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SOD, ERCP and Manometry - any success stories out there?

I had my GB removed September 25, 2006 and have been having pains daily, which feel like gall bladder attacks, beginning 3 days following the surgery.  They occur when my stomach is empty and happen nightly, no fail since my GB removal.

My GI is sending me to see an experienced GI in Indiana who is supposedly very experienced with ERCP and with Manometry, as he (my local GI) believes that I have SOD.

I am VERY anxious and hesitant to agree to a sphincterotomy with the ERCP, should that be the treatment, and things are looking that way.

If you have had success with this procedure - PLEASE let me know.  I am only 32 years old, in good health (ran a marathon in the past year) and I have two little boys.  I am very worried about something worse happening post-procedure than what I am going through now, which is daily/nightly pain.  I have had weight gain b/c keeping food in my stomach seems to be the only thing to keep attacks from happening.  Any advice, or thoughts will be greatly appreciated.

Thank you.
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Avatar universal
thank you for your response,unfortunately for me. i live in canada..At times life is discouraging.i don't drink & drugs.so what happens next?should i go forward or just give up.i told  my hubby  there will be no third time.When i young  i had tattoo most doctor think loser.When i found out this time they only opened it a bit.i was disappointed.Why maybe he didin"t was of my allergy to metal etc.Any ideas to continue? thank you
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I've had the same problem that you all have been experienceing.  I've had 2 stents put in the pancreatice duct in the last year both will last for a few months then the pain comes back again.  My pain is up my back towards the left shoulder blade and right in the center of my stomach feels like im dying sometimes.  Ive been dealing with this since my gallbladder removal in sept of 2002 Ive had pancreatitis and with every stent placement i get pancreatitis, each time seems to be worse,  I also have daily pain, I also have no alcoholic steato hepatitis.  fattly liver with inflamation. Yet another thing to worry about.  I'm awaiting dr sherman at Indian Universit to review my medical records and let me know about getting an appointment.  I've heard that they are the best up there.
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i feel very discourage lately,why?Because in march 4/07 i had a intestinal obstruction,Next i was back to the doc with high liver problem,now came my ercp august 07.Great now i  just went through it again.,Guess again i'm  feeling lousy not wanting to do this process again.my pain is back life is bleak.will this ever end? help!!Now they say my pancreas is not well...Hope to hear some good news.
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sod
I've been dx with SOD & Pancreatitus for almost 3 yrs now. I have been in the hospital 4 times over the last 2 1/2 yrs. 1st time for MAGA PAIN and stayed hospitalized over a month & lost 40 lbs. Could not eat or keep the pain away. I had an ERCP w stents, on TPN 6 mos, relieved the pain to the point I had a life then the crippleing pain came back again. Pain lasted for over 2 wks could not eat or drink again and was in the hospital for over a month, ERCP again & stents. Pain resolved to bareable for 8 months and then again the pain came back,could not eat, MAGA PAIN lost 45 lbs again and hospitalized still another time for over a month, ERCP and stents. I still have pain but I can function with meds PRN. I try to stay off the pain killers. I always have chronic pancreatitus, so pain meds, watching what I eat and keeping the bowel cleaned are a way of life that I have adjusted to. Don't like it but I try to stay positive. MY QUESTION: Why can't someone come up with a stent that can stay in your pancreas so the Sphincter can stay functional. Each time the stents are placed they have cut to get them in and each time I get more scar tissue which causes more pain and spasms. Bile backs up in the pancreas, food can't digest and then the vicious cycle starts all over again. Pain killers keep you loopie and bound up, which makes the pain worse. Someone help us who have this problem. I have a friend with the same problem. This person is on TPN for over 9 mos., is getting a central line in for pain meds and weights 98 lbs. Thoughts and suggestions?????
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Avatar universal
So happy for you as I believe they always try to encourage managing it with drug therapy first.  Best of luck for long term relief.  Happy Holidays.
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Avatar universal
I have a new development, and it looks like at least for now, I won't have to go through ERCP and Sphincterotomy.  I have been having luck with the Levsin, antispasmotic, working.  I have not had attacks during the night for the past week!  Any attacks that I have been  have been only a tenth as intense as "normal."  So, as per the advice of my GI, postpone the ERCP, etc, and give my SOD a chance to heal on its own - whoo hoo!

Good luck to everyone out there.  I'll keep checking on everyone, and keep you posted should anything change on this end as well.
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Avatar universal
Best of luck with your surgery.  Do let us all know how you go.  There are a lot of us living with this pain.
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I honestly do not notice any difference at any time - it never seems to change.
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Just curious if as a female your symptoms seems to worsen mid-cycle and around your menstrual period?  This seems to be when my abdominal pain is at is worst.  The gut/hormone connection doctors can't explain or look at you like your crazy when you describe your pain.  I went through a period where I felt like I could feel my pancrease area churning, gnawing, whether I had eaten recently or not.  I couldn't even describe it and the Gastro just gave me the blank look.  Hang tough everyone and extra prayers for eveyone suffering this holiday with these complex medical issues.
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Avatar universal
Here are my opening comments - I had my GB removed September 25, 2006 and have been having pains daily, which feel like gall bladder attacks, beginning 3 days following the surgery. They occur when my stomach is empty and happen nightly, no fail since my GB removal.

Knock on wood, my muscle relaxers seem to be working for the past 4 days - NO ATTACKS.  It feels like a miracle.  However, prior to this latest development I would have pains anytime beginning 3am through 5am, sometimes one attack, but most times multiple attacks.  They feel like gall bladder attacks, under right rib pain, also through my back.  Only yoga breathing and relaxation would get my through the attacks.  They did not cease unless I ate food.  The worst night last week were 10 attacks between 3:15am and 4:15am (I was trying to get my 3 yr old back to sleep, and couldn't leave the room, but finally did and of course he followed me downstairs to the kitchen...). I finally ate some yogurt, and they stopped, and I had another one at 7:30am before I could eat again.  It's not just at night, but that's when I haven't eaten for 5+ hours, it has happened during the day time if I have gone w/o food for that long as well.

The "attacks" wake me out of sleep, and I can feel them sort of radiating toward a full blown intense pinching or stabbing pain at the gall bladder region.  They last anywhere between 5-10 minutes, then gradually decrease back down.  If I don't eat following an attack, they will keep on coming, and eventually just blend from one attack into another, never really going away completely.

And, that pretty much sums up my experience.  What are yours like?


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Avatar universal
I wanted to know what type of symptoms you have had during all of this?  I am still dealing with some other issues but not sure if it is due to other GI problems.  Let me know, thx
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I had ERCp 2 times in indiana my last one was at IU hospital w/ Dr. Lahman.  I think he saved my life.  I also had SOD but it took a while for anyone to believe me until they gave me Morphine,so don't let anyone give you that it block your bile ducts and is the worst pain along with the worst nausea.  I had my gall bladder out first which made everthing worse and i am still trying to find out a lot of answers for other GI problems.  If you are going to IU you are in great hands!!!! Trust me, i am 33 and have an 11 yr old and I thought my life was over,he found that I also have pancreatic divisum as well as SOD when 7 other GI doctors and 13 trips to the ER could not find anything wrong except that i was going crazy.  I have always been healthy my whole life until March 2006.  Let me know how you do, just remember not to have to many ERCP's cause it can scar your ducts and make problems worse but I had 2 within 1 week apart and the nauseahas completly went away and the pain is very dull and not every day anymore, it is functionable.  GOOD LUCK, if you need anymore info, email me at bragjlbaol.com
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Avatar universal
THANK YOU so much for the positive comments.  I am also going to IU not with Dr. L though, with Dr. Sherman, and as I understand it, they are basically partners and work together.  They have been published together, I do know that much.  For some reason, divine intervention I think, my Levsin has started actually WORKING this week - knock on wood.  I am going to call and find out if I should give the Levsin a chance to permanently relax the muscle, or if that's not a possibility...I just don't know.

I greatly appreciate your comments.  You probably understand how important it is to me to find out good things with the IU docs, and especially positive stories regarding ERCP and Sphincterotomy specifically.

Good luck to you - I'll keep you posted!!!

Thanks!
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I'm praying that you are a success story and hope you can let us know your positive outcome.  Godspeed to healing.
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Well, I am scheduled for ERCP and Sphincterotomy the first week of January.  Wish me luck!
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Too wierd indeed.  From my research, spontaneous rupture of a dermoid is rare .2-2%.  I was my gyn's first case in 1998.  The urologist I saw last week never heard of a case either.  Are you saying there is no plan to remove the cyst with surgery yet?  How big is/was it?
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Sk8flo - thank you SO much for your positive comments.  I am very scared of this procedure and I think it's because of all of the negative stuff that I have been reading.  I would love to know where yoiu had your procedure done - I have been referred to a doctor who is very versed in ERCP and sphincterotomy from Indiana University.
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Success story - yes, I had an ERCP and sphincterotomy the end of September.  My doc always keeps his patients overnight and per my request I had a general anesthetic.  Did have a mild pancreatitis the next day after he let me have breakfast, so I stayed one more day in the hospital.

My presenting complaint to my internist was mild constant epigastric discomfort, unusual fatigue, early saiety (feel full after eating small amounts.)  Lab work was all normal including LFT's but the ultrasound and then a CT scan showed dilated bile ducts up into the liver.  I had my gallbladder removed 16 years ago.  The theory is that micro stones and sludge cause a chronic irritation/inflammation to the SOD and it narrows down.  Doc did say that a big gush of bile came out when he did the spincterotomy.

Have been fine since then - no more pain.

Nationally, the incidence of post ERCP pancreatitis is 5%, my doc claimed his was 3%......the key is to have someone do it that does a lot of them.  I was lucky as I work in a hospital and got consistant recommendations from a number of various sources that all said this doc was the best.

Hope this helps.
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My cyst when found was 10cm, and they thought I would need surgery.  I was not having any symptoms to speak of, no pain, etc.  The first visit to my OB which was 5 days following the CT that revealed the cyst, during the ultrasound the cyst measured 5cm - shrunk to HALF of the original size in 5 days.  So, we are watching it to this day to make sure it gets down to a safe size, and it almost is.  My OB wants it 3cm or smaller, and I am almost there.
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LOL I am originally from Avon Lake, OH.  I am in the Columbus area now - small world!  My cyst is also a Dermoid tumor, also ruptured, but instead of becomign a problem, my body is just reabsorbing it.  What strange and parrallel situations we have had...very odd!
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Yes, the Levsin (Librax) doesn't take away that feeling either.  I'm glad the ovarian cyst is being monitored.  I have a rather complex history as I had a dermoid ovarian cyst rupture and cause peritonitis back in 1998.  When they took my gallbladder out I had massive adhesions taken off my liver.  I'm originally from Lakewood, OH.  Good Luck.
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Further commnet - I have also been prescribed Levsin, same as Librax I believe, and it has done nothing for me.
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Mermaid, thanks for your comments.  I had the MCRP, also a CT and am due for an EDG (I think that's what it's called).  So far everything is negative, no abnormal liver functionality tests, etc.  I also found other things on the CT and MRI - a huge ovarian cyst that I almost had to have surgery on, but it started shrinking in it's own, and now we are just watching it.  Thank the Lord!

Good luck to you as well - this ERCP especially with Sphincterotomy is scary stuff.
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I thought this might be my problem and still really don't know.  I had an MRI/MRCP in late Oct. at Emory teaching hospital in Atlanta because my regular Gastro said probably IBS.  My instinct says otherwise.  They can perform this test first since it is not invasive.  I still have under the rib pain left and right and am currently on Librax, an antispasmodic.  I am currently going to a Urologist, as complex renal cysts were found on my MRI.  Sounds like you are on the right path and I know it seems frustrating as when I was researching SOD it seemed like success stories couldn't be found, the risk of ERCP etc.  Your doctor can give you the facts from his experience so ask these questions.  Stay positive and good luck.
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