Seven years of Pancreatic Hell

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After 7 years of sometimes severe pain, surgeries for gallbladder removal, hysterectomy, liver biopsy and SO many ultra sounds, X-rays, MRIs, scans, etc. I had a colonoscopy and endoscopy on Monday that was normal. This was ordered since I have had blood in my stool for one year and have lost 30 pounds. I had been told over 3 years ago that my main duct was totally dilated. My blood counts had been getting worse, I had become anemic the last year and a half and the pain has been so intense it is debilitating. After Monday's exams, the GI doc, said I needed another CT scan to compare to the other to see how bad my pancreas was...WOW, what the heck. After getting on this great site, I realize you guys know so much more than the doctors. Now I am starting to get scared and wonder what should I do? I think I should start a liquid diet, but hope someone can give me some ideas. My insurance stinks so I can't go into the hospital. Any suggestions will be appreciated greatly. I am 64 years old. I never drank liquor or took drugs. I am feeling desperate and a bit hopeless since so much time has passed and the doctors have not done a darn thing.

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  • Posted

    Im sorry to hear about your difficult experience. My husband has been going through his own hard times with chronic pancreatitis. Here is some things i have learned along the way.

    1. Get an EUS done its a more definitive test for pancreatitis

    You need to know if your dealing with acute/chronic pancreatitis.

    If its chronic pancreatitis.....

    1.Try taking creons it may help with the pain just know that they need to be adjusted to you for you to notice the difference (you cant overdose on them so try diffrent dosage) they are taken before you eat anything.

    2. Try celiac plexus block for the pain for some it works and others may not feel the affect.

    3. People end up taking pain medications, but remeber getting on strong pain medications can have its own problems. (Addiction)

    4. Depends whats wrong some people may get stents in the pancreas or whipple procedure. Your doctor should let you know if you can benefit from this procedure.

    5. My husband suffers from bad pain so he is considering a pain pump, but before this we tried other options first.

    6. pancreatectomy with islet cell transplant this is an aggressive procedure, but if you are willing to do it... some people get good outcomes from it and it will help you not develop pancreas cancer.

    Google for more info on the procedure.

    I hope this will help you in any way possible. This is not a fun problem to be faced with and haveing a support team can make a difference. Good luck and wish you the best!

    P.s. please research the info i gave you it will help you understand what it is.

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    • Posted

      I have become very confused since it was refered as chronic pancreatitis yet I seen to be having "acute" attacks. Actually, every single time I eat anything at all Imget sick now. To be that does seem acute. But I have had  three different GI doctors because of insurance changes in Two years and it is a nightmare.  Think it's time for me to be proactive.

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    • Posted

      I put a link for you, but i guess they removed it. Go on YouTube and type "pancreatitis and islet cell transplant ask dr khan" on the search bar. Its a 22 min long video, but he explains chronic and acute pancreatitis with both you will be in pain when you eat. My husband is in pain wjen he eats and has lost a lot of weight because of this. Yes, be proactive because its your health on the line from my experience doctors dont care unless you push them to.

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    • Posted

      Thank you so much Elizabeth. I feel like I have been alone and then I found this site and now I realize there are so many others out there like me and suffering even worse. You all know so much more and probably have done so, so much research as well. Now it is my turn to do research for myself and others too. What we learn, we must share and help others in the world. Thank you again. I am scared that since I am just skin and bones now, at maybe 85 pounds and should be at least 115, if I drop much more there will be literally nothing left at all.
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    • Posted

      No problem!!! Wow u have lost lots of weight. Try "Premier Nutrition High Protein Shake" its low on fat. If that doesn't help try "ensure clear". Eat lots of different berries its good in antioxidants. Watermelon has lots of water it will help you stay hydrated. Rember that if your pancreas doesn't work your not getting proper nutrition. If you can try taking vitamins. When you feel pain for a few days just stick to a clear liquid diet. Then, little by little start to incorporate other LIGHT BLAN FOODS. Try juicing to get nutrition and eating baked fish and chicken breast for protein. Also try eating raw "pink ginger" it will help with inflammation. Sweet Potato is good for you... NO BUTTER!!! Broccoli is also good for you. Always remeber eat small meals 6 times a day it will put less work on your pancreas. Rember what you can tolerate may not be what others can tolerate just try it and see what works for you. Hope some of these things may help.

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    • Posted

      Hi Elizabeth,

      Thanks for all your great info!! Some of my tests came back. Colonoscopy  and endoscopy were negative Yeah! But bile duct is totally dilated and now they want to do ERCP after they did the MRCP w/out contrast. They have known for years I have a dilated duct and if course all this weight loss. I am now back with my old doctor ( specialist in pain management) who is a gem and the kindest woman alive. So I am lucky for that since I have another issue besides the pancreatitis. Once again your help and positive feedback as with others and this website makes my struggle easier each day. Thank you again from the bottom of my heart.

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  • Posted

    I'm sorry to hear about your husband. I have had chronic pancreatitis for 3 years. One of my closest friends was born with CP. Its definitely no walk in the park it effects so many other parts of the body.

    You definitely want him on Creon that's extremely important.

    I was simply having outpatient surgery and the doctor hit my pancreas abruptly with a sugical tool.

    I take meds for digestion, acid, and unfortunately pain.

    The total pancreatotomy sounded like a life saver for me until my dear friend had it done now she has more problems the islet cells they put in her liver are dieing quickly, she's 95 lbs. and the doctors are considering a feeding tube for her. It does prevent pancreatic cancer which is great.

    Just please get on the creon and everyone in this group is extremely nice and can answer any question you may have. Having CP is a long painful ugly illness just pray keep faith always. You learn at least I do something new everyday. It's always a good idea to !rink liquids for a few days or fast to give your pancreas a break..

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    • Posted

      Hi Wendy, I am going to look into the acre on this week as hat you wrote about. Thanks so much for all the info you gav. All of you have been so incredibly helpful and supportive and it is so wonderful and great and now I do not feel alone anymore 
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  • Posted

    Hi, well I can't remember exactly which Super Hero in this discussion recommended Gastric Enzymes.... (I think it was a gentleman) - but whomever it was has already changed my life!

    I have only been taking them twice a day for 4 days, and thus far, not an ounce of pain!!!  Considering that 1 had pain on a daily basis (it was just the level which varied) - this is truly the most amazing feeling.... :-) 

    It may not work for everybody, but after 7 years of pain - its certainly worth a try.... available without prescription at a pharmacy / health store.

    If my hero is reading this - thank you very much for your advice!

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    • Posted

      Dont know if it was may post or someone else, but none the less it feels gratifying know that sites like this could help someones life. So happy to know you have found a better quality of life. 😊😊😊

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    • Posted

      Hi Elizabeth, can't be sure, but if it was, I thank you from the bottom of my heart....

      And yes, I agree, this site truly is amazing - if we can make any contribution to alleviate the suffering of others then that makes me really happy!

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    • Posted

      I am going to look into the Gastric Enzymes along with Creon this week and as you mentioned this site is so helpful and great for so many of us. Each of us can offer useful information to others who are suffering along with a sympathetic ear and understanding of the pain and suffering that goes along with either the unknown or the knowledge of the disease. I am so thankful that I found this group and have had so many helpful suggestions so far. Thank you again.
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