Never in a million years did I think I would write about this kind of stuff. Realizing that if having a neurogenic bladder and bowel is not part of your daily routine then I might seem crude or uncouth. My intent in writing this blog is to help others like myself, certainly not to gross you out! That said let me continue…
The primary symptom of neurogenic bowel disease is the loss of bowel control. It causes incontinence or constipation, in my case both. In addition, my disability causes hemorrhoids, pain and diarrhea. This thorn in my flesh requires extensive bowel management. I just need to keep on my toes. Or for this article, my hiking boots.
It would be so easy for a person like me to give up and not even try to go on long hikes, work, or go out and grab at that ring. I share my stories because I feel it is worth it to live this life. My prayer of you is that you, just like Nike; “Just do it.” My disability is so hidden. Most are not even aware that I struggle every day to fit in. Bowel and bladder issues can easily be coped with, if there is a toilet near by. But what if I want to test fate? What if I would rather experience a day filled with the wilderness, the ocean, sea glass and wonder. Would it be worth it?? Would it be worth the risk??
I SAY YES, IT IS VERY WORTH THE RISK!
What are the risks you say…well;
- Emotional-Embarrassment, the risk of ending up with the smell and muck in an area where I can not easily clean myself…Solved, I will bring plastic zip lock bags and hand sanitiser and wipes. The trees will be my toilet stall and luckily the squirrels have promised to be quiet.
- Risk of bladder infection…Solved, I will not cath myself until I get back from the hike and I have taken a shower using antibacterial soap. (My ever so increasing concern is the bladder infection that can occur if a blowout happens I do not totally and THOROUGHLY wash me with antibacterial soap before I use a catheter to pee. Feces have lots of bacteria and even a speck can cause a bladder infection a few days later.)
My neurogenic bowel is because of damage to my spinal cord, I think. It affects my sacral nerve. The damage to nerve tissue results in a lack of control of my colon. Several types of spinal cord injury and disease result in this disability, and around half of those affected feel their lifestyle deteriorates. I try not to go there. NO LIFESTYLE GIVING UP FOR ME! Yes, I will poop my pants with little warning if I walk over two miles, yet I enjoy exercise. I am less happy working out in the gym. I prefer to go on a really long walk. The company for my long walks need to be saved for people that understand my condition. I just love to hike so the discomfort and even the embarrassment is worth it.
If I am at home I know I need to take a shower afterwards.
But what if I am not??
This weekend I am planning a nine mile hike with friends. Crazy you say?? No not really because I have a plan. Usually very day I take a stool softener. For this trip, I will discontinue my stool softeners on Thursday….
Here are some of my steps.
• Thursday night I will take a laxative. I know that in eight to twelve hours later I will have a planned stool.
• Because loose stools make my hemorrhoids hurt I will discontinue the daily stool softeners through the planned hike on Sunday.
• On Monday morning I will continue with my daily stool softeners. This is no science and it may not work. I might have to take a trip off the trail. But it is worth a try!
• My goal is to find a socially acceptable time and place and to have a blast of course!
WISH ME LUCK!