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What was your experience with your pancreatitis diagnosis?

MaddieHU profile image
MaddieHUHealthUnlocked

Hi everyone, I'm interested to know; when were you diagnosed and how long did it take for doctors to diagnose you with pancreatitis? 

What was your experience when you were first diagnosed?

20 Replies
madonbrew profile image
madonbrewPioneer

Hello 😊This could be a slightly long post but here’s my story....

I was a student nurse, aged 19, and realised during my summer placement that I’d had a dodgy tummy for a fortnight. I thought I best book an appointment to see my GP, which was another fortnight later and as it happens, my family booked a last minute holiday abroad as that appointment was coming, so basically I’d had diarrhoea for 8 weeks before seeing my GP 🤦‍♀️ I had lost a stone and half by then.

My GP did bloods and they showed my liver was functioning really badly, but from scans and biopsies, it appeared to look ok. She thought I might have Hep A , but I didn’t, then tested for Hep B, C , D and E. Eventually got referred to a liver specialist but they still couldn’t figure what was going on.

In the November (had started Aug) I got admitted to hospital as an emergency(the intense pain...could hardly walk) and diagnosed with pancreatitis. Whilst in, they found my gallbladder was also chronically inflamed and not functioning at all and my bile ducts blocked, so they put stents in to try open them up.

Then I became a mystery...they couldn’t work out why a young girl who had never drank, with no gall stones, had pancreatitis.The following year they removed my gallbladder and started treating me with steroids...

Whilst this was going on, my consultant travelled to Japan for me to a conference on autoimmune pancreatitis...he said usually an international medical conference is based on a min of 1000 patients, but this was based on 15 of us worldwide. It was basically when they came up with the diagnostic criteria for autoimmune pancreatitis.

The steroids helped reduce the inflammation but messed with my head mentally very severely, so between us chose to discontinue them.

After some more time, they started to figure out this systemic autoimmune IgG4 disease which they decided was the cause for my pancreatitis. It’s also now affected my kidneys and I now am an insulin dependent diabetic.

I am now treated with Rituximab infusions which are seeming to help keep things under control...ish!

Sorry for the mammoth post! That’s my diagnosis story!

If you got this far, thanks for reading!! 😊

Dee

ChronicPancAdmin profile image
ChronicPancAdminAdministrator in reply to madonbrew

Wow, madonbrew! You really have gone through it, and all at such a young age. That must have been a very scary time not knowing what was causing the symptoms.

It's great to hear you had such a dedicated consultant looking out for you, and you've now managing to get your symptoms mostly under control. Despite being such a unique case, I hope you're able to connect with others through this community to share support and your years of experience. We are so pleased you are here! 😊

madonbrew profile image
madonbrewPioneer in reply to ChronicPancAdmin

Thank you EPI 😊It feels like such a long time ago that it all began! It’s chronic so you get used to it after all this time! I had a recent CT scan and they said it looks like my pancreas is basically burnt out. Amazingly, at the moment, I don’t take creon ... not sure how that’s works but I seem to be ok on that front. And because my pancreas is basically burnt out, I don’t generally get the pain these days.

The diabetes is tricky sometimes because I can eat exactly the same thing on two different days and one day my glucose level is fine and another time it will be really high or low. It doesn’t seem to make any sense! Not sure my diabetes consultant can quite figure the extremities either but we muddle on through together 😊

I hope this forum grows soon. I really find these forums so helpful in supporting each other through our journeys, with the understanding that we just ‘get it.’

Dee

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

My husband has the same troubles with diabetes. Sometimes there seems to be no rhyme or reason to the levels that he gets 😕

madonbrew profile image
madonbrewPioneer in reply to LeopardGecko

It’s very strange isn’t it! My consultant says that basically my pancreas is without function these days, but maybe every now and then it squeezes out a little bit of insulin which is why my glucose levels are so unpredictable? To be honest, I’m not sure either of my consultants quite know 🤷‍♀️ Is your husband on insulin?

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

Yes he is on insulin. The amount of support regarding his diabetes was non-existent so we feel like we've been fumbling around a bit but he has gradually gained a bit more confidence and a few tips here and there and is a lot happier than he was a couple of months ago.

My husband's diagnosis of pancreatitis came after he was rushed to hospital with stomach pains, a distended stomach and breathing difficulties (due to how much fluid he had in his abdomen squashing his lungs). He was promptly put into a coma and intubated for almost 3 weeks and then spent a further 2 months on a ventilator.

He had to have several drains to remove fluid and also a specialist procedure at King's College Hospital.

We had no awareness of pancreatitis and when he was told he had gall stones 2 years ago, we never knew that this could be a result.

It has definitely been a steep learning curve for us both and we are now getting used to his diabetes and need for enzymes before eating.

madonbrew profile image
madonbrewPioneer in reply to LeopardGecko

Goodness me, that’s a huge experience for you both to have been through! Must have felt really frightening for both of you, differently! Him going through it and you having to look on.

How are you both doing now?

I’m not sure how I manage this...maybe in reality I still need them, but somehow I seem to get away without the enzymes, they just haven’t mentioned them recently. I used to have to take creon with every meal, but to be honest, wasn’t great at taking it. I’ll ask him again about it next time.

I don’t know anyone else with pancreatitis so it’s nice to connect with some others who understand!

Take care , Dee 😊

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

It was really scary. He had a few close calls (sepsis and Covid while in hospital) so we are very pleased to have him home now! He has made a really good recovery from not being able to walk in December to getting out for walks now without crutches. I've been off sick from work with anxiety and PTSD but hoping to get back in a few weeks time.

They tried my husband on Creon but it didn't agree with him so he is taking an alternative called Nutrizym-22. He has to take 8 tablets before eating - I feel so sorry for him. Hopefully you can continue to cope without Creon.

It is definitely nice to hear other experiences. We are still learning about it all so it should all be really helpful 🙂

madonbrew profile image
madonbrewPioneer in reply to LeopardGecko

That’s terrible 😢 not having support for diabetes! As if you haven’t already got enough to deal with and trying to figure that out! Maybe his GP or consultant could refer him to a diabetes specialist when he’s feeling up to it?

Actually, it’s been similar...I’ve bumbled along with them diagnosing diabetes years ago but no one doing anything until last year when I finally got referred to my lovely diabetes consultant who’s been really helpful!

It sounds like he’s doing well after all he’s been though. It’s a lot to recover from when you’ve been so poorly!

I’m not surprised that you are suffering from PTSD and anxiety! Seeing family members so poorly and walking the road of recovery alongside them is tough! You are amazing! Please be kind to yourself too! You’ve been though so much too!

Thank you for chatting!

Dee 😊

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

Thank you for your kind words.

He has no idea who his consultant is. I think that's something we need to find out. He has been in touch with a diabetic team who were part of the 'rapid response' team when he came home from hospital.

madonbrew profile image
madonbrewPioneer in reply to LeopardGecko

Hi, I have just been thinking about you and your husband and wondering how you have been doing these past few weeks? I hope the rapid response team have been helpful and that you are getting some support !

Dee x

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

Hi, he actually had an appointment with a diabetic nurse last week. He was with her for over an hour discussing lots of things. She told him that he may be eligible for one of those monitors so he could avoid all the finger pricking which would be great! She also explained about making adjustments to his insulin depending on what he was eating so it was really helpful. I'm not sure how frequently he will meet with her but he is definitely feeling a lot more knowledgeable and in control 🙂

I have started phased return back to work which has been going well so far so I feel like we are starting to find some sort of normality again.

How are you doing?

madonbrew profile image
madonbrewPioneer in reply to LeopardGecko

Sorry for my delayed reply. I’m really glad he had seen someone regarding the diabetes. It sounds like it was a useful appointment and that the nurse gave some helpful information. That’s interesting because I was wondering the other day if I possibly meet the criteria for one of those monitors too?! Will have to ask next time I speak to my consultant.

I hope work is still going well and things are gradually improving.

I’m doing ok thanks ... I was having problems with my asthma but it seems to be improving now...what’s always problematic is when I end up on prednisolone it makes my glucose levels go crazy 😢 Makes the diabetes a bit more tricky to manage but it’s starting to calm down again now.

Have a good week! Enjoy your bank holiday Monday!

Dee 🌺

LeopardGecko profile image
LeopardGeckoPioneer in reply to madonbrew

No need to apologise Dee.

I'm not sure what the eligibility criteria is. He has had to do a sort of course about the product to get a certificate and is now waiting for the diabetic team to get back to him. It is definitely worth asking for yourself.

My work is going OK. Will be back to my normal hours next week so almost reaching some sort of normality after everything.

Sorry to hear that your asthma hasn't been good. It must make you more anxious knowing that the medication will have a negative effect on your diabetes. My husband has found that being a bit under the weather affects it. It is such a hard thing to try to keep on top of at times.

I hope you have an enjoyable Bank Holiday Monday.

Sarah

I have had epilepsy since the age of 14, but started drinking age 16 never really a heavy drinker usually about 5 pints a week, never spirits, a social drinker, nothing more, but eventually with the various medications over the years, about 2013, I noticed I could never keep the pints down, I would be sick after 2 pints of Guinness, so I stopped drinking altogether. Then in September 2018, I started bringing up blood, taken to hospital for a week, then recovered, it happened completely out of the blue, I had not drunk any alcohol for five years, but my bladder now means I pass more urine. I was diagnosed with diabetes 2 in March 2020, and am on Metformin 1000 a day. Even at the age of 16 I knew it was a bad idea to drink with pills that is why I NEVER touched spirits of any type, I am aged 64, but I guess that is my lot? I have quite a catalogue of medical conditions, but taking Vimpat and Briviact for the epilepsy, Metformin for the diabetes 2, and Lisinopril for high blood pressure are my current medications. I get my blood tested every year now that is how the diabetes 2 came up, I have drastically altered my diet, although lack of exercise through isolation means my weight could still be reduced? I have had gall stones and kidney stones over my life, but also have Schwannamatosis or NF3 just to bring into the equation!

madonbrew profile image
madonbrewPioneer in reply to Adlon57

You certainly have a lot to contend with! Well done for not drinking the past 5 years. I got sick aged 19 with my pancreatitis and my consultant said definitely don’t drink. At that age I never had so I was fortunate in some ways. It sounds like you’ve made some really good and positive changes! Lockdown hasn’t been helpful at all for eating patterns and weight so don’t beat yourself up over that!

Adlon57 profile image
Adlon57 in reply to madonbrew

In truth being a social drinker, my social "crowd" melted away, no transport, no money, and those early warnings, after drinking two pints, then bringing up, I knew there was something wrong, but I had thought it was a reaction from one of my many medications, or medical conditions, I never asked my doctor about it, I should have, I know that now! In reality my health has been pretty lousy in the last five years, my epilepsy ruled my medical woes until April 2018, but financial woe and isolation have been prevalent since then! My pension in 13 months definitely something to look forward to now, hopefully!👍👍

Strange like I said always a social drinker, just went to meet people I knew, never addicted to alcohol whatsoever, have seen my brother in law, and later boyfriend die because of the effects of alcohol, even best friend a reformed alcoholic but me take or leave it! My body is such a mess anyway, such a rich tapestry of medical conditions, not many years left on my clock now, essentially I suppose the pancreatitis was also affected by them as well just a wee dig from this thing called my cadaver?

Hello. I’ve lived with pancreatitis all of my life. As a child I was in and out of hospital with extreme tummy pain. The pain would last about two weeks, I would not eat, it would slowly get better. The Doctors told my parents that it was psychosomatic as their marriage was awful. I was traumatised along the way by various awful tests, including being pinned down at 8 years old to have a rectal test for appendicitis. I went to university and had episodes that made me return home. I was told it was dyspepsia. I nearly didn’t complete my degree due to absence (to be honest, I didn’t go to school that much either and got used to reading/studying on my own to distract from the pain).

I became a teacher at 21 and at 24 collapsed at work with agonising stomach pain. I was rushed to hospital and a plain abdominal X-ray showed a ‘mass’ in my stomach. I was told I had liver cancer! A few week later I was told this was incorrect - can you imagine? I was told that my pancreas had calcified and that there was nothing they could do. I was told to stop drinking!!!! I explained I did not drink and was not believed. This was 1993 and pancreatitis was only perceived in terms of alcoholism.

My attacks continued and my GP sought help for me from a specialist. I went for tests. The specialist couldn’t explain why I had pancreatitis, but said he could make me feel better and save the function part (islets of langahan). I had a ERCP (sedative didn’t work and was fully conscious - awful) and then a very long operation to allow my pancreas, which was full of ‘slurry’ to drain into my jejunum - a longitudinal pancreatico jejunostomy. It was a long recovery, but I’m still here!

My attacks became less frequent until 208-10 and it was found that my gallbladder was affecting my pancreas and removed.

Since 2010 (touch wood) I have had few attacks. However, I have taken selenium ACE and creon since 1995. The Vitamins to help me mop up free radicals and the cream because I don’t produce pancreatic any more (endocrine insufficiency due to chronic pancreatitis). My amylase levels no longer rise during an attack, as my pancreas is calcified.

In 2007 (ish) I learned that I had a genetic mutation and was told I had CFTR - my consultant said I ‘nearly have enough pints for an atypical cystic fulibrisis diagnosis’! I have also had episodes since my 20s of chest infections (including pneumonia , UTIs. And eczema and asthma since childhood). In 2017 I was diagnosed celiac and all my underlying tummy pain subsided on a gluten free diet. I thought everyone had this pain! This year I’ve been diagnosed with autoimmune hypothyroidism.

I’m only just reading about autoimmune pancreatitis and am wondering if this is me. It’s been such a journey of misunderstanding from the medical profession and guessing that my trust has gone. The extreme pain is managed now as most of my pancreas has calcified. Im not diabetic (yet). I don’t drink, smoke and eat a low fat vegetarian with fish diet. I walk 10000 traps a day and keep my mind busy (I work full time). I manage my condition (s), they don’t manage me!

Good luck everyone!

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