1. < Digestive Health

Chronic Pancreatitis/Sphinter of the oddi.

Posted by blaise56 @blaise56, Nov 28, 2021

Hello,I am a 56 year old male and have been diagnosed with chronic pancreatitis due to having the sphinter of the oddi.This all started with what the gastroenterologist called common bile duct sludge blockage 17 years ago.I underwent a ERCP to open the sphinter and remove the blockage.It did help initially and lasted for about 10 years with very little pain in that area.There still was discomfort but not as bad before I had the ERCP.Anyhow,10 years later I had what felt like a major blockage of the bile duct/pancreatic duct and ended up in the hospital.My GI determined I needed another ERCP to take a look at the pancreatic duct.I underwent that and they found the same thing as the first time.I ask them as well as My Father asked them what could be causing this,and they had no answer.Needless to say,ever since then I have had numerous bouts of pancreatitis that led to them saying I needed My gall bladder removed.I had that done and the condition got worse.That was six years ago now,then I developed a chronic pain in My left upper quadrant of My stomach that goes into my back just below the shoulder blade that feels like a knife is being stabbed in You.It just brings You to tears,pure misery!After going through numerous CT scans,MRI's X-Ray's and more ERCP's with putting stents in the bile ducts finally.Also I was put on Crean which helped a little but never fixed the problem.So after all the scans,test and labs,they still come up with no answer as to what is causing My LUQ pain.I have researched every possible thing that could cause this pain,and the one thing that everyone with this condition has said was the cause of the pain,the doctors tell Me that is not what is wrong with Me.The cause that I have found through research is that the pancreas is so enlarged from inflammation from the sphinter of the ODDI that the tail of the pancreas is stabbing into the spleen.The doctors tell Me none of the scans I have had shown this is the case with Me.I am at My ends with this and feel very helpless.If anyone can give Me any insight on this condition as to what kind of test can be done to find what is causing this pain.It would be greatly appreciated.The pain is so bad know it is causing trauma on My brain,I am making an appointment to see My PCP to discuss what My options are.I am still employed somehow and am seriously thinking about trying to get short term disability in order to focus on this more!Thanks in advance, Goodknight.

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oakbourne | @oakbourne | Nov 29, 2021

I would love to help, but gastroenterologists don't know a thing. They are the worst doctors on the planet. Your best bet is to go far and wide and find a doctor that cares, is intelligent enough to know the truth of matter at hand, and somebody with experience in the matter. Go with a doctor who has years in medicine and not some young whipper snapper. I need a colonoscopy and don't trust the endocrinologists who perform them.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 29, 2021

@blaise56 - Welcome to Mayo Clinic Connect! We are many posting here about similar problems, especially after having the gallbladder removed.
I have gone through same misery as you have had- including ER visits for acute and chronic pancreatitis.
The pancreatic pain is felt in the back and can be very severe.
Since they enlarged the opening of the bile duct the attacks are less severe.
It still happens after certain foods- I will have crampy pain and nausea for about 8 hours.
When you see your PCP you can discuss the possibility of getting a second opinion at a major university hospital or Mayo Clinic.
Have you lost weight during the past years?

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1 reply
milagrospierson | @milagrospierson | Nov 30, 2021

ad Director of the Dept. of Gastro and expert in Pancreatis diseases at Georgetown University hospital, Try a virtual visit for consultation. He saw me and I will see him again. I am not familiar with your problem, even-thought they have done the same procedures to me but instead de expanding the bile duct they have tried to reduce it. I had low back surgery two weeks ago and the pain has diminished.At present the are just monitoring it and notratment ;has been recommended. I am so sorry what you are going through, but I don't have any good suggestions to give you to help with your pain.

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blaise56 | @blaise56 | Nov 30, 2021
In reply to @astaingegerdm "@blaise56 - Welcome to Mayo Clinic Connect! We are many posting here about similar problems, especially..." + (show)
@astaingegerdm

@blaise56 - Welcome to Mayo Clinic Connect! We are many posting here about similar problems, especially after having the gallbladder removed.
I have gone through same misery as you have had- including ER visits for acute and chronic pancreatitis.
The pancreatic pain is felt in the back and can be very severe.
Since they enlarged the opening of the bile duct the attacks are less severe.
It still happens after certain foods- I will have crampy pain and nausea for about 8 hours.
When you see your PCP you can discuss the possibility of getting a second opinion at a major university hospital or Mayo Clinic.
Have you lost weight during the past years?

Jump to this post

Hello,thanks for the advice.I am going to talk to My PCP about refering Me to a Pancreatic center in NH.They are a university hospital,it is Dartmouth/Hitchcock You may have heard of them.They are supposed to be the best in this area.I have not lost any weight that is why the GI does not believe I have a serious condition.Thanks again for the help,I will keep you posted as to what happens with My PCP.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 30, 2021

@blaise56 - That is amazing that you can go to the Dartmouth/Hitchcock! I look forward to hear from you after you have been seen there. We can all benefit from learning about testing and treatments that you will go through. You won't forget us, right?

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misspeach | @misspeach | Dec 1, 2021

Good morning,
I have had very similar conditions for nine years. Same same; unexplained severe pain, GB removal gave relief enough to at least eat again- but not pain free. After years of ECRPs, pancreatic duct clearing and stents, hospital stays, pain meds, acupuncture, nerve block, and finally removal of my pancreas, spleen and redirect of bile from the liver to the intestine! That surgery was my last resort, its an intense, radical procedure- but I wanted to work again, and try for at least another 20 yes. Many do not qualify for the process, and its a long haul recovering, which is painful. From 6 weeks to a year. They transplant the insulin islets of the panc. in the liver, so you are insulin dependent until the islets get rooted. I've been lucky, my glucose levels are staying in range- but, my digestion is troubled, even with creon. Eating is a mixed bag, I try to get enough protein, good carbs and fruit, but still get nausea most of the time. I'm only 8 weeks out from my surgery, so the docs ask me to be patient!
I suggest you get help from a top rated team, like the Mayo clinics, University hospitals and such. That makes a difference, the experience they offer. I have been with the Medical University of South Carolina for about 8yrs, and they are top five in Nation for the GI Surgery team. Nowhere is going to be perfect, Mayo is also very good, but scattered across the U.S. Because of the opiate problem, having pain is now a personal struggle: I use hot water bottles and Tylenol, Zofran for nausea- dill pickles are effective for digestion and nausea, or any fermented food, like sourkraut or youghurt. Distraction really helps me, writing this response took my attention away from the malaise just now! Hope you can find the way through, I like to think of pain as a sensation we feel, not a part of 'who we are'.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 2, 2021
In reply to @misspeach "Good morning, I have had very similar conditions for nine years. Same same; unexplained severe pain,..." + (show)
@misspeach

Good morning,
I have had very similar conditions for nine years. Same same; unexplained severe pain, GB removal gave relief enough to at least eat again- but not pain free. After years of ECRPs, pancreatic duct clearing and stents, hospital stays, pain meds, acupuncture, nerve block, and finally removal of my pancreas, spleen and redirect of bile from the liver to the intestine! That surgery was my last resort, its an intense, radical procedure- but I wanted to work again, and try for at least another 20 yes. Many do not qualify for the process, and its a long haul recovering, which is painful. From 6 weeks to a year. They transplant the insulin islets of the panc. in the liver, so you are insulin dependent until the islets get rooted. I've been lucky, my glucose levels are staying in range- but, my digestion is troubled, even with creon. Eating is a mixed bag, I try to get enough protein, good carbs and fruit, but still get nausea most of the time. I'm only 8 weeks out from my surgery, so the docs ask me to be patient!
I suggest you get help from a top rated team, like the Mayo clinics, University hospitals and such. That makes a difference, the experience they offer. I have been with the Medical University of South Carolina for about 8yrs, and they are top five in Nation for the GI Surgery team. Nowhere is going to be perfect, Mayo is also very good, but scattered across the U.S. Because of the opiate problem, having pain is now a personal struggle: I use hot water bottles and Tylenol, Zofran for nausea- dill pickles are effective for digestion and nausea, or any fermented food, like sourkraut or youghurt. Distraction really helps me, writing this response took my attention away from the malaise just now! Hope you can find the way through, I like to think of pain as a sensation we feel, not a part of 'who we are'.

Jump to this post

Hello @misspeach

I certainly admire the proactive way you have dealt with your GI issues. It really is great that you found the best doctors in your area and have had the courage to go for this major surgery in order to feel better. This type of proactive behavior is needed by all of us who deal with chronic health problems that don't go away easily!

I'm glad to hear that your blood sugar levels have stayed in range.

Do you have a lot of personal support from family/friends or other organizations in your community?

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 2, 2021

@misspeach - I admire your brave decision to have the surgery! I understand the reason too.
I totally agree that the GI surgery department at MUSC is one of the best. I had MALS surgery there, successful. The surgeon gave me the odds of success- 50-50-, but I had to try- couldn’t live with my pain.
You had major abdominal surgery- healing will take time, many organs involved. Hang in there!
Did you ever try nausea wrist bands? Ginger?

REPLY
clutch | @clutch | Dec 2, 2021
In reply to @misspeach "Good morning, I have had very similar conditions for nine years. Same same; unexplained severe pain,..." + (show)
@misspeach

Good morning,
I have had very similar conditions for nine years. Same same; unexplained severe pain, GB removal gave relief enough to at least eat again- but not pain free. After years of ECRPs, pancreatic duct clearing and stents, hospital stays, pain meds, acupuncture, nerve block, and finally removal of my pancreas, spleen and redirect of bile from the liver to the intestine! That surgery was my last resort, its an intense, radical procedure- but I wanted to work again, and try for at least another 20 yes. Many do not qualify for the process, and its a long haul recovering, which is painful. From 6 weeks to a year. They transplant the insulin islets of the panc. in the liver, so you are insulin dependent until the islets get rooted. I've been lucky, my glucose levels are staying in range- but, my digestion is troubled, even with creon. Eating is a mixed bag, I try to get enough protein, good carbs and fruit, but still get nausea most of the time. I'm only 8 weeks out from my surgery, so the docs ask me to be patient!
I suggest you get help from a top rated team, like the Mayo clinics, University hospitals and such. That makes a difference, the experience they offer. I have been with the Medical University of South Carolina for about 8yrs, and they are top five in Nation for the GI Surgery team. Nowhere is going to be perfect, Mayo is also very good, but scattered across the U.S. Because of the opiate problem, having pain is now a personal struggle: I use hot water bottles and Tylenol, Zofran for nausea- dill pickles are effective for digestion and nausea, or any fermented food, like sourkraut or youghurt. Distraction really helps me, writing this response took my attention away from the malaise just now! Hope you can find the way through, I like to think of pain as a sensation we feel, not a part of 'who we are'.

Jump to this post

@misspeach
Is Zofran and pickles enough to control your nausea?
I would also suggest ginger chews and tea, as well as The Relief Band as @astaingegerdm has suggested. They both helped me some. If what you are using isn’t adequately controlling nausea, and you need some Rx recommendations, please let me know.

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