Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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yeuker 11/25/2014

Good Afternoon Everyone,

I'm brand new to the forum and new to Chronic Pancreatitis. I don't yet have a definitive diagnosis like many of you but have most of the halmark signs. I'm waiting on an EUS but who knows when I will get in for that, our health care system is swamped.

I had felt for 3 or so months things were going down hill for me health wise, it just took me a while to understand what was going on. I didn't even know what a pancreas was until a month ago :-). I've been a reasonably heavy drinker most of my adult life... not to the point where I was drinking in the morning or during work, but wine in the evenings and 6-12 drinks in the evenings on the weekends. Clearly I feel pretty terrible as this is at least partly caused by myself, but I can not dwell on that as it is in the past.

I got sick with what I thought was a bad stomach bug 4 months back, that took weeks to finally run its course, then another one about 2 months ago that was viscous but eventually settled. A month ago however I got a stomach but that didn't go away and was only prevalent in the hours after eating. I also had pain in my upper back that had got worse over the last 3 months, as well as dark urine the odd morning and kidney(ish) pain. I also had a few fatty bms which I never discussed with anyone, just thought I ate too much fat and my body didn't need it all. My bms have floated for a long time.

This last 4 weeks went from normal, to sore stomach, to sore stomach and back pain and now I have pain under my left rib which is severe. It feels like someone poured acid on me and does not go away for 36 hours or so, although I feel much better in mornings and absolutely awful in the evenings.

Clearly I stopped drinking completely a month ago after I suspected pancreatitis. I went from eating regular, to cutting down on fat, to eating smaller meals, to eating fruits and vegetables and whole wheat bread and chicken breast, to soup and now I am down to smoothies. Yesterday I tried a whole bowl of veggie soup for lunch and suffered all night. I'm down about 35lbs which is a ton, although the first 15-20 of that was just eating super well in the summer.

I've had an ultrasound, ct scan, blood work, xrays of chest and abdomen, urine samples all come back clean. Due to my symptoms, the doc figures 'minimal change' chronic pancreatitis and has referred me for a EUS.

The doc put me on a Proton Pump Inhibitor which made my stomach pain after eating better. I also have some T3s that I am using to help get through the pain in the evening and trying to get sleep. Every day I get definitively worse, although I am working hard to hold my head high because I have young kids. I have so many questions:

- Is this the best I am ever going to feel or is it possible to get out of this downward pain cycle?
- Stopping drinking is easy, eating very strict is not super hard for me either. How do I start getting better? What are the steps you took?
- Are there any supplements you would recommend me to take like digestive enzymes?
- If you had it to do all over again, and were at the time of your diagnosis, what would you do differently?
- The pain is terrible and I know they will prescribe pain killers but don't want to get addicted to them. Any tips?
- I'm also constipated, any advice?
- How do you keep you calories up?
- What are some things I should ask my GI Doctor (December 3rd)?

I appreciate you spending the time to read my story and am looking forward to hearing from some of you.

Cheers,

Cory

bookwitch 11/25/2014

Low fat diet and no alcohol are good steps. Doc told me digestive enzymes aren't necessary unless you have loose oily stool. Fat free Ensure for some calories. I tried the shakes for more calories, but too much fat and made me sick.

I was pretty much unconscious at the time of my diagnosis. Make sure you have a good advocate because you can't always do it for yourself, especially if you're in a lot of pain.

My doctor prescribed a bunch of laxatives to keep things moving because my digestive tract shut down completely. It was over the counter stuff. That's a good question for your doctor.

Others can give better advice. I actually have damaged pancreas from Acute necrotizing episode. but I essentially have to live like I have CP.

Like you, I usually wake up rested and feel worse as the day goes on.

oh and don't force yourself to eat. I sometimes find meat hard to stomach. I only eat lean meat. Another reason to drink Ensure.

Good luck. This is a tough disease and you have to be hyper vigilant with it.

Sesser 11/25/2014

sorry you are going through this. you can try digestive enzymes but usually do not help unless you have loose stools-it really doesnt help w pain. Sometimes flares can take a long time to work its way out. What I would of done different is stop drinking. I suspected this for yrs but kept drinking wine as drs kept saying it wasnt CP DESPITE slight elevation in lipase. I haven't drank in 2 yrs but Im sure it made me worse as I used to have flares like you and now have issues daily. I do not have constipation in fact the opposite which is why I take enzymes. You are doing the right thing, eating pretty low fat and not drinking. Getting an EUS and a "secretion" MRCP are the two best tests. Have you also ruled out gallbladder? If not get a hida scan for the GB. Keep checking lipase labs as if it is your pancreas this will likely be elevated to some degree-even if just a few points.

yeuker 11/25/2014

Thanks for the replies. I will pick up some ensure and some laxitives and stay with the low fat diet and no booze. I'll also ask my doc about the gall bladder scan and mrcp. Not eating is easy because I have zero appetite I am just concerned about the weight loss.

julinoz 11/26/2014

Hi Yeuker,

Sounds like you and I are in a similar position, no diagnosis but so many tests eliminating everything else, I have had all you have had plus endoscopy, Hida scan, next week colonoscopy and then they will start looking at my pancreas, it's been a long yr, I have become very depressed lately, also fearful that it will be CP and after reading so many stories here I don't feel brave enough to go through what some of the amazing people in here have.

Hope you find help and answers, please keep posting here as I am very interested to know of your results

yeuker 11/26/2014

I forgot to mention I have had an endo scope as well. I am also worrried about cp but trying to rerd as much positive stuff as I can and stay clean living and healthy.

jasp435 11/27/2014

I too have had a tentative diagnosis of pancreatitis and for the first time in a many years my pain is reduced. My doctor put my on Linzess to clean me out andd no more pain! Nor sure why. I have been on 45 mg of methadone for many years but don't feel a need for it anymore except for the withdrawals. Also,stool has turned from yellow to brown as long as II use the laxitive. Dont worry about the laxatives. You rely on them but there uis a big differencin being addictive.

jasp435 11/27/2014

what is meant was don't worry about the opiods. Somtime you just have to take them yoavoid the pain. Relying on drug and being addicted are two separate things.

yeuker 11/27/2014

Thanks again for the replies. I don't have any 'serious' pain killers yet but my pain really gets significantly worse every day. I'm taking T3s with codine only 2 per day right now but having a rough time getting through work and sleeping. I need to ration them to make them last until I can meet with the Gastro doc. Does anyone take anything to help them sleep (outside of pain killers)?

Jasp435, that is an interesting note on the laxatives. I'm seriously bunged up. They took an xray of my abdomen and told me that that I'm 'full' so I have been eating prunes pretty steady which has got me to 'daily' but I can feel things are still not moving well. Not much help yet but hopefully they kick in soon :-). The upside of prunes is that they are also high in calories which I really need right now. How do you folks keep up your weight? I am trying hard but loosing the battle.

I'll head to the drug store today to pick up some laxatives. Any suggestions on brands?

deleted_user 11/28/2014

If you are worried about any digestive problems I find that eating oatmeal cleans my system right out. One of my first symptoms was constipation for me, I started eating oatmeal and boy did it flush the crap right out. I have also found that benefiber or any other fiber supplement has helped. If you can include oatmeal into breakfast I think it will help you soo much. Plus daily exercise. If you can workout weather it be running or lifting, its gonna help that digestive system.

I think your pain will go away especially is you say you are eating healthy. I think you may just have to be patient .

barbray10 11/29/2014

First of all, let me say I'm sorry you are going through this. But here you have people who understand completely. Yes, kiss alcohol good bye. And yes you will have better days. They may not all come at once but as you slowly learn to live with this condition and to be treated for it there are good days to be had. I've had several pain blocks which have helped me. I've heard it doesn't always work for everyone. I also take pancrealipase - enzymes to help the pancreas not have to work so hard to digest foods. I don't eat big meals but instead aim for six small. I do vegs, very little meat, fish, some chicken. soups, rice, etc. I take pain meds nearly every day. The most important thing I can say to you is, you are not alone in this battle. Good luck and God bless. Hugs, Barb

yeuker 12/01/2014

JRobertson and Barb,

Thanks very much for the replies. I do appreciate the support and hugs. I've been trying oatmeal and even filling myself with prunes (about 5-10/day, chewed well and eaten slowly) but no real let up. I've also tried sennakot for about 1 week but to no avail. I'm going to the pharmacy today to try something a little stronger to get the pipes moving.

I have been exercising as well, nothing too crazy but trying to get my heart rate up past 120 a few times per day for 10 minutes or so.

I will be patient on the pain and realize it will take time, my problem is that things seem to be getting worse daily. I have good days and bad and my symptoms aren't getting worse quickly, jut worse none the less... Not lots, but about 1%, every day. By the time the evening comes, I am spent and in pain again, mornings have pain now too. Tylenol 3s are getting me through the night which is nice but I can't take pain meds during the day because I need to work and drive.

Having a strict diet is not hard for me right now. Cooking and food were one of my passions but oddly enough, I don't miss food right now and certainly do not miss booze even a bit. I miss feeling well and living pain free :-).

I am eating healthy but have ramped down my fruits and veggies quite a bit in favor of breads. I know this isn't as good but I am withering away and need to keep some weight on. I turn 37 tomorrow and am 6'2 and down to 155 lbs which is pretty thin. I am trying for the balance between calories and health bue drawing my own line. My diet for the last few days is as follows:

Morning (I feel by far the best in the morning): 2 pieces of toast, 2 egg whites, no butter of course.
Snack: 5-7 Prunes
Lunch: Fruit and 1/2 sandwich with a bit of chicken breast
Snack: Smoothie: Blueberries, apples, spinach and oatmeal
Supper: Tomato soup or some other blended soup
Snack: A bite or two of a bagel, rice patties

I've also been mixing my water with clear juice like cranberry, trying to get extra calories without spiking my sugar.

To date, I haven't had a doctor or anyone to help me with diet as I have no diagnosis. Hopefully the gastro doc will help on Wednesday with diet, pain and sleep :-).

Thanks again everyone.

Cory

strongbeliever 12/01/2014

I have a family history of pancreatic cancer, so my GI, who is very proactive in early detection of PC, wanted me to have an EUS. I too have been temporarily dx'd with "minimal change" CP. I don't understand what that means but will ask the GI when I see him next month. He said my pancreas had scar tissue on it. I also have a 4 mm cyst which he is watching closely with follow up EUS testing. I am nervous about that, but he is not concerned, as it is very small - too small to biopsy even. I also have a condition I was born with - pancreatic divisum, where the inside of the pancreas is divided in 2 parts. Because this is a genetic anomaly, it can cause the CP and also the cyst. All of this made me a nervous wreck along with the family history. I know how you feel about feeling guilty about past alcohol use. I would not consider myself an alcoholic, but definitely abused it over the years. I am 55 now and otherwise very healthy. I look back and can definitely remember how I felt the next day after a night of eating and drinking heavily. I wish I had the foresight to clean up my act even 10 years ago and live a healthier lifestyle. I don't want to beat myself up because it is what it is and I have to be healthy for the future. The GI said is would be "wise to reduce alcohol use and eat a low fat diet". I have cut back to maybe having 1-2 glasses of wine a week which is really good for me. I don't notice any pain or anything different if I do that and eat healthy. I exercise every day and have tons of energy. I just need to manage this the rest of my life. I'm having an MRI Wednesday so the GI can take a better look at the pancreas divisum. As for supplements, I starting taking Curcumin which is an anti-inflammatory product that helps calm things down. I have always taken vitamins and minerals throughout my life. I also started drinking dandelion tea, as I've researched that it's very good for the pancreas. I get constipated as well, and have started drinking hot water with lemon first thing in the morning, and that seems to help.
I wish everyone here the best of luck in maintaining their health. CP is no joke. I wish it was something you could reverse.

yeuker 12/01/2014

I am taking curcumin as well although I have seen no real improvement on days when I take or don't take it. I also take multivitamins and a few other supplements that I have heard help. I'll give the hot water and lemon a go in the morning. My wife just bought a bag of them, likely because she read the same thing.

Cancer as well runs in my family but no PC that I know of. My dad has fought off 3 cases of cancer, 4 if you also consider the skin cancer he gets burned off every 4 months.

Also I'm only 37 and the odds of me getting PC are very slim (although I know not impossible) so I don't let my mind go there. Just dealing with this is taxing enough.

Although I did get hangovers, I never ever felt bad after drinking or eating fatty foods. I also was pretty healthy outside of drinking too much now and again. We never eat processed foods and ate piles of meat, fruits and veg.

One odd side effect of me being sick is that my wife and I have never got along so well, she has really stepped up. She isn't one to show empathy or sympathy which is OK for me right now because it stops me from feeling sorry for myself. Something I try extremely hard not to do. What she is doing is talking to me more, spending evenings together and hanging out more often and closer. Its what I really need right now and I appreciate her for it.

julinoz 12/01/2014

I am the same situation with my husband he is being very supportive, it does make a huge difference, like you, I am still undiagnosed after so much testing and to be honest dreading being told it is cp but there is not much left.

It seems that everyone's story is so different, even the type,severity and location of pain.

Happy Birthday for tomorrow

yeuker 12/02/2014

I also have little left and will have answers soon enough. What I really need is love and support from family and friends and someone to talk to about the disease and tips to help manage. I think I have both and that is something to be grateful for.

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