I have tried various treatments for pain including oral medication. IV pump, Celiac Plexus Blocks, trigger point injections, stents in all ducts and diet restriction including NPO. Is there anything out there that may be a variation or combination of treatments that has worked for you? I have Pancreas Divisum with chronic pancreatitis and have become sensitive to many medications. My pain is progressing now and I would like to have an option to discuss with my physician. Thanks to all!!
Hi Everyone,
I have written on this site some months ago so forgive me if I repeat myself. Like many of you, I have had some awful experiences with GI docs who either don’t know anything about CP or do and refuse to treat the pain for whatever reasons (I do think much of it is pressure by the authorities concerning narcotics). I finally found a doc who has been treating me with Vicodin which has helped but I have daily breakthrough pain which is helped for some reason by xanax. I am very careful with my doses. Unfortunately, he has retired and I am going to be seeing someone else in his office. I pray that he has a similar compassionate approach. The doc who retired was starting to suggest that I go to a pain clinic but he couldn’t even come up with the name of one in my area! They are mostly sports medicine clinics and do not deal with CP at all. I had a terrible experience with a company that works with my insurance company but am wondering if there is something to what they suggested. The awful woman that I spoke with, after accusing me of being on a “dry drunk” mainly because I didn’t use AA to stop drinking years ago, said that the “new” method of dealing with CP pain was tricyclic antidepressants and compared it to “phantom limb pain.” I think she was incredibly inarticulate about this but I have read that it has been used here and there sometimes successfully to blunt the pain of CP (it is NOT a common course of treatment like she was implying). Has anyone else heard of this? I am not really hot on the idea of antidepressants as I am more anxious, frustrated and p*&((^d off than depressed and it seems more like a way to blow people off who they really don’t know how to treat. Any thoughts?
Also, the ONLY symptom that I have had for four years now is the pain and all the tests are coming back with a small area of calcification on the head of the pancreas. Blood tests are normal, no weight loss, great appetite, no nausea, nothing like the awful symptoms that I have read about on these boards. Could I actually have some other problem? Once the first GI doc saw the calcification (the size of which hasn’t changed since 2007), I have officially had this diagnosis. No one has looked at anything else. Is a calcification an automatic gold standard for this diagnosis, especially with the absence of any other symptoms? I am starting to get very confused about this. The pain is definitely real but I am starting to wonder about the diagnosis. Any thoughts? Thanks
I don't think mine is as bad as yours. But my acute pancreatitis was brought on by taking hydrocodone, It build up in my system and cause the attacks. I have had this for 6 weeks now. I am now a diabetic because of the pancreas attacks. Have been in hosp.s 3 time in 6 weeks.
The only medicine that helped me was nuhbane given by shots. Then they put me on stadol you sniff it every 3 to four hours. It is the only thing that helps. Other than the nuhbane. not sure of spelling. I sure hope you can find some relief. I know the pain is horrible.
Hello: I was diagnosed with hereditary pancreatitis in 2004 with many stents and eventually had the Puestow procedure. The stent created adhesions on the pancreas and engulfed it that made it difficult to do surgery. But I am on the Fentanyl patch with oxycodone for the breakthru pain. I know how miserable you are and is difficult to explain to physicians. Stress and food cause my pain. My doctor put me on Zoloft to control my stress and It made all the difference with the level of pain I had and eliminated the attacks. Please just give it a try because if you journal your attacks and pain, you will find stress is a big factor. Isn’t this the worst disease to have and so misunderstood. Networking with groups that have this disease to the best route to take in helping yourself. Good luck to you and all of you that read this. Hope this helps. Candice from Louisiana.
I also am hesitant when they begin talking depression. For one thing, it seems when they get on that bandwagon, they forget about the primary issue- your pain and illness. Besides, who wouldn’t be depressed or have anxiety trying to deal with constant pain, not being able to eat, nausea, having your life turned upside down and all these idiot docs. So I am leary about anti depressants. If they help, great but just don’t lose sight of the main issues.
In my opinion depression needs to be treated when the reaction (depression) is out of proportion with what is going on in your life. Yes, I have some depression but take a look at my life. It is absolutely in proportion. You’d have to be crazy to not feel this way when faced with what we deal with daily. Hang in there!!!
I have had Chronic Pancreatitis for a little over 9 years and have been through the mill on pain relief. I started taking a herbal pill which has tumeric in it (tumeric is a natural pain killer). This herbal concoction has allowed me to no longer take the 240 10mg percacet I had been taking each month. I still have it on hand in case I need it but I am taking about 80-90% less than I was. Tumeric is available in capsules at herb shops, I know it sounds imppossible but it works, I even checked it on pubmed.gov If you have any questions please feel free to email me at fields6@comcast.net I have great hopes that through this site we can all help each other!
I have had cp since Dec 2004. I, like many of you, have had nightmare experiences. The medical profession, unfortunately is just not up to the task of understanding or responding to our issues with compassion or empathy.
I wanted to respond to this question in the hopes it might help someone. I have been under the care of a pain specialist since 2005. My first Dr there was mean to me and horrible, but after she left the practice I was transferred to Dr. Michael Amster. He is wonderful, a true champion for his patients. I have had all the usual narcotics, anti emetics, etc. For a time the fentanyl patch ( which I had problems with). He tried 2 separate celiac plexus blocks but they didn’t do much. After much haggling with my insurance company we finally gained approval for a spinal stimulater. I had it put in last Sept.(2010). While I still have some pain, it is much less than before. I rarely have to seek out the Emer. Dept. It has reduced the anxiety from never knowing how bad it will get. I had hoped to be able to get off the pain meds (Tramadol, Methadone and MS contin w/ dilaudid for prn) I have been able to reduce them quite a bit. Dr. Amster plans to write a medical journal about my case as this is a rather unusual use for a spinal stimulator.
As for a homeopathic remedies I tried Bowen therapy at one point. I can no longer afford it or I would still continue going. It didn’t really eliminate the pain, but rather it settled my spirit. I felt stronger and more centered after treatment, better able to cope. As you all know all too well, this disorder wears you down in every way. I find it a shame that we are handed all these pills and pharmaceuticals, yet the things which would help bolster and strengthen our spirit are often too expensive, such as massage, acupuncture, bowen, etc. It’s too bad there isn’t some way to subsidize these practicioners so it is available to more suffering people. Then again, don’t get me started on our health care system. When you are sick and suffering, you often don’t have the strength to fight for what you need. It is the last thing a sick person should have to worry about.
I hope this helps. I remember all too well how frantic I was in the first several years. I still have nightmares about how traumatized I was. I am terrified that I will once again find myself that sick. I know that CP doesn’t get better, only worse.
I am so sympathetic with each or you... do any of you live a life that includes forcing a living behaviour that goes beyond Mr Pancreasis's pain? Exercise is a life source to me..stretches for those horribly tight and crampy/painful muscles..slowly..slowly.. I can elaborate if requested..
And yes, we need the narcotics( and god,are you lucky whoever you are..a little MJ.. )
Good wishes to you all, be well,
Cate
Hi, I was diagnosed with Pancreatic Cancer 7 yrs ago and had a Whipple in 2004. I have now been dealing with chronic pancreatitis for the past 5 years. I have tried everything imaginable for pain and nausea. I am now allergic to all pain and nausea meds except Dilauded, Vicodin, and Phinergan. For years I was hesitant to try medicinal marijuana but I was on the bathroom floor one night with severe vomiting and dirrhea and asked my husband to get ready to take me to the hospital… instead he came and blew a big puff of smoke in my face (I was livid) but with in 5 min he had me back in bed and I slept the rest of the night.
After discussing MMJ with several of my Dr’s my Dr at a Major Research Hospital immediatley said “great” we need to get you off of all the narcotics with the exception of recovering from surgical procedures and break through pain.
I was started on Nortriptalyn and Maronol, and had a major reaction to the maronol and the nortrip made me suicidal. After some adjustments I am finally on a regimin that works:
MMJ for nausea and pain management, it doesn’t totally eliminate the pain but it makes me not care about it, and it increases my thirst and appetite, and I have none of the awful side effects from the other pain meds anymore.
I am also on Wellbutrin which has actually been helping with some of the abdominal/ bowel pain.
I was the biggest skeptic at first but I was willing to try anything to get some quality of life back and the change has been amazing. I am willing to answer questions privately if needed.
Best wishes to all who struggle with daily pain and Nausea. I read the questions and posts here often but I am usually to tired or sick to respond, however even reading the posts reminds me that I am not alone in this, and can even raise my spirits.
PK