Last Friday was my follow up, and I ended up spending over 3 hours in the G&I clinic. So, what we know at this point from all the invasive and intensive testing I have had performed is as follows:
- Part of my issues came from birth. I was born with them since I have had severe GI issues my entire life that were never caught or addressed.
- Part of my issues come from the surgery to save my life in 2013. Could not be helped with the damage the tumor did. I am very lucky to not have a permanent colostomy or ileostomy.
- Crohn's is looking more and more unlikely.
- They are now chasing down a definitive confirmation of a diagnosis of EDS (Ehlers-Danlos Syndrome) or MS since something definitely major/autoimmune is happening. I had a crapload of labs done, and a cancer panel is being run as part of the search to determine the autoimmune issue.
- The fact that I have Raynauld's and other smaller autoimmune issues point to a larger one. Lupus has been ruled out previously, but they are testing for it again.
- They are already starting the process for me to see the EDS specialist, not a fellow, so I am on the list. Seems they think this is it and is more than just stretchy skin and joint hypermobility with me.
- The ovary issue is still in play. There remains a grapefruit or a bit larger pocket of fluid in scar tissue that has now been there since whatever ruptured on my sole remaining ovary last May. I am being referred back to Gyn to develop a plan to have it potentially removed via a cannula. (OUCH) and to determine that happens next with the Lone Ranger (ovary).