Bile Duct Disorders Forum - Supporter Introduction

Here is the sordid tale of my experience.

I am a 33 year old mother of 2 children.

after I had my first child, I got very sick and found out I had Celiac Disease. After my initial shock I was actually releived to have a disease I could manage myself. Four years later I started having URQ pain and referred back pain. I went to the ER thinking it was Gall Bladder pain. They did an ultrasound and said I had no stones. I was diagnosed with an ulcer and referred back to my GI for endoscopy. I had it, and they found nothing, except that the damage done by Celiac was much better-yippie!

But I continued to have terrible pain with nausea and somtimes vomiting. When an attack would happen, I would get diaphoretic, nauseated, chilled, feel like I had to go to the bathroom, and have the most insane pain. I was put on Prevacid twice a day which cost me 300 bucks a month, and did very little. they tried me on Levsin, but it did nothing. Finally I said to my GI-is it possible this could be gall bladder and no stones? He said it was possible. So I had a hidascan which showed slow emptying and sludge in the Gall Bladder. I really wanted another baby, but couldn't imagine doing so while in pain, so I had it out in 2004. 2 weeks later i started having pain again, but not so severe. My gastro said it would take a while for my body to return to normal and I would be fine. Great!

Since I knew the pain would go away, I went forward and got pregnant with my 2nd child. The pain didn't go away. It just got worse and worse. i found info re: SOD and took it to my gastr and said "I think I have this". He said I couldn't possibly, so he put me back on Prevacid again. my pregnancy progressed and so did my pain. I finally called my gastro and he said "I have nothing else to offer you". I put down the phone and sobbed. I was 6 mos pregnant and had no where to turn. It was the worst experience of my life. I continued to be in agony about every 3-4 days. A couple of times I was in the ER. They gave me pain meds and anti-nausea meds. They didn't help, but the made me tired enough to sleep. I very seriously considered committing suicide. I sat down one afternoon and counted out all of the meds in my medicine cabinet to see if I had enough there to kill myself with. But then there was the baby to consider, and my family, so i just couldn't do it.

After I had my baby, I developed horrible anxiety about having pain. I would worry that I was going to have pain, which contributed to me having pain, etc etc etc. I found a counselor for the anxiety. I went to a new GI doc and said "I think I have SOD". He was doubtful, but did the whole work-up. Nothing was found on any scans. I felt crazy. I went to a specialist at Denver Health and he was reluctant to give me any concrete dx, but said "yes this is probably what you have. The only way to know for sure is with an ERCP. Unfortuneatly for you, the likelihood of it helping in your case is small, and there is a good chance you will get pancreatitis."

Well, at this point I did not feel very statistically lucky, so I went home with nothing. I asked my GI doc to refer me to pain management. The Dr I saw was absolutely fantastic. He believed in me even though I did not have a concrete dx. He was very sensitive and caring. He put me on Cholestyramine to bind the bile in my stomach. I take it three times a day before meals. He gave me a certificate for medical marijuana, which helps immensely. He also gave me a medication called Fentora, which is a Fentanyl derivative that dissolves between the cheek and gum. This actually relieves the pain! He also sent me to acupuncture, which I think was the most helpful of all. I went weekly at first, then every other week, and now I go about once every moth or so.

I still have attacks, but not nearly so frequently and not nearly so horribly. I am no longer thinking about suicide. I am able to live a pretty normal life, go out with friends, play with my children, work full time, etc. I only take the Fentora once or twice a month now. I have this man to thank for my life. I also have my daughter to thank for my life, because I think if I hadn't been pregnant, I probably would have killed myself that day. I am posting this so that someone else may benefit from my experience.

Consequently, I have been doing research about the possible connection between celiac disease and SOD. I have found that there is a connection between the two, especially SOD where the gall bladder was removed due to sludge and no gallstones. It is very interesting stuff, and I guess it makes sense in hind sight. but that is a post for another topic.

If you are suffering from these symptoms, or would like more information, please do not hesitate to post a question.