Dont lose faith

Posted , 4 users are following.

I met my husband 3 years ago, he was a man in a lot of pain, in a house by himself suffering. I choose to be with him and find an answer to his chronic pain ( mind you he was suffering way before I met him). After crying and fighting with doctors telling them he is not a drug Seeker, but a person in pain we finally got a diagnosis.... chronic pancreatitis! Please dont think that with a diagnosis everything got better cause it didn't. We struggle every day with this and the sad part is there is no cure for this diagnosis. The reason for my post is not to tell you how awful and life changing this is... for family and person going through this horrible chronic illness, but to tell you the steps i have taken to TRY and find my husband some relief and a little better quality of life with his kids and self.

1. Pain medications he has been on all types and strength still he has chronic pain

2. celiac plexus block it worked for a while, but lately he has had no relief in pain actually we are in the hospital every day.

3. Depending on the severity/scarring of the pancreas they will have other procedures available (whipple procedure) read on it and discuss with your doctor if its for you. He cant have this since the scarring is all over his pancreas.

4. Im in the process of seeing another pain specialist to try and discuss a pain pump. (I pray this is the answer for us)

5. Another option is to go to a specialty hospital in Gainesville and see what other options they have for him.

6. If it all fails he was referred to a special surgeon in Alabama to remove his pancreas completely (rember that option is last resort with lots of unknown risk) please do your research before taking that step and make sure its a doctor that has done that type of procedure before. Like his doctor told me ONLY HE CAN DECIDE TO TOTALLY REMOVE HIS PANCREAS... its his choice what quality of life he wants.

Remember this will never be cured, but you can fight to have a better quality of life. Hope this is helpful to someone else, trust and believe i know what you all are going through as we speak im in the hospital with my husband dealing with this evil illness.

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6 Replies

  • Posted

    Hi elizabeth, I would advise your husband to get o a high antioxidant diet, studies have shown reversal of the disease thru this method.

    Godbless

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  • Posted

    I have had chronic pancreatitis for nearly four years now and run through many pain relief meds with minimal relief. For me, I wil be having a complete pancreas removal (fir me a partial whipple since I had the tail previously removed due to lesions and it was calcified). That surgery was done laproscoicakly but that's not possible to remove the rest of the pancreas.

    Of special note to you is I have many lesions and this procedure has been recommended by a team of specialist who have done thousands of such procedures with all but 5% success rate.

    You might check into it - I am attending Indianapolis University Hospital by Dr Christopher "Max" Schmidt. His team (hospitalist, anesthesia, pain management, radiology and nutritionists). All come with a focus on pancreatitis. I've been told it's a tough surgery but I am prepared. Honestly, I just hand my fear over to Jesus...it's in His hands next.

    Just sharing my experience so you know there are teams that surround you with superior experience around our need(s). Don't be shy to ask or expect this kind of help ... Early!!! My prayers are with you but you are responsible for the choices.

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    • Posted

      Thank you for your information. always helps to talk to people with similar issues and methods to resolve them.

      I have spoken to several doctors and read a lot about this issue. Im definitely far from completely informed and have room to learn from others.

      I been thinking about him completely removing his pancreas, but feel its not my place to force him into it. I have asked him to go and get informed by a professional in hopes that it will help him decide on a direction, since every day i see him he is feeling more and more hopeless.

      If posible please keep me posted on how your surgery goes i would truly like to know how it goes and what to expect.... makes it easier to share with my husband maybe that will ease his worries.

      P.s. i love your mind set Jesus is the one that will guide us in this hard times. Wish you the best and hope after your procedure you have full pain relief.

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    • Posted

      I'm following these post. Was informed today that I may have pancreatitis. Scheduled for a ct scan and then an endoscopy. Have had excruciating upper abdominal pain and pain under the left rib. Had H-Pylori and took the treatment but the pain and neausea has not subsided. Rib pain has been there since a heart bypass surgery 10 years ago. The abdominal pain started about 5 months ago. All day and night neausea. . So checking gallbladder and pancreas now. Very frightening to think about. But can't live with the pain anymore. Praying with all my heart that things turn out great for everyone on here.

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