The appointment went well. My k-pouch mama J and the hubs were with me. That J is an enforcer and interjects when I'm not elaborating enough, plus she's a patient of Dr. Teddy and they have a good rapor already. She's awesome and I'm lucky to have so many people who are willing to take time and action on my behalf. Thank you!!!!
Back to the info, I liked Dr. Teddy's approach, first he was on time, second he said we'd look at the records later but first he wanted me to recount why I was there. Which I did, and he listened, asked questions, J threw things in, etc. Dr. T spent about 45 minutes with us. So here's what his thoughts are:
1. We need to revisit the possibility that I actually do have Crohn's disease. With the constant pain, inflammation of the GI tract and fistulas it makes one think. We've had this discussion before, the idea that I have had Crohn's has popped up every few years since I was diagnosed. You see Inflammatory Bowel Disease and autoimmune issues in general are tricky little buggers, they morph, they hide and are very elusive. So maybe that is it, who knows, I'm not really convinced, but I think it's good to explore again. So I did the IBD blood work panel today. We'll see. If this is what it is, then I will accept it and do whatever it takes to save my pouch and take the meds and hope they help mask my symptoms and give me a better quality of life.
In the meantime, I called yesterday afternoon to have the original pathology slides from my colectomy in November 2007 sent to Dr. Teddy's office, per his request. Again, finding Crohn's can be very difficult and the slightest change could be noted from that original pathology to now.
2. It is absolutely possible that they didn't clear out all of the infection during my last surgery and it's just flaring up again. Dr. Teddy looked at the report from my last CT scan and said that it was something to look further into and that it wasn't normal. He took the disc I had with the actual images from the CT and is going to look at them himself and get back to me with his own report.
And what would an appointment be with out a sharp metal sick being poked around in the area of my stoma, well not much fun for the doctor I suspect. He was able to stick the metal object right into that same old open fistula/sinus tract that I had all the drainage from (but has not been draining lately.) It's still there. What I didn't like was how he kept focusing on well we can just open it up and let it heal from the inside out, which we told him is what was attempted two times this past spring. I'll cross dealing with that bridge when and if we have to.
So all in all, no major revelations but some different avenues to explore. I'm most thankful that he agreed the CT scan report was not to be ignored and that he's relooking at the scans.
Dr. Teddy was extremely professional, never once discounting my other doctors plans and actions along the way. I liked him, I'm glad we went out of network to go and see him, do I feel in my gut (hehehe, I love puns) that he will figure the whole picture out, no not really. But I do think that we are moving towards something and that he did take me seriously and I'm glad he was willing to look in some other directions.
His office staff will call me in a few days to let me know the next steps and we'll go from there. In the meantime, I did the adrenal insufficiency blood work this morning and will see my PCP on Tuesday for the results.
I still feel deep down that this is an infection issue, one that needs to be addressed by Infectious Disease. This may be beyond just a GI issue. These are all things I will be addressing with Dr. A (PCP) on Tuesday. I'll keep pushing and fighting, I can't and won't give up. And for now I have to be ok with the fact that at least things are still moving and haven't come to a complete halt.