Sphincter of oddi dysfunction is ruling my life, please hel[

[ellasnana]

I have been in hospital for a month, got home 2 weeks ago after having a scans, mrcp and finally a ercp. I was diagnosed with sphincter of oddi dysfuntion. Im have such terrible pain in my upper tummy just below the breasts, in the middle and to the right. It feels so tight and I find it hard to breath at times. I am also having bowel problems which Ive been told is IBS I was wondering if this was related. Also since I was taken into hospital I have really struggled to eat. Ive lost 11 kilos. In the last 3 days Ive only managed to eat a small bowl of cornflakes, small cup of soup and a banana. I ever bought some complan and Ive managed 2 cups of it with difficultly. I was vomiting all day yesterday and have terrible pain. I am at my wits end and I dont feel like I can go on like this anymore. Life is no fun at all. Im taking buscapan, anit nausea meds and pain killers but nothing helps. I need to be able to eat but I just cant face food at all. Ive hardly eaten at all and that cant be helping my over all wellbeing. I hope some one can come up with some ideas to help me. Please Im desperate. Thanks for listening regards Lisa


This discussion is related to What is sphincter of oddi dysfunction and the symptoms?.

[TreyK]

I hear you, I can barely face food for that past 5 years now. Im 5'11 and have not weighed over 120 lbs since I dropped 5 years ago. I have stomach pain always after eating along with mid back pain and sometimes terrible abdominal pain. They have done every test under the sun, blood work, ultrasounds, colonoscopy/endoscopy, gallbladder function tests and everything is normal. It is very frustrating everyday trying to force yourself to eat just to maintain your weight all the while knowing that being so skinny in itself is unhealthy. Has anybody else tried xanax? My primary put me on xanax and it actually seems to help, it is the only way I am able to eat more than a handful and barely maintain my weight. Anyway I think SOD is the next thing I will be asking to be tested for.

[peachykeene]

My husband is 35 years old and is going threw everything everybody has posted. I thought we were going crazy my husband has lost 140 lbs in the last year all he does is trow up and go to the bathroom. The Dr. has been do ENDO Bo Tox shots direct into his stomach. This has been going on for 1 1/2 now we are very frustrated and my husband does not care if he lives or dies right now. Could you tell me why the surgery is hard<


Sincerely,
Bonnie Duke  

[Tree50]

Just curious did you find any solutions?

[peachykeene]

My husband is 35 years old and is going threw everything everybody has posted. I thought we were going crazy my husband has lot 140 lbs in the last year all he does is throw up and go to the bathroom. His Dr. has been do ENDO Bo Tox shots direct into his stomach. This has been going on for 1 1/2 now we are very frustrated with othing working and my husband does not care if he lives or dies right now. Could you tell me why the surgery is hard???? Please help.


Sincerely,
Bonnie Duke  

[allen89]

I am 18 and lived with a SOD for five years before they found out what was wrong. Last year I had a Transduodenal Sphincteroplasty done (after having all the tests, stints, ERCP, and eventually pancreatitis like you). I recommend looking the surgery up. It has been about a year and a half now and I am practically symptom free. As it turns out, you cannot completely cure SOD, but the most extensive thing they can do is Transduodenal Sphincteroplasty. It is a hard surgery, and not many hospitals even offer it, but it has changed my life for the better.

[ellasnana]

My liver function tests have been high for over a year now. After the ERCP I developed pancreatitis and my sugar levels dropped severely, they were quite worried. I spent the second 2 wks in hosp because of the pancreatitis.
A stent was put in but I dont know anything about a manomerty or a sphincterotomy, they didnt mention either.
They did give me morphine, is that are narcotic? Its only helping for a short time. Ive not eaten all week and the pain is so bad tonight that Im seriously thinking about going back to hospital.
Thanks for your reply and your help. Im getting really desperate for help, this is not funny  : (

[CalGal]

Lisa, if any of your meds are narcotic-based you need to talk to your docs again. In SOD, most can't take any form of narcotic meds because they raise the pressure in the biliary system and cause more pain,

With the ERCP, was manometry done? And was a sphincterotomy done? Were you stented? Any sign of pancreatitis, because pancreatitis can be a side-effect of having an ERCP done.

In general, you need to keep your intake of fat very, very low with any foods you eat.

What did your docs say during this whole thing, and what discharge orders were you given? Did occur after removal of your gallbladder? What are the levels of your pancreatic and liver enzymes?