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Will the pain ever go away
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I am honestly sick and tired of hurting. I have exhausted every avenue of finding out what the hell is wrong with me. I have pain every single day no matter what I do. I have been to several doctors now, have had 2 MRI's, too many CT's 2 EUS and 0 ERCP's because according to each is too risky plus there is no blockage they can find and apparently my ducts must be normal because they have never even mentioned them even after all the scans I have had yet they do not know why I get Pancreatitis!!! I am just at the end of my rope and needed to vent. I just want the pain to stop. Thanks for listening.
Posted on 09/10/12, 02:49 pm
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Reply #1 - 09/10/12  9:18pm
" My son has hereditary pancreatitis. I have been doing reading on this and a lot of people make it to adulthood with few to any symptoms. So maybe you should get tested for a hereditary gene malformation. Sorry I have no more information and I really hope you have pain free days soon. "
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Reply #2 - 09/10/12  11:15pm
" Sobabe, I too wish I knew the answer to your question. I too have had the MRI's CT's and one EUS, no ERCP. I do not have clogged ducts either, just a good amount of scarring. No one can tell me why I go pancreatitis either. "Idiopathic" - a big word for "We dunno."
It's been my experience that about three weeks after an attack, I start feeling better. For me, feeling better seems to come a week or two after I can start eating some solid food. Then I feel good for two or three weeks and boom, back to square one. It's almost to the point where if I start feeling relatively well, I get nervous that another attack is around the corner, even though I am sticking with what I call my "safe solids," i.e., what I can eat when I am not flared up and in pain. Oh how I crave some fried fish and chips, but I would never dare to go to a restaurant where I might even smell it!
Hugs to you and I pray your pain subsides soon. Take care.
Renee "
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Reply #3 - 09/11/12  3:38pm
" It's been a year since I was diagnosed...and like you, there is no known cause. It has progressed unbelievably fast with me. I can no longer eat at all, except for clear liquids (jello, broth, etc...once in a while, I can tolerate a fat free nutrition shake). I'm on full time TPN, which I get through a PICC line which is placed in my upper right arm. Without it, I would starve.

The pain? Oh...the pain. I hurt all the time. Usually, it's manageable. The pain scale...1-10, with one being the least and 10 being the worse...mine is usually about a 4 which is tolerable without pain medication. If I get above a 6, I hit the oxycodone. Anything higher than that and I'm on my way to the ER for pain control and that is usually dilaudid or morphine. My doctor keeps me supplied with oxycodone. I do my best to use it sparingly. I admit I do take a lot of phenergan...sometimes 3-4 times a day because my nausea is persistent.

For me, the pain has only gotten worse. I'm beginning to think it will never get better. I have been referred to a pain clinic as my GI doctor can't keep prescribing me the oxycodone. FDA crackdowns and supplier meltdowns have made the drug very difficult to come by. There is only one pharmacy within 30 miles of me that carries it and I have to be on a special list to obtain it. It's a mom-and-pop type pharmacy as no chain pharmacies carry it now.

I would love to be pain free. Instead, I have learned to live with it. Yes, my function is limited because of the fog I live under. I can't drive when I take the oxycodone and my cognitive function is impaired. It makes me very sleepy as well. The worst pain is caused by I just don't eat. It's not worth the torture.

If oral pain medications are not working for you, there are other options...such as nerve blocks or epidural pain relief. I urge you to have your doctor refer you to a pain control clinic. They can really help and explain these other options. The pain may not go away completely but it can be brought under sufficient control to help you have come quality of life.

Laura "
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Reply #4 - 09/11/12  4:01pm
" Thanks Laura...I am currently under the care of a Pain Management Doctor. I still eat but very, very small meals...nothing big. I do not go out to eat anymore because I cannot really order a meal and finish it. My pain level on a good day on a scale of 1-10 is about a 3 but that is with my Nucynta 75mg every 6 hours and wearing my Fentanyl 12mcg patch. I have been waiting on the Nucynta since it is on backorder for a week so I just needed to vent my frustration on the pain. I am so sorry about you not being able to eat...and here I am complaining about my situation..geez! Hang in there girl...prayers for better days for you!! "

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