Supporter Introduction

Greetings! I am happy to be the poster child for this unpleasant forum. I have had a lot of experience with digestive issues. I have actually scared my own gastroenterologist. Here is the journey i have taken to be here today:

I have had stomach aches longer than I can remember. When I was a little girl my father called me “tapeworm” because I was always eating and I was always hungry. I was a small child, and never really gained a lot of weight. I have always been short. The only time my stomach didn’t hurt was when I was eating.

When I was in 8th grade, I was in the nurses’ office almost daily because of stomach upset. I had a constant feeling of being nauseated. I was a swimmer, and I had “dry patches” behind my knees and on my elbows all the time, and nothing I used would get rid of them. This problem would wax and wane, getting better and more severe off and on. I went to many doctors about my stomach.

When I was in high school the doctor thought I had GERD from too much stress. He prescribed Ranitidine for me, which never really did anything. I had my appendix out when I was 18. I got married when I was 20, and there is a fabulous picture of me after my husband stuffed cake in my mouth and I almost threw up. I lost about 30 pounds after getting married, and began to lose my hair as well. I was thin, pale, and began buying elastic waist pants because I would become so bloated after eating. I lived on Saltine crackers and 7-up.

During college I was very depressed and drank a lot-a lot-because I felt so terrible anyway. I saw a shrink who conveniently blamed my parents, and then I just stopped going to see him because I cried the second I stepped into his dank hole of an office. I stopped taking my medication, because it didn’t really help anyway. I saw my family doctor who went into a 30 minute diatribe about irritable bowel syndrome. He said I could have Celiac disease, but it was so rare that he didn’t think it was possible. This was wholly unhelpful.

I got pregnant with my first child in 2000, and I really felt better than I had in my whole life. I had a fairly uncomplicated pregnancy, gained 85 pounds, and had a baby girl. After about 6 months, I started feeling bad again.

We had a huge snowstorm in 2001 which caved in the roof of my house, so we had to relocate for a while during the reconstructions. We stayed with neighbors, and I made a lot of quick frozen food so I wouldn’t be in the way, and since we are vegetarians, most of it was made with wheat gluten. I was so sick and so tired all the time that people thought I was either faking it or I was crazy. I had the most awful diarrhea and gas known to mankind. Then I lost weight-a lot of it. I went down to about 89 pounds.

I finally went to the doctor-again-and saw the nurse practicioner. She thought I had a parasite, so after many tests (one involving pooping in a paint can if you could believe it) She scratched her head and sent me to a gastro. He took one look at me, set me up for an endoscopy and colonoscopy, and promised me I would feel better by Christmas. Well, this was December 18th, so I was doubtful. He called me on the phone the next day and said “you have Celiac Disease”. I also had a positive blood test for Crohn’s, but have never had any lesions. I though I was in the clear if I stayed on a Gluten Free diet.

I felt better for about a year, then I started 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 GB. 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

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. Unfortunately 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 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.

Thank you for allowing me to share this information. I only hope I can help other people to figure out what is wrong with them, what tests to ask for, and how to become a good advocate for their own health care.