Well at least more people are experiencing the kind of things I have been going through.
I had my gallbladder removed on 31 Aug 2008. Since then I have had recurring RUQ pain
as you mentioned. In the same spot. I have had the ultrasounds before and after the gallbladder was removed. CT scan before/after. I only had one Hida Scan, before the gallbladder was removed. I had a MRCP after the gallbladder was removed.
How often were your attacks? Did they happen a couple hours after you ate? My attacks
don't last to long up to 1 1/2 hours. I have been taking HydroCodine, but really not sure if
it works or not.
Search for SOD Type III....
I have not had a ERCP yet.. I am not sure if it will cause more damage or not..
Thanks and good luck.
Nikib, they can't rule out SOD unless the ERCP was done WITH manometry. And it doesn't sound like yours was. In addition, if the blood tests for the enzymes were not done within a few hours of when the pain reached a peak, the values will be normal and docs will automatically rule out SOD.
Are you following a low fat diet? I know it may not change a lot of stuff, but it's worth a try. Also, have you tried anti-spasm meds or specific calcium channel blockers to try to 'break' the possible spasms? Or what about nitroglycerin?
Are you on pain meds? If they're a narcotic med, they will raise the pressure in the ducts and can actually cause more pain.
Inflammation where in the small intestine? Have you been checked for Crohn's or celiac?
consatant reoccuring pancreatitis is not acute,its chronic,and that puts you in a whole different ballpark my firend!
if you eat certain things...(greasy,fatty,dairy,lots of proteins exct)
or if you drink alcohol,and contine to do so,this will ALL cause the pancreatitis to act up.
every time you eat the pancreas has to do work to help digest,difference is with this condition,it does not release the needed enzymes,instead it acctivates them inside the pancreas,and its itself !,,so you realy got to get to a specialist if you want to have ANY bit of normal life with this terrible affliction.
they will give you supplamental enzyes so the pancreas doesnt have to do the work,and they will tell you what to eat,and what to avoid!
Thanks everyone for your comments! Hi Crambone - it is definately acute not chronic. I had an attack Oct 2007, then another one 2 months later, then gall bladder removed then 2 weeks after that had another attack. Then I had an ERCP in which they scraped out the bile duct and made a cut in the opening of it to avoid sludge building up and setting of another attack (not sure if they means with manometry or not). After this I have been fine up until last week. The good thing is I have private healthcare through work, and a very dedicated and trustwothy consultant/specialst who has always bent over backwards for me (even when he wasn't being paid - he looked into stuff when I had the migraines etc). My pancreatitus attacks did not seem to be set off by food and my diet is OK - I tend to not eat dinner in the evenings all the time. I haven't suffered nausea or vomiting the whole time either like some people do. The bloods were taken within 30 mins of the start of the attack and I was still having the spasms in the hospital, i had my bloods taken every day for the next 3 days. and everything was normal other than my CRP level which went upto 20 on day 2. Its been a week since I left hospital and i still have discomfort in my upper right quadrant (especially when I lay on my side at night) but its not painful enough for me to need to take painkillers so I'm not taking anything for it right now. My consultant said its probably too risky to do another ERCP at this stage as the risk is so high of it starting of an another attack of pancreatitus. I do have a strong family history of bowel cancer which is why he wants to do the endoscopy and colonscopy to rule that out. He expects those to be normal thou!
Oh and when I had an endoscopy it showed up a very tiny ulcer, gastritis and a slight sliding hiatus hernia (this was before the gall bladder removal). My uncle was misdiagnosed with Chron's disease for 5 years before they discovered it was bowel cancer (this was only found because my dad had bowel cancer and my grandad died of it), however these were all men in their mid to late 40's. I'm 32 and female and normally quite a healthy person. I was drinking one can of redbull everyday but cut down on this in case it was that causing pancreatitus (my consultant got his analysts to do some reseach on this and they found there were some links with redbull and pancreatitus but they weren't from a medical textbook and were unfounded links. All of this started 6 months after the birth of my 2nd baby so I wonder if the pregancy started some of this lot off!
Make sure you're checked for the possibility of autoimmune pancreatitis.
chronic is worse then acute just to let you know,so if your having more attacks thats chronic,,fyi!
haha - well its not chronic yet thank god - the pains i've been having recently aren't pancreatitus attacks, my amylase levels were completely normal, I haven't had one of those since my last ERCP shortly after my gall bladder removal last year so i'm hoping the pancreatitus doesn't come back, this is why he doesn't want to risk doing another ERCP in case it sets one off. This is a new spasming pain under the right side of my ribcage and only my CRP level is raised - all my other bloods have been normal, but whatever this problem is, it might have started off the attacks in the first place but god only knows! Guess i'll have to wait for the results of the endoscopy and colonscopy and see where we go from there! :o(
wow,glad to hear your pancreas isnt much the issue,i have a friend with issues,and thought i did for awhile,so thats scarry stuff.
why the colonoscopy for that?,,,endoscopy i can understand,,those colonoscopys can be very dangerious.
I have a very strong history of bowel cancer in my family - my dad beat it because they got it early, and my uncle was misdiagnosed with crohn's disease for 5 years, then died from it and my grandad died of it - so he just wants to check every inch of intestine and bowel etc just to rule anything like that out - he's not concerned that it will be that as they are all men in their 40s when they've developed it - but obviously wants to rule that out first before we move forward. Its def scary stuff when the docs can't tell you what's wrong with you!
I"m so sorry to hear that you've been suffering with so much for so long. You said that they've ruled out Sphincter of Oddi Dysfunction because your liver enzymes were not elevated. There are three different types of SOD and elevated enzymes are not necessary for all of the types.
I've had both the colonoscopy and upper endoscopy and both were a breaze. Nothing to either one of them. The worst part of the colonoscopy is the prep. It's horrible. The worst part of the upper endoscopy is the spray they use to freeze your throat. It's noxious and disgusting but take as much as you can so you are actually frozen.
Good luck and Godspeed,
Thanks Sam, well because i'm having them both at the same time I think they are going to knock me out completely (welll that's what I asked to happen and he said he would) so hopefully i'll know nothing about it, i had an endoscopy before and its not pleasant but I thought he was knocking me out for that and he didn't - he just sedated me, and didn't really give me enough sedation so I was very aware of what was going on - its not very nice but its over before you know it. Yes I'm not looking forward to the prep for the colonscopy I have to say!
I've had many (over 100) ercps and numerous colonoscopys. The trick to the throat spray was taught to me at Johns Hopkins hospital. If you take a deep breath before they spray, and then let the tech spray your throat real well while you hold your breath, then swallow and blow out before you take that first breath, it won't be so bad. I promise this helps if you do it right. I used to hate this throat spray stuff. It would make me want to cry just to think about it everytime I had an ERCP! Then a nurse told me how to do it and this works! You just don't want to breathe in the fumes...so, Take a deep breath in and hold it. Let them spray your throat real well, while still holding your breath swallow, then blow out before you breath in. It's not near so bad then.
Thanks, Pepperminpat77! That's a great tip. I've only had two ERCPs and one upper endoscopy but if I need another one, I'll definitely try it.
Nikib, please let us know how you make out?
All the best,
Thanks Peppermintpat77! Where are you based by the way - I dont' remember having to have the throat spray for my last endoscopy or ERCP - i'm in the UK! Just wondering if they do it once they've sedated me as i'm sure if it was that bad i'd remember it! Or maybe because they're sedating me they don't bother??? i'll have to ask my consultant lol!
How are you doing? Has there been any improvement in your symptoms?
You are in my thoughts and prayers.
All the best to you and yours,
Hi, aren't the people on this site just incredible!
I just wanted to let you know that I am in a similar situation to you in that I have had Pancreatitis, had my gallbladder removed, I am still having RUQ pain, nausea, hurts to sleep on my side etc... I am awaiting an endoscopy and colonoscopy and they mentioned the ERCP (which, thanks to Peppermintpat77, I feel better prepared for), however I don't want to get that done until I've tried the MRCP first. I just went to the clinic as I think I am suffering from Pancreatitis again, the nausea is constant and my abdomen and just under the rib cage are tender to the touch. The clinic doctor said my intenstinal track is inflammed (not sure how he figured that out with no tests) and sent me for blood work.
I am 31 and have four children so I understand how frustrating all these tests and symptoms are. Please keep me updated on how you are doing as I don't think I will be seeing a GI for sometime now. We seem to be backlogged here.
Hi Sam, as you can read, this last week has been really rough. I am dealing with thyroid issues as well. I am so tired. Life is still good though and I am looking forward to better health. I would email you back; however my yahoo account keeps freezing up my computer everytime I open it. I've never had this problem until I opened the yahoo account. I couldn't get in to email you today so send me an email to ***@**** please.
Be blessed and know I am thinking of you.
I'm just wondering how you are doing? How did you make out with the colonoscopy?
All the best,
Hi I also have similar issues and having trouble finding a doc to believe me since all my enzymes have come out normal everytime I go in(well lipase was 61 one over normal). I had URQ pain prior to gall bladder surgery to the point of total incapacitation HIDA scan showed gall bladder disease not stones. I had the gall bladder removed was pain free for two months then it started again -occasional tweaks then for the past two weeks total constant pain as bad as it was prior to the surgery. Have been in the ER and had a CAT scan which turned out normal ER doc said it was a nuero issue but since I still have a little naseau he referred me to a GI guy he knew just to be sure. GI guy would not run any tests on me and decided from the minute I walked in that it was a nerve issue-useless appt I think he thought I was drug seeking. I am now trying to find another GI guy in Spokane to see if I can get a second opinion. It is defintely related to everything I had experienced before and it is not a nerve issue. I have constant debilitating pain every day-when I eat large meals it aggravates-I noticed red meat also aggravates so I stopped eating these kind of meals. Sometimes I will get naseau halfway through a meal. I live in a podunk town with inadequate healthcare-Anyone know of a good GI doc in Spokane?? i have two friends that also experienced what I am going through and both were had the sludge removed and were pain free afterwords...how do they diagnose "sludge". The stupid ER doc said they could tell by the CAT scan and there was no problem with the bile duct but everything I am reading here states that ERCP is the way to diagnose
I'm so sorry you had to deal with this! I am so disgusted with these so-called medical professionals who are so incredibly gifted that they can diagnose you...just by looking at you. For a GI to decide what your problem was without the benefit of tests? And then to say you were a drug seeker to boot? That's pathetic. Please take the time to rate this "Doctor" at ratemds.com because people need to be warned about him. Remember to be honest because you are legally responsible for anything you write there. There are much easier ways to get drugs than to go from doctor-to-doctor.
ERCP is the best way to find it, from what I've learned but remember I'm not a doctor. There are some less invasive tests such as the Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) which can image the whole thing including pancreas and ductal system. The EUS does require sedation and is similar to an upper endoscopy. Once you have a Gastroenterologist, they might be willing to try an EUS or MRCP-S to determine what is causing your symptoms. Right now, EPISOD studies are being conducted in the United States which might be a way to get to the bottom of your symptoms without the cost if you qualify. I would try for an EUS first but that's just me.
I belong to a support group [SODP] that is wonderful. To find it, search the web for Yahoo! groups. Once you have the page where you can search the Yahoo! groups, search or "sphincter". There are about five of them. Only two of them are really worth joining. Michele's [Sphincterofoddi_pancreatitis] is by far the best as she is a registered nurse and an uncommonly kind, empathetic and supportive woman. Maddi's [sphincterofoddi-pancreatitis1] is wonderful, too. Just put in a request to join and within a day or two, they'll let you know that you've been accepted. Hopefully, if you join, you'll say "Hi" to me there?
All the best,
Check out: http://www.rockwoodclinic.com/services/digestive_health_center
All the best,
Hey Everyone - its nikib here, couldn't remember my password so i'm now nikib123 lol!
Well I haven't had anymore bouts of pancreatitis thank god, but I am still getting bouts of the spasm's of pain on the right side below my ribcage, thankfully it hasn't been as painful as it was when I was hospitalised at christmas, I'm managing the pain at home with paracetamol and buscopan but obv wondering why whatever this is isn't going away. I had the endoscopy and colonscopy and thankfully everything was fine, I was then due to have the capsule endoscopy but the arseholes at the private healthcare company decided that they didn't want to pay for that as it was exploratory, and they said that I already had a diagnosis (for the recurrent pancreatitis yes but not for this) so that was the end of that.
I have had little twinges come and go but nothing really serious enough for it to bother me, then in the last few days the spasms have come back and is generally worse when laying on my side. As I got made redundant at the end of January I have lost my healthcare, however i'm very lucky in that my consultant will continue to see me on the NHS, and I have just asked my GP to refer me to have the capsule endoscopy done on the NHS so hopefully I will get an answer soon. My bowel movements are pretty much always loose and never take much form, i've been looking up the newer symptoms and my consultant did once say it could be Crohn's disease. Although its normally Crohn's that can lead to pancreatitis, not the other way round, maybe i had it and never knew it who knows. It obv worries me as the chances of me getting bowel cancer are greatly elevated already - just glad i'm aware of it so they can monitor me as its one of the most treatable cancers!!
Hope everyone else is keeping well xx
Anyone got any ideas on something similar to Crohn's - as I don't seem to have any of the severe symptoms of that like joint inflammation, eye inflammation, skin lesions etc. I had a barium meal x-ray and that did show some thickening in my intestines so I guess I just have to wait for the capsule endoscopy for an answer!!