Angie, You need to get to a Gastroenterologist. A lot of regular doctors have no clue about pancreatitis. Call the university hospital in your state and ask for the names of some specialists in your area. I did that and found a wonderful doctor. Be pro-active. You don’t have to put up with a doctor that is rude (or he may be frustrated because he doesn’t know enough). Ask specifically for a pancreatic specialist. I hope this helps.
Jk-I don’t have the experience yet in having to go for government assistance, but can completely understand needing it. I have missed so much work it’s amazing I still have a job. My friend informed me of FMLA (family medical leave act), which protects your job if you have a severe illness. I applied for that and received it, and so far have support from my manager. My sister in law has received disability for gastroporesus. She had to apply multiple times before they finally approved her. Keep at it, I’m sure they’ll approve you.
Thanks. I will be talking to the specialist again Monday, have to go in to the lab for some tests they ordered today. I think I have decided I will not go back to that primary, you are right he has no clue and who knows what he would say about me at this point. So discouraging. My job has offered me to take advantage of FMLA if I need to, but of course it is without pay which is a huge issue for my family right now. The girls at work have asked if they can donate sick days to me. One way or another I just probably have to find a way to go back over to Seattle. Will wait for these new lab results first and see what they suggest from there. Meanwhile, working very hard to stay out of the hospital ~ apparently, according to this ignorant primary dr. I go there too much!
Sherri is right on. Creon is essential as is not alcohol, low fat and of course anything else that hurts when you eat. My doctor in Denver referred me to a dr. in Colorado Springs. When the COS dr. doesn’t know she sends me back to the dr. in Denver. But it saves a lot of wasted trips and time and money. If the dr. you are referred to knows the specialist, it is easier to get in to see the specialist. Your referred dr. can refer you back to the spcialist. I think I have a headache from writing that last bit!! Let us know what happens.
Sherry, thanks for the CF information, that is a completely new possibility to me. I have been asking about the enzymes and so far have not been put on them. I have been asking for months for some explanation as to why one time I will be sick and my lipase will be elevated, but then another day I will have exact same symptoms and my lipase is normal. Nobdoy can give me an answer.
I too am a non-drinker and nobody can find the cause. I am beside myself right now after a visit with my primary this morning who I began seeing shortly after my first attack in February of this year. I went to him because it is an internal medicine practice which I thought would be best for me.
I have always liked him and thought he was helpful, but today I was completely blindsided when I went in for a follow up from being at the ER last weekend and he began to question the validity of my pancreatitis and said some very offensive things. I had to correct him on some facts regarding my lipase levels.
He was irritated that I had been to the ER 5 times in September. One of those times I was admitted and last weekend I was there on Friday and back on Sunday after no relief, and they wanted to admit me but I declined because I absolutely cannot miss any more work. The other 2 trips my lipase was not elevated so I was medicated, hydrated and sent home. Prior to that I was admitted for several days at the end of August.
He does not believe I have had a “true attack” since “earlier this year”. I guess he defines that as only when my lipase is up and then went on to tell me that my lipase isn’t “really that bad” (the admission/attack I corrected him on from a couple months ago my lipase was ONLY 4000).
I asked him so you don’t consider that significantly elevated? His response, “Well people with chronic pancreatitis can get upwards of ten thousand”. I have no idea where any of this came from. I clearly have had several attacks and have been diagnosed with pancreatitis multiple times.
I feel like when they don’t know what to do or can’t figure something out, they can’t just say so they have to turn it around on you. I was so offended I left there sobbing and do not have any idea what to do next.
The GI specialist is ordering some more testing for me, but he is all the way across the state so logistically I can’t rely only on them. I really am in shock, I was totally healthy and active until this all started 7-8 months ago and it has turned my life upside down. To go the dr. who is supposed to be helping you and have them treat you this way is unbelievable.
Angie, he clearly has no clue and you are not safe with him. Keep in mind every time you flare, you may be doing permenant damage to yourself. You need a GI and you probably need enzymes…they are the only thing that will help your pancreas rest other than not eating. Family drs are not trained in specialty fields (generally).
Mine threw his hands up once I said I was having similar pancreatic pain…he wanted nothing to do with it and was clear I needed a specialist. He didn’t even know what Creon was for. What kind of Dr is he? One that saved my life by admitting he was not familiar with that specialty.
Perhaps the GI you went to can refer you to someone closer to home. Also check into the FMLA (family medical leave act). It’s a government program that some companies work with (possibly required??) that protects your job when you or a family member has a serious illness and you take excessive time off.
I have it…it’s keeping me sane with all the time I have to take off. But make sure you see a GI first, so they can fill the paperwork out correctly. God only knows what your current dr would say about you. I hope all turns out well.
Hello everyone! I’m new here and am excited to converse with others like me.
My first attack was December of 2011. Before that, I didn’t even know what a pancreas was. I was hospitalized for a week and luckily made it home in time for Christmas. Within one month, I was having similar (yet milder)pain, which brought me to a gastro dr. Seven months later, I was diagnosed with a milder form of Cystic Fibrosis (one that effects pancreas only…no lung issues).
I am 39 and the only one at that time in my family with this genetic disorder. (my sister has since been tested and she too now has answers to her stomach problems). Anyway, I am one of the CP’ers that has flare ups with minimal elevation in my enzyme levels, so am sent home from ER repeatedly with little more than temporary pain relief and rehydration, which is helpful at the moment, but then I’m just sent home to suffer until it passes. It is extremely frustrating as I’m sure many of you know.
I’m on day three of liquids and am in too much pain to sleep. Nice to vent to people who understand. Also wanted to share the Cystic Fibrosis information. Apparently approximately 50 percent of people with pancreatitis that is unexplained actually have CF…and may not know…like me. It’s nice to know why.
Hi I suffer from chronic pancreatitis and I just hate it! I have more bad days than good ones…
I have a 11 yr. granddaughter who has had pancreatitis 23 times in the past 7 yrs.So far we have not found any cause or trigger for her onsets. Also she only has the stomach pain nausea when the pain isn't controlled.Anny imfo would be greatly appreciated. We have yet to meet another child like ours
biglake welcome to Careplace. I have to say that I am surprised that you are not taking enzymes. I take Creon and it helps tremendously. As you know, a low fat diet is necessary with pancreatitis. If you are eating too much fat it will float on the top of the water. But it is also difficult for a compromised pancreas to break down the fats. I have had one doctor that said that enzymes are not necessary - the rest say take them. There is some disagreement about that amongst the medical community. If you feel that you need the enzymes ask you doctor if you could try them for a month to see if it helps.
Thank you all for your input. I think I will ask my dr. to let me try enzymes for one month.
One of the advantages to taking enzymes is that it helps the pancreas and it doesn’t have to work so hard. The enzymes give it a rest so to speak. Everyone that I know that takes them swears by them. It definitely helps. Years ago my GI wouldn’t give them to me so I asked my GP. The GP was on board and I’ve been on them ever since. My new GI is also on board.
On the topic of enzymes, I am not taking them either but have asked several times if I should be. The last answer from the GI specialist was lets run this latest round of labs (waiting on results now) and then talk about that. Is there any harm in trying them for a month as you mentioned and see if there is improvement? If there is no downside to giving a try, I say let's try! Everyone seems to have pretty good experience with taking them, so what am I missing?
Hello all! I have had pancreatitis for approx. 10 years. I go to Dr. Chari, a gastro doc, at Mayo in Rochester. I went to Dr. Geenan in Milwaukee initially and had stents put in/out. At Mayo my gall bladder was removed and 5 years ago I had a Whipple. I continue to have episodes of panc. pain approx. 1-2 times/month but usu. can control it with pain med. at home. I just met with a local gastro and talked to him about taking enzymes. He did not feel I needed them at this time. I hate to get too graphic here but when I use the toilet there is visible oil in the water. He said that if I am not digesting properly there would be a noticeable smell. I do take an over the counter pill with pancreatic enzymes that I get at our co-op. I have had episodes of panc. pain with elevated enzymes and have been hospitalized. I have also gone in and not had elevated enzymes and have been given i.v. pain meds but not hospitalized. I feel lucky that our e.r. docs know enough and have my history and take my symptoms seriously. My internist defers to my Mayo doc which I also appreciate. What I have learned about pancreatitis is that not all docs know as much about this disease as many of us do. This site is such a great support. It helps to know others with this condition. Oh, b.t.w. I have recurrent acute ideopathic panc. Blessings to you all.
Good. I think you will be glad you did. Let us know how you do. And please feel free to ask any questions you might have.
Hi I got diagnosed with pancreatitis 2 years ago at the age to 21 and since then have been admitted into hospital 7 times since then. The doctors can’t seem to find a cause for it, they even took out my gall bladder as a precaution but I still have episodes of pancreatitis since them. It really has sucked and I have not met anyone who has had it and understands what I am going through. I can no longer go out and enjoy myself with friends (it is no fun just sitting around while everyone else drinks and everything). The pancreatitis has also lead me to have to take creon before i eat and worse of all diabetes that has worsen over time as the attacks have been destroying the beta cells that produce insulin. I now barely have any cells that produce insulin that I have to inject twice a day and soon will hav to inject 5 times a day. Its all been so much for me to take on and no one can relate to me, so i’m glad I found this site where I can relate to others and vice versa.
Welcome to the forum. There are a few things that you need to do right away. DO NOT drink any alcohol. DO a low fat diet. Give yourself time to recouperate. Are you with a doctor that knows a lot about the pancreas? Let us know how you are doing.
Hello, I am 36 and have just been diagnosed w/ pancreatitis. After much thought, I realise that I have probally been suffering much longer than I thought…it just recently culminated into a full blown attack. I hope to find some friends and some suggestions on how to cope. I am only begining to realise the frustrations concerning food and ther changes I have to make, as well as, learning to understand the other problemss.
Welcome Stacey. I am still learning too. Thanks for joining us 
Hello,