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kimw

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Joined: 21 Nov 2004
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Location: South Carolina

Sphincter of Odi Dysfunction Posted: 11-21-04 08:31am


I had my gallbladder removed 6 years ago and never felt better. My hidascan showed a nonfunctioning gallbladder, ultrasound showed gallbladder polyups (supposed to be asymptomatic and benign). Over the past 4 months my dull-aching right upper quad. Discomfort has returned. The sypmtoms are exactly the same as before my gallbladder was removed. Dull, aching constant discomfort under right ribs. Worse after meals. I have changed my diet to very low fat and have been taking herbs (golden seal and milk thistle) which have lessened the area of discomfort but have not totally made symptoms disappear. Have had a ct and abd. Ultrasound and a visit to a hepataspecialist. He suspects sphincter of odi dysfunction and wants to do an eus/ercp. I am trying to delay this as I don't want to introduct infection or disturb anything. Any suggestions? Has anyone tried a total herbal liver cleanse with success or acupuncture?

MeScorp

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If You're Still Out There... Posted: 01-14-05 02:22am


I had my gall bladder removed in feb. Of 2002, and have also had the same problems you're having. After I had my gall bladder removed, within a month I had no appetite at all and rarely ate anything. I was rapidly losing weight and had a general malaise feeling all day, every day. I still had the same symptoms from before my gall bladder was removed as well. The dull, aching, radiating pains and same type of discomfort. I had the ercp done and they found that there was a lot of bilary sludge in the sphincter of odi, and also that the opening was no longer wide enough to carry the bile through fast enough. They widened that opening and though I can't tell you that the procedure has made all of my symptoms go away...It definitely helped. To this day, I still have gi problems and have never felt the same from before the gall bladder removal, but the ercp helped enough to get me through some of the hardest parts of it. You should talk with your doctor about having the ercp. It does have its complications, but it may be well worth it for you.

kimw

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Sphincter of Odi Dysfunction Posted: 01-14-05 06:01am


Thanks for your reply. For what it is worth, my symptoms have resolved. I did a non traditional route of herbs and accupuncture before having the ercp. I am a medical professional, but still have a hard time with accepting invasive procedures, when all of my labs and cat scan and ultrasound were benign. The herbs I took were milk thistle, and yellow dock (go to your local health food store and get suggestions for taking). These herbs are known to cleanse/or assist in liver functioning (which must work harder as we do not have a gallbladder). I also used heat to the area. This helped a great deal (over 2-3 months, the discomfort really did lessen, but was not completely resolved. I next tried accupuncture. The accupuncture is wonderful. My accupuncturist combined traditional accupuncture with suction accupuncture and massage. It is believed that relieving congestion in the area of the gallbladder (even if we don't have one) and improving the circulation to the area will help (and it did!). Accupuncture has been practiced for many more years than western medicine...There has to be something good there! Good luck, but I suggest you find a certified accupuncturist and combine eastern and western medicines! (its worth a try, it just might work!)

Pamfele

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Pregnancy After Cholecystectomy Posted: 01-19-05 18:22pm


Hi...I had my gallbladder removed in september. No stones, but pretty severe dyskenisia. I am 34 years old. After lap surgery, most all symptoms went away, and felt much better! Now I am expecting...About 6 weeks (?)...And unfortunately, some symptoms are returning. Soreness on my right side, sharp pain center of abdomen, bloating, etc. Not as severe, but I am worried it will only get worse during the next 8 months. Anyone out there experienced this or heard of something similar? Thanks,

kimw

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Joined: 21 Nov 2004
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Pregnancy After Cholecystectomy Posted: 01-19-05 19:36pm


I became pregnant during the initial work-up of my gallbladder. In fact, I need to know the date of my last menses for my hidascan... Period was two weeks late and pregnant!!! Needless to say, I did not have the hidascan, and postponed my cholecystectomy. My symptoms disappeared during my pregnancy, though I did schedule a visit with my gastroenterologist, who was aware of my pregnancy and was available during my pregnancy if needed. I carried a full term pregnancy, without complications or problems what so ever! My symptoms returned 14 months after the birth of my child, (interestingly, I stopped breastfeeding at 12 months...Hormonal component to the dysfucntion???). I went on to have the hidescan, and subsequent laproscopic surgery, and the story continues as above...

awsalz

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Odi 'n Me...going On 13 Years Posted: 08-12-06 10:30am


I have had this problem forever. One year after my gallbladder removal it began, and I would rather have a baby everyday than to go through this as I do. Doctors tagged me as a drug seeker, they had no idea what this was. I had 13 invasive procedures, 6 ercp's for stents, fileting of the sphincter, stent removal, etc. I have been on everything they can prescribe to no avail. Until 3 years ago, I was a constant er visitor and took note of the eyeball rolling the doctors would do. If they couldn't see it, it didn't exsist. You know how they are. I finally was sent to a pain clinic, and am currently on morphine extended release, oxy for break through pain, antidepressants, and trazadone. I take handfuls of prilosec everyday for the accompanying gerd, and bless every day that I am not doubled over crying and whimpering in pain. I had to be talked into taking the pain regimen, and was told I would probably be on this for the rest of my life. I was freaked out by this, and eventually decided to go for it since the odi dysfunction was interferring with my life and my work. (i would be in a meeting and in the middle of a sentence and have an attack - fullblown 10+++ attack-i'd have to leave meetings and go lay on my back in my office on the floor with my knees bent and breathe through it.) these attacks last anywhere from 30 seconds to 7 days. Recently, my doc was on vacation and I was denied my pain medication which is immoral, but it happened. I was straddled with withdrawal and the most incredulous odi pain I have had in years. I am still trying to heal from these last attacks that just won't go away. I am certain I have pancreatitis now and have lost close to 10 pounds before I got my meds back. I could sue, I am sure. Anyways, I am now attempting to become a vegan - no dairy, eggs, etc...And see if that helps. I don't want to be on these medications for the rest of my life. I need to find a good naturopath to see if they can help. Anyone know anything about accupuncture/accupressure that would help? I am riddled with pain and guilt about taking all these narcotics. I have heard of folks who have to be on a morphine pump constantly for this. I do not want to be headed in that direction. Please respond! Thanks.

awbmwm3

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Re: Odi 'n Me...going On 13 Years
Posted: 03-19-07 16:17pm

awsalz wrote:

I have had this problem forever. One year after my gallbladder removal it began, and I would rather have a baby everyday than to go through this as I do. Doctors tagged me as a drug seeker, they had no idea what this was. I had 13 invasive procedures, 6 ercp's for stents, fileting of the sphincter, stent removal, etc. I have been on everything they can prescribe to no avail. Until 3 years ago, I was a constant er visitor and took note of the eyeball rolling the doctors would do. If they couldn't see it, it didn't exsist. You know how they are. I finally was sent to a pain clinic, and am currently on morphine extended release, oxy for break through pain, antidepressants, and trazadone. I take handfuls of prilosec everyday for the accompanying gerd, and bless every day that I am not doubled over crying and whimpering in pain. I had to be talked into taking the pain regimen, and was told I would probably be on this for the rest of my life. I was freaked out by this, and eventually decided to go for it since the odi dysfunction was interferring with my life and my work. (i would be in a meeting and in the middle of a sentence and have an attack - fullblown 10+++ attack-i'd have to leave meetings and go lay on my back in my office on the floor with my knees bent and breathe through it.) these attacks last anywhere from 30 seconds to 7 days. Recently, my doc was on vacation and I was denied my pain medication which is immoral, but it happened. I was straddled with withdrawal and the most incredulous odi pain I have had in years. I am still trying to heal from these last attacks that just won't go away. I am certain I have pancreatitis now and have lost close to 10 pounds before I got my meds back. I could sue, I am sure. Anyways, I am now attempting to become a vegan - no dairy, eggs, etc...And see if that helps. I don't want to be on these medications for the rest of my life. I need to find a good naturopath to see if they can help. Anyone know anything about accupuncture/accupressure that would help? I am riddled with pain and guilt about taking all these narcotics. I have heard of folks who have to be on a morphine pump constantly for this. I do not want to be headed in that direction. Please respond! Thanks.

I hope this is coming out right. I see your from Ohio I just went to cleveland clinic, they are great there! I will be having a endoscopic ultasound to look for scaring also I was diagnosed last year with Pancrea Devesum and had 2 ercps for correction ( very like odi correction) to no avail. I had a seperate hospitol tell me I have Odi, the procedure will also confirm or deny this. All I can say is check on them my doc is Dr Tyler Stevens and he's inquizitive, and want top help. Look him up he has done alot of things for the pancreas. Good luck don't give up. PS have tme check Pancreas Devesum it is a birht defect iwhich in getation the pancreas forms a two pieces and there is a abnormaility when forming.

awbmwm3

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Re: Odi 'n Me...going On 13 Years
Posted: 03-19-07 16:18pm

awsalz wrote:

awsalz

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Re Cleveland Clinic & Sod Posted: 03-20-07 16:48pm


Hi, thanks so much for your information. I have heard that there is a SOD specialist at the clinic, and since I have Kaiser, am awaiting for the clinic to send me an appointment date as Kaiser has referred me to them. I recently experienced a bowel obstruction in the small intestine from constant spasms that won't quit. I had an NG tube that helped a whole lot. Don't want to ever do it again. I am so glad to hear that you are happy with what is going on there. I cannot wait to get there! May I ask you, are you on medications for this and if so, is it helping you? I am very curious as I hear some people do better without any medications. Thanks and write again! awsalz

awbmwm3

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Re: Re Cleveland Clinic & Sod
Posted: 03-21-07 16:18pm

awsalz wrote:

Hi, thanks so much for your information. I have heard that there is a SOD specialist at the clinic, and since I have Kaiser, am awaiting for the clinic to send me an appointment date as Kaiser has referred me to them. I recently experienced a bowel obstruction in the small intestine from constant spasms that won't quit. I had an NG tube that helped a whole lot. Don't want to ever do it again. I am so glad to hear that you are happy with what is going on there. I cannot wait to get there!
May I ask you, are you on medications for this and if so, is it helping you? I am very curious as I hear some people do better without any medications.
Thanks and write again!
awsalz

Hi I think you will be very happy with the clinic they are great and the hospital is impressive. If you would like some reading material log onto cleveland clinic .org and look at the digestive center, from there you can access "what they treat" there is some iformation I'm sure you know and some you don't. Right now becouse my initial diagnosis was Pancreas Devesum which is similar but a birth defect the only meds I'm on are pain managment, Im on Fentanyl pain patch at 75mcg/hr and dilaudid for breakthrough. The patch keeps things more level instead of alot spikes of pain, and both keep me off alot of acetametaphin. all in all I can function day to day but for instance I got real sick today slept all day, can't stay out of the bathroom and my heart feels like it's going to pound out of my chest. They don't help that. I had a doc at a small hospital that admitted me after an ER visit gave me lipace pills because he felt maybe my pancreas was not working well anymore. They did not seem to do anything either way. Let me know I go for another Hyda scan Friday and the endoscopic ultra sound. retrograde 4/5. Good luck and chin up

sillyakchick

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Spasm Relief Posted: 04-12-07 11:57am


I am new to this site. it is so hard to find others who have experienced this problem. I have Type III, so ERCP is not very likely to help. I have sought pain management, and they put me on Fentora, which dissolves between your cheek and gum for break through pain. i also received a certificate for medical marijuana which helps immensely. The most helpful thing to me has been acupuncture. I have pain 2-4 times per month now instead of daily. I also take Cholestyramine which is a cholesterol medication, but it's off-label use is to bind excess bile inthe stomach. I take this before I eat. I wish there was more information on this topic. i have read recently that biliary problems are associated with untreated Celiac disease. I was dx'd with celiac about 6 years ago, and did not notice the biliary problmes until afterward. Has anyone heard of this correlation?

awbmwm3

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Re: Spasm Relief
Posted: 04-14-07 20:36pm

sillyakchick wrote:

I am new to this site. it is so hard to find others who have experienced this problem. I have Type III, so ERCP is not very likely to help. I have sought pain management, and they put me on Fentora, which dissolves between your cheek and gum for break through pain. i also received a certificate for medical marijuana which helps immensely. The most helpful thing to me has been acupuncture. I have pain 2-4 times per month now instead of daily. I also take Cholestyramine which is a cholesterol medication, but it's off-label use is to bind excess bile inthe stomach. I take this before I eat. I wish there was more information on this topic. i have read recently that biliary problems are associated with untreated Celiac disease. I was dx'd with celiac about 6 years ago, and did not notice the biliary problmes until afterward. Has anyone heard of this correlation?

Not sure about the disease you have or the typer III however I have pancreas abnormality due to attacks for pancreas devisum I too have excess bile because i do not produce the enzymes to break it down for this I take Viokase it an enzym pill and has been working great i haven't any pain unless i forget to take it and no nausea.

supermom143

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Sphincter Pain Posted: 06-04-07 14:54pm


I have two daughters who have hereditary spherocytosis and have had their spleens and gallbladders removed 5 years ago due to pain from sludge in the gallbladder and spleenomegaly. They are now 13 and 11. For the past couple of years they have had pain off and on that they call "gallbladder pain". My older daughter has freguent, sometimes daily short spells of pain, my younger daughter has less frequent pain that will last 10-12 hours. They take hyocsyamine sublingually and an oral pain med. Neither of these seem to work very well. We've seen a specialist but he seems to think they are a little young for ERCP to remove the sphincter. Has anyone heard of removing the entire sphincter (I would think that would be risky for backflow infection). Any ideas for kids on managing this? Thanks.

sillyakchick

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Re: Sphincter Pain
Posted: 06-04-07 16:36pm

supermom143 wrote:

I have two daughters who have hereditary spherocytosis and have had their spleens and gallbladders removed 5 years ago due to pain from sludge in the gallbladder and spleenomegaly. They are now 13 and 11. For the past couple of years they have had pain off and on that they call "gallbladder pain". My older daughter has freguent, sometimes daily short spells of pain, my younger daughter has less frequent pain that will last 10-12 hours. They take hyocsyamine sublingually and an oral pain med. Neither of these seem to work very well. We've seen a specialist but he seems to think they are a little young for ERCP to remove the sphincter. Has anyone heard of removing the entire sphincter (I would think that would be risky for backflow infection). Any ideas for kids on managing this? Thanks.

First, I am sorry your daughters have to deal with this pain. It really is terrible at times. I take a powdered medication before meals called cholestyramine. you might ask their MD about this. It is not a systemic drug-it remains in the gut. It's purpose is to bind the excess bile in the tum so that it does not irritate the stomach so badly. Hyoscamine never did a thing for me, except make me drowsy.

In regard to removal of the sphincter-are you speaking a sphincterotomy? that procedure enlarges the opening of the sphincter in the bile duct, but it does not remove it. The down side of this procedure is that one can have pancreatitis just from the ERCP. Another drawback is that scar tissue can develop around the site, furthering the need for additional surgeries.

ERCP is generally reserved as a last approach to managing this very frustrating problem. There are things that one can do dietarily-avoiding caffeine, high fat, and alcohol (although, your children are probably not drinking alcohol at this point!). The most relief I have found is through acupuncture, believe it or not. Most pain medications are known to actually increase the pressure within the duct, and thus are not a good treatment for this problem. Another medication they could try is called Elavil, but I am not sure if this is reccommended for children or not.