Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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anyone out there?

Staceu1209
Staceu1209
Hey everyone. I'm new to this group and am in desperate need of some support. I'm a lifelong sufferer of acute pancreatitis and was recently diagnosed with cp. I've been in the hospital every month of '08, sometimes twice a month. I start out with the pain and nausea and progress to vomiting. I'm very stubborn and very sick of being sick all the time, and I usually don't seek treatment until I'm practically dead on my feet. I try to take care of things w/o my doctor because it seems like he doesn't really care. He treats my symptoms, but doesn't have any interest in finding out why I have them in the first place. I know I'm probably imagining things, but I feel like that he's like "here she is again",complete with a major eye roll!! I generally end up in the ER and get admitted. After a few days of NPO,IV hydration and pain meds, I'm discharged. Within a few weeks, sometimes earlier, the vicious cycle starts all over again. I'm afraid to eat and don't have much of an appetite anyway. I truly have no life...I don't ever feel like doing ANYTHING. I'm getting depressed. My husband's been great, but he doesn't really understand and he gets upset with me when I try to treat myself instead of going to my doctor. I'm really sorry that this is so long, but I really needed to vent. I hope someone will reply to me, because I need some encouragement from someone who's been where I am and knows what to do. Thanks!
deleted_user
deleted_user
Sorry to hear about your sufferings. My partner Geoffrey has been dealing with CP for four years now. I have seen how doctors can just hand out the pain scrips with no questions asked. Are you taking pankrease pills before you eat? They have really helped keep Geoffrey's worst pain days at bay.
Staceu1209
Staceu1209
I do take viokase before I eat anything, but it doesn't seem to make a difference. I've been on a bunch of different enzyme replacements to no avail. I'm waiting to hear back from a doctor at Cleveland Clinic. I'm hoping someone there will have an answer - not to cure me,I'm sure, just get me to the point where I can have somewhat of a life. Thanks for your input. I welcome all advice from anybody- if something works for you or a loved one-I'll try it. I don't have anything to lose!!
deleted_user
deleted_user
Do you have a gastro-Intertinal doctor who treats you or s specialist? If not that would be your avenue of first approach as you Primary care physician can't really do much else for you besides prescribe meds as he/she is not specialist. Do you talk to a GI doc at the hospital?
deleted_user
deleted_user
I can relate, I have been in and out of the hospital since april of 08 every month, sometimes 3 times too. all different dx , same pain , until recently. I have just been been dx with pancreatitis along with a unknown mass / tumor on my liver. I have had a hard time getting my internist to believe I was actually having pain, and was constantly being admitted into the er , spend 3-4 days and being sent home, now as of yesterday I think she thought I was out of my mind. But after last weeks hospitalization they reviewed the ct scan of my liver and yes there is something there a good size mass, and my blood work came back positive wit CAE markers being high.
So I can so relate to you and how you feel, how they make you feel and the looks, it's unbelievable. As if you would wish this on yourself or I get your drug searching... I wouldn't wish this on anyone, and I have enough of my own meds from my pm dr anyhow. Sorry for rambling..... I just understand..... You can contact me anytime. I am in the same place as you are. You are not crazy, don not let the depression get to you, I know it is hard, but you can get through it. You are not alone.
deleted_user
deleted_user
The PAI is also good at offering advice on there yahoo group.
http://pancassociation.org/
http://health.groups.yahoo.com/group/pancreatitis/
deleted_user
deleted_user
I can really relate, I am so sorry you suffer like this. It is very painful and frustrating to say the least. Your Doc needs to find out why you keep getting flared up. Mine was due to stricturing of the ducts. As soon as they fixed that it was a huge pain relief and I can eat a little bit more now. I also was seeing a pain specialist and he did a proceedure to block the nerves that lead to the pancreas. For me it did not work, but for others it's great. Right now I choose not to take any meds including pain meds, the possibility of addiction scares me to death. Also most of the meds given don't help anyway. When I do flare up now I treat myself at home by restricting food and keeping hydrated and resting. At times I still need to go in for rehydration but not as often. Good luck to you and I hope you find an answer soon.
deleted_user
deleted_user
Hi Stace...I really understand the doc not seeming to care ...I have been through so many. My Gi of almost 10 years was so casual in his care and I stuck with him just because he really treated me good when I had no insurance - but he only gave me more meds to take ..there were no searching out what or why I was feeling this way. Finally went to a new doc and he suspected something , did the lipase test and found it to be over 700...great ...but because I didn't fit the norm for that kind of result - no unusual pain - and the CT scan didnt show anything he has kind of left me alone ..I mean ... my lipase is 10x what it is supposed to be ...I really would like to KNOW what is going on with my body .. so I too am so frustrated ..I really think like others said that you step out and go to someone else...until you find the right one...we really need to find answers because unfortunately they are too busy ...that is why I am so thankful for places like this ...I hope you feel better and get a good doc!!