My Health Journey
What is Cloacal Exstrophy (OEIS)?
From Boston Children's Hospital,
"Cloacal Exstrophy known as OEIS is when a portion of the large intestine lies outside of the body, and on either side of it - connected to it- are the two halves of the bladder. In boys, the penis is usually flat an short, with the exposed inner surface of the urethra on top. The penis is sometimes split into a right and left half. In girls the clitoris is split and there may be one or two vaginal openings. Cloacal exstrophy is a very rare birth defect generally affecting 1 of every 250,000 births. Cloacal exstrophy is a serious condition and requires a series of operations, the long-term outcome is generally good."
My whole experience with it is, I have a penis that works but I did need to have a penile reconstruction when I was a teenager. I used to have to catheterize myself to release but there were some issues that happen with aging. I now have an urostomy which I have on the left side. I also have an ileostomy I have had it revised and my stoma is retracted into my abdomen. I have had so many abdominal surgeries that any abdominal surgery in the future is risky. They do not tell you in these medical shows about scar tissue and that constant wounding an area can cause significant issues Basically my abdomen wall is like "wet toilet paper". I used a convex wafer to help alleviate any issues. I won't say it's perfect but it works for my day to day. I will include a link to all the products I use, remember though what works for me, might not work for you, and so forth,
What is Spina Bifida Occulta?
From The Cleveland Clinic,
"Spina bifida occulta is a condition where a gap forms between the vertebrae of your backbone. Spina bifida occulta is a mild and is the most common type of spina bifida. Spina bifida is a condition present at birth caused by your spine forming incorrectly during fetal development. Occulta means hidden because a layer of skin covers the opening of your spinal vertebrae."
I have spina bifida because it was likely caused by my cloacal exstrophy. I have had multiple tether cord release surgeries. From what I know basically its caused when nerves and scar tissue wrap around your vertebrae. As a child growing up I actually had very limited issues and it did not impact my developmental years. As an adult its very different because of side effects due to multiple spinal surgeries. I loss feeling from my right knee down to my toes. I like to think of myself as the poorer version of "Mr. Deeds". I have had multiple things happen to it and I have never felt it. I have constant neuropathy pain which I do take medication for. I also have chronic back pain from all the surgeries. I have a mobility issues when I get tired and I begin to limp on my right hand side. During my last tether cord release surgery I lost the ability to walk. I was fortunate enough that I was able to get it back after physical therapy.
What is a Central Line?
From The National Institute of Health,
"A central venous catheter (CVC) is an indwelling device inserted into a large, central vein (most commonly the internal jugular, subclavian, or femoral) and advanced until the terminal lumen resides within the inferior vena cava, superior vena cava, or right atrium."
This is actually very "new" to me, I had it placed in 2020, and have finally gotten to a better place with it. I don't know why or how I would constantly get line infections but for two years I would constantly get them. I had to seek treatment for it once a month and we moved to ethanol locks and that has been the long-term answer. I have my central line because I have a form of short gut syndrome. I just do not absorb all the necessary fluids my body needs. I daily infuse with a lactic ringer solution once or twice a day. I try and do it at night when I am sleeping so it does not bother me day-to-day. When I don't infuse I have issues like cramps, heart palpitations, dry mouth, fatigue, and eventually if to severe I have to go to the emergency room. Which I have had to do before and I don't recommend it. This is coming from someone who had spent most of 2024 chronically in the hospital.
Let's Get
Social
