Here’s what happened in Cleveland!
On Tuesday the 15th we were in Cleveland to see Dr. Cline at Cleveland Clinic and follow up on my smart pill test. For those who don’t know, the smart pill is literally a pill that you swallow and it records pH, temperature, and pressure throughout the GI tract as you move it through over the course of 5 days. This is a motility test (movement test) looking to see how well your GI system is functioning.
Well, Dr. Cline explained to us pretty much what we already expected to hear: my whole GI tract is now being affected by dysmotility. This means none of it is moving like it should.
Specifically, my stomach took 27 hours to empty (it should be less than 4) and my colon did not empty in the time that the pill was active (120 hours—it should empty in less than 48 for someone my age or 59 for the test’s basic criteria). We are not sure when exactly the pill moved out fully (hopefully it did!).
The doctor said that this explains why I don’t tolerate my tube feedings well and why I am unable to gain weight at this point. However, due to some elevated liver function tests, I’m unable to start IV nutrition (TPN) right now, but honestly that’s okay with me. I’ve been on TPN in the past and although it is an important option to have and is saving the lives of many of my friends with the same conditions (Motility disorders or Digestive Tract Paralysis) as me, I’m not ready to go back on it at this time.
Our second option was a whole intestinal transplant. They would remove my stomach, intestines, and colon and replace with someone else’s stomach and intestine. The colon would not be replaced. However, this is not a guaranteed fix and with my connective tissue disorder there’s a good chance it wouldn’t heal correctly or my body would break down those organs with time, too. It’s not a good option for me at this time and is left at the bottom of my list, which leaves me with only one option for treatment.
For now, we are trying to get a new treatment approved by insurance. This is IV immunoglobulin therapy. Essentially we would be trying to reboot my autoimmune system and hoping that my body would stop fighting itself and in that process my GI tract would speed up and start working better. This would most likely be a monthly treatment. It is a very expensive treatment and can be hard to get approved, but working with multiple specialists, we are hopeful!
I also plan to look into some more natural and homeopathic treatment options like natural antibiotics and supplements, acupuncture for pain, and multiple other things that have been suggested by all of you!
I am trying my best to find a better treatment option and work toward a healthier self. Thanks for reading and thank you for all of your thoughts, kind words, and love that you continue to show me. It truly makes a world of a difference!