After a little bit of back and forth -- one call from my GI saying she left a message for British Surgeon Dude and they would talk tomorrow, an email from me to BSD with an update of my own, another call from GI saying she had talked to BSD -- we have some new tests to schedule and items to look at.
I was reassured by both that they are taking this seriously, that they don't think I'm being over dramatic and that there is something going on here and that some how they will work to figure it out. I appreciated that and believe that by me calmly explaining my feelings we may have all come to a new understanding of each other.
That doesn't change the fact that I still totally believe that something is not right in this body 'o mine and my instincts haven't failed me in that department in the past 3.5 years.
Although, BSD seems to think that there really isn't a problem with the small bowel, that dilation could be "normal" for us k-pouchers. He said that the CT really only showed small amounts of inflammation. But he is going to re-review the images with one of their best radiologists.
In the meantime, my GI is ordering an upper endoscopy to look at my esophagus, stomach and duodenum (top part of small intestine.) She is also ordering an Indium scan, a nuclear medicine test looking for clusters of white blood cells -- or infection. I'm going to call in the morning to try and get these scheduled ASAP.
In the meantime, I've done a few things of my own today. I've made a second opinion appointment with another surgeon recommended by my k-pouch mama J. Unfortunately the appointment isn't until August 18. Hopefully we'll have answers by then, but if not at least we are on the books.
I'm going to be calling tomorrow to try and set up a phone consult with that world renowned program across the country.
It took me exactly 1 year to find someone to figure out that my sphincter muscles were obliterated, it took me 6 months of fighting after that to get insurance to approve my k-pouch procedure and then 8 months after that to find the source and severity of the infection I had post k-pouch surgery.
I'm not waiting that long to figure out what is going on now and if that means I have to go out and do my own pavement pounding, I will. I will not wait until I get to a critical point, I'm already low enough as it is. This is my LIFE! To me, it's not about just quality of life anymore but about life itself.
I do feel like my GI and BSD are really trying. They are frustrated too that they can't figure it out, but as I've learned I can't leave everything up to the doctors. We will get to the bottom of this, something is lurking in there and even if it's small now, it's going to show itself. I don't believe all is well with my small bowel, otherwise I wouldn't have a small distended belly and the pain I'm having, I know it's not normal, I just know it and I have a sneaking suspicion this infection business is at the root.
So now we schedule more appointments and wait again, but each time we are doing something else that will hopefully provide a bigger picture and hopefully just in time.