Introduce yourself!

[SaskiaHU]

Why not leave a short comment below and introduce yourselves. Give as much or as little information as you like. Feel free to ask your own questions here: healthunlocked.com/pancreat...

[madonbrew Pioneer]

Hi, I’m Dee 😊

I was excited to read about a pancreatitis forum as I don’t know anyone else with it! I’m on other forums and they are really supportive so it will be good to get to know some fellow dodgy pancreas people!

I have a rare autoimmune disease called IgG4 RD that has caused autoimmune chronic pancreatitis which I’ve now had for 23 years (I’m 42 now) and in turn has lead to diabetes...insulin dependent...again my own IgG4 type, but basically like Type 1. I also have chronic kidney disease (also IgG4) and severe asthma...which they don’t think is IgG4 RD.

In my spare time I enjoy playing the piano..badly, doing arty crafty stuff and getting out in the garden 🪴...now the weather is warming up! I love travelling too...well did before Covid! Alaska has been my favourite so far! ...just to encourage you that it’s possible to still do things you enjoy despite pancreatitis and other health challenges!

Well enjoy the sunshine ☀️ and I look forward to hearing from you soon!

Dee 😊

[ChronicPancAdmin Administrator in reply to madonbrew]

Hi madonbrew ,

Welcome to the community, we are so pleased you are here! You are one of the first people to join this new community, so you've earned a pioneer badge as a pioneering member of this space.

It's great to read your story, sounds like you have a lot on your plate! But I love your positivity. Alaska sounds amazing!

Looking forward to hearing more about your experiences Thanks again for joining us!

[LeopardGecko Pioneer]

Hi, my husband was rushed into hospital with stomach pains and breathing difficulties in August 2020. The next day he was put into a coma so that he could be ventilated. I was told that he had acute necrotising pancreatitis - something that I had never heard of before.

Luckily, after a long hospital stay, he made it home but now has type 3c diabetes and lots of enzyme tablets to take before eating.

I still don't feel that I understand pancreatitis as much as I would like so am hoping to learn from this group but would also like to support others as much as possible.

[madonbrew Pioneer in reply to LeopardGecko]

Hello 😊We chatted a little on the other post but I thought I’d say hello here as a few others have found their way here too!

Hope you’ve both had a good couple of days without too much pancreas hassle! ...or any others actually!!! 😊

I had an endoscopy on Tuesday as I’ve not been feeling so great since the beginning of December. I’ve been getting abdominal pain under my left breast bone, sometimes radiating to my back, bad nausea and have lost 2 stone. My consultant thought it might be my pancreatitis playing up but a CT scan suggested not. My endoscopy had shown widespread candida in my oesophagus which she thinks could possibly be the cause of my symptoms? Now I’m worried it’s the diabetes that’s caused the thrush although there are multiple things that make me susceptible 🤦‍♀️ It’s seeming odd that thrush could cause so many issues!

Take care, Dee 😊

[LeopardGecko Pioneer in reply to madonbrew]

Sorry to hear that you haven't been feeling well. It is amazing how what we see as a tiny thing, can cause so many issues! Hope you get it sorted out soon.

[madonbrew Pioneer in reply to LeopardGecko]

Thank you 😊 Yes, Isn’t it interesting how something we think so small can cause us so much trouble. Hopefully the course of anti fungal meds will sort it! I can’t quite get my head around that it’s this causing all my pain?!

Anyway, you and your husband have a good day!

Is he treated with steroids?

Dee 🌺🌸🌺

[LeopardGecko Pioneer in reply to madonbrew]

No, he doesn't have steroids. Most of his pancreas has died so I think pancreatitis is no longer an option for him. Just the results of a serious case of it to deal with now.

[madonbrew Pioneer in reply to LeopardGecko]

That sounds quite similar to where I am now. My consultant said that because most of my pancreas has died, I probably won’t get pain much these days, which I don’t really anymore, so hopefully that will be the silver lining for your husband too.

[splodgybum64 Pioneer]

Hi allGood to meet you all. When I’m not busy working for local government I love to spend my free time walking, gardening and in the good old days (pre-COVID) entertaining friends.

I had my gallbladder removed 2 years ago due to repeated attacks of Pancreatitis. I thought that my troubles would all be behind me but just before Christmas last year I started to have pains that resembled biliary colic attack.

After being rushed into hospital, a CT scan, ultrasound, MRI and a Colonoscopy later, they have found nothing conclusive. I’ve had repeated attacks, some lasting around an hour, resulting in fainting from the pain or writhing on the floor seeking some refuge. Not had an attack all month and then tonight had another one immediately after eating dinner. Just when I think I’m over it and then whoosh another one comes along.

I don’t really know if this is normal. The consultant at the hospital just said that sometimes this happens and there is nothing I can do to prevent it but it will probably settle down. I didn’t really question his prognosis too much, as at the time I was so ill and just wanted to get better and be discharged in time for Christmas.

Does anyone else have similar experiences?

Sorry to offload on my first post but it’s so good to ‘speak’ to folks that might understand the spontaneity and level of pain.

I keep to a low-fat diet, don’t really drink and exercise daily- not sure what more I can do to self help and would really welcome ideas and suggestions that you may have found helps.

Well that’s me in a nutshell. Have a great week one and all.

Sandra 😃

[LeopardGecko Pioneer in reply to splodgybum64]

I don't really know much about pancreatitis. Just wondering if you are on enzyme tablets which help digestion e.g. Creon? I know when my husband ran out of his, he had really bad stomach pains and sickness.

[splodgybum64 Pioneer in reply to LeopardGecko]

Thanks for the reply LeopardGecko. I don’t currently take anything but I have a telephone consultation with my consultant so definitely something I can ask about. 😀

[LeopardGecko Pioneer in reply to splodgybum64]

I hope you manage to get some answers 🙂

[madonbrew Pioneer in reply to LeopardGecko]

Oh bless him. That sounds awful! I remember the pain but I don’t think I had the sickness when I didn’t take them...but I can quite imagine one could feel pretty rough without them.

[madonbrew Pioneer in reply to splodgybum64]

Hi splodgybum...that’s a fantastic user name 😂

Goodness, it sounds like you’ve been having a traumatic time recently 😢

Sorry you’re having these continual attacks. I remember getting these attacks that could last anything in between half hour to days. I usually knew if it didn’t subside after 4 hours, I’d end up in hospital. Sitting up helped slightly to relieve the pain...lying down definitely not! Are you being treated with steroids or anything?

I also had my gallbladder out..in my early 20s - I’m 42 now. I found fatty foods definitely didn’t help the pain, nor the steathorrhea...dunno how to spell that! My consultant told me definitely not to drink alcohol. I never had at that age but he said it really won’t be good for my pancreas.

I think little and often portions have helped me and like you say, trying to keep them low fat. I used to enjoy a KFC every now and then but that is my worst trigger now..😅

I look forward to getting to know you guys on here more!

Dee 😊

[grannywantssteak in reply to madonbrew]

Yes, small servings, high protein and low fat really helps!

[BeVanTwirlin Pioneer]

Hi, I'm Becky

So glad to see this support group. Was diagnosed with Chronic Pancreatitis back in 2012. Looking forward to getting to know others who also have Chronic Pancreatitis.

I have been married for 5 years now. I got married when I was 46 (later in life) but he was ell worth the wait.. We enjoy traveling, camping, gardening, and antiquing. I also enjoy photography and play guitar when I get time.

Looking forward to getting to know you!

Becky

[madonbrew Pioneer in reply to BeVanTwirlin]

Hi Becky 😊

I’m Dee. I’m really glad to have this forum too! I’m 42 and have got a rare autoimmune disease that’s caused my chronic pancreatitis...since I was 19, my own type of diabetes, and chronic kidney disease. I also have severe asthma but that’s not caused by my random IgG4 disease!

I don’t know anyone else with pancreatitis so it’s nice to be able to get to know some others who understand.

I also love travelling!! Alaska has been my favourite I think! I have a little Bedford Bambi campervan which I absolutely love!💕

I look forward to getting to know you and the others here too!

Dee 😊

[grannywantssteak]

I'm new here too and glad to meet you all!! I started having major stomach problems in 2010 due to a stressful situation and finally went to a Dr. in 2011. I didn't have insurance at the time, so he did the best he could and we tried to deal with it as an acid problem. Numerous medications that worked for a while but then didn't. I lost 75 pounds in less than 6 months but managed to get by. When I turned 65, I was able to get insurance and then began a journey of every test known to man, multiple diagnosis, bags of meds, and three colonoscopies in 12 months. At this point it seems that I have Diverticulitis, IBS-M and Chronic Pancreatitis. I take huge doses of Zenpep (enzymes) every day, but still feel sick much of the time, although I have managed to stop my weight loss. I'm 70 now,and rarely go out. Just wish I could get some of my energy back, I worked up until after I turned 66.

[ChronicPancAdmin Administrator in reply to grannywantssteak]

Welcome to the community grannywantssteak !

Thank you for sharing some of your Pancreatitis journey with us. We hope the community can offer you a place for support and advice.

[auntnienie]

Hello! My name is Denise, I’m new to the forum. Just so happy to join this group and share our experiences. We all need support. Only the afflicted understand.

[ChronicPancAdmin Administrator in reply to auntnienie]

Hello auntnienie

Welcome! I am so glad you have joined the community and you can gain support from others going through similar experiences to you.

If you feel comfortable, why not reply to, or write a new post, answering the latest question that was posted by AviK_MC from Mission: Cure:

"What has been your experience as you sought care/support to manage pancreatitis?"

No pressure if you don't feel ready yet 😊

[Susaberry]

My name is Nora. I’m glad to be here.

[WyoMike]

Hi everyone! I’m very happy to have found a place to learn and share! My name is Mike. I’ve been fighting severe chronic pancreatitis for almost 2 years. I was told it was my gallbladder so I had it removed in 2017 but I never got better and after 62 more er visits they found a stone blocking the end of my bile ducts in Nov 2019. I had it removed in emergency surgery and they found that it had been lodged there so long that my body started to try and reject it on its own, so it became impacted outside of the tube but caused an infection so bad that the tube closed off and backed bile up.. obviously, I was misdiagnosed .... after the stone was removed in November 2019 they said I would make a full recovery. They were yet again so wrong! I never got better! I’ve had 220 er visits form nov 19 to date ,and 6 icu stays. The bile being backed up in my pancreas and the enzymes not being excreted for so long had already caused irreversible damage and I started loosing weight and was diagnosed severe chronic Jan 2020. I lost 115 lbs in 10 months while on a feeding tube while drs said all they could do was a nerve block for pain(which didn’t work) At 85 lbs, I decided I had to get new drs and start demanding some healthcare2021! I started doing my own research and even researched drs that may be able to help. I have an appointment at the end of this month with Dr Melena Bellin for a consult on TPIAT , as all the other drs I have had, said that there were no treatments for my stage of Severe chronic pancreatitis. In under 2 years this disease has caused so many other things that it has fully wrecked my life! I haven’t worked in 1.5 years, I’ve lost 115 lbs, now have spleenic disease, intestinal disease, stomach disease, thrombosis, and even kidney disease... at 43 years old and less 2 years into severe chronic pancreatitis my quality of life is -1. I was lucky enough to get health insurance jan2020 but that was after 1.5 million dollars in medical debt. In the next 5 months i will have lost everything I ever worked for and will even loose my insurance! If I have ever hated anything, I hate this disease!

[Ernest2]

Hello,

I'm a CLL type Leukaemia patient (and part of a great HU community for that. Its a Chronic condition). CLL implies gene defects. DX early 2011, TX 2014/2015 with Chemoimmunotherapy.

Also got suspect Polygenic Hypercholesterolemia and been on Atorvastatin since late 2020 with some breaks and temporary switch to Rosuvastatin then back to Atorvastatin.

Current symptoms:

- Nausea (exercise level related) since 4th COVID jab 3rd March (I'm thinking the jab has just shown up an underlying health issue). In last 2 days this symptom may have improved (fingers toes etc. crossed)

- Liver inflammation mildly elevated levels of ALT and AST

- Raised level of Serum Ferritin (from my already high levels caused by blood transfusions in 2015)

- Bad digestion (Lunch is a problem area if I try to start work unless I leave work until 4pm)

- B12 Insufficiency (I have to supplement. I don't have the stomach enzyme issue to explain)

- Abnormal bowel habit (After lifetime issue was fixed by FODMAP in 2020 but then abnormal again following Antibiotics last Sept)

- LHS abdominal discomfort

- My weight is at the low end of normal BMI.

- HbA1C in normal range but raised 2 points from my normal

Family considerations: Father (& Grandfather) also had CLL and in addition Father had gallstones. One grandmother with diabetes.

Alcohol consumption: Tea-total since late 2020 and about 3 units a week max before then.

Other consideration: In year 2000 I had bad problems with the digestion that were never resolved. My weight is at the low end of normal BMI.

So I have to admit I don't have much experience/knowledge about the Pancreas but would like to join the group to learn more in order to have intelligent and constructive discussions with my clinical team.

I would be interested about intermittent fasting, and if that might help give the pancreas some R&R, also diet & exercise ideas.

So I hope you might accept me as a member while I try to get a diagnosis for the above if that is possible.

Many thanks,

Ernest