The Beating Pancreatitis Forum is closed. It may be closed for quite sometime. Leaving comments on this page/post is not chatting with forum members. There are no forum members – this is NOT a forum … but …
The rest of this site is available and will continue on, like always 🙂
Yes the beating pancreatitis forum is gone, history, no longer in use.
Set up a forum they said.
It’ll be fun they said.
And I thought it would be a great idea, give people a place to chat, ask each other questions, friend each other, message each other and more.
There were almost a thousand registrations but only about 5% activated their accounts and even less (a handful) actually participated on the forum. Like I said I thought it would be fun BUT …
For some reason people were having issues with it.
They were having difficulty:
- activating their accounts
- logging in
I thought it was pretty simple but I was wrong. PLus …
For no reason:
- the registration form disappeared twice
- the log in form disappeared several times
- weird stuff was happening
So until I can find a viable, working solution the forum is dead.
Kapoot.
Poof!
I tried twice and wasted people’s time twice.
I’ve been told that the third time is the charm and I usually don’t give up but being technically challenged I’m stumped as to the WHY things simply did NOT work right.
I may give it a shot again down the road but I think I’ll do a subdomain and give the forum it’s own site. That in itself may resolve some issues. Anyway …
I apologize for any inconvenience.
LOL…ok, I know I must becoming this huge pain, but it won’t send me an activation e mail…. 🙁
Anna – I noticed it can be SLOOOOOOOOOW
ok never mind. I used a different browser and it worked this time! yay!!
Good deal!
Hi i just found this webpage and it has been really educational …. i have had acute pancreatitis 5 times since 2011 and everytime i was hospitalized for at least 5 days …. my most recent one was last month … the main reason is from high triglycerides…. they have not once told me if its damaged only that its inflamed …… i haven’t really felt any pain or any symptoms since i was released …. but i dont wanna go thru this anymore especially since this last time was very hard on my sons they are 3 and 2 … my 3 yr old is afraid to leave my side since ive been home he doesnt want me to go to work thinking i might not come home again for days… i am diabetic and on insulin what supplements do you recommend that i take to take control of this. thank you in advance
Hi Deborah – sorry to hear you have joined the club. It sucks don’t it? High triglycerides are a difficult challenge to overcome since they are often a genetic problem when they reach high enough levels to cause AP. Here’s a link to the entire category that deals with supplements. Were you diabetic before your attacks or did you become diabetic after? I have a reason for asking. Also how high were your triglycerides?
Yes it totally sucks … Ive had diabetes since 2005 ….. My triglycerides were in the 800’s when I was admitted I do have a gallstone but they said it was small and wasnt the main reason why I had an episode.. I developed the gallstone when I was pregnant with my second son… all they tell me is to take meds for triglycerides, fish oils low fat diet n to keep up with my insulin … My sugars have been controlled so that wasnt an issue.
Since you are insulin dependent you’re right it shouldn’t be an issue in regards to AP (type 2 diabetes drugs are notorious for causing AP), where there is one gallstone there may have been 20 – 50 that have already passed (something to consider). The HIGH triglycerides may definitely be the cause. I’m curious about the fish oil and why they have you take it. It may be anti-inflammatory and good for healthy people but not so much for those who have pancreatitis (chronic or recurrent acute). It’s pure fat in one of the worst forms. ALL oils (fish, olive, corn, peanut, canola, motor lol, etc) aggravate a damaged pancreas, especially one that may still be inflamed. I had one guy who was wondering why he kept feeling crappy when he was trying to go low fat, work out etc and that he was even taking “healthy” supplements like “fish oil” a couple times per day. Anyway … i relayed the same info to him, he quit fish oil and felt better within a week or so. Just something else to consider. We all gotta do what we think is best. 🙂
good morning …. i have been on the supplements grape seed and the vitamin c and also the ibuprofen 800 for about a week and a half now feeling better still bloated at times but no pain nor nausea i have not been able to find the grapefruit seed yet. over the weekend i started to feel knee pain everytime i would get up from a sitting position.. so this morning i started researching about my knee pain and links come up on osteoarthritis and vitamin c… according to these links overdose on vitamin c can cause flares up on osteoarthritis… have you heard of anyone else dealing with this.
Hi Deborah – to my surprise there are some studies that indicate high dose vitamin C may contribute to more arthritis. I didn’t believe it possible so I did some quick research. Now these studies are NOT conclusive because some contradict the others however … indication of more knee pain was mentioned and the growth of bone spurs was as well! I don’t know how long it takes to grow a bone spur but I doubt they form in one week or even two. BUT, in your case it may be beneficial to lower your dose of C and determine whether or not vitamin C is causing your problem. If C is responsible it should resolve by eliminating or lowering the dose a lot.
yes i saw that it can help with other types of arthritis and in others it worsens it….. it also says normal dosage for women is 75 mg per day and here we r taking 1000 mg …. im so torn about this issue…. i love feeling better thats for sure but i wanna feel good all around too having this knee pain is not good for a mother of 2 toddlers lol
Deborah – I take anywhere from 6,000 mgs to 10,000 mgs daily of C (helps celiac disease too lol) so you are already on what I’d call a low dose. You may want to discontinue the C for awhile and see if the knee pain resolves. If it does, I would have to say that you need to cut your dose even further. 75 mgs of C daily barely keeps a person from getting scurvy.
Re bone spurs, I have read some encouraging research into the benefits of Hydrangea Root Extract, apparently it eliminates sludge and stones in the kidneys, plus people have reported almost miraculous resolution of bone spurs. I should post a link if anyone would like the (limited) scientific study.
Hi Susan – I’ll let you know. I may be deleting this particular post because I’m having major issues with the forum. So the forum is gonna go bye bye for now
I want Susan’s link, please. I have some hydrangea root. I’m in bed now with yet another pancreatitis episode. I really need all of you. I know some good things, too, and want to share what has helped me. But obviously I wouldn’t be lying here in bed if I had all the answers.
Is there another forum? I have chronic pancreatitis.
Hi Lesa – I imagine there is another forum somewhere just not on this site until I get it all figured out so it works lol I’m sorry. But there info here you can probably use if you check it out.
Has anyone on this blog with pancreatitis done a ‘liver flush’ ? It’s for getting stones out of the gallbladder and liver. (Fasting, epsom salts, clean out, grapefruit juice with olive oil. Different methods online.) I have done them and would like to ‘compare notes’ with anyone else with pancreatitis who has done one.
Health Guy, Is there any test specifically that I should avoid?
hi Justvisiting – It definitely sounds like you have had your share of rough times. The problem is you haven’t been diagnosed with either acute or chronic pancreatitis (if I understand correctly). In other words somebody is guessing? Don’t guess. Find out what’s wrong. Most tests to determine whether or not you have AP or CP or none of the above are fairly harmless and painless. I’d avoid ERCP unless I was given a real good reason why it was necessary. I pray you will have better days. 🙂
Hi Health Guy! I hope you are well! I do not know how you do it and answer all the emails and requests from all these folks! You truly are a saint..My offer still stands if you ever in Phoenix(Paradise Valley), Scottsdale, Arrowhead, Tempe, or Chandler, ARIZONA, please let me know and would really like to prepare you a beautiful breakfast at one of our restaurant/s(Chompies) with nice egg whites, fresh sauteed vegetables, we use a canola oil pan spray, a gluten free bagel…We have fresh fruit available, etc….We make a vinegar based Health Salad, that is made with water, vinegar, and sugar,,,,,It really is delicious and 100% fat free(Zero Oil).
Anyway enough about food, mostly doing better, not sure why but seem to have most of my issues after I exercise and then eat…then pain..not all the time…..but it is really strange,,,What has helped me a lot these days is a medication called baclofen..it is a muscle relaxer..I take 40 mgs at once only in the morning and on an empty stomach with water and black coffee….Seems to really help out and my issues have been decreasing ALONG WITH YOUR SUPPLEMENTS(THE GRAPE SEED EXTRACT IS A GOD SEND)….I also have to say that the LESS I EAT, THE BETTER I FEEL..I DON’T DRINK ALCOHOL EITHER SO THAT HELPS…I WILL BE PICKING UP A 15 YEAR CHIP IN AA, WITH GOD’S HELP ONLY, ON THE 19TH OF MARCH 2017…LASTLY I AM HAVING AN MRCP DONE ON THE 14TH OF NOVEMBER… AS YOU KNOW THIS IS NOT AN ERCP(WHICH CANNOT BE PERFORMED ON ME ANYWAY DUE TO GASTRIC BYPASS SURGERY). KEEP YOU POSTED……STAY WELL AND BE WELL ALWAYS, NEAL
The MRCP is on my pancreas of course….I am also having an MRI and an MRA done on my entire abdomen region(all being done at UCLA Medical Center)..I have no spleen, no gallbladder, no appendix, and not to much of a stomach after having an open gastric bypass surgery in 1998 and a laparoscopic revision in 2009……left hip replacement in 2014..I won’t continue….I could but I wont…..Thank God with YOUR HELP and the help of others, and some trial and error, I’ve never felt better…
Hey Neil! I am glad to hear you do feel better! That’s great dude. Let us know how the MRCP, MRI and MRA come out. Good luck 🙂
You’ve probably tried both ‘white grapefruit juice’ and ‘grapefruit juice’, Health Guy. How did you realize that ‘white grapefruit juice’ was more helpful for pancreatitis?
Justvisiting – to be frank I give all the glory to God in regards to grapefruit juice and everything else I do. I’ve never used any other grapefruit juice than the white variety.
Hi Health Guy,
Over a year ago, I’d read online what you went through in getting your diagnoses. (It was here, at this link: https://temp-beatingpancreatitis-com.siterubix.com/pancreatitis-my-journey-towards-beating-pancreatitis ) You’d finally found a good doctor. He examined your bile ducts with a scope. Then you write, “He actually gave me 2 drugs while in his office that caused me to have an attack. He drew blood every 30 minutes for approximately 3 hours. Everyone else drew my blood ONCE and as soon as I arrived but Dr. Langdon was a little smarter. The result? My enzyme levels suddenly spiked – through the roof. I guess that was all he needed to confirm his suspicions.”
So that I wouldn’t be in agony, I fasted before going to my doctor last week. Predictably, my blood test came back mostly ‘good’. Did you ever know what “2 drugs” Dr. Langdon gave you in his office that caused you to have an attack and a spike in enzyme levels?
Thanks for your help.
Hi Justvisiting – yes I know what the two drugs were. They were morphine and prostigmine. The two drugs in combination used to be used to diagnose SOD (sphinchter of oddi dysfunction). It was called the Nardi test. It is no longer used. They instead do MRCP and EUS before moving to ERCP with manometry and check sphincter pressures. Dr. Langdon never mentioned I might have SOD but I have often wondered since those drugs caused an AP episode. I have celiac disease (which can cause pancreatitis). I may as well have SOD too. That way I could have 3 of a kind (thinking a poker hand) LOL 🙂
That was an interesting answer, Health Guy. I’m glad I asked the question.
Here’s something that I ran across this evening. It only mentions regeneration of the pancreas “beta cells”. But we would be grateful for ‘any’ regeneration, right? Do we know anything about this herb?
Pterocarpus marsupium (Indian Kino, Malabar Kino, Pitasara, Venga). I plan to hunt for it online and buy some. I don’t want extracts. I just want the wooden chips or the powder. It’s the “rejuvenating damaged beta cells in the pancreas” that interests me. I am not diabetic.
“Pterocarpus marsupium (Indian Kino, Malabar Kino, Pitasara, Venga)
This medicinal herb has been used in Ayurvedic medicine for diabetes treatment for a long time. In clinical studies it has been shown to provide a blood sugar balancing property.
Epicatechin, a flavonoid extracted from the bark of this plant, protects the beta cells in the pancreas from damage that causes a reduction in insulin production.
In studies involving rats, this herbal treatment for diabetes even showed promise in rejuvenating damaged beta cells in the pancreas. This is the only herb, or drug, with this potential.”
Hi Justvisiting – It is interesting that you should bring up Pterocarpus marsupium and it’s potential to regenerate pancreatic beta cells.
Here’s the actual report (research).
Thank you very much for offering the actual report on Pterocarpus marsupium. I read it and looked up some terms that I didn’t know. I’ve reached out to an herbalist for help in obtaining the wooden chips or powder. (I am distrustful of extracts.)
Today’s ultrasound on my pancreas and gallbladder came back ‘normal’. After I got home, I heated up a small bowl of homemade beef stew (with carrots, potatoes, celery, seaweed) which contained no fat, ate it,…and was in terrible pain within 30 minutes. So much for getting my pancreatitis diagnosed with a simple ultrasound!
What would I do without you?
Hi Justvisiting – you may want to avoid red meat (beef, lamb, etc are all high fat) and pork. Neither works well.
After my blood test, the doctor’s receptionist told me the results were ‘normal’. I got her to email me a copy. These are the ones that were ‘out of range’:
CREATININE 0.52 L, Below low normal, (Reference) 0.60-1.30
CHOLESTEROL 223 H, Above high normal, (Reference) <200
TRIGLYCERIDES 240 H, Above high normal, (Reference) <150
HDL CHOLESTEROL 29 L, Below low normal, (Reference) <39
CALC LDL CHOL 146 H, Above high normal, (Reference) <100
RISK RATIO LDL/HDL 5 03 H, Above high normal (Ref) RATIO <3 22
AMALASE 28 L, Below low normal, (Reference) 28-100
To your knowledge, would any of the items showing "out of range" indicate pancreatitis? My ultrasound scan showed no stones. What test should I ask for next in order to get a diagnoses?
Hi Justvisiting – No, I don’t see anything that would indicate pancreatitis. Have you ever been tested for celiac disease?
No, I haven’t been tested for celiac disease. But I have been interested in it since reading that you have it. However, I doubt that I have it myself. I have had gallstones for many years and have done liver flushes. I never had any sign at all of pancreatitis. Then I was hit by a car from behind, pinning me between two cars. The impact threw me forward. In that instance, I felt excruciating pain, as though gallstones had been forced into the pancreatic duct. I also lost my leg, had a nicked spleen, a broken back, and am now paraplegic.
Last night, I did a liver flush. (It is a process…a short fast, epsom salts, empty stomach and intestine, drink olive oil and grapefruit juice.) My right side, gallbladder side, feels less pressure this morning. And my left side, pancreas side, is no worse, despite the olive oil. (Half cup olive oil and half cup grapefruit juice, with juice of half a lime.) Because I had done liver flushes for years, I knew the benefits, and I knew that I really needed to do a liver flush yesterday. I will continue to experiment on myself and report my results, but since pancreatitis is life-threatening, I am not at this time recommending that anyone else follow my example.
Hi Justvisiting – The only reason I asked about having been tested for celiac disease is because some of the symptoms you have sound like it may be a possibility and celiac disease also increases the risk for gallstones. Of course your car wreck could also have played a major role, obviously. You have definitely had some bad times. I’m sorry.
Well, I’m back! In the hospital with a lipase of over 4000 and amylase close to 400. I’ve been told, contrary to what my doctor has told me, that it is believed that I have never healed from my first bought of pancreatitis. They think that my first attack was caused from ulcers close to the ducts causing partial blockage, and there are rare cases where pancreatitis has been caused from a drug called hydrochlorothiazide, a drug I take for my hypertension. They feel that it’s possible that this drug is the culprit in making it hard for my pancreas to heal. Really, what is ridiculous about this whole thing is my lipase levels started going back up the minute I got out of the hospital the first time and started on my soft mechanical diet in which I was instructed to do. Several weeks after this I was up to 600 lipase level and when sent to a specialist, I was up to 900 and still they would not put me back in. I am now officially chronic. This is something I have been trying so hard to avoid. What takes the cake though, is that last Thursday, my lipase was 2000 when I went to the doctor, and was told to start on a liquid diet, and come back in a week…within days the pain was so bad that I called to see if I could come in sooner, and they told me to go to the emergency room where they found my levels to have doubled, and promptly sent me to the hospital….I’ll be changing doctors needless to say. These people are going to kill me.
…also, they are trying to feed me and I don’t want to eat….it’s been 2 days with no food, and I’m wondering, if I just don’t eat, will this pain finally go away? I’m not sure where to go from here, but I’m sure I’m tired of the medical profession and I just want to stop hurting, and start living a half way normal life….I’ve told them three times now that I’m not eating….they don’t seem to hear this and I think I can smell broth coming my way.
Anna if it is the hydrochlorothiazide you’ll continue to have problems until you are off the drug. If they suspect that drug like you mentioned they should have taken you off by now.
Hi Anna – I was wondering where you were. Now I know. It sounds like you have been having a really rough time. The diuretic hydrochlorothiazide could definitely be the problem. It has been known to cause AP (labeled class 2). Furosimide (Lasix) a class 1 drug is even worse. IF you were on hydrochlorothiazide when you first started having problems I’d even be more inclined to think it was indeed the culprit. Have they taken you off the drug?
Yes,I’m off the hydrochlorothiazide. Of course this raises my blood pressure and so, another can of worms is opened. Juices and things are out right now because of these ulcers, but what do you think about boost or slim fast? I had vanilla slim fast yesterday and then rice for supper. So far, no pain. I’m taking a boatload of pills and some very strong antibiotics so I’m kind of erpy (sick at my stomach) from all that, so eating really isn’t an issue right now anyway…. but food really has lost it’s appeal and I’m planing for the future.
Hi Anna – sorry you are having to go through some really tough times. I did NOT check out all of the Boost products. I did check the original formula and it contains oil. Most of the nutritional drinks do. Read the labels (nutritional info online at the home site on each product). The only one I know of that does not contain oil is Ensure Clear. I did not check Slim Fast.
Oh, I see what you mean. This page from the curezone taught me a lot.
Celiac Disease – Prevention & Curing Protocol
“So, there is direct link between intrahepatic stones, celiac disease and gallstones, not necessarily casual link.”
Hi Justvisiting – I took out that link cuz the content is almost pure bunk. Celiac disease is NOT caused by liver stones, the liver or any other organ. It is a systemic autoimmune disease. There is no cure, cleansing the liver isn’t going to accomplish anything in regards to “curing” celiac disease. Granted some gluten toxicity may become trapped within liver cells which a cleanse may help eliminate but the disease itself also attacks the liver. That is why many celiacs, especially those who are not on a GF diet, have elevated liver enzymes. heck if I thought for one minute (with any science that backs the idea) I could “cure” my celiac disease by flushing my liver I’d have done that years ago. But yes, there is a direct link between celiac disease and gallstones. There are direct links between celaic disease and cancers, pancreatitis and various other conditions.
I’ll keep trying to get a diagnoses. A nurse is coming tomorrow. Thanks for your valuable advice on pancreatitis. Your website has probably saved many lives. I haven’t found anyone else willing to lay out how careful we have to be with our diet in order to avoid having an acute pancreatitis attack. And you’ve given hope that we, like you, can stay alive pain free. Keep up the good work. And thanks again.
Hi Justvisiting – thank you for the kind words. You are definitely welcome. I wish I could do more to help.
Hi Health Guy – the day after my second liver flush (…second one in ‘recent history’, that is), I felt relief. I can mark the day- 11/19/2016. I felt as though something inside ‘opened up’ and relieved pressure. I ate a few pecans…yet no attack! The next day, I had hot milk…yet, no agony. I realize that my problem could return at any time. If so, then I would do another liver flush. Maybe I had sludge above the spincter of oddi, and the cleanse washed it out? I had excruciating pain for over two and a half years, did a liver flush, and the next day, the nightmare ended. Every adult has the right to take charge of his or her own health care. I did my liver flush at home, by myself, with no help…but I’d done it before my car accident, and I knew the routine. There are clinics that administer liver flushes under the supervision of medical doctors.
I am still eating a low fat diet. I plan to do more liver flushes, perhaps every two weeks, for a while. I am grateful to God for this improvement in my health. I have no way of knowing whether or not a liver flush will give the same results to anyone else.
Hey Justvisiting – Glad to hear you fixed your problem and are feeling much better 🙂
I am having a bad attack in so much pain really don’t want to go to hospital what can/should I be doing at home to get over this. Help!
Audrey – IF you are fully sure you are having an acute pancreatitis attack you should go to the ER. It is impossible to tell (without tests) whether your attack is mild or severe. Severe acute pancreatitis can and does kill. If you have Ibuprofen at home (IF IT WERE ME) I’d take 800 – 1000 mgs and head for the ER.