My Biggest Disability With MS

This post is about a crappy topic (no pun intended).  This is about bowels so if that kind of talk bothers you don't read this post.

Most people probably would say losing the use of your legs would be the biggest handicap with MS but I don't agree.  In the past year I've lost control of my bowels.  The bowel problem is the most challenging of all my symptoms.  It has changed my lifestyle dramatically and it's slowed to a crawl.  In fact, in June of 2016 and still continuing today I've become a bit of a recluse.  I don't know when I'm going to have a bowel movement anymore so I don't like to leave my apartment too much.  I mean I know when I have to go but I have to be on my toilet in 45 seconds to a minute otherwise I'm making a mess.  It's like when you have the flu with diarrhea except I can't run to my toilet anymore!  

I have to transfer three times before my butt hits the toilet seat. First, I get on my scooter, once I'm in the bathroom I transfer to a stool that is the same height as my toilet.  Lastly, I transfer to my toilet seat.  This all has to happen in that 45 seconds to a minute. Sometimes I don't give myself adequate time and accidents happen.  I've even woken up in the middle of the night and had to rush to my toilet for a BM. If that doesn't interrupt a good nights sleep I don't what will. Sometimes I'll be dreaming that I'm looking for a restroom and when I wake up I really do need a restroom!

Just this morning I was about to urinate and had my catheter inserted. Suddenly, I felt the urge that I was going to have a bowel movement.  Luckily, I was facing my toilet.  I only had about 20 seconds to turn around and as soon as I sat down I was having my movement. Then 30 minutes later I had to rush to the toilet again and as soon as I landed on my toilet seat I was having another bowel movement. The other problem I have is this.  It doesn't seem like I ever empty my bowels completely.  

The other bowel problem I have is constipation.  Because I don't like having accidents (my wife has to clean those up and I feel just horrible), I have a tendency to sit on my toilet for long periods of time and often nothing happens. I go into the bathroom thinking something is going to happen but nothing does. I bet I spend 2-4 hours per day sitting on my rear end in the bathroom.  I'm continually faked out by my bowels.  I'll think I'm going to pass gas but I find myself really needing a toilet or rushing to the toilet and then sitting for 30 minutes.  I wake up every morning and it feels like I better get to my toilet ASAP.  Then I sit on the toilet and nothing happens.  Now you can see why I have reclusive tendencies and I hope this all makes sense.

Ten months ago my gastroenterologist prescribed Miralax for me. I take it everyday. It helps with the bowel movements but it's not the same time every day.  I can have bowel movements any time of the day or night. It's kinda hard to plan anything.  I used to read newspapers on the toilet to occupy my time but now I do crossword puzzles.  I bet I've done 2,000 crossword puzzles in the past year and a half since my bowel troubles started in June of 2016.  The other thing all this transferring to and from the toilet does is make me more fatigued.  My MS fatigue is as bad as ever and my bowels don't help.  Stay tuned for more posts.  

Scooterjon

Self-Cathing For Urinating

I was diagnosed with the disease multiple sclerosis in the summer of 1991 at the age of 33.  I don't tell you the following info for pity or sympathy.  I accepted my plight a long time ago and realize I was just dealt a bad hand.  I just want to inform people what can happen to them with MS.  The first 20 years were tolerable but the last six have been challenging to say the least.  In 2011 I developed MS lesions on my spinal cord.  The lesions are interrupting signals to my lower body and affecting all my bodily functions below my waist.  I can no longer stand or walk.  As a matter of fact, my legs aren't good for anything.  I use my hands and arms to lift and move legs and feet at least 100 times a day and I don't do anything.  My legs are just dead weight.  Consequently, I'm on my 3-wheeled scooters 100% of the time.  The last thing I see when I go to bed at night and the first thing I see when I wake up in the morning is my scooter which I named "Ginger".

On of the things that is affected by those MS lesions on my spinal cord is my bladder.  I've cathetered myself full-time since January 2000 so I'm used to that. I'm guessing my spinal cord lesions must have been developing since that time.  If your worried about self-cathing don't be.  It isn't painful at all.  If you use a lubricant it should not be a problem. And I should know because I've self-cathered approximately 34,125 times give or take a couple hundred. I cath five or six times per day.  I've heard from people that the Foley catheter hurts when removed from the bladder.  The Foley is used for operations.  In my 17 years I've also had two bladder infections that needed medical attention.  I can tell now when a bladder infection is starting.  I get funny feelings in my genital area.  Nowadays, when I get those feelings I start drinking water. That seems to take care of it.  Usually, 32 ounces of water seems to stop my bladder infections.  For anyone that doesn't know people can now get 200 catheters per month free.  I'm on Medicare and Medicaid and I guess the government decided it was cheaper to pay for catheters instead of hospital visits.    

I'd always wondered how many times I could catheter without it doing something to my urethra.  I found out in the spring of 2014 what can happen.  When I catheter I use a lubricant called Surgilube.  I found the Surgilube tube is easier to handle than a KY Jelly tube.  I apply a little of that on the end of my catheter and it slides up my urethra easily. In the spring of 2014 though I was having trouble inserting catheters.  What had happened after 17 years of cathing is that my urethra had developed scar tissue and narrowed.  The urethra can be subject to narrowing so if you catheter be aware of that.  

Stretching the urethra assures the passage stays open and allows for urine and semen to pass through.  Stretching a urethra is called “Sounding”.  Urethral sounding is the medical use of probes called “sounds” to increase the inner diameter of the urethra and to locate obstructions in it.  So that was the problem with my catheters not getting to my bladder very easily.  When I met my urologist the first thing he did was insert a cystoscope into my urethra to view what was going on.  He then inserted three “sounds.”  To me they looked like sticks of spaghetti that come out of a box in the grocery store.  I'm not exactly sure how the sounds work but my urethra widened and cathing was easy again.  That was the spring of 2014 but it happened to me again in the spring of 2016.  This time I knew what to expect.  I went back to my urologist and had another sounding done to my urethra. 

Scooterjon

       

Questions Asked By Others


I'm on a site for people with MS called 
MyMSteam.com.  You can ask any 
questions about the disease that you have. 
The other day a man asked me how my MS 
was doing and what were some of 
my symptoms right before I started losing my 
walking.  I'm an open book and I don't mind 
answering questions about my crappy 
disease (MS).  I got diagnosed in 1991.  My 
walking etc. stopped in 2011.  I had 20 years 
in between diagnosis and what I would call 
disabled.  In hindsight I wish someone could 
have told me that I had 20 years left to walk 
in 1991 but that's impossible to know.  

Everyone with MS is different though, it depends where your lesions are in your brain and spinal cord.  I have some lesions on my brain and my spinal cord.  I've personally seen my MRI's.  The lesions on my spinal cord are now affecting everything below my waist.

I stopped urinating regularly in January of 2000. That's when I started using catheters.  Just so people know self- cathing doesn't hurt at all.  I've cathed roughly 37,700 times give or take a couple hundred.  If a person uses KY jelly on the catheter it slides right up your urethra to your bladder. When the catheter reaches your bladder you start urinating.  I use a product called Surgilube instead of KY jelly.  I found the KY jelly containers too difficult to hold and to empty all the contents.  Surgilube is in a toothpaste shaped container and you can squeeze all the jelly out.  It comes in 4 ounce containers like KY jelly. Ask your pharmacist about Surgilube. They should be able to get it.

After my diagnosis I started out walking just fine.  In fact, I owned a carpet cleaning business back in 1991.  It was a physical job.  My walking was fine until my back would start hurting after standing and working some.  At first I used a cane, then walkers and finally got a scooter to help with my fatigue and eventually my walking.  In 2009 I started walking more rugged. Rugged to me means limping and gimping along leaning on chairs, tables, etc.  Because doing that was tiring, in 2009 I started using my scooter more and more.  I felt it was easier and less fatiguing on my body to use my scooter. Finally, in November of 2011 I started using my scooter full time.   

I started having "real" bowel troubles in the spring of 2016.  I'll write more about this in another mailing but it's a pain in the ass!  No pun intended.

Scooterjon

Current Condition



I've always liked to have fun and I've been 

told I have a great personality. I'm very 

honest and trustworthy, at least I think so. 

I would give the shirt off my back to 

someone that needed it. The month of July 

2018 will mark my 27^th year of living with 

MS. I'm still out there grunting out a living 

but now I'm trying to earn money as a writer 

on the internet. I write articles about my MS 

and everything that's happened and is 

happening to my body.

My MS has gotten worse in the past 6 years. 

In October of 2011 more MS lesions were 

found on my spinal cord. The lesions are

disrupting all my bodily functions below my 

waist including walking, standing, bowels 

and bladder. I can no longer jump up off my 

couch to get something out of my refrigerator 

to eat or look out  a window to see who just 

honked a horn. I park my scooter next to my 

bed at night or when I lay down on my couch. 

It's the first thing I see every morning. I'm 60 

now and sometimes it's hard to admit that 

I'm considered a disabled person but I am. 

At times I get down but I try not to stay that 

way very long. I have alot of things I want to 

do with the last 20-30 years of my life. If 

you can get over the fact that you're going to 

be doing those things sitting down helps you 

accept your disease. In May of 2015 I 

described to my neurologist how I was feeling 

and what I did and did not do on a daily basis.  

Without batting an eye she said I was 

depressed! I knew I was down at times but I 

never considered depression to be the 

problem. So I started taking a pill called 

Bupropion once per day for my depression. I 

have to admit it has mellowed me out 

some and I'm not yelling so much now.

One of the reasons I didn't notice a change in 

my mental health was the fact that my wife 

Doris had just gotten here from 

Peru. It's ironic that I stopped walking 

completely a month after Doris got to North 

Dakota. I'm glad she got here when she 

did because she helps me do the things I 

cannot longer do. I was also excited and 

happy thinking of all the things we would be 

doing!

As I said I'm 59 now and I can trace my 

symptoms back to at least 1980. I've had this 

disease in my body for half of my life. I

remember when I was a little boy growing up 

in Rochester, Minnesota.  A commercial on 

TV (this was the 60's) showed  people in 

wheelchairs with the tag line, "MS, the 

crippler of young adults".  I don't think that 

tag line would work well these 

days in  our politically correct world but back 

then it was OK. I myself was diagnosed at the 

age of 33 and I can honestly say it has made 

my life more challenging. I think it's ironic 

that I now have the disease they were talking 

about in that PSA and I still remember that 

commercial from 50 years ago.

Multiple sclerosis is a very humbling disease. 

When a person has to buy his first pair of 

adult underwear at the age of 47 you are

HUMBLED! Believe me your ARE humbled. 

My friend Eric was going into Fargo one day 

and I asked him to pick me up a bag of

Depends just to see what he would say. He's 

39, laughed, and said "no thanks, I can't do 

that! I gave him some grief and then laughed

with him. When your 4-year old can run 

faster than you you're humbled. People with 

diseases like MS just have to adjust their 

lives accordingly.

When I finally went in to see a neurologist in 

1991 I was unsure what the heck was wrong 

with me. I had eyesight problems,

numbness and tingling all over my body, I 

was having trouble urinating, I wasn't 

sleeping too well, I had a slight limp and a 

myriad of other problems happening to my 

body. What could be wrong with me I asked? 

It had taken me a year to get in to see an 

eye doctor and it would be another 3-6 

months before I finally had the diagnosis 

I was looking for. Believe it or not by the end 

I was actually relieved that I had MS! I didn't 

know what course it would take but at least I 

had a name for all my symptoms. I also knew 

that I didn't have a stroke, cancer, ALS, or 

any other major problem. I had been on 

a roller coaster ride for over a year wondering 

what was wrong but now I knew!

In the past 6 years my MS has taken my legs 

from me hence the title of this article. I can't 

walk anymore and my balance is shot. My

bladder hasn't worked since January of 2000 

and I also have severe fatigue which can 

come on at anytime and anywhere leaving me

totally exhausted and needing a nap. I'm 

calling 2016 the year that I lost control of my 

bowels.  I don't know anymore when I'm 

going to have a bowel movement.  See my 

article titled "My Biggest The Greatest Handicap" for 

more details.

Scooterjon