Any pancreatitis survivors?

SalinitySally · February 2017

Last year I had a really scary and months-long attack of pancreatitis (with all sorts of complications) and lost about 35 pounds. I got pretty used to being hungry all the time and thought it was a great jump start to losing a lot more (that I really need to lose). I've gained some back and am serious about getting to a healthy weight. Sometimes I think I may be about to have another attack. I still have my gallbladder because it wasn't clear what caused the pancreatitis and my doc recommended not doing anything yet.

Anyone else have this history? Do you do anything differently when it comes to weight loss?

jodie5277 · February 2017

I actually had two scares i was put in the hospital in 2014 with pancreatitis.. that was some horrible stuff.. I too lost a bit of weight then it started to creep back on... then around christmas of 2015 i had another one.. but the symptoms were different then the 1st time so.. i did not think it was pancreatitis again. Second time was even worse.. But, again i lost a bit of weight and then started being stupid with my eating again.. But, now i am working on getting my self healthy for the rest of my life.. so more of that pancreatitis stuff.. so add me and we can help each other

ronjsteele1 · February 2017

I got pancreatitis in 2000. I nearly died from it. There was a mad scramble to try and determine its cause because I was so sick. Like you, OP, they could find no gallstone blockage of the common bile duct or any other reason that I would have gotten it. They generally look for either someone that drinks alcohol or a stone blocking the common bile duct. Medically, the scientific community does not know of any other reasons for its occurrence. After much research on my husband's part he took the doctors some stuff he found on aspartame (nutrasweet) and the pancreas. One of the things he found was pancreatitis. The doctors did some research amongst themselves and came back and decided that was the only logical cause for why I got it and why I was so sick. It was described to my husband as being akin to an effect of nutrasweet poisoning (although not necessarily nutrasweet poisoning that was just the best way they could explain it). I have since known one other person who had chronic pancreatitis for years that removed artificial sweeteners and has not had an attack since. She was a type 1 diabetic so for her, not being able to use artificial sweeteners was a huge lifestyle change.

I am NOT saying this goes for everyone that uses nutrasweet (artificial sweeteners) or gets pancreatitis. But if I was told they could not find a cause OR it looked like I might be prone to chronic pancreatitis, then I would be seriously considering something in my diet. Chemicals or processed foods would be high on the list of things to look at. Also foods or drinks that you have on a daily basis or a lot of. So I would just suggest that you look at those aspects of your lifestyle to see if anything seems a potential issue and then start experimenting. Chronic pancreatitis is awful. Its easier to remove the cause, if you can find it, then it is to suffer the damage and pain of more pancreatitis.

***Side note for those that are going to want to jump on the artificial sweetener band wagon - I am not here to debate that issue with anyone. I am going by personal experience and what doctors told my husband and myself. If you want to argue with them then go back and find them from 2000 and fight with them. In my home this issue is settled. If it's settled for you that you think they are fine, then good for you. Use all the artificial sweeteners you want. OP specifically asked about pancreatitis and when the cause is "unknown" to the medical world. Shock of all shock, doctors and science do not know it all. So don't go there in debating with me - I will not. OP is obviously an adult and can determine for herself if this could apply or not.***

Rebecca0224 · February 2017

I don't have it but my cousins husband does and I know how awful it can be and I'm sorry you have to suffer. I know anytime he ate onions he would end up in the hospital. I hope you have success in your weightloss journey.

SalinitySally · February 2017

Jodie, thanks for the heads up on different symptoms.

Ronjsteele, mine was pretty severe too. My pancreas literally split and became infected. And yes, I was almost bullied about alcohol, which isn't something I ever abused. It could be that I had passed gallstones, but we never had a definitive answer. The closest we came to figuring out a cause was thinking it's genetic, since my mother had chronic pancreatitis (ended when her gallbladder was removed) and my son had a pretty nasty attack at 25 (with no repeats since his gallbladder came out). Your idea about fake sweetener is intriguing. I use sweet n lo (saccharine) in my coffee and in occasional glasses of iced tea. I've always figured it had to be bad for me

ronjsteele1 · February 2017

utahjulia wrote: »

Jodie, thanks for the heads up on different symptoms.

Ronjsteele, mine was pretty severe too. My pancreas literally split and became infected. And yes, I was almost bullied about alcohol, which isn't something I ever abused. It could be that I had passed gallstones, but we never had a definitive answer. The closest we came to figuring out a cause was thinking it's genetic, since my mother had chronic pancreatitis (ended when her gallbladder was removed) and my son had a pretty nasty attack at 25 (with no repeats since his gallbladder came out). Your idea about fake sweetener is intriguing. I use sweet n lo (saccharine) in my coffee and in occasional glasses of iced tea. I've always figured it had to be bad for me

Oh gosh. They didn't believe that I hadn't had a drink in 10yrs when I got it. They would NOT believe me! I didn't even drink once in awhile at that point! But they were so baffled they wanted me to be lying.

Generally, I would suspect that it's a genetic weakness inherent in the pancreas vs. a gene mutation. Everyone is born with weaknesses. Some people are prone to sore throats, others to bladder infections, some to insulin issues, and some to different weaknesses in different organs. I suspect that I have an inherent weakness in my pancreas in general as I had PCOS for years prior to my pancreatitis.

We have a gallbladder for a reason. I love that doctors are happy to rip it out instead of find out why it's having issues in the first place.

They wanted to rip my 10yr son's spleen out to hopefully "solve" a problem that we discovered later would have made him much worse!

I'm so glad we told them to jump in a lake. You really want to preserve your organs as much as is possible.

I would recommend removing all artificial sweeteners from your life and start using stevia or xylitol if you need a substitute. Or <gasp>, even use real sugar. If I learned anything from all I went through, it was drinking a sip of regular soda with real sugar (not high fructose corn syrup) always satisfied my sweet tooth (literally just one sip and I was fine) whereas diet coke made me want to drink gallons of the stuff. No one will ever convince me that artificial sweeteners don't encourage more of the food/drink they are in.

But the bottom line is, if you continue to use them you *might* get pancreatitis again (who knows?) and if you don't use them you *might not* get pancreatitis again. There is no way of knowing but if you've had hints that it might happen again, I would be erroring on the side of caution or you will end up with a ripped out gallbladder. Yes, people can live without it, but it is far from ideal.

All the best to you and hoping you never get pancreatitis again! Oy, is that ever painful!

SalinitySally · February 2017

I wasn't a nondrinker but because I "admitted" drinking occasionally they concluded that I was a lush. (My son the doctor says they're taught to multiply your reported consumption by 3 or 4 because everyone lies, but I was honest.) Also I live in Utah, where a large part of the population practices a religion that doesn't allow alcohol. I could tell which medical personnel/docs were of that faith because of the "knowing look" they'd give me. During my fourth hospitalization when I was asked for the umpteenth time to confess that I was abusing alcohol, I finally said "Yeah, I drink nonstop, every chance I get. I keep getting you to send me home after ten days every time you hospitalize me because I need to get my drink on. In fact, I'm smashed right now." My husband was doubled over laughing so I'm pretty sure that's why they never asked me about alcohol again. As for diet stuff, it wouldn't be much of a loss for me to stop completely. I rarely drink diet soft drinks (or any---the carbonation isn't my friend). I'm so afraid of getting pancreatitis again that I'll stop anything that might cause it. Re losing my gallbladder: my primary care guy said get it out, my son (a colorectal surgeon who's removed hundreds) said get it out, but the surgeon who'd have done it said don't. So I haven't. He said he had his removed 40 years ago but that it was there for a reason. I figured I could always change my mind but not if it was gone.

ronjsteele1 · February 2017

I just looked at your user name. LOL. We're neighbors.

Yes! The alcohol thing cracks me up. I was in Oregon when it happened so I didn't have the whole state religion thing.

But they for sure didn't believe me! What your doc told you is the EXACT reason I never agree to surgery until I've done a lot to try and fix things naturally. I can always have things removed but they can't get put back.

Keep in mind that a lot of foods have artificial sweeteners in them. Sucralose, saccharin, nutrasweet, etc. Make sure you know the names of all of them. And if something is lower in calories I would assume it has artificial sweetener in it unless it specifically says stevia or xylitol. The other thing is, I would consider what Rebecca said as well. I would see if you can find any common foods that you ate within the 12-24hr period prior to getting the pancreatitis or the symptoms that seemingly were starting again. It may be a food trigger vs. an artificial sweetener trigger (although I wouldn't take the chance - I'd remove them anyway!). Also, since it's not known if you did/do have stones or sludge, you might consider a product called Stonebreaker by herbpharm. It's for kidney and gallstones. It can be taken when one actually has stones and it will break them up (no surgery!) or it can be taken as a preventive at a half dose once a week. For $12, it might be worth taking 15 drops of it once a week just to make sure you don't get stones that could potentially be a problem. It tastes nasty but it's a bit more tolerable in purple grape juice. Weight loss often kicks the gallbladder into inflammation so you would really want to avoid that if you can. The stonebreaker may be the way to go for that.

As for weight loss, I did end up with pancreas damage from my pancreatitis so if I have trouble weight loss wise it mostly because I have to control my insulin levels (which were a problem anyway bc of the PCOS). If anything, I probably have to keep my calories at the lower end of thing (1200-1500) in order to lose right now. And I struggle to do that! But anyways, all the best to you and I hope you never have to go through it again!

SalinitySally · February 2017

I appreciate the insights. Fortunately I don't have any insulin issues but I've heard to be prepared for gallstones. I eat 1300 cals/day plus enough to cover exercise, which for me is 500-700 cals/day when I'm on track

Are you in Salt Lake County? If you ever need a pancreas doc the one I finally landed is AHmazing.

ronjsteele1 · February 2017

utahjulia wrote: »

I appreciate the insights. Fortunately I don't have any insulin issues but I've heard to be prepared for gallstones. I eat 1300 cals/day plus enough to cover exercise, which for me is 500-700 cals/day when I'm on track

Are you in Salt Lake County? If you ever need a pancreas doc the one I finally landed is AHmazing.

Consider yourself lucky you don't have the insulin issues! I fight it constantly since the pancreatitis. I finally decided today I can't even eat back any of my exercise calories b/c my body just will not lose if I do - I'm too insulin resistant. My husband uses the stonebreaker for kidney stones and one of my best friends was scheduled for gallbladder removal but didn't want to do it (she'd been throwing up and not able to eat for 3 weeks). She went through two bottles of the stonebreaker (twice a day for 15 days) and they cancelled her surgery! She's never had trouble since. That was pretty cool. Ha! Mostly, I'll just do anything to avoid surgery. I've BTDT enough! It's been 17yrs since I had pancreatitis. I hope I never need another doc again! LOL!

No. I'm a few miles south of Boise. But we love hiking Zion and traveling through Utah!

It's about time for a return trip there. It's been a few years (3-4?).

SalinitySally · February 2017

I do feel lucky. I healed without a massive abdominal surgery because my doc was willing to let me try another way. I didn't eat anything between March 1 and late May and even though I HATED the whole TPN regimen (and stayed on it an extra month hoping to avoid surgery) it was worth it. Before that I was never sick. You said something earlier about having a weakness. I never thought of it that way but my mom got pancreatitis instead of lupus like her sister, and I guess I got it instead of MS like two of my siblings. It sure made me value my health.

MakingItHappen2017 · February 2017

Thanks for posting about this topic. It's very interesting. I have gallstones (diagnosed 3 years ago). Refused to have gall bladder out. Just started living a Paleo lifestyle 2 weeks ago and have since started having attacks ( ain't had them in years ). Really not keen for getting it removed as per Dr advice. Very interested in the stone breaker, never heard of it before after hours of research for a remedy. Will google it and hopes its available in NZ. Not sure if my attacks are weight loss related ( only lost a 3kg ) but notice someone mentioned onions which I eat a lot of. Would be interested if anyone else has any food triggers for attacks so I know what the avoid. Also if anyone else has tried the stone breaker with success. According to my Dr nothing works but removing my gall bladder - no thanks!

Any pancreatitis survivors?

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