Sphincter of Oddi Diet

[KrisMcNulty]

About a year ago (Aug 2009) I was diagnosed and treated for Sphincter of Oddi Dysfunction type 3. A couple months before that they removed my gallbladder thinking that was the problem. Since then I have had severe issues concerning bowel movements. It seems like I have a problem if I eat too much fat, or not enough. I can't seem to get my diet right in order to correct my system. It seems like what I eat has an effect but I can't seem to predict what is going to work and what won't. Has anybody else had this issue?  Any suggestions on how much fat to eat? I'm desperate for my body to equal itself out.

Thanks for your help,

Kris

[Stephy1102]

I know this post is old but I just was told by my dr he believes I have SOD does any mayo clinic take Missouri Medicaid that you know of? I have been sick for 4 years and been misdiagnosed so many times and lost 90 lbs I am always in pain it seems. I can't hardly eat and when I do I normally lose it within minutes. I live off of Zofran life is just miserable. This all started 4 years ago when I had a fever of 104.7 and they admitted me to the hospital told me I had Leukemia then said I didn't then said it was Lupus oh wait not that either I got several diagnosis while there for 10 days and I lost 30 lbs while bedridden there. Anyway they sent me home basically saying we have no idea maybe it was a virus. My liver enzymes were elevated, my white blood cell count was down, my red blood cells were attacking each other, and my T-Cells in my bone marrow was all rearranged. But ya they sent me home with no diagnosis no real reasoning. They did take my gallbladder while I was there saying it just randomly quit working while I was in the hospital and I have been getting worse ever since. I have a good dr now but he is just a family dr and he wants to get me in at the best place he can because around here the drs don't do anything for people

[Ekaterina_Teresa]

Hi there.
Poor you! Watch the quantities of food you're co summing. One day write down everything you had to eat and add up the calories. If you don't have a very active life, don't have more than a 1000 calories.
Try to cut out bread and have a rice cake (plain one)
No caffeine, alcohol , sugar...
Hope it helps a bit.
Best wishes,
Ekaterina

[Ekaterina_Teresa]

Sorry sheen80 I had no help from ERCP or stent at all..
They say Avoid stress!!! Very funny..  :((((

[Ekaterina_Teresa]

I'm so sorry for you ad I have the same problem.
Take Lecythin with your main meals, also Digestizyme, also with the main meals.
No leguminous food at all, eliminate sugar and caffeine.
Have very small meals, eat every two hours.
This us all hard work but you'll get some improvement.
Watch out for hidden fat, like in nuts.
Avoid large quantities of bran flakes and don't eat cereals as they have loads of sugar in them.Also brown bread is not too good as it will make you gassy.
Try steamed fish and sweet potatoes.
Add soya milk to your decaf tea.
I've been looking for help for five years now and this is what I've found out.
I hope it'll help.
All the best, take care.
xx

[kalie39]

2 years ago I started having severe stomach pain I was in and out of the ER 2 times before I had my gallbladder removed. I continued to have pain. I had an ERCP done and was put on Amitriptilyn 10mg. I amazingly felt better immediately from the meds. Last year I started to have pain and cramping again. I also suffer from IBS and acid reflux and take meds to treat those. I started taking digestive enzymes and a probiotic and felt better for the time. 4wks ago I had nausea, vomiting and cramping, just thought it was a virus. 3wks ago I started taking a probiotic and over the last 3 days have had really bad pain again. The last 36 hours I have been on a brat diet(Bananas rice applesauce and toast) plus clear liquids and I have no relief. Called and made appt with specialist but its a wk away. I'm starting to think I might possibly have SOD. The specialist that performed the ERCP said at that time I might need to have a stint put in to keep that tube from spasming. I really need to get to the bottoms of this. The last 2 visits I had he just keeps tell me to take a probiotic and watch my diet. Well I don't eat bad to begin with and I keep gaining weight??????

[linkin2012]

Hi Chris my name is Trish, I have been told I have sphincter of Oddi but not had any treatment, I get affected by most foods but fat or meat or raw veges in particular. Can you please tell me what you eat daily/ did you put on weight suddenly? I cant lose weight. cheers

[sheen80]

I was diagnose with SOD back in 09 and have had 3 ERCPs. I actually just had one a month ago and normally I can go back to my normal life but that was not the case. I ended up back at the hospital a week ago and it is so frustrating that all they did was pump me full of pain meds. The last ERCP that was done, I had two stints put in, one by my pancreatic and one by my liver. Has anyone else not have relief from the ercp because living like this is being hard. Everything I eat causes pain and all I am doing is medicating myself. Help??? I know eating foods that are low in fat is what should help but I am basically eating no fat and nothing seems to work. tips or suggestions would be great.....Thanks

[kmay333]

I was first diagnosed with SOD in 2009.  First ERCP was done and Dr. Ahmed cut it.  Worked for about 2 years.  Pain came back and was difficult to find anything I could eat.  Dr did another ERCP and put in a stint for 10 days then had to go back and remove it.  Again worked great for about 2 years.  I just had another ERCP done this month.  Dr. put in a different type of stint and this one will stay for about 3 months.  I want to know if this is something anyone else has had as far at it recurring. I also want to know what foods I should be eating.  Am really tired of going through this.  Oh and I have never had my gallbladder removed.

[DeeDeeDash]

I have SOD.  It took 10 years of going from Dr. to Dr.  I was told it was Reflux, gallbalder, so they took that out also.  I had no stones and I was fine for about 1 year.  Then the pain was back!  My Gastrointerologist sent me to Milwaukee, WI. to see Dr. Joseph Geenen.  He is a specialist in the Oddi Dysfunction.  He knew right away what my problem seemed to be.  He did an ERCP and was fine for a couple of years, then the problem returned.  I see him at least once a year for a checkup.  I did have to have the muscle cut once, and have had at least 3 ERCP procedures.  Dr. Geenen is one of the best gastrointerologist in the Midwest, offices are at St. Lukes in Milwaukee, WI.  I never worry when I see him.  He's one of the best!  Diet is also important.  Too much fat makes me ill, so watch out for that.

[KrisMcNulty]

Hi Snickers27,

Yeah, they did an ERCP for me and went in and cut the muscle. I didn't get pancreatitis. I was completely out of pain when I woke up from the surgery. It took a while for it to come back. It sounds like we had similar problems. I had no stones in the gallbladder but had the pain afterwards. It took 14 different doctors to not know what was going on before I got fed up and went to the MAYO clinic. They were awesome and there was only one doctor there that could even preform the surgery.
I thought at first that everything I ate caused the pain. Since I last posted I think I've gotten a handle on what does and does not cause it. I've figured out that any time my body processes fat I have pain. So even if I eat really healthy, if I don't have enough calories for the day my body processes the fat that's stored and I have pain. Right now I'm on a little diet and am trying to very slowly slim down and tone up but it's a painful process. I'll try the Glucerna snack shakes though. I'm open to anything that can help.

The ERCP wasn't bad for me at all. I highly recommend the MAYO clinic. They are so good at what they do and if you do end up having a complication they are the right hands to be in. I happen to live in Arizona where there is one but I would drive anywhere in the county to be under their care for this again. I almost had it done at the University of Michigan but I'm glad I waited and went to Scottsdale. My throat was very sore for about 2 days after the surgery but it was worth it 100%. I was to the point where I just wanted me life back and I was willing to take the risk to have the surgery. It ended up very well for me.

I hope this helped. Please let me know if there is any other info I can give you. Best of luck getting out of pain. I know, it's no way to live.

Kris

[Snickers27]

Hi there kris.  I'm curious to know what treatment was done for your SOD type 3?  Did they do something during an Ercp?  Did you get pancreatitis from it, as so many others have?  As far as fat intake goes, i'm not sure.  From what i read its different for everyone.  Some people can tolerate more than others.  I've had gallbladder associated pains for about a year when they removed my gallbladder 2 weeks ago.  Pre-op, no stones were detected, so i'm assuming my gallbladder was just malfunctioning.  Well i still have the same symptoms i had before the surgery, and i think it may be SOD that is causing the problem.  I'm scared to have an ercp done, but i've read that its the best diagnosis method, but high risk.  Does everything you eat cause pain?  I've noticed that i can toletate Glucerna snack shakes pretty well, and it gives me some of the nutrition i'm lacking from hardly eating.  Maybe that's something you could try.  I get the ones in the can because they have less fat.  Any advice you have would be so greatly appreciated. Thanks.