In December 1994, on our last night of vacation in Las Vegas, Eric and I had tickets to see Cirque Du Soleil at Treasure Island. We decided to skip dinner before the show, instead sharing a popcorn during the performance with the intent to grab something more substantial afterwards. As the show was ending, I started feeling uncomfortable. Bloated, queasy and I had a sharp pain under the right side of my ribcage. Within a few hours I was throwing up, running a fever and the pain was more than I could stand. Eric and I took a taxi to the emergency room. Just how you want to spend the last night of your vacation, right? The doctor there assumed I had gallstones, but nothing showed in the test so they doped me up with enough pain meds to survive the flight and sent me home.
Locally, my doctor said I had reflux. I didn’t buy it, but eventually the symptoms got better and I got back to my life. Until the next similar attack. More tests. More misdiagnosis. Finally, in 2003 a gastroenterologist did a HIDA scan which specifically tests how the gallbladder functions and the test showed that mine wasn’t doing what it was supposed to do. Bingo! I had my gallbladder out and I thought all was well. Until the attacks started again.
In 2005, after drinking a bottle of Gatorade (for a colonoscopy prep) and having another attack, I was finally diagnosed with Type 3 Sphincter of Oddi Dysfunction by a gastroenterologist who knew enough about it to suspect I had it, but didn’t know what to do about it. Since then I’ve learned that Type 3 SOD is a condition that’s difficult to diagnose and treat. One common treatment involves a procedure where the side effects are often worse than the condition. In September 2005, I blogged about what I was dealing with.
Over the next 3.5 years that post has gotten 610 comments and counting. It’s usually on page 1 or 2 of Google search results. Frankly, I was happy when it fell to page 2. That meant that there was more credible information about SOD taking its place. When I was diagnosed, there was little information online aside from a few articles that esentially questioned whether or not the conditioned existed. Most of the comments here are from people just like me. They thought they were the only ones dealing with this, or were told that it was all in their head.
I haven’t done anything except approve comments as they come in. They, not me, have built a community here and the best thing I can do is not get in its way. I added threaded comments and comment pagination in an attempt to make the comments a little easier to read, but that’s about it. This is my personal website, not a support forum. If I tried to make it anything more than that, I was afraid I would ruin it.
I didn’t want anyone to think I was attempting to dispense medical advice, and I don’t censor any comments posted as long as they’re not flaming or spam. Over the years folks have started SOD-specific support sites, the most recent being thesphincterofoddi.com, but they’re still coming back here. I’ve taken a kind of “whatever” attitude about it. Folks want to keep commenting on a 4 year old post, more power to ’em.
Then this morning, I saw a referrer in my logs from the Journal of Gastrointestinal Endoscopy. John Affronti, MD wrote an editorial (95% of it over my head) in the May issue about doctors who are prescribing Levitra for SOD without any solid evidence to back it up. Dr. Affronti states:
The public’s perception of all this is also important to address. It is conceivable that individuals with SOD (or those who think that they have this problem) will come upon the information reported in the study by Cheon et al somewhere, somehow. “Googling” sphincter of Oddi dysfunction brings up some pretty interesting things, including blogs in which all sorts of remedies are discussed by people with various levels of medical knowledge. One of my favorites is at http://www.momathome.com. If you want a peek at what some of our patients with SOD are saying outside the examination room, check it out.
It doesn’t even matter what I said in the original post anymore, but the fact that I’m still maintaining this site and blogging away on what matters to me does matter. It’s not about pageviews. It’s about the people who might relate to something I’ve posted, and even the chance that another post could organically evolve to something that has an impact again.
2 responses to “When a blog post takes a life of its own”
This is pretty darn cool and, to me, is the “real” social web.
My 11 year old daughter has suffered with abdominal pain since she was 6 1/2 years old. Her pediatrician kept telling us it was just a virus. After numerous episodes of severe pain, she finally decided to put her in the hospital and have tests run, with the end result always being that nothing was wrong with her. The only thing that turned up on her MRI was inflamed lymph nodes in the abdomen and she told us to give her Tylenol whenever she felt the pain. She continued with this horrible pain for many years until I asked for a referral to a pediatric gastroenterologist. She was great, she ran numerous tests and scoped her immediately and determined she had H. Pylori. My daughter had an extreme case of severe gastritis and ulcers. She started antibiotic treatment for this and after a few months was doing much better. A few months went by and then it happened again excruciating pain for a little girl who would scream out to me “mommy please help me, I’m going to die”, the dr. kept telling me to keep giving her the medicines for her gastritis. After numerous episodes of this happening again and again, I demanded an explanation, the dr. decided to re-evaluate her. She ran more tests and immediately scoped her again, she also had a HIDA Scan done on the gall bladder. Her endoscopy came back with a mild case of gastritis and no ulcers, but in all, it was a huge improvement from the first scope. On the other hand the HIDA Scan revealed that her gall bladder was distended and was only working at 7% out of 100%. She immediately referred us to a surgeon to have it removed , this happed almost two months ago. Everything was great until last week, she once again had her horrible pain and it landed her with a four day hospitalization. She had abnormal lab results, where her liver enzymes were extremely elevated. She was released from the hospital, but she was still not eating normal and with no answers, except that they would have to run labs for a few weeks to evaluate the numbers. Four days passed and she had another episode…ugh! I am so exhausted! She is in the hospital again, only this time the E.R. doctor was very concerned with her history with this pain. Having explained to him the history, he told me to have our gastro dr. look into SOD as a possible diagnosis. I am trying to do some research on the internet on the subject but have not come accross any cases with children. Does anyone know of how this affects children? How dangerous could this be for my child if she has had this for many years and we never knew. Please someone out there please respond if you know of any. Thanks!