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ReeAnn 01-25-2001 01:32 PM

Pancreatitis
 
Hello Everyone,

I am new to these health boards and also new to a diagnosis of chronic pancreatitis. Does anyone else here have the same condition?

Also, I did have bad GERD and Reflux caused by a hiatal hernia. April 2000 I had the nissen fundo surgery to fix the hernia and had my gall bladder removed at the same time (stones).

Looking forward to meeting others with similiar problems.

ReeAnn

melody 01-25-2001 03:26 PM

Hi, there is someone on another board I visit that has pancreatitis. I will let him know you've posted a message on the digestive disorders board and maybe he will reply.

I myself just have severe reflux and barrett's esophagus. My doctor has never suggested surgery. I think he feels that losing weight would make a big difference and that I haven't done that yet so it's not time for something as extreme as surgery.

See you, Melody.

ReeAnn 01-25-2001 06:07 PM

Thanks Melody!!

[quote]Originally posted by melody:
[b]Hi, there is someone on another board I visit that has pancreatitis. I will let him know you've posted a message on the digestive disorders board and maybe he will reply.

I myself just have severe reflux and barrett's esophagus. My doctor has never suggested surgery. I think he feels that losing weight would make a big difference and that I haven't done that yet so it's not time for something as extreme as surgery.

See you, Melody.[/b][/quote]


kyle4267 01-26-2001 10:00 AM

Hi Ree ann,
Melody came over to the depression board and got me to come over here. Yes I have Chronic Pancreatitis. I've had it for about 3 years now and have been thru hell and back because of it. I,ve had 6 ERCP's and a major operation last winter called a Pancreotojejunumostomy. It has helped a little but I just got out of the hospitol 2 weeks ago cause of another bad attack. It lasted 5 days. I have alot of pain. Everyday I suffer from one level of pain or another. Mine was caused from alcohol, what was yours from? Some people just get it from nothing. I take alot of pain medicine, Methadone mostly. It helps some but it doesn't take it all away. Do you have alot of pain too? If so what do you take for it? I hope you have a better time with it than I'm having cause it has made my life a living hell. Write back and tell me more about your situation. I'd love to chat with you about it. I don't know to many people with this disease and haven't talked to anyone about it before other than a doctor. Hope to hear from you soon.

------------------
as ever
Kyle

ReeAnn 01-26-2001 09:33 PM

Hi {{{{{{{{{{Kyle}}}}}}}},
I think anyone suffering from Pancreatitis deserves a big (but gentle) hug. I guess I have idiopathic chronic pancreatitis - as near as I can tell from my research. I got my "official" (in the chart) diagnosis Dec 20th. Found out the day before Thanksgiving I needed to take digestive enzymes for the rest of my life. Based on a 72 hr complete stool collection test. Just my luck to find out the day before a major holiday centered around food...

Several things probably contributed my getting pancreatitis. I have quite a bit of medical history all in the last 3 years. Had major surgery too not that long ago. April 15th I had my gall bladder taken out and the Nissen Fundo surgery where they wrap the stomach around the esophagus to fix a hiatal hernia. I had severe esophagitis - 4th grade ulcerations on my esophagus from GERD/reflux. I also was diagnosed with a stomach motility problem, IBS, bleeding hemrroids, polyps in the colon, constant diarrhea, etc. About 2 months after the surgery, I had what felt like another gall bladder attack. My GI talked about doing an ERCP then, but taking the conservative route decide he would wait and see if there was another attack. Meanwhile I had to have another endoscopy with dilation because the fundo was too tight I had problems swallowing. Still do if I forget myself and eat too fast or don't chew well enough.

Two days before the dilation I had second attack, so one week later I had the ERCP done. It caused the worse attack of all. It was over a month before I felt any better. During the ERCP he did a sphinctometry on my Common Bile Duct opening it from 1mm to 8mm. He also cleaned the sand/sludge out of the Common Bile Duct, evidence that I had passed stones. from what I understand only 3-5% of people will that without a gall bladder.

It was about this time (Sept/Oct) that I started complaining about the oil slick from my stools and he finally ordered the 72 hr stool test. Normal fat excretion is 7%, mine was 15% - over double the norm. He tested for all kinds of autoimmune diseases, but they all came back normal, leaving late-stage chronic pancreatitis as the only possible explaination. Guess Type 1 diabetes is the next step in this nasty disease.

I have done extensive research on the net and in the library at the hospital where I work (for now anyway..). Not one bit of available matter gives me much hope for the future. About the best I can hope for right now is the total pancreadectomy (sp?) with the Islet cell transplant which would help prevent the diabetes. That is relatively new surgery and there are only a handful of place that do the surgery in this country. I am not rich, so I don't know if that is even a viable option.

From what I can tell from my research, the steat - lost of pancreatic enzyme function only occurs late in the disease - after 10 years. In my mind that means either I had this a long time already not knowing it (and the gall bladder attacks were really pancreatitis attacks - with stones in the gall bladder) or pancreatic cancer.... Now that is one very scary thought given that only 18% survive beyond 6 months - and 2% beyond 5 years.

Can understand your being on the depression board. Do you take anything for it? I am on Elavil with Ambein to sleep at night. I am also on Darvon during the day for pain and I take Vicoden at night. Like you, it just takes the edge off.

It is unreal how much my life has changed this last year. This disease has consumed every bit of reserve energy I have. I still work, but I am fastly apporaching the point where I must make a choice between working or taking care of myself. Right now on 11 rxs that I take regularly.. 7 of which make you dizzy. All of them I will need for the rest of my life. Even with insurance coverage it costs $200 per month - without it would be closer to $800. 3 years ago I wasn't even taking aspirin...

Didn't mean to ramble on for so long here. Looking forward to talking to you again soon!!

Lots of hugs,
ReeAnn


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kyle4267 01-27-2001 06:38 AM

I bet you have had pancreatitis all that time. I really wonder if they were right on taking out your gallbladder. Oh well they took my gallbladder out when they gave me that awfull surgury last december, so maybe it would of had to come out anyway. Taking all that pain medicine really sucks don't it. I'm doped up half the time. I'm getting use to the medicine now thou, it doesn't wipe me out like it use too. Sounds like you have had your fair share of digestive problems. Good lord have you ever been left alone and lived a normal life? I also have Scleroderma, which is a skin disease. I've got what they call Raynauds in my hands and feet severe. All the blood circulation gets cut off to them when they sense the cold air. Therefore I can't go outside when it's cold. I've tried every kind of glove made and it still gets me. There is nothing the doctors can do for me there. It's in remition now and i hope it stays thatway. It can kill you. I lost a good friend to the disease 3 years ago. I have 4 kids and I want to live to see them grow up. I'm on disability cause of all this crap. I was forced to quit working after the spring of 1997. I was going to college to learn a new trade then the pancreatitis stared and it's been on hold since. I don't think I will ever be able to return to school because of the pancreatitis. It never leaves me alone, never. Everyday I awake it is tugging down there letting me know it's there. I spend alot of time on the couch in a ball. I don't know what to do, one minute I think I'm ready to go back to work then it hits me and my hopes go up in smoke. I just give up. Yes I am depressed and I do take something for it. Remeron for depression and xanax for anxiety. I'm on all kinds of meds. Too many I think, but I do think they are nessesary. I don't think I could make it without them. Well I'll let you go and hope you don't have any attacks anytime soon. Goodluck !!

------------------
as ever
Kyle

fjames 03-08-2001 06:48 PM

Hi I'm new to the boards too. i was diagnosed with chronic acute pancreatitis about 5 years ago. I had the surgery pancreotojejunumostomy 3.5 years ago. Helped some. Symptoms were induced by blunt trama but surgery revealed a birth defect in the main canal that set up the organ for problems later. I have attacks every 8-10 weeks. I'm on a lot of meds. I'm wondering if any of you have trouble with frequent vomiting. I can't keep my meds working evenly if they keep coming up. I'm thinking of trying the "patch" for pain med. Anyone have a similar experience?

ReeAnn 03-19-2001 09:14 AM

Hello FJames,

I am rather new to this diagnosis and have been on two different pain medications - Darvon and more recently Vicoden - both taken orally. With the Nissen Fundo surgery, I can't throw up. But I do get the dry frequently from this disease. Before the surgery I thought it would be great to never have to worry about vomiting again, but in all honestly the dry heaves are much worse..... Fortunately they don't happen very frequently - about once ever 2 - 3 weeks. Have taken to carrying around a bottle of anti-nausea liquid (phosphorated carbohydrate solution). But since I put it in my purse, I have not had the opportunity to try it.

A few weeks ago I finally got in to see a nutritionist. While I still hurt all the time, I don't get the intense attacks as frequently since I have been on a very low fat diet. The nutritionist recommended less than 20 grams of total fat per day. Most days I can keep it right around 15-17 grams. Do pay for it (dearly) when I go beyond these guidelines. Never thought bread and butter would be such a treat - allowing myself it only once a week.

I go back to my GI again in a couple of weeks. At my last appointment, I had 3 typed pages of questions. At first he was saying that I might not have pancreatitis, but as we got to discussing the symptoms (pain and dry heaves - never talked about this before) he finally agreed more testing would be in order, for things like CF, small intestine biopsy (about the only other explaination beside pancreatitis for the steat), Catscan to look for scar tissue from last surgery (and I hope to check for tumors in the pancreas), additional blood work, another endoscopy with possible dilation and/or another ERCP. He is also considering referring me to the nearest teaching hospital - Baylor in Dallas. Guess I will have some answers and a game plan with the upcoming appointment.

What meds are you on? I take an awful lot of them too besides the pain pills:
Pancrease MT - digestive enzymes
Atenolol and hydrochlorothiazide - blood pressure
Elavil - pain, sleep, anti-depressant
Vicoden - pain
Premarin - female hormone (hysterectomy a few years ago)
Celebrex - Cox2 anti-inflamatory for the arthritis in my ankles
Prevacid - anti acid (PPI) that also helps the pancrease medication.
Levsin - to help with the bloating and gas
Ambein - to help me sleep.

Refuse to take anything over the counter unless my GI or pharmacist knows about it. Makes it real tough to get a cold (had one the last 2 weeks) or any other "normal" illness.

Do wish you well and hoping you are having a pain free day.

Hugs,
ReeAnn

I have also been trying to gather all my medical records into one place from the last 3 years. That has been quite a project. Still need the ortho records, those from the endoscopy center and finally from the GI.

HalleyJ 04-04-2001 02:32 PM

Not diagnosed yet. Just wondering if this might be my problem or some of it anyway. Do you recall your fist symptoms? What tests were done to confirm?

ReeAnn 04-04-2001 03:45 PM

Hello HalleyJ,

I still don't have an "official" diagnosis. My GI is still wanting to do more tests for other possible causes - only other possibility at this point that I am aware of
is something wrong with the small intestine - but the pain I feel doesn't fit with that diagnosis. He hesitates because I have not had any blood tests come back abnormal - have not been to the ER with an attack and levels quickly return to normal. Now I have "walking" lab orders for the blood test to be used with the next attack.

The first time possibility of pancreatitis was mention to me was when I had what felt like gall bladder attacks (only worse) 2 months after surgery to remove it. The ERCP showed evidence of passing stones and I had another major attack after that procedure. The thing with me that really points to pancreatitis is the steat - fat in the stools. Mine came in at over double normal.

Regardless of how the docs decide to label my problems doesn't change the fact that I need digestive enzymes anytime I eat and I have constant pain. Though from what I understand it is unusual to be diagnosed this late (steat appears in the late stages of the disease - after about 10 years).

From all I have been able to gather, pancreatitis is not easy to diagnose because of its location. What tests have you been through so far? Why does the doc or you suspect pancreatitis? What are your symptoms? Have you had gall bladder trouble?

Gentle Hugs,
ReeAnn

HalleyJ 04-05-2001 08:46 PM

Thank you for responding. I've had so much pain in upper left part of my body in the past year, I'm not sure how everything relates. About a year ago, I had a painful spot upper left part of my back. My doctor couldn't see me for 3 weeks, so I went to a chiropractor. After 1 1/2 months of treatment, I had one adjustment and therepy session that left my entire left side very sore. Chiropractor said I was just using muscles I hadn't used before. When it was still very sore after a week & we were going out of town, I decided I should get it checked out so I went to Urgent Care to see doctor. That doctor did EKG and xrays and told me I had broken ribs. I was on pain pills and muscle relaxers for a couple of months. I went to my doctor when the pain did not go away completely. He said I never had broken ribs and said I had costachondritis (inflamation of the ligiments in the rib area). He put me on more pain pills and muscle relaxers for a couple of months. I'm still having pain. Monday I went to a spine specialist and Tuesday I had a MRI of spine done. I will get results on Monday. I had been looking up other ideas to have checked out if MRI doesn't show anything and noticed somewhere,
that pancreas problems can cause back pain.
I was having some nausea awhile ago, but I thought it was all the pills I was taking.
Current pain is rib & breast area left side and left side of back. I feel very tired all the time. I haven't mentioned the fatigue to doctors, because I thought it was all my pain medication. Currently on Accupril, Evista, Pravachol, Previcid and occasional pain pill or muscle relaxer if it gets too bad. I'm not sure where to go or what to have tested next. I had a bunch of blood tests done in September 2000 and they all came back OK. I had a few more done a couple of weeks ago and they were Ok except cholestrial. I also get a weird taste in my mouth very often. Any suggestions on what to have checked next would be appreciated. Thank you for listening.

ReeAnn 04-06-2001 07:03 AM

Hello Again Halley,

My first thought is to ask if you had your gall bladder checked, but that normally causes pain on the right - not the left. Can I ask why you are taking the Prevacid? Do you suffer from reflux/GERD? Have you had an endoscopy? Have you seen a GI? I would get a second opinion on the x-rays.

Once before I had a similiar experiences with docs first not, then broke, then not broke again - with my ankles. It can be frustrating. The ultimate after the MRI was osteoarthritis cause by former trauma - had broke my foot at sometime in the past.

Yes pancreatitis can cause pain in the back. Some people feel it in the front, with me it is the back. Not surprising because when I had my twins 22 yrs ago, felt the contracts more in my back than front.

How bad was your nausea? Any vomiting, fever? Have you lost any weight lately? Not to gross you out, but have you noticed any change in your stools or urine?

Please let me know how your MRI comes out. Will remember you in my prayers.

Lots of Hugs
ReeAnn

royalarrival 04-06-2001 07:58 AM

Hi,my name is Diane
I have posted "problems after gall bladder removal". I was wondering what the pain symtoms are like that you have. Is it in the sternum area. A pressure like a semi truck is on it with sharp pain. My last attack was march 21,2001. I ended up in the ER. on the 28th of March I had an upper GI. everything is o.k.. After the attack every day the pain varied. Just now I am finally feeling some what better. This was my second attack since my gall bladder was taken out on 12/29/01. Doctors have no clue what's wrong with me. The medication they had me on I had a reaction to. I'm just on pepcid now. It doesn't seem to work. I hope you are having a painless day.

Thanks,
Diane

HalleyJ 04-06-2001 10:12 AM

Good Morning ReeAnn
In November 1999 I was given prilosec for acid reflux. Few weeks ago I told my doctor it felt like it was starting again and he put me on Previcid because he said it lasted longer. Symtoms went away after my visit, so I haven't taken any. No, I haven't had gall bladder checked. In Nov. 1999 when I went to emergency, they did ultra sound on my entire abdomen. They didn't see anything. No to your question about GI. I just recently started thinking it might be related to something other than my spine. I was really baffeled about the xray for broken ribs. The doctor in urgent care showed them to me and I thought it looked like fracture in sternum area, but when I asked my doctor to have xrays available during my appointment with him, I didn't see break either. I was wondering if a pancreas problem could be caused by the chiropractor when he did adjustment in that area. I told him when he did the one in that area, I could not relax like I was suppose to because it hurt when he did it. I am not constipated nor do I have diarrea. I am regular. I think I only vomited once when I was having nausea. Other than that, it was just the feeling. I will let you know what the MRI shows. Thanks for your concern and prayers. I will remember you in mine too & here is a "gentle hug"

HalleyJ 04-06-2001 10:24 AM

Hi Diane, My pain is more like a dull ache all the time with flareups that feel more like burning pain. All is on left upper side. Back, ribs & side of breast. I'm not sure this will help you. I hope you are having a good day. Halley

HalleyJ 04-10-2001 09:55 PM

Just wanted to report to you ReeAnn. My spine MRI was negative. Spine specialist recommends physical therapy. Not sure if I should try that or go back to my regular dr. to see if it could be something else. Just thought I would let you know. How are you feeling?

ReeAnn 04-11-2001 02:45 PM

Hi Halley,

Glad your test came out fine.. though if you are like me, would wish at least one test came back abnormal so you could get a diagnosis. Not sure what other testing to suggest you pursue.

I am feeling a little better today. Back on my low fat diet which helps. Just very tired. having trouble staying awake. Think I could sleep for about 24 hrs straight. Thanks for asking!!!

HalleyJ 04-11-2001 09:52 PM

Hi ReeAnn, I was just read your previous posts over again. You certainly have been through the mill. Are you still working. I'm glad this was a pretty good day for you. I'm tired all the time too. I figured it is from dealing with pain, worry and all the medicine. Hope you continue to feel better.

HalleyJ 04-24-2001 01:44 PM

Hi ReeAnn, I just notice you haven't written anything here for awhile. Are you OK?

ReeAnn 04-24-2001 06:32 PM

Hello Halley,

Kind of been having a rough time lately. Had some problems with what my PCP calls "Flushing Syndrome". Turning beet red from head to toe with burning and itching. After about 45 minutes the redness and burning go away, but itches stays for days. When it continued happening, my PCP ordered some tests. One is a 24 hour urine collection and the other is a cat scan (can't forget the never ending blood work). Both my GI and PCP assumed I had already had one... The scan is scheduled for May 1st. I did the urine test this last weekend. It was a weekend straight from h...

I had to come off all my meds to do this test. I was very sick all weekend with the dry heaves, nausea, stomach pains, headache, and my tongue swelled up... I was so sick I went to the ER for the first with pancreatitis (?) problems. They did give me a shot of something to calm the nausea and they said it would help with my tongue. And after checking with the lab, they okayed my pain pills.

This urine test is called 5-HIAA. It is looking for canerous tumor markers usually found anywhere in the digestive system or in the lungs. Flushing is one of the symptoms... along with a mirage of digestive problems. Needless to say, I am very scared.... So very afraid they are going to find the tumors in the pancreas... With my history of growing extra parts (precancerous fibroids, polyps several places, cysts, etc) I dont have any doubt they will find something. I am afriad because of my malabsorption problems give me about a 75% (or better) chance it will be the pancreas... A death sentence with most not lasting 6 months after diagnosis. I am scared.....

If this isn't enough to be dealing with, my boyfriend moved out while I was in the ER..

please remember me in your prayers...

Hugs
ReeAnn

[quote]Originally posted by HalleyJ:
[b]Hi ReeAnn, I just notice you haven't written anything here for awhile. Are you OK?[/b][/quote]



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