Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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Megwyn 03/06/2015

I haven't checked in here for a while. 9/13 had necrotizing pancreatitis, which no Drs in my area can treat, I have to go 250 miles away each time I need to see the Dr. Once the pseudocyst finally healed I had my gall bladder removed. There was an orphan bile duct which refused to stay sealed and leaked bile into my abdomen for several months until they could do a major surgery (hepaticojujunostomy) to re-route my intestines and give that bile duct somewhere to drain into. In the midst of all this, my husband of 40 years died and the stress of that has not helped my recovery. My pain has never stopped. Sometimes worse than other times, but always present and Norco only takes the edge off. Now an EUS has found that there is a severe constriction in the pancreatic duct, most likely scar tissue. They attempted to do an ERCP to open the duct and place a stent but were unable to access the duct. Apparently mine does not open where most people's does. So they snipped the entrance to the duct to make it easier to get in when we try this again, hopefully in a few weeks. Anyone out there who has had to have a stent, and if so, how long did it take til the duct remained opened? I am told it may have to be done every 8 weeks for a year or more! I am discouraged, feel like this is never going to end, that I will never have my life back. I don't expect to ever be 100%, but I'd be happy with 80%

julinoz 03/08/2015

I have not had a stent so can't comment on that but I truly hope you find some relief soon, you have had enough pain and heartbreak for one person.

barbray10 03/11/2015

I've had a number of stents, 7 I believe. You tend to lose count. I have had CP for 15 or more years. The stents usually work. One gastro dr. cut the bile duct several times and it finally stayed open when stents were put in. Haven't had to have a stent for years. My problem is pain in the pancreas, which I have pain blocks for and then treat with meds. Not ideal but at least I'm living and most of the time the pain is low grade and tolerable with RX.
Sending you prayers and good wishes. Know here you have friends and support. Hugs. B

jennifer6099 03/11/2015

I have had three stents placed in my pancreatic duct. It was the answer for a really long time. Now, I am facing a pancreatectomy with islet cell transplant. I am so very blessed that I live in the Twin Cities where the number one pancreas doctor in the world practices at the University of Minnesota. I know how frustrating this is. When I had my stents placed (its called the Freeman Stent after Dr. Freeman who practices at the U of M), the relief was almost immediate and lasted several years in between stenting.

We have a very similar story. I had my gallbladder removed and had a subsequent bile leak that left my abdomen burned from the inside. I had to be on Oxycontin and Lyrica for a really long time. However, I found that Elavil really worked for that nerve pain from the bile leak. You should try it! I am back on it again because they can no longer stent my ducts open and I will be having the pancreas removed.

I hope that you find some relief. I know I am absolutely over this entire situation.

dcockfield59 03/12/2015

I had 2 stents in the bile duct of my liver they changed them every 3 months and it took a tear and a half before the duct stayed open on its own ive had so many ECRPS

tkiser 03/14/2015

I had several stents. None ever worked for very long. Maybe six months at the most and every stent gave me a 10 to 14 day stay for pancreatitis. Then I had genetic testing and found I had a mutation in one copy of the CF gene. I also had pancreas divisium. This sealed the deal that the only thing that would make me better would be to take the pancreas out. People with this mutation do not do well with stents. I put the surgery off until I had back to back hospital stays and couldn't eat any more. Be careful about the stents. My feeling are they don't work most of the time and will cause more scar tissue and do more harm than good. They talked about surgery to remove part of the pancreas to get back to good duct to fix the problem of the small pancreas ducts from divisium but I pushed for genetic testing because I had a gut feeling there was more to it because there are a lot of digestive issues in my family. That's when they confirmed the genetic mutation and determined that leaving part of the pancreas in would not fix me because I would continue to have pancreatitis. Do a lot of research.

barbray10 03/16/2015

I've had a number of stents maybe 7 or so. I've had a number of procedures. Every procedure I have had has moved me forward. Have had CP for nearly 20 years. It is something that has to have attention but with the right meds can be managed more comfortably. I now take meds every day. I try to spend my time being thankful for what I do have and not dwell on what I don't. I lost my husband last year and the stress brought more CP problems. Now I'm doing better. I pray for everyone on here that each of us can find a path that brings us happiness and less pain. Hugs to all. Barb

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