Life is Crazy

 These last few weeks has been a bit of a whirlwind. Summer always looks like it will be so and relaxed, but somehow it never pans out that way! I wanted to share a medical update and some fun pictures.

A little about Alex's Endoscopy and Colonoscopy (shared with his permission) ... It has been several years since we have done an endoscopy and colonoscopy. Alex had a total colectomy in June of 2020 meaning they removed his large intestine. When surgeons do a colectomy, they leave a few inches of rectum called the rectal stump. It is a known side effect to develop a condition called diversion colitis. It is colitis that is caused because nothing is going through that part of intestine and it effects the lining. Alex has had bleeding (and pain) off and on for years because of diversion colitis, but it has gotten worse. There is not really any treatment because it is not connected to anything. Because of my GI issues and the fact that we carry a gene associated with Crohns and Ulcerative Colitis we decided to do this scope to see if he had a different diagnosis with some treatment options. However, things were not as simple as we hoped! The first issue we had is that the anesthesiologist could not get Alex asleep. He gave double their max allowed protocols and he was still not asleep. Alex is an extremely hard anesthesia patient due to multiple allergies to anesthetics, anesthetics that are contraindicated for Mitochondrial Disease, the large numbers of time that Alex had has procedures and surgeries and a metabolic disorder that effects the metabolism of medications. So poor Alex was awake and in pain for the whole procedure. The second issue was during the endoscopy. Alex has horrible GI motility. So bad that he has what is called reverse motility. Dr. O could not get the "normal" scope past his pylorus and into his duodenum. It kept coiling back up in his stomach. (For my medical friends.... before you ask, he has already had pyloric Botox and a pyloroplasty) Dr. O wound up having to switch to a larger scope which led to swelling and bleeding. The worst part though was his rectal stump. The amount of damage and bleeding that Dr. O encountered was far beyond what he expected. When he spoke to me afterwards, he let me know that he had taken multiple biopsies and we needed to wait on results, but based on the visual appearance and damage he couldn't rule out colon cancer. Praise God we got the results and what we are dealing with is "just" diversion colitis, but according to Dr. O the worst case he has ever seen. We are not really sure where this leaves us, we still have no way to treat, but we will celebrate the fact that it is not cancer. Thank you for everyone who prayed for Alex. He is feeling better, but it was a rough few days for sure.

While all of that was going on Bruce got a call that something was seen on his PET Scan. Luckily, it is not cancer related and we are just trying to determine whether he will need a procedure/surgery or not.

As for me...we continue to wait on results from my camera endoscopy. I spoke to the nurse in my GI's office last week and Dr. A is working through the images, but it takes time to look at more than 5,000 images and he doesn't want to rush and miss something. I did have another test done after Maddy and I got back from IL. I was informed that there is a concern, but I can't really go into details as this point as I am still waiting on the report and follow-up to determine our level of concern and next steps. I would ask for continued prayers as each test seems to lead to more questions, but not real answers or treatment. If I am being honest, I am weary but trying to hold firm to the hope of answers and continuing to try and live into our motto of Choosing Joy. 

As for my best girl she is living her best life and thriving. She is absolutely in LOVE with her Lila and the joy and confidence she is showing at her new barn is so fun to watch. Since most of my blog was not as positive as I like today, i want to end with some pictures from our show in IL. They were taken by one of the dad's on our team who is an awesome photographer who takes pictures each show of all the Stable Strides Riders. What a gift to have these amazing photos!

I would ask that you continue to pray for us as we navigate multiple medical issues. We are so blessed by our friends and family who have chosen to walk beside us and share our joys during the good times and lift us up during the harder times. Forever Grateful!

Ali