Brand new to this!

#1

I LIVE IN AUSTRALIA AND FEEL VERY ISOLATED, YOU ALL HAVE DIFFERENT TREATMENT OPTIONS AND DRUGS TO WHAT I HAVE AVAILABLE. TODAY IS THE 1ST TIME I HAVE BEEN ON THIS SITE. I WAS DIAGNOSED SEPT 2008 SO IT IS STILL NEW TO ME. HAVE BEEN GRIEVING AT MY LOST LIFE AND CRY FREQUENTLY AT THE MOMENT. HAVE BEEN HAVING TERRIBLE PAIN SINCE DEC 21st, CAN SEE MY PROFESSOR ON FEB 18th, IN THE MEANTIME SEEING MY GP, WHO ISN’T MUCH HELP AND TREATS ME AS THOUGH IT IS ALL IN MY HEAD. CAN’T BELIEVE I AM STILL ALIVE. MY DIET IS EXCEPTIONALLY LIMITED.

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#2

Oh Terina,

Welcome. I am sorry you have had to seek out this board. I am not at all familiar with what you do have available(I am in the USA). But if you are not already, look into going to a bigger city for doctors. What tests/procedures have you had?
Is the Professor a “pancreatic specialist”? There is so much information on this board as well as on the net about pancreatitis, some of it is scary. But it doesn’t have to be a death sentence. Try to remain positive. Eat low fat but high carbohydrates like rice, bananas, and other fruit. I usually eat pasta, rice and gelatin alot when I have a bad flare up. Also DRINK DRINK DRINK!!! Stay as hydrated as possible.

So why does your GP think this is in your head? Do you have tests showing proof of your diagnosis? Are you on enzymes? Sorry for all the questions. Just trying to get to know your situation.

I am sorry you are in such pain. I pray you find relief here knowing you are not alone.

Pain free days to you,
Keri

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#3

Keke, thank you so much for your reply. Now for the answers to your questions; Aug 2007 I had an ultrasound of my abdomen to no avail, I then went back to my GP in Jan 2008 and to cut a long story short, he thought it was my gallbladder(stones), eventually after having an endoscopy, I had a HIDA scan which showed my gallbladder was functioning at 27%, so it was removed April 2008, only if that was the solution!! I honestly thought I was going to die. The endoscopy showed(finally) that I had Helibacter and was put on the drugs for that. Eventually after numerous trips to my GP and nothing at all prescribed for pain I was finally sent to a Gastroenterologist. After further CT scans, blood tests etc, the only thing that showed was calcification on my pancreas. He would not perform an MRI, instead wanted to save that and perform a colonoscopy, much to my horror, as I was incredibly sick at that time, could not believe that I hadn’t died. I had an emergency trip to a hospital jut prior to an appointment with him, they couldn’t find what was wrong, but recognised that I was very sick. This gastro specialist had also put me on a diet of tomato soup, breakfast, lunch and tea. (i never want to see another bowl in my life!!) I became very upset with this doctor and had heard about the Professor. He is a lovely man. I had a very, very long 1st consultation & he ordered 70 blood test, a CT of my heart and lungs & the much awaited MRI of my abdomen. 13 days later I had my answers, I have hemachromatosis (store too much iron) and sectional pancreatitis. I now take Creon 25 000 times 2 every time I eat, 100mg Tramadol(24 hr lasting), 50 mg Tramadol for breakthrough pain, 35mg Endep(to help it all work), Domperidone for nausea and last but not least 50mc in Fentanyl patches for pain relief. My vitamin D has been destroyed so I take tablets for that as well, plus a multi-vitamin and homeopathic meds (4 lots), so I rattle!! I am 44, married and have 4 boys. I am currently 51 kg and am 5ft 9in tall, so I am very thin. I collapsed a few weeks ago. I also have terrible back pain to go with all of this. I am so very pleased to be finally in contact with you, o thank you so much once again.

Kind regards,
Terina

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#4

Hi Terina -

I made it through to the other side and have been well since an ERCP was done on me in September 2008. But, I can tell you that when I was still sick

  • any vitamins in pill form gave me terrible pain. I found that getting vitamins in liquid form did not give me pain; so I shopped each week and bought expensive juice concoctions at the store - one for each day. So, the only pills that I took were the ones that the doctors prescribed to me.I guess my best advice would be to pay really close attention to everything that goes into your body, and exactly how your body reacts - because each of on this board respond differently to different types of foods so you have to learn how your own body is reacting. I found that I experienced two types of pains: abdominal cramping and pancreatic pain. If you are in pain all the time it might be difficult to track; but if you can pinpoint times when you are cramping; you might find something that is making that happen that you
    can subtract from your activities that will make a difference.

I also had serious cramping from dairy products, but not necessarily pain.So, I switched to soy milk for the few months before September. It is also more expensive than regular milk so I have now switched back to regular milk. The light soy milk has a high water content which might have been why it was easier to deal with.

While others have said they eat yogurt - I always found that gave me extra abdominal cramping. And, I know that others have posted on here before that says for those of us who have to make sure we don’t do anything extreme to disturb a digestive balance - probiotic products are not a good idea either. Since I have been well, I still avoid these products.

A wise man once told me that if I wasn’t getting treated by my doctor the way I wanted, then I should fire them and get myself a new one. It is unacceptable for your GP to treat you like it is all in your head. There were times that I thought it was all in my head and my doctors were then ones who were telling me NOT to think that.

Here is a great link that has good information:
http://www.top5plus5.com/Index.html

Be well and hopeful,
Amanda

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#5

terina,

you have all the classic signs and symptoms of chronic pancreatitis, i have had this leathel disease for 10 years in sept. i am so sorry you are going through this, but the truth is we all at one time or another have been given the run a round as it just boils down to the fact that only so much is known about this nasty disease, please stay here with us as we support each other and offer much info by experience. it will soon be a comfort place yo you.

we are all in this together and when no one around you seems to understand, we are here! as we live it also. IT IS NOT IN YOUR HEAD!!! many of us have thought that crap also, often drs. do not know what to say or do, and they elude to crazy things. we all know the pain is real and unbearable, the pain in your upper left quad of the stomach shoots straight to your back, try laying down with a heat pad, i have found that it is vital to have a very secure comfortable place in your home that feels good and that is where you land in bad times, a lot of mental strength has to come from you with this disease, its not an easy lifestyle, but we have to find what works for each one of us and doit!i am 45 and have a great husband and supportive family and great friends, many of them are here, support is a must for people with chronic illnesses, so many of us land here! please feel welcome and i know everyone here wil help as much as they can, if you do not get answered right away, its okay, we all have flares and bad days , but when we are good we are here(even when we are not so good) so take a deep breath, find a relaxing spot or make one just for you, i have 32 our family room and our bedroom, it was redone for me by my husband in wonderful forget me not purple and white ! my master bath has been done just for me as i spend many nights on that floor!!!

it is all to comfort me! then you just have to get use to the idea of using your pain meds, they become your life line! also do not forget your faith! make your medical team your friends, please keep us posted and i and many others will help you my dear julie

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#6

Hi Terina,

welcome to the board! relate to your pain,frustration and feeling alone, I hope that you can find comfort here with us!!I will keep you in my prayers and know that we are here for you. Oh, and dont forget that heating pad it sure helps lots.

Take care,
mkgirl

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#7

Thank you so very, very much for your words, advice and wisdom. You have all had me in tears. I wish you all pain-free and happy days too.
All take great care,
Terina

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#8

Terina,

There is a couple in Australia that has an online support network. They have a cookbook that you can download. Plus they publish a newsletter. They have dealt with this for many years. Unfortunately, I can’t find the information that I had on them. I did find them on the web one day when I was exploring to see what was out there.

My thought is that they might be able to help you find a good doctor in your area and maybe give you a few pointers on how to deal with the medical and food situation.

I am going to look to see if I can find the website. Maybe I’ll recognize the name. I will get back to you if I find it.

I believe that I shared this information with others on the website. If any of you remember this please let us know.

Welcome to our website. If we can help in any way, let us know.

Keep the Faith and God Bless,
Vonnie

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#9

Well Hello Volup, I know this is a shock…Long Long Time since I have been on here, I just get back on CarePlace and wham it now Fireflyhealth??? and of course I can’t get on to that, or just to dumb to figure out how to get onto it??? I have been reading emails from the new comers, and of course ALL my friends on CarePlace/Firefly…It’s nice to know that I am receiving emails from some of you. I want to say I have you all in my prayers and thoughts, and I don’t want to loose contact with any of my friends!!! I found myself getting depressed and went to get onto careplace and this fireflyhealth came up so trying to get onto that has been a nightmere! How all is well, and follow doctors orders and you will do fine, I have the faith…Ok hon it’s getting late so better hit the bed…Miss You, hope to hear from you soon…With all my love, Mrs Barb :wink:

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#10

Barb,

Welcome back!! We do miss so many of our long time friends!! Hang in there with firefly. I finally figured it out. It is basically the same, you just have to search a little bit to find what you want. You’ll get the hang of it.

Vonnie

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#11

Hugh,

Hi, my name is Vonnie. Welcome to the sight. I would be careful with herbal products. What do you want to use the thistle for? Everyone’s diet is different. What works for some doesn’t work for others. However, low fat is really a key for everyone. Also, I drink caffeine free tea with a little milk. It is so soothing. One other thing that I have learned. Don’t drink really cold drinks. Lukewarm is best.

God Bless and keep the faith,
Vonnie

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#12

Hi everyone’
I’m new to this site, and drawn to these letters like a moth to a flame. I can relate to everything that is said. I,m 57 and was forced to retire from my job of 31 years, and lost a $50,000 incentive by not being able to complete a 2 year commitment, because of this cursed disease. And one of the biggest issues is that, I brought this to my doorstep! WHAT WAS I THINKING! I had my first accute attack 5 years ago and spent a week in the hospital, and was told vehemently by a couple of doctors to STOP DRINKING!
But that was all I was told, the day I left the hospital I had a roast pork and provalone cheese with gravy sandwhich.
Anyway, I did stop drinking for 6 months, but being a typical alcoholic I rationalized, since I hav’nt had any pain at all, it would be alright as long as I did,nt drink shots, and stuck to the beer. That lasted for a whole year, before I ended up in the hospital again, needless to say the pain outweighed the alcoholism, It was too late by this time, I started having attacks every 6 months, it took my 3rd specialist to get a fat and caffein free diet guideline, and with my MO, I had a distinct feeling the doctors, thought I was trying to get drugs. Anyway, I hav,nt drank or smoked in 4 years. So 5 years and numerous cts mmri’s an endoscopy, a stress
test, which showed a minor heart attack had occured but resolved itself,( who’da guess) a couple ultras, etc. and 5 specialist later, I’m having my first ERCP on the 25th of Feb. At Jefferson hosp. in Phila. From what i’m reading I’m a little anxious, needless to say. I’m gonna see if I can get them to let me stay overnight, reasons are obvious. But also it takes the ambulance at least an hour to get to me.( I have some dalauda stashed away for my next flareup, and i’m gonna catch a cab. To add alittle salt to the wound it cost me $200 for every er visit. So it has to get pretty bad for a er visit, which I’m finding out can be dangerous.
Thanks for listening, I,m tired of my wifes little sighs every time I mention anything medical. I don’t blame her, so I keep most of whats going on to myself.
As you probally surmised I’m in pain 90% of the the day, to some degree, you all know, that lousy ache right under left ribs.
Enough of my rambling, does anyone know if decaf coffee or tea is ok, and has anyone heard of Milk Thistle.

Hugh

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