I don't know about you, but I'm the kind of person that's curious about everything and my mind is constantly riddled with questions about one thing or another. If I weren't paralyzed, but I knew someone who was, I know I would have lots of questions about how they do this or that. SO, I've been thinking lately about some different topics that would make for interesting blog posts to answer some FAQs for people who might be curious about things, but wouldn't feel comfortable asking.
I'm going to be bold and make today's post all about going to the bathroom. It's sort of embarrassing, but I really don't have anything to be ashamed of, since it's a natural part of life that everyone has to deal with—even paralyzed people. So how does someone who can't move and use their muscles take care of their "business"? There are actually several different options that people with disabilities have to take care of their bladder and bowel needs, depending on their injury/limitations, and also depending on their personal preferences. I can't speak for everyone, so I'll just tell you what works for me and my situation.
I'll first start by explaining that when I broke my neck I immediately lost all function below my level of injury (including movement, *sensation, bodily functions, etc.). *I initially lost much of the sensation from my neck down, or it felt really abnormal/different (like pins and needles), but in the weeks and months after my accident I regained much of the sensation I'd lost as "spinal shock" wore off. (FYI, I think it's unusual for someone who's sustained an injury as high on the spinal cord as I did to have so much sensation.) Back to how I manage my bladder/bowel functions…
"Number One"
After my accident I was catheterized (a catheter was inserted into my bladder via my urethra) since I could no longer control my bladder (which is a muscle). This is how it remained for the next few months (the seven weeks that I was in the ICU, and then the first month or so that I was in the rehab hospital). However, since an indwelling catheter via your urethra isn't a long-term option, something permanent needed to be done. As I said, I have absolutely no control over my bladder muscle, so the only option for me in my situation was to get a supra-pubic catheter. I had surgery and a hole was drilled straight into my bladder (about an inch above the pubic bone). A catheter was then inserted into the hole (which my mom changes on a monthly basis). This is how the urine drains from my bladder.
"Number Two"
Just like with my bladder, I lost all control of my bowel function after my accident. In the time that I was in the ICU after my accident, I had maybe a few small bowel movements, but they were definitely not substantial enough to keep my excretory system functioning properly, and by the time I got to the rehab hospital seven weeks later, my bowels were severely impacted. (An x-ray of my abdomen was taken when I first got to the rehab hospital, and the x-ray showed that my small intestine was full of stool (since I basically hadn't had any substantial bowel movements since my accident happened, seven weeks previously).
My intestines needed to be cleaned out, so a 16 oz. bottle of magnesium citrate was called into service. I've heard that that stuff tastes awful, so I was very grateful that I still had a feeding tube at that time so that I didn't have to drink it! Long story short, it did the trick and cleaned out my intestines.
One of the things that my mom and I learned about in rehab early on was about bowel programs (something that we started doing immediately). I knew that I definitely didn't want a colostomy (I felt way too young to have one!), so I was glad to learn that there was another option to take care of my bowel needs. This is basically how a bowel program works: you turn on your side in bed (or you could sit on a toilet or bedside commode) and a suppository is inserted into your rectum. After a while (the amount of time is different for different people) the medicine in the suppository causes you to have a bowel movement. Sounds pleasant, right?! I definitely didn't look forward to this nightly ritual at first—who would—but I got used to it. (This was yet another thing I had to resign myself to after my accident.)
At first I dreaded the daily BP, but there was really no other alternative since you still have to eliminate your waste. The BPs eventually became easier, especially as my nutrition improved. In the first year or so after my accident I didn't drink enough water or get enough fiber, but once I started drinking copious amounts of liquid (8 to 10 cups/day) and getting lots of fiber, it made a world of difference. (I'm on a lot of prescription medications and one of the side effects of many of them is constipation…lucky me). I also started doing my BP every other day instead of daily, which was nice so that I didn't have to do it every day. It's nice to have "trained" bowels so that I don't have to worry about having involuntary bowel accidents like many people in my situation do.
So there you have it. I hope you found this post factual/fascinating, and that it wasn't "TMI." I use Magic Bullet suppositories. They are water-based suppositories (as opposed to oil-based), which means that they work in about half the time.
I'll first start by explaining that when I broke my neck I immediately lost all function below my level of injury (including movement, *sensation, bodily functions, etc.). *I initially lost much of the sensation from my neck down, or it felt really abnormal/different (like pins and needles), but in the weeks and months after my accident I regained much of the sensation I'd lost as "spinal shock" wore off. (FYI, I think it's unusual for someone who's sustained an injury as high on the spinal cord as I did to have so much sensation.) Back to how I manage my bladder/bowel functions…
"Number One"
After my accident I was catheterized (a catheter was inserted into my bladder via my urethra) since I could no longer control my bladder (which is a muscle). This is how it remained for the next few months (the seven weeks that I was in the ICU, and then the first month or so that I was in the rehab hospital). However, since an indwelling catheter via your urethra isn't a long-term option, something permanent needed to be done. As I said, I have absolutely no control over my bladder muscle, so the only option for me in my situation was to get a supra-pubic catheter. I had surgery and a hole was drilled straight into my bladder (about an inch above the pubic bone). A catheter was then inserted into the hole (which my mom changes on a monthly basis). This is how the urine drains from my bladder.
"Number Two"
Just like with my bladder, I lost all control of my bowel function after my accident. In the time that I was in the ICU after my accident, I had maybe a few small bowel movements, but they were definitely not substantial enough to keep my excretory system functioning properly, and by the time I got to the rehab hospital seven weeks later, my bowels were severely impacted. (An x-ray of my abdomen was taken when I first got to the rehab hospital, and the x-ray showed that my small intestine was full of stool (since I basically hadn't had any substantial bowel movements since my accident happened, seven weeks previously).
My intestines needed to be cleaned out, so a 16 oz. bottle of magnesium citrate was called into service. I've heard that that stuff tastes awful, so I was very grateful that I still had a feeding tube at that time so that I didn't have to drink it! Long story short, it did the trick and cleaned out my intestines.
One of the things that my mom and I learned about in rehab early on was about bowel programs (something that we started doing immediately). I knew that I definitely didn't want a colostomy (I felt way too young to have one!), so I was glad to learn that there was another option to take care of my bowel needs. This is basically how a bowel program works: you turn on your side in bed (or you could sit on a toilet or bedside commode) and a suppository is inserted into your rectum. After a while (the amount of time is different for different people) the medicine in the suppository causes you to have a bowel movement. Sounds pleasant, right?! I definitely didn't look forward to this nightly ritual at first—who would—but I got used to it. (This was yet another thing I had to resign myself to after my accident.)
At first I dreaded the daily BP, but there was really no other alternative since you still have to eliminate your waste. The BPs eventually became easier, especially as my nutrition improved. In the first year or so after my accident I didn't drink enough water or get enough fiber, but once I started drinking copious amounts of liquid (8 to 10 cups/day) and getting lots of fiber, it made a world of difference. (I'm on a lot of prescription medications and one of the side effects of many of them is constipation…lucky me). I also started doing my BP every other day instead of daily, which was nice so that I didn't have to do it every day. It's nice to have "trained" bowels so that I don't have to worry about having involuntary bowel accidents like many people in my situation do.
So there you have it. I hope you found this post factual/fascinating, and that it wasn't "TMI." I use Magic Bullet suppositories. They are water-based suppositories (as opposed to oil-based), which means that they work in about half the time.
Thanks for sharing, Heather. I actually knew most of this from reading Chrissy Semanski's blog and book "Life Paralyzed." I'm glad that your situation seems to be a little more tolerable than hers was.
ReplyDeleteHeather, your dignity and courage constantly amaze me! I had also read Chrissy's blog and it was heartbreaking to hear of her struggles with this aspect of paralysis. I have always wondered if it was as horrible for you and am glad you have it managed so well.
ReplyDeleteThanks Heather, it's fascinating but not something one would normally ask about, although I too had read Chrissie's blog. I'm glad that BP has got easier for you over the years, 3 times a week instead of daily must be so much nicer!
ReplyDeleteYou mentioned chronic pain: Is it like the autonomic dysreflexia that Chrissie also talked about? I wondered what kind of pain you experience and how you manage it. My friends Mum suffers constant chronic pain and it's really getting her down. How do you stay cheerful when you suffer chronic pain?
Thanks for writing Heather, I love to read your posts!
Jackie
As a nurse that happens to have a bad case of multiple sclerosis and also fellow blogger, I can say I understand as much as anyone can. I too admire your honesty.
ReplyDeleteVery interesting. I think you should have a FAQ page on your blog! Here's my question for now, I'll try to think of more:
ReplyDeleteI would like to know how you blog. Does your mom take all of your pictures for you? Do you use a voice activated computer? How does all of that work?
Heather, I hope I didn't offend you with my earlier comment. Truth is I can't stand when any able bodied person says the same thing to me! I can't believe I had the nerve to say that to you. I apologize for that.
ReplyDeleteHi Heather,
ReplyDeleteYour candor and honesty are refreshing. At our best we are all teachers (Maya Angelou) and you are an excellent one... Keep educating the world about your life-we are better because of you. :)
Kathy
does any other paralyzed person constantly feel like they have to have a bowel movement?
ReplyDeleteI agree with you. I love this post.
ReplyDeleteHeather, I'm so glad I came across your"Bathroom Business".I found a ad in the local paper for a job a caregiver for a paralyzed man..So you just educated me on one thing that I was curious about. It will probably be one of the things I'll need to know.
ReplyDeleteHis Mom says he doesn't speak, or eat so he's stomach fed. No matter how much I read experience will be my best teacher.He's bedridden so I'll be talking to him an reading to him. .is there anything you could suggest, I'd really appreciate it. God Bless
Heather, Thank you for educating on the Bathroom Business!I just answered a ad in the local paper on caregiver needed for a paralyzed man who bedridden he can't speak and is stomach fed.I'm not sure how to communicate with him but I know I'll be doing alot of the talking an story telling. Experience is my best teacher, if there's anything you could suggest I'd really appreciate it.
ReplyDeleteThanks for the post Heather! It's definitely a sensitive subject and good for you for being brave and putting it out there in the name of helping people better understand each other.
ReplyDeleteYou are such an amazing person! I came across your info in desperation. I care give my 93 year old Mom,
ReplyDeleteAnd tonight she has a caustic loose stool every hour. Her poor bottom is blistered and So Tender! I found
An aloe Vera face cream that I am slathering her skin with and I am trying to keep her very clean but
I wondered, could you suggest anything? I'm on her electrolytes she has had extra fluids. She doesn't
Feel bad. Wish there was a Soft toilet that she could lay on to draw away the caustic fecal from her skin
To allow it to heal. Do you know of one....could you invent one?! We are So careful about UTI this too would be helped if she didn't have to wear a diaper at night. A mattress of memory foam with a soft inset
Toilet that is easily cleaned Where the skin is free and can " breathe" please, someone invent one.
Maybe someone has?
Thank you Heather for your post on this issue!! I was born with the worst form of Spina Bifida. I am paralyzed from the waist down. I am now 55. THANK YOU for for talking about this issue!!!!!
ReplyDeleteValuable info. Lucky mе Ι found yоur website unintentionally, ɑnd I am shocked whyy tһis
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ReplyDeleteI know this is an old post, but I was doing some online research on paralysis and this caught my eye. Heather, you handle everything life has thrown at you with such dignity and grace. Thank you for sharing about your struggles and how you continue to overcome time and time again. Truly, you are an inspiration.
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