- Sphincter of Oddi Dysfunction
- Interviews
Meredith's interview
How did all start?
25 years ago, post cholecystectomy. Years of being misdiagnosed and mistreated.
Do you already have a diagnosis? How long did it take you to get it?
Yes. Started in 1993, 2 yrs post cholecystectomy. Type 1 SOD. Diagnosed in 2005 after 2 weeks of obstructive jaundice and a CBD dilated to 13mm.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have an amazing GI Liver Doctor who specializes in hepatobiliary disorders.
What has been the most useful thing for you so far?
Trial and error and supportive doctors.
What have been your biggest difficulties?
Pinpointing causes of moderate vs severe attacks. Constant fear of having a severe attack. The pain is indescribable; there is no number on a scale for it.
How has your social and family environment reacted? Have your social or family relationships changed?
I’m fortunate to have support. My sister has the same thing, misdiagnosed initially as Coroli’s Syndrome.
What things have you stopped doing?
Radical diet changes. It seems to be a huge trigger as I noticed that every time I had a virus, or appetite decrease, or cut down on intake quickly (ie: after holidays), I had a subsequent attack. I believe it changes bile production and causes stones. Other than that, I’m still learning.
What do you think about the future?
Hoping someone will find a cure. I have not had an ERCP and don’t want one as everyone I’ve talked to who has, including my sister who has had four, ends up with more attacks at nearly the same interval due to stenosis causes by post procedure scarring. Hopefully, someone will come up with a better answer.
So far, which years have been the best years in your life? What have you done during them?
I count blessings daily.
If you had to describe your life in a sentence, what would it be?
Blessed. I’m a nurse and, as difficult and limiting as this can be, I’ve seen far worse.
Finally, what advice would you give to a person in a similar situation?
Find a supportive doctor who arms you with info, supports and respects your decisions, helps you manage your diagnosis and pain reasonably, and learn as much as you can from others in the same situation. Hang in there!
