I never heard that befor. Man, it seems like the bad things that go with chronic pancreatitis never stop :(

It's good to know though. Thanks for the warning :)

I don't know if I have cp or not, but had ap in Oct-Dec off and on, and still having issues. My teeth since then have been horrible! I am brushing and flossing like crazy but have gotten so many cavities. Haven't gone to the dentist yet cause I don't know if I could handle the work on my mouth and the pain. Cost is also a problem here for me, so frustrating!!!

Have you tried ACT mouthwash? That and Sensodyne toothpaste help with some of the pain. If I were you, I'd get in and even do one cavity at a time. The rate of rot is really fast with pancreatitis, especially if you are vomiting.

If I had gone in earlier, I probably could have avoided some of the root canals and crowns (way expensive!).

I also take Ca supplements (the chocolate ones) to help keep up my levels. I have really low Ca and K levels and really, really low vitamin D3 and take those supplements along with multi-vitamins. All these years of eating poorly (only what I could stomach) has caused malnutrition. Ironic since I'm the heaviest I've ever been in my life!

And yeah, I call pancreas my pain-in-the-... The gift that keeps on giving! Haha.

Good luck! Wish I had a million $$ so I could help everyone out. :)

I'm gonna toss this out there and I know some of you won't like the idea but as most of us have money issues for a variety of reasons all related to this damned disease I had a dentist at my last and final place of empleyment tell me that I could get all the work I wanted done at the local dental college for an extremely reduced rate. Now before anyone goes ballistic on me at the mere suggestion of students going at your mouth the students only assist the instructor who is a licensed dentist and most of them have their own practice and only teach at the college part time. Now I'm not going to pretend I know this is fact at every dental college out there but this one was in wichita, ks and I worked with the dentist advising me to go there for many years, or I should say I worked on his equipment when it broke, but he also taught at the local college part time. Just a suggestion folks but as we all need to watch our finances and also try to keep our teeth in our heads for as long as possible this might make a viable alternative to full price dentistry...

This is so true. I work at a local college and they have an excellent dental program that offers work for a very reduced rate. And they also have the students assisting not doing the main work. It's worth a shot!

The persistant vomiting is what did damage to mine...erosion. I have to take phenergan twice daily to control it. Otherwise, I'm sick all the time. I'm going on TPN (which is vascular nutrition) to alleviate this. I had a PICC line put in yesterday.

OMG! That's what did my teeth in too - way too much vomit for way too long. Even brushing and mouthwash can't get between your teeth.

I've been TERRIFIED of getting another PICC line in for TPN. Had one for 5 days and it really hurt. Have you had PICC lines before? Any idea how long? Do you have it at home?

So sorry you have to go through this. Take care, Robbin

I know this sounds crazy but I wish I could go on TPN just to see if it helps. I was almost put on it in the hospital and at the last minute they decided against it. I can eat but the constant feeling of being sick and the off and on diarrhea is driving me nuts! I haven't lost anymore weight since being hospitalized (lost over 30lbs in 4 weeks) but no I am not getting proper nutrition. I have constant headaches and my iron and b12 keep dropping (not enough to be concerned apparently) they are depleted but not deficient. I sleep 8 hours a night and sleep about another 4-5 hours a day, not a deep sleep of course due to pain but am so exhausted. Don't know if this is good enough reasons or not, my family doc is against it from day one, he feels you can survive on liquids. I am lucky cuz I never throw up, I get very nauseas though.

Talk to your doctor again about the TPN. The fact of the matter is that those of us with pancreatitis simply cannot get proper nutrition. I am officially malnourished. My magnesium and potassium levels are dropping into the danger zones because I cannot eat without vomiting or having diarrhea. The only way to alleviate this is to bypass my digestive system entirely. Until I start the TPN, I'm living on nutrition shakes, applesauce, lots of water, a few ounces or rice here and there and sugar free jello. Oh...and a lot of phenergan so I can keep it down.

When I get the urge to go, I have about 30 seconds to get to a toilet. My intestines have no patience with me.

Robbin, this is my first PICC. My veins will not hold up to peripheral IVs anymore. They collapse within minutes. I cannot afford to lose any more weight. I went from a healthy, muscular 141 to a skinny, scrawny and weak 116 in less than 3 months' time. That's 25 pounds! My hips, ribs and collarbones all stick out. It hurts for me to sit for long periods because there is no "padding" on my tailbone. Lying on my sides quickly becomes unbearable because my weight is on my hip points. I now have an egg crate mattress on my bed, which helps cushion it a little.

This is one disease that we can never stop fighting. I'm so glad I found this group because I need the support more than ever as the disease progresses and I move closer to hearing I'm going on UNOS.

Go for the TPN. It will help you gain strength and weight and feel healthier. My goals are to simply stay out of ERs and ICUs. I'm trying hard to be proactive and not let this take control of me. Let's all work together for each other. We need a safety net.

Thank you for your feedback buzzi16!
I also have really low K (potassium) levels and have to try to keep down this powder you put in water. Ugh - very icky! But hopefully will help my K levels increase. My vitamin D3 is also dangerously low and I have to take supplements for that too. And several other important levels are screwy.

I feel for you re: sleep. I sleep what seems like a lot but wake every half hour or so. I NEVER sleep more than an hour at a time. And you just can't get the deep sleep you need, the REM sleep. I take Ambien and without it I only sleep 1-2 hours/day. I, too, am exhausted all the time.

I also have Fibromyalgia and have honestly never had great sleep (bursitis in both shoulders and hips) but it's getting ridiculous. Sometimes I stay awake for a few days in hopes I'll just pass out! When I'm in the hospital, I usually average around 2 hours per 24 hours if I"m lucky.

It's weird the medical pro's aren't more active about this... Are you taking any meds to help you sleep? I used to take Ultram to keep the pain/inflamation down so I could rest. I use a heat pad (the one with the mud is the BEST and it stays warm for hours) to help ease some of the discomfort. Have you tried that at all? Or even ice packs sometimes work.

Thanks for the response, lauralab1!

I'm so sorry to hear you're having so much pain right now. My veins are also crap and just keep collapsing. IV's only last 8-12 hours for me before they blow and it takes them dozens of tries to get a new one. Now my veins are so scarred it's even harder to get access.

Not sure why I'm being such a wimp about the PICC line after all I've had done to me. Maybe that's why - I'm just scared more things will go wrong. And afraid of more pain too. Do you have your PICC in now? Does it hurt?

I've heard TPN can really help your body get balanced. And the time I had a PICC line and TPN for 5 days in the hospital did really seem to help me. My body felt like a dry sponge and the TPN was blessed water - I just soaked it up! I just wish it didn't hurt so much.

Your diet is what I ate for months at a time! Add in popsicles and gatorade and that's what I eat now when I have an episode. have you tried grape gatorade? It feels so good - the electrolytes help with some of the starvation feeling. Even with multivitamins, you just can't get the proper nutrition.

I actually have 2 egg crates and 2 mattress covers on my bed. I have really bad bursitis in both hips and shoulders and have a messed up disc in my back. I've found this padding really does help! Maybe try another egg crate and more padding! When I sleep on another mattress, I get bruises on my hips and lower back, so I know the crates and such are helping.

I'm also grateful to have this support group. I've been struggling with this for 6.5 years and feel so alone. Friends and family drift away and even those closest to you don't really understand. I went from being an active 38-yr old college professor, trying to start a family with my hubby to this. Alone, old, sick. Not fun.

Please email me anytime you want! My personal email is nibborned@yahoo.com. I'm here. Take care.

Ladies,
Nice to join you, well, in a sense. I started with my pancreatitis in July, '09. I was way too healthy, tipping the scales at over 300 lbs. I stopped jumping on the scale at that time, but figured I was around 310-325 lbs. In the first two months I lost 60 lbs, by the end of the year I had lost another 40 lbs. And since that time, about another 25 lbs.
I never imagined my teeth would take a beating. Same as 'nibbor,' had about 5 cavities in my 44 years. Since, I've had about 5 caps, 2 root canals, and the other night while having dinner, I lost about 25-40% of my tooth base, which I thought was a cap. My dentist went to USC and sent me their because no one figured what could be causing my tooth decay, they just related it to lack of saliva due possibly to my pain medications. Well, that didn't help, but that wasn't the culprit either.
The pancreas went from my doctor, to a specialist, to UCLA to find a reason for my weight loss. The specialist wanted me to go to USC, but I was just tired of being sick and tired and told him to take a hike. After all, three doctors and no one can find a problem, yet I've lost over 100 lbs??!!!
So, about a month later I'm asking for the number to USC. First visit with and endoscope going down my throat (the 5' black ones that usually are inserted at the other end), I'm gagging the whole time, and they just keep pushing benadryl into me. When all was said and done, I walk outside the room to see the doctor writing away. He asked me if I drank. "Nope, haven't had a drink in about 5 years." He asks, "Did you used to drink?" "Oh, yeah," I answered. He tells me, "well, that's what did it. Your pancreas is scarred up, just get this filled and take 3 pills 3x a day in the middle of your meals." Uh, Doc, that's the problem, I'M CAN'T EAT ANYTHING!!! He tells me I have to try to eat something. So, for the last 2 years, my diet consisted of two pop tarts when I got to work (work 7pm-7am) and a cup of oatmeal in the morning, that's it. Still, nothing got back my appetite, the smell of food cooking would make me nauseous, having to have the wife put up all the windows. If she cooked any fish or fried anything, that had to be done outside on the plate off the BBQ.
After 22 years on the job and a clean record, my work performance went downhill, two written reprimands and two suspensions. I never felt I ever did anything that serious, as other people have these 'mistakes' happen all the time. I just didn't have the strength or interest to fight back.
On June 27, while at church, I went up for prayer after service like I have done dozens of times. That night on the way home, A HUNGER PANG!!! I thought, "Oh, no. What could this be now?" Wait, that was a hunger pang, I haven't felt that in years!!! Ever since, my strength has been getting better and better. My alertness, my cares, my feelings, everything feels so much better. Unfortunately, my wife never understood my problem, you know, the moodiness/irritability that goes along with pancreatits. Leave me alone, don't talk to me, don't bother me, just leave me alone!!! So, after a few years of that she told me that after the girls are grown and move out, she wanted a divorce. I wasn't really keeping her up to date on my medical condition, figuring if you're that concerned you would go with me. Nor was I aware of the emotional toll it had taken. Being in a highly stressful occupation, I thought 'it was just me.' Around that time the Doc at USC, after I asked him if I had cancer, he tells me, "Oh, no. You'd be dead by now. Most people with pancreatic cancer die within 6 months, if you're lucky and have the money you might make it to two years. But, I want some more blood work done on you and have them take another picture of your digestive tract." I figured okay, nothing new. Well, they took about 20 vials of blood and the picture consisted of this nurse walking out in some type of hazmat suit, having me put on gloves and handing me a foil wrapped omelet. Telling me, "whatever you do, don't touch anything on your body, just take off the gloves and put them here." You're kidding, right? Don't touch anything, but just go ahead and ingest this? Then, they had me sit up on a table and not move for 3 HOURS, while this machine traced the path. About a month later I see the Doc at USC, he walks in, sits down, flips open the chart and letting out a sigh, looks at me and says, "Wheww, I was afraid you had cancer." Can you believe it. I said, "Hey, Doc, if we're gonna do business you need to tell me what's up." Well, I didn't want to worry you . . . blah, blah, blah." Worry, me? I've been worrying for over 2 years now!! I said, "Doc, if we're gonna do business, I need to know what's going on. Especially, after I directly ask you about this. I need something to focus on, get my paperwork in order, get ready to die."
During about the month long wait, is when my wife sprang her future plans on me. I said okay and got ready to go to bed. I thought, well I need to get some things in order first. I go back to her and tell her that I might have cancer and to just give the time to get everything in order. She cried like a baby and held me like one.
So, after almost 3 years, I am symptom free, love the smell of food and can't wait to eat. Just not back up to 300 lbs again. There's more stuff, but I figure this is long enough.
Thank you ladies, as just typing this was very therapeutic.
Love you and God bless each of you.

My apologies for the typos.

The fact that you are not allowed to brush your teeth while on heparin drips is a contributing factor!! Ugh.

The constant vomiting causes MAJOR damage to your teeth. We have to be extra vigilant with ours. Like Nibbor, I learned the hard way when my bridge broke from erosion.