Pancreatitis - my story

Hi, my name is Warren and I am new here. I noticed that there weren’t any threads started so I thought that I would start one! :wink:

As most of you might know, pancreatitis is divided into two types of episodes- acute and chronic. An acute attack can be life-threatening especially if no action is taken. It is not always so as some of us who have chronic pancreatitis can attest. With timely, proper medical attention, most people who have an acute attck can expect a full recovery and lead a normal life.

Chronic pancreatitis is a little more insidious. All of the pathology and mechanisms are not presently known from what I have read and what my gi specialist has told me. Generally it is believed that chronic cases stem from untreated multiple acute episodes. After each untreated acute episode, more of the pancreas is damaged. This damage leads to scarring of the pancreas and duct.

Once this happens, the damage is permanent and life-long. In addition if the duct is damaged enough, the enzymes will continue to damage the pancreas causing further scarring. In western society the majority of chronic pancreatitis is attributed to alcohol abuse or gallstones. Gallstones can sometimes obstruct the pancreatic duct which causes the damage to the pancreas.

One of the most serious side effects of chronic pancreatitis is pancreatic pseudocysts. If these form and begin to rupture releasing pancreatic enzymes into the rest of the body, mortality rates can raise to 50%. If you have chronic pancreatitis, it is imperative that you avoid alcohol. Some other causes of chronic pancreatitis are: too much calcium in the blood, too much fat in the blood, hereditary pancreatitis, and idiopathic (unknown causes).

Pancreatitis is a fairly rare disease and is often not diagnosed for several years. I thought that my flare-ups were just really bad attacks of GERD or indigestion. Then I thought that maybe I had an ulcer. The episodes became so painful that I let my wife talk me into seeing a doctor.

At first we started out with Prevacid and other medications for my back (I have had two surgeries on a ruptured disk). The pain continued as well as diarrhea. She referred me to a gi specialist. My upper gi was scoped and no ulcers or abnormal growths were found. After talking to some people, I began to think that it might be my gall bladder which is somewhat easily rectified. Next, I went in for an EUS. That was when it was discovered that my problems were due to chronic pancreatitis.

At the time I was drinking 2 to 4 beers 3 to 5 nights each week. According to some, this is considered moderate consumption, but apparently it was enough to damage my pancreas unless I have some other underlying cause. This is possible because when I was diagnosed (about 6 weeks ago), I made radical lifestyle changes. I have given up alcohol (I did drink three beers during the Super Bowl), cheeses, and almost entirely taken red meats out of my diet.

Even with these changes, I continue to experience symptoms ranging from nausea, diarrhea, to intense abdominal pain. When I followed up with my gi specialist, he prescribed Pangestyme (a synthetic pancreatic enzyme) and Oxycodone for the bad days. The enzymes seem to be controlling the diarrhea, but I am still having bouts of major nausea as well as continued abdominal pain.

I have only had pizza twice in the last two months. More than the alcohol, I miss my cheeses, hamburgers, cream sauces (Alfredo, Newberg, etc…), and my occasional foray into bacon territory. On my bad days, I am frustrated and annoyed that my changes have not brought me relief. I am also a little anxious because if I continue to worsen, my chances of developing life-threatening complications rises. I try to take things day by day and do my best to be compliant with my dietary restrictions. I do miss slathering butter on bread though.

Well, I hope this helps anyone out there with this rare condition.

1 Like

Warbi,

Hey there!! You know, you are going to be told a lot of different things by different doctors and it really sucks sometimes. Just remember that the doctor does not feel your pain and he or she does not know what you go through each and every day. It’s hard and it’s a long journey. You have got to hang in there no matter how bad it gets. Believe me, some days you will feel like you went to hell and back. My flare ups usually last a few days to a month. To look at everyones sickness on the web really brings you to reality. I just joined and already this has been good for me. My fiance was wanting me to do this forever and I just blew it off. I figured it would be a waste of time. That turned out to be false. So far I have actually learned a lot. The more you know the faster you can get some pain relief. Have you thought about disability? If so, jump on it. It takes awhile and some good advice would be to get an attorney. They can get it to you quicker. It took me over 2 years. What a long road that was. Anyway, just know that people are on your side. People see the outside and they don’t understand the pain on the inside. I believe that the people in this website understand. It’s going to be o.k. Take care.

Hope you get feeling better.

Natalie

Shacoya,

It was great to get to know a little about you and your condition. I’m sure that everyone of us has more to the story than what we put down. I know that this pancreatitis has caused several of problems. I guess that this is pretty normal. I don’t drink, but I use to in the past. Nothing out of control though. Just a little wine and such. I do miss it a little, but it’s too much of a price to pay. After I got my feeding tube I started gaining some weight. Actually a little too much. It’s better than weighing nothing. I remember throwing up for such a long time and yes my family also wondered if I had an eating disorder. It was hard for some people to understand because it’s something that can’t be seen from the outside. Like a scratch. I just ate some pancakes and I feel very full. The only thing that I do know is that I’m practically broke due to medical bills. I owe at least 200 thousand to different doctors. I’m trying not to stress but I do have to file medical bankrupsy. I had perfect credit until I got sick. I loved my job and now so much has changed. Sometime I just can’t get out of bed. I remembering being healthy and strong. Very fit. Now I just feel tired and sick all of the time. I hate that feeling. I wish that there was a cure for this horrible monster. If anyone finds one, please let me know. lol.

Good nite.

Natalie

I have a question for all of the experienced CP’ers out there. I have days when my system seems so low on energy I can’t get out of bed. I take quite a few naps and everyone says I’m sleeping too much. But rest seems to help. Also I get spurts of energy that are really great and I get a lot done, but then I’m down for a day or two. Also, when my pancrease is really acting up my body seems to ache. Have any of you experienced these kind of symptoms?

This is easier said than done.
I try to avoid the heavy duty pain killers, unless I really need them, as they will make contribute to being tired.

Exercise does help, but once again, easier said than done when your tired.

Wish I had more to offer.

Keep your head up!

Seamus

I’m on Paxil also. Lost my daughter five years ago to Cystic Fibrosis and haven’t quite weaned all the way off them. I’m low though at 20 miligrams. I don’t take the vicodin often. I think maybe 15 out of the 100 in a years time. I heard that Pilates is great for people who suffer from fatigue, but I hate to excercise alone. Thinking of starting a class at our church where it will be free but still have someone to excercise with. Thanks for the answers on the Lipase levels. Don’t worry about thinking your nuts. I started journaling what’s going on and it really helped the doctor out - also proved that I wasn’t nuts. For a while they thought I was neurotic, but after my levels sky rocketed they now believe me. Well after a five day vacation I go back to work tomorrow - ugh. Have a great day!

Thank you thank you thank you… I’m sitting here crying… It has been so hard thinking that I am just a defective person, or that many of my symptoms were just in my mind. I sleep when I can, and hurt too much all the time, not just pancreas pain, but my back and my head and all over achy. I have such a hard time keeping up with the house and my two kids and my husband. They don’t understand how hard it is just to grit my teeth and get through the day without falling apart sometimes.
I have also had difficulties with depression, just wanting to die and get it all over with. And anxiety, including panic attacks sometimes.
I wonder, does anyone else get chronic headaches? Mine may be related to my back issues, but I’ve always wondered if it’s the CP or malnutrition.

You are all discussing tests, etc. which I have not had for 20 years, and I really need to get myself to a GI doctor but can’t afford it so I am waiting. Some of the stuff I have read lately scares me - wondering what exactly is going on with my Pancreas these days. The pain I have experienced with this last episode has been off the charts and I am just wasting away. I’ve held steady this last week though at about 95 lbs. which is good. I’m trying really hard to be strong and go on with life and not get bogged down in it all.
Another thing… are any of you having extreme tooth decay since you were diagnosed with CP? I brush four times a day and floss and watch the sugar intake. Yet my mouth PH is at 5.4 very acid, and my teeth are cavities all over. I had great teeth until I started with CP and since have lost 5 molars and constantly have to get cavities fixed.

I’m so glad you are all here and sharing your stories!
(((HUG)))
~ Shacoya

Do any of you experience migraines with your attacks and also a strange question: is your second toe longer than your big toe? I saw this on another sight and was wondering if any of you have noticed either of these two.

My doc took me off the Ibruprofen also and told me to take tylenol which does nothing to help the inflamation. My disc in my back only feels good with the Advil or Vicodin but the Vicodin’s effects start to fade and I don’t want to take more than one at a time cause I had a friend become addicted and I’m afraid the same would happen. The tylenol also does not help the pain under my rib like the advil does.

Shacoya and Warbi - Funny you mentioned the enzymes. My daughter took them from day one when she was born and maybe denial on my part but they made me feel so nauseas when I took them that I stopped. I’m waiting to see this doc in March as he is supposed to be really good and the doc I have now is so flippant that I walked away wondering what I was paying him for. His advice was: if you hurt don’t eat, liquids only for two days, take vicodin/tylenol and change your diet. He also said try the enzymes (Pancreas) and if they work fine, if not throw them away. And he even was nice enough to give me samples that were expired. Maybe I expect too much from him. I was so hands on with my daughter and the doctors they talked to me like I had a degree in medicine so I expected him to treat me the same way. I like details and exact treatments and this frustrates me because it’s so abstract in my mind. That’s why I’m seeking out this doctor. Since he treated my daughter I thought he might treat me like I’m intelligent enough to understand more than what the other guy is telling me.

Anyway, now in retrospect I can see where I was getting to the point of where I am now, but didn’t know it at the time. Like I said before, I just thought it was nerves or the flu when I had attacks.

Shacoya - The book,The Secret is by Rhonda Byrne. I’ve got about 5 people reading it and I’m waiting for their feedback. It also comes in a cd format so you can listen to it instead of reading. I was thinking of getting it so I can listen while I’m driving or laying in bed.

Natalie - what type of tube are you on? Do you use the machine also or a syringe? What type of nutritional supplements are you taking through the tube? My daughter used hers at night while she was sleeping and ate light meals during the day when she could tolerate food.

The other question I had for all of you was: have any of you developed Diabetes from this? I worry about that because I have seen the affects of it on friends who are taking shots. There are so many ups and downs if the meds aren’t regulated right and it runs in my family.

As far as what I unning family, son and work, you do what ya gotta do. People always wondered how I handled having my daughter sick and in and out of hospitals, but we didn’t know any different or better. It was our life and we just did it cause it was the way it was. I wouldn’t worry about your kids. Physical activity is not the be all end all to life. I find that if I can sit w/my son and just talk to him and listen to him he likes it more than doing the physical stuff w/his dad ( although he likes the attention from both of us). I think if kids know you care and love 'em that’s what counts.

Hope you all have a good night - hugs all around.

Shacoya,

The j-tube is a feeding tube. It’s placed left about 5 inches from my belly button. There is a tube that is placed into my small intestine and it bypasses my stomach. It bypasses my stomach to calm down my digestive system. I was on it steadily for about a year. It did wonders. I then started to eat slowly and for the most part I don’t use it as much. It’s in the bedroom right now. The part that sticks out of your belly is usually stitched in but my stitches kept falling out. I decided not to keep my stitches because It was so annoying. You have to keep it bandaged up or it will fall out. Some have a balloon on the part inside the belly but not mine. Anyway there is about 4 inches of tube sticking out . I will try to get the picture of it on here. I think that I have one. It’s not pretty!! There is a pump, kind of like an iv pump. It has a bag that you put your formula in, or whatever you need to put in it. It was very overwhelming at first but now I’m use to it. The surgery was very painful and I was in the hospital for 1month and 3 weeks. It was up there with neck surgery on the pain level. Ouch. It has fallen out also. I go to the ER when that happens and so far everytime my surgeon has been on call to put it back in. If it’s out too long then you have to go back into major surgery and have it put back in. I’ve had that done once and put back in about 4 or 5 other times. I need a new one now. I just don’t like the feeling when they take it out and put a new one in.

My meds that I take are outrageous. I’m on Dilaudid 5ml every 2hrs. 15ml phenergran and Loratab 10 every 4hrs. More if I need it. Valium 10mg 3 times daily and lexapro 20mg daily and coumadin for my blood clot. Pretty drugged up. Went through detox for dilaudid but I ended up back on it. Not by choice. That’s why I’m going to get a morophine pump this spring. I can’t wait. The pain management doc told me that when I get my pump then I will have about 10 years to live. I hate to see what shape my organs are in. I’ve been on this dose for about a year. Been on Loratabs since 2001.

That’s when my body started to fall apart. Well, I got a few hrs of sleep in today. I was going to start a diet because of the extra pounds that I have gained. Damned if you do damned if you don’t. I decided to wait until next week. pms. Need chocolate. lol. I tried to paste a picture but it won’t let me attach it. If you want, I will send it to you by email if you want to share it with me. It’s not a problem. It is very useful when I’m really sick. I’m thinking about getting on it again just to balance out my diet. I don’t eat right I will admit. I have to take care of my weight before it gets any worse. I went from having a nice figure to being too skinny and now too fat. I want to scream. I’m having another bad day, but Mike ( my fiance ) brought me a dozen roses, chocolate and a card. Today is the countdown for our wedding. 1 year from now. Yeah!!! Though I have this illness I have a wonderful partner. I’m very lucky to have Mike in my life. His kids too.

My condolences for your daughter.

Bye for now,

Natalie

Dragonfly-

For an anti-inflammatory talk to your doctor about Celebrex. My disk first ruptured back in 2001 (strange, Natalie, eh?) so I have taken just about every anti-inflammatory known including Vioxx. I know if an anti-inflammatory works because if it doesn’t, my left foot goes numb. I’m sorry that you have had bad luck finding a decent doctor. What he has said is useful for acute pancreatitis though. Remember, this is a poorly understood disease so it won’t be easy to find a competent doctor. As far as I know I haven’t developed diabetes yet. The problem with us if we do develop diabetes is that our pancreata (heh, I had to research to find the plural for it!) are also impaired regarding glucagon. This is important because the glucagon also controls blood sugar levels and with too little there is a good chance of becoming hypoglycemic. Please do try the enzymes once again. Use an anti-nausea medicine if you need to, but the enzymes will be beneficial on several levels.

Natalie- I’m sorry to hear that you are having such a bad day. I am glad that you have a partner who is so supportive and understanding of your plight. Please try to eat right as nutrition is so important for us with our crapped out digestive systems. I know it can be difficult, but think of yourself and Mike. If you can’t do it for yourself, so it for him. On chocolate- stick with the dark chocolates as they have no milk products and about 4 x the anti-oxidants that tea has. Actually healthy for you! lol I hoe you r day improves and I’m sending a hug your way.