I am a 33 year old female who has been fighting pancreatitis for the last year and a half. I haven’t been able to eat so I have been on IV nutrition for almost the whole course. Due to the fentanyl I have been on my gut has shut down. A couple of weeks ago they put in a feeding tube (j-tube) which I have not been able to use because I get extremely nauseous with it - which nobody can figure out either since it is below my pancreas. I have had 9 ERCP’s, numerous stents put in but removed due to clogging up and I have seen a lot of specialists over time. I hate to make a big deal about this after reading some of your stories but I would like to be able to eat normally if that is even possible anymore. If anyone has any information on j-tubes etc I would greatly appreciate it. THANKS
I am 24 years old with pancreatitis and pancreatic divisum. I, too, have had many surgeries trying to open the pancreatic ducts and have problems with digestion. I think someone finally nailed things on the head with the exhaustion thing, but i have denied the feeding tube. i’ve had 5 ERCPS, stents, and everything. i am getting ready to have a bilateral splanchnisectomy. Please look it up becuase they’ve done it to 60 people here in Indianapolis and all have responded and been pain free- some only have 3-6 months but some have 3-4 years. i’m going to see a Dr. Howard. I’ve been to so many doctors that just tell me I’m SOL once the ERCP’s don’t respond. I was going to have a transplant and a feeding tube but i went to see Dr. Howard about a different surgery and he told me to absolutely not have those treatments and i’m really feeling like i might have found a solution. Maybe you should check into this procedure since it seems like you’re in the same situation like me. I’m wanting to eat normally and not be on fentanyl everyday!!! Good luck.
Thanks Nicole - I’ll do some research on it!!
im curious, when u say they did ercp and ur SOL if it did not work what exactly did the ercp do or should of done, was it thereputic alone or was something else done while they did the ercp. reason i am asking is i had 2 ercps and felt temp releif in my belly and back yet they did nothing more then explore and i gather stretch the common bile duct no stent was used. can u get temporary releif from the procedure .
im curious, when u say they did ercp and ur SOL if it did not work what exactly did the ercp do or should of done, was it thereputic alone or was something else done while they did the ercp. reason i am asking is i had 2 ercps and felt temp releif in my belly and back yet they did nothing more then explore and i gather stretch the common bile duct no stent was used. can u get temporary releif from the procedure .
I’ve never had relief from just exploring during an ERCP. They’ve gone in and besides my first one, they’ve done a sphincterotomy during the ERCP, which is when they cut open the duct to try to expand it. I only had the stent once but they’ve cut 4 times. That’s when i had relief, when they cut. hope that helps! They usually tell you if they did something during the ERCP, otherwise, you’re right, they did just explore. Good luck!
The times they went in and did the ercp’s - the first one they cut the sphinchter of the pancreatic duct. The other times were to explore and put in longer stents. personally I have a stricture at the end of my pancreatic duct - no divisium - so we keep trying to expand the opening.
The opening of my pancreatic duct is full of scar tissue as well, which is why they kept going in and cutting it. It would always scar right back down. They put in a stent for a few weeks to try to delay the scar tissue while healing but it didn’t do any good. So you have a permanent stent? that’s interesting. And it still scars down? Is that the direct link to your pain?
I do not have a permanent stent. my stents kept clogging up even though they tried putting bigger ones in. The pain is related to the stricture but my body doesn’t do well at all with the stents. I have had a total of 5 different stents put in. the last two they put in were about a couple days apart a 5 french then a 7 french. so my stricture is holding right now not sure the size of it but I haven’t been eating much either to test it out. The last CT I had indicated that my pancreatitic duct was dialated but not terrible. I take viokase so the pancreas really doesn’t have to do much for what I’m eating. I do real well if I don’t eat but that is not a real productive solution either. Nicole I tried looking up that procedure you are going to have and couldn’t find it - would you mind checking the spelling for me - thanks
this tells you more about the procedure than the results.
http://www.surgerysymposium.org/abstracts/laws_6-09.html
the correct spelling is splanchnicectomy. thanks. check out this site: http://gastroenterology.jwatch.org/cgi/content/citation/2002/430/5
I've never heard of the enzymes that you're on for eating, but i wrote them down! I haven't gotten relief from enzymes but i do have trouble eating so i'm going to ask to try those! thanks!
try this site instead. http://www.blackwell-synergy.com/doi/abs/10.1046/j.1365-2168.2002.01988.x?cookieSet=1&journalCode=bjs
yes they did cut and i gather thats why i had temp relief , they said that my pancreas had no scarring as of yet from the common duct being blocked they said it may take up to 5 yrs to see changes in the pancreas after many bouts of ap, i continue with pain in my belly and back alot (more in my back )with at times severe nausea, i gather ill wait out the 5 yrs to see if any change in my pancreas occurs. crazy disease !!
doreen im so srry to hear bout ur grandson, its terrible to hear bout all the adults that have to deal with this awful disease but far more disturbing to hear that young children are robbed of their childhoods because of debilitating pain and uncertainty. when i think im on my last wind i come here and see that so many are on their knees along with me and we all suffer 2gether . i realize their are others so far worse then i am and they stand up against this with hope and determination in finding releif for not only themselves but to share what ever they can with others in hopes that mayb they can help some1 with their info or just a kind word or an open ear, my prayers are with all of you.
Nancy:“they said it may take up to 5 yrs to see changes in the pancreas after many bouts of ap…” It seems counter-intuitive, but I have recently been reading some of the same stuff. So it seems, that even after taking the necessary meds and making the necessary lifestyle changes, things might continue to get worse. I thought that since I already show scarring and fatty deposits in the head, tail, and duct of the pancreas, that that was it. All we can do is try and do the best that we can. It is good to know that there are others out there who can relate. Take care, all.