I have never experienced such a bad infection or felt so ill. I was hospitalised and treated with fluids and intravenous antibiotics for days. I had further scans 3 weeks ago , and awaiting results of an MRCP. They said results will take 4 weeks. I think I might also have pancreatitis from my symptoms and I tick all the boxes for it. I am now on the list for GB surgery when the infection clears. Having untreated bowel problems for so long might have caused pancreatitis for you and possibly me. It seems to me that diagnosis, treatment, and support for this horrendous illness is very limited. With RA there is medical support and lots of sharing of experiences on the RA website. What you need is an enzyme product that works that is not pork based. I hope someone can give you a link for this, or the name of a research group where they are looking into it. Good luck.

[Jackie1947 in reply to AnnieJ123]

Oh no I'm okay thanks and RA side it's brilliant. It's just generally people raise a question or just want to feel they are not alone that not that many people respond to even with a few kind words. There are no alternative to pork based enzymes. You can buy so called enzymes from a health store. There is no data to prove they work and the dosage is low. Waste of money. I'm seeing the Gastroenterologist tomorrow.

[DENZ01]

Hello Jackie

I will first of all apologies, I did see your original post & I did not reply.

I was diagnosed with acute chronic pancreatitis two years ago (much to my surprise) it was a bit of a "bad time", I was in hospital for six weeks before they let finally made the diagnosis! Every single day I was accused of being an alcoholic 🙄 I have never drunk alcohol in my life (just a personal choice as I have other medical issues 🙄).

I really don't have much constructive advice for you! (One of the reasons I didn't initially reply). I was referred to a dietitian, but I can't say that was much use 🤦

Then a couple of months later I was diagnosed with Achalasia 3 (stomach disease).

Then in December 2023 I was diagnosed with a problem with my heart.

BUT! in the meantime I had seen an endocrinologist who told me that because my cholesterol levels are very high, that is why I have the acute chronic pancreatitis. Nobody else had bothered to tell me this 🤷, my cholesterol is familial, I can't take statins.

I'm really sorry that I have gone on a bit here, with no actual advice for you. I don't mean to sound patronising but have you had your cholesterol checked? Maybe, if you haven't, then try having it checked. I'm sure that you'll have noticed that fatty/oily foods can cause a flare up with your pancreas.

I'm not saying that is going to be a cure, but unfortunately I have found that it's just been a case of eating very bland foods.

I see the cardiologist this week (lucky me!) I will ask him about the cholesterol & pancreatitis (although I'm actually seeing him about my heart not working properly on one side).

So, I'm very sorry for not replying yesterday but as you can see I have rambled on with not very much information for you!

If I do find something that may be useful for you, I will let you know 😊

I hope that you get some help with the pancreatitis, it's really painful when it flares up.

Best wishes ❤️ x

[Jackie1947 in reply to DENZ01]

Thank you. I was not specially referring to me but generally when people don't get any acknowledgement to their post. Be it advice or just a hello. You certainly have a lot to cope with and wish you good luck for your next appointment. I had a CT plus other tests for bowel problems and up popped calcified pancreatitis. To say I was shocked was an understatement and all I could think about was I've lost two people that had pancreatic cancer. It still pops up into my mind. I don't drink alcohol and even before diagnosis I drank very little as to be honest not fond of alcohol. Divicular disease was also diagnosed and that hurts. To my knowledge I've never had a flare up of pancreatitis and don't know the symptoms. Seeing the Gastro Dr today. Deep joy. My cholesterol levels are normal but Rheumatoid arthritis could have caused the other problems as being an autoimmune disease the brighter attacks anything it fancies. Onwards and upwards. Take care

[DENZ01 in reply to Jackie1947]

Good luck with your gastro appointment today. I hope that you get some answers. Please let us know how you get on (if you want to that is)Onwards & upwards 🙌

[Jesus5]

Hello Jackie 1947. It is not lack of empathia. All of us has their own problems, sometimes on level that man have no will to replay, or even is not able to do it. I know for your problems / allergy on pork! /. and i think i ve answered few times. Maybe you should icorporate coconut oil and moringa powder in your diet. You have all informations on net. Coconut oil don't need pancreatic enzymes, it is medium chain triglicerides and 60% lauric acid. There is myths that it will raise your cholesterol but it will not. Search for dr. Bruce Fife video about coconut oil. Moringa is full of vitamins and minerals, it is powder, so you can easy mix it with your smoothie for ex. Vital 1.5kcal can help too, those are peptides, partialy digested food. And lot of fruits with natural enzymes and fats / avocado, Bitter melon, papaya etc.. / Best wishies..