Mayo Clinic Connect
Hi. My husband was recently diagnosed with Pancreatitis.
@tnabs2008, Welcome to Connect. my husband had a real painful episode of pancreatitis in October. It was painful for him and frightening for both of us.
How is your husband doing?
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@tnabs2008, Is your husband making any progress? What are his doctors saying?
Sending continued thoughts and prayers to the both of you,
Liked by Teresa, Volunteer Mentor
After posting my response, I did go and do some research and it sounds like a much more effective locator of NET’s than a simple CT scan. My tumor that required the removal of much of my pancreas was not seen on a recent scan and was found by doctors who were going in endoscpically for a celiac plexus block and found the tumor once inside. I would appreciate the more precise findings of the 68gallium scan
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@gman007 I understand – my NETs were also found endoscopically. Perhaps you should talk with your doctor/oncologist regarding the 68Gallium scan. There is one center in my state that has this diagnostic tool and as you can see from my post above, Mayo Clinic in Minnesota also has it available for NET patients. Teresa
There are three in NC and I live in upstate SC, so I could get to a center without too much trouble and will mention that to my GI in October. Thanks for the heads up.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
@gman007 Sounds like a good plan! Let us know how it works out for you. Teresa
Liked by Rosemary, Volunteer Mentor
Hi, @tnabs2008 — thinking of you here at Mayo Clinic Connect and what you had talked about with your husband and his pancreatitis. Wondering how he is doing?
Welcome to Connect, @tnabs2008.
I hope you don’t mind, but I moved your messages into the endocrine group, where it's well-suited and you can connect with others who've had pancreatitis or are caring for those with pancreatitis.
I’m tagging fellow members @twinskl @freemary @gman007 and @rosemarya, all of whom have experience with acute or chronic pancreatitis. I hope they will share their experiences.
@tnabs2008, do you know what caused his pancreatitis? How is he doing?
I am new to group and also pleased to hear of others experiences and coping ideas. I have had five episodes of pancreatitis in five years. After the last one my doctors ordered some gene testing….I have no gall bladder….the tests revealed I have a mutant gene for Cystic Fibrosis and that perhaps the mucus is causing the pancreas issues. I am now on enzymes and am happy to report that many of my digestive issues are decidedly improved.
Liked by Teresa, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
I am pleased to hear that your digestive issues are so improved. I was wondering if you could share with us about the enzymes you are taking. Are they prescription enzymes or an over the counter product? Also, were there any other dietary modifications that you made?
I look forward to hearing from you again – it is amazing how much we learn from each other!
Wanted to add my welcome to Mayo Clinic Connect, @jensfcv. Very interesting about the gene testing your doctor ordered as you dealt with your five episodes of pancreatitis. Glad to know many of your digestive issues are improved after going on enzymes.
I also wanted to connect you and others in this discussion with @kdo0827, @elbb29, @kduran23, @mbbarrett, @dolo, @sneege, @amwein and @tnabs2008, all of whom have discussed acute or chronic pancreatitis, as well as @kdubois and @vdouglas, who may have some insights to share.
Do you have any tips on coping with pancreatitis episodes, @jensfcv?
Thank you for the welcome! Since starting the enzymes I find they “tell” me if what I eat is agreeable. Expect that sounds odd however I now know that Mexican and Italian food will give me some bloating and indigestion. I have also given up wine and am now totally a ginger ale drinker. I eat very little fried food…mostly bland. I know this sound dull and probably boring but when I remember my last hospital stay it certainly is the lesser of the two evils!
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator
Hi, @jensfcv — I wanted to touch base with you and see how your pancreas issues are going? Are you still finding the enzymes are helping with digestive issues?
Ive been suffering with chronic pain since may 2014.
Very complicated situation. I had gallstones which went on for months to try and keep the pain i ended up damaging my liver with a paracetamol overdose. I was admitted to hospital for 5 days and had treatment. Dec 2014 i became really unwell with acute pancreatitis secondary to gallstones. I had surgery to remove my gallbladder. Unfortantely the pancreatitis didnt improve. I was rescaned to find i had a pseudocyst on my pancreas. I went home with painkillers. Feb 15 i was readmitted with extreme tummy pain to find the cyst had grown to 31cm in diameter and ruptured my spleen. I had further surgery. Having surgery left me open to infection which was inside the cyst. The cyst became inflammed infected and ruptured. I ended up with a PICC line where i received TPN feed at this point in 6 months i had lost nearly 6 stone. My condition got worse i went into retention had a cathata put in. More fluids pumped thru. I got transfered to a larger hospital that had a pancreatic unit. July 2015 i had a 9 hour operation to drain the cyst and connect it to my small bowel. Finally i started getting better and went home Aug 2015. Sept 2015 admitted again with vomiting. I had a small bowel obstruction caused by adhesions from previous surgeries again more surgery 4th one in 10 months.
I started finally getting better for real. I have to take creon now but i still get upset tummy most days.
Further tests and scans showed i have diverticulitis plus a hiatus hernia and an umbilical hernia. Plus chronic pancreatitis and IBS.
I have no idea what i can cant or should eat but everyday my tummy plays me up. Needing to go go loo 10x a day. Constant sickness feeling. Niggling pain that turns into horrible pain. Its making me stay at home more.
I really need help even if i can control this with diet. Also im type 3c diabetic
Liked by Lisa Lucier, Connect Moderator
@thulbert0 Sounds rough. Everything I have hurts most of the time. Head, toes, and everything in between. One echo tech measured my pancreas and showed me that the tail was about triple the size it should be. My doc at the time said that was not possible, called the tech a liar, and removed the scan from the computer. Another tech looked at my heart and pointed out that it was about 15% larger, and the heart walls were about 5mm thicker than normal. But he was not allowed to enter this into the record because Willamette Samaritan does not recognize wall thickness measurements between 12mm and 19mm. Now I know that both of these are signs of cardiac Light Chain Amyloidosis. Mine is apparently Hereditary Gelsolin type. That same doctor at Willamette Samaritan put into my record that I had "psychophysiodystrophy". In other words, "Psycho", according to the chief cardiologist at Oregon Health Science University, and "Just trying to get out of work." At 75? With about organ cancers around my body and amyloid fibril invasion of every tissue? Trying to get out of work? It is about all I can do to haul myself out of bed in the morning. Anyway, I can fully comprehend your difficulty. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"
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