Mayo Clinic Connect
Hi. My husband was recently diagnosed with Pancreatitis.
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?
Liked by Rosemary, Volunteer Mentor
@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?
Liked by Teresa, Volunteer Mentor
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He is not doing well. This is his 3x coming back to the hospital. He is not tolerating the tube feedings very well. It’s really frustrating. He will eventually will have to have his gallbladder out. They think that might be the cause. But his pancreatitis is so inflamed they can’t do it right now.
@tnabs2008, Ohh your poor dear husband. I know that you, too, are in misery with him.
My husband had never had any symptoms before his intense pain He was admitted to hospital. And his pancreas was too inflamed for surgery, too. It took 5 days after admission to get it to the safe level where they could remove gall bladder. He was not on a feeding tube, but was on IV fluids. When the inflammation began to diminish, they wanted him to try to eat. He tried broth and jello, but could not keep them down. He had laparoscopic procedure.
I hope that this gives you some comfort and hope. Let me know if you have any questions.
How did they get the inflammation down. They can’t seem to get it down.
I was hospitalized three times in 2006 with acute pancreatitis attacks. I was eventually diagnosed with chronic pancreatitis and have had more than a dozen endoscopic procedures to try to relieve my pain and eventually had a Distal Pancreatectomy ( the tail end removed ) as a result of an endocrine tumor. It was benign, thank God, but left me with too few insulin producing cells and I am now and insulin dependent diabetic. One thing I read in the hours of research I do in an average week was that many gastroenterologists were treating the pain, but also treating the inflammation with heavy doses of antioxidants. I now take an anti-oxidant formula supplement and turmeric and my pain level has been lowered significantly. I am not a doctor, and probably not even a qualified “quack”, but from an anecdotal perspective, it has seemed to help me. Of course inflammation either accompanies or is responsible for much of the pain we experience.
Liked by Rosemary, Volunteer Mentor, Teresa, Volunteer Mentor
@tnabs2008, He was given antibiotics thru IV. I do not know what they were. He was started on the antibiotics on Fri evening, and continued until Wed morning. Surgery Wed afternoon.
At some point, he had been given a scan to see if there were any gallstones in there, but they said they had already passed and were not lodged in there. . After the laparoscopic surgery, his improvement was very encouraging.
What are the doctors telling you about the inflammation at this point??
It comes and goes and that is simply the nature of the disease. My recipe is, digestive enzymes so that my pancreas does not have to work so hard when I eat as that is on of it;s primary functions. I also try to keep my diet simple and as soft as possible, again to rest my pancreas. I take my anti-oxidants to try to minimize the inflammation, but that is all it will do. The endoscopist who placed a stent in my primary drainage duct last month – the 6th or 7th time – said the remainder of my pancreas is “shot” or riddled with calcium deposits which limit its functionality and means that I am not like to ever have long bouts of being pain free. He will remove this stent in about 4 1/2 mos. as they can not be left indefinitely without causing more harm. He also does not think they should be giving me any relief as there is no “clogging” of my pancreatic duct. The last option at this point is to have it removed and based on conversations I have had with people who have taken this step, I don’t think I will ever consent to have that done. One hope we have is that Big Pharma is making advances toward an artificial pancreas and that holds more promise for me than removal or transplantation based on what I know today.
I would have to guess, and remember I am not a doctor, that the antibiotics are because the believe there is an infection somewhere or they are attempting to prevent that possibility.
You both have my prayers. I know how difficult being caretaker is for my beautiful wife, so do not forget to take care of yourself, so that you will be able to support him.
Liked by Teresa, Volunteer Mentor, tnabs2008
@gman007, Thank you for your contributions to this discussion. You are teaching me a lot about this topic. My only experience with pancreatitis was with my husband’s recent episode and surgery. I commend you for working closely with your GI in your treatment. I admire your positive outlook.
I also am looking forward to many new medical advances that are in our future.
You are indeed fortunate to have your lovely wife to take care of you. And she is equally fortunate to have you as such a gracious and appreciative receiver.
Hugs and Prayers to both of you.
@gman007 I’m interested in your story in that I see in a previous post that you had a neuroendocrine tumor removed – is that correct? I have had 3 NETs removed from the duodenal bulb, so I’m interested in other NET folks. Have you had any recurrences? Also, you mentioned taking anti-oxidants – would you mind sharing what you specifically take? Teresa
I have not had a re-occurrence although the doctors remain concerned about that. Because I am also at a higher risk for pancreatic cancer, so I have an annual CT scan in hopes that we would catch either problem soon enough to deal with it proactively. I take 3 x 500 mg tabs of turmeric. I also take an anti-oxidant with vitamins A, C, and E. It also contains zinc, selenium, copper, and manganese. The list of minerals is extensive, so I will just say it is made by Solgar. I don’t promote any brand of supplement, but you can find a list of those that doctors are comfortable with by googling the question. I prefer those manufactured in the US even though they are not dealt with by the FDA, the manufacturing process of a food substance is regulated in the states.
Back to the NET; by the time we got to removing mine, it had essentially caused the organ to begin eating itself (not scientific terms, but similar issue) and so I had a distal pancreatectomy and splenectomy to remove the tumor and it was benign.
Any more specific questions and I will give it my best shot.
@gman007 Thanks, Gary. I appreciate the information. Have you ever had the 68Gallium scan? In the NET discussion group, there is a post about it. Teresa
Is this just a CT Scan done with contrast dye or something altogether different? If I have had one, it was not called that.
@gman007 No, this is more sophisticated than a CT scan or an MRI and is used to find NETs. Here is the link to take you to the explanation: https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
As NETs are difficult to find with traditional CT or MRI technology – this scan will find even very small NET cells. Teresa
Thanks Gary for your feed back. I am going to talk to the drs about the antioxidants.
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