Mon Apr 7th:
Well Monday was the same as usual after no BM the night before. Sitting on
the john for a while with little success and on with the Depends that I didn’t
need. Was all toned up. And had that pain in my lower right tummy above my
appendix. It is where the ascending colon meets the transverse colon. The pain
is almost like a cramp. As you know I am on a ton of laxatives. When I was
constipated we increased the number of Softlax to 6 pills a day as we were told that it is just mineral oil the
helps thing slide through. It isn’t, it is a laxative that contracts that
irritates the bowel to make it contract. It was very irritating....grrrr. The
nurse from Parkwood had called after they had gone over my laxatives. Here’s
what I’m taking: 2 teaspoons of Restorolax, 3 tablespoons of Milk of Magnesia,
6 Softlax, a tablespoon of lactulose every other day and 2 Senokot. The nurse
recommended that I up the Restorolax to 4 teaspoons as it absorbs water into
the stool and drop the milk of magnesia down to 1 tablespoon as it neutralizes
the acid in my stomach.
The pain in my bowels may be from the irritants, Senokcot
and Softlax doing their job. That visceral pain is causing my muscle tone. We
are dropping all the Softlax, lower the milk of magnesia and stopping the lactulose.
Haven’t noticed any difference yet but we’ll give it a day or two for the
intestines to settle down. Perhaps the
scope will show what’s going on in there.
Tues Apr 8th:
Been off the Softlax for a day and a bit now. Haven’t noticed a lot of
difference in my tone. My tummy still hurts. The bowel may still be irritated
and that may take a few more days to settle down. My abdominal muscles are very
tight and it is sometimes difficult to differentiate between the abs and the
colon but it sure feels like the colon is still tight. If this is too much
info, skip the next couple of sentences. During and after a BM I can actually
feel my colon contracting. It feels like a big cramp from the right side across
to the left side. In a normal person peristalsis starts the colon contracting
on the right side and a ripple of contractions/relaxation moves along the colon
forcing the stool ahead of it. Dr. Steen thinks that my whole colon contraction
but the relaxation doesn’t happen for minutes or sometimes hours later or maybe
the whole colon contracts at once don’t really know but something is cramped up
in there.
The Softlax and the Senocott irritate the bowel to start the
contraction and if you take them for too long, the bowel gets lazy and doesn’t
contract on its own and that’s when impaction starts. There is a very thin line
between starting and stopping bowel irritants. I took Senokot while in the
hospital and ever since. I was impacted in October and increased the Lactulose
and Softlax to help everything move and it worked. We will try some combinations and see what
works. We’ll see how everything works with just the Senokot.
No bike riding but a walk of about 20 feet before bed and 10
sit to stands and 10 shallow knee bends. It’s a real downer as I can feel my
legs getting weaker. Especially the left leg can’t pick up the toe as well.
Trying to work it as much as possible in bed and when sitting in the chair. I
did manage to sit up to get out of bed a couple times. Haven’t been able to do
that for a while. Oh yes the BM went
well!
Wed Apr 9th:
Well, a whole day without Softlax. It feels like there is a little less tone
just above my hips. It is amazing how much more positive I feel with just that
little gain. The ol’ mind is a strange thing. Speaking of the mind we have started
reducing the olanzapine slowly as it did nothing for my tone.
Did go to the pool today as the legs are still very tight.
We’ll see about tomorrow.
Oh yes, some good news, Darcy gave me $500 for Christmas to
play on the stock market. I now have, wait for it...$812, which is a 62% gain.
How’s that for picking ’em. Now that I mentioned it, it will drop tomorrow. I
expect a drop as a lot of investors will be taking their profits. I think I’ll
hang in there a bit longer. The company makes special chemicals used in solar
panels and LED lights, and both those industries are taking off. We’ll ride it
out for a while. If I make money Darcy may give me another $500 next Christmas.
At bedtime, after my BM, I walked about 20 feet and did 10
or so sit to stands. I am feeling better. Got into bed at about 8:30 and at 5
to nine, I know the time as the PSW was just leaving. I had another BM. Onto
the commode and back to the john. Can’t figure that one out. Perhaps if I
didn’t walk or do anything it would have stayed in and perhaps that is how
impaction starts. I think I will do a bunch of sit to stands before the
suppository goes in and that might get things moving.
Thurs Apr 10th:
Thursdays are good the PSW comes at 6:30 and I am showered and ready to go at
7:30. Felt really good, no pain in the tummy and my waist was not toned. The
back and legs were tight but less so than last week. Did an hour workout in the
bed and went to the pool. First time at the pool in 2 and a half weeks. Took it
easy, floated around for a short time did some stretching, side walking and
just one 15 m walk to the deep end and just 10 minutes in the deep end kicking
my legs around.
Thought I took it easy. A couple of friends dropped around
for a chat. Feeling ok, but then my nose started stuffing up and I felt very
sleepy. Went with Darcy and the dog for a walk round the crescent. So nice to
get outside. The first time outside since last fall. Nose plugged up and dry
mouth. Supposedly these are dysreflexia symptoms. Had them last night and Darcy
took my BP and it was 126 over 79, quite normal. My legs feel tingly and burny
but that didn’t start until about 3:30 PM.
Guess what no BM. The pool and some sit to stands before the
suppository went in probably tightened everything up.
Fri Apr 11th:
Gotta stop talkin’ about BM’s and colons etc. but unfortunately that is my
reality right now. I’ll limit the description. Got Darcy up at 3 AM and to be
brief I didn’t make it to the bathroom in time.
I thought when we stopped the Softlax and went to decreased
laxatives the ol' bod would start to loosen up. It did loosen up for a bit
around my waist but then the pool tightened everything up again grrrrr. Writing
this blog sitting in the chair is painful. The legs are tight/burny, the ribs
are sore because the muscles are very tight. Just don’t know what to do. If I
sit around anymore I’ll soon be too weak to walk...hmmm...guess that is a
little bit of self-pity. No we’ll figure something out, just not tonight!
Sat Apr 12 to Sun Apr
20th: It has been and up and down week. Some days I’m so toned
up I can hardly move. It is difficult to walk with a back that is very tight. I
keep getting a stuffed up nose, ringing ears, numb ears, tight neck muscles and
a very dry mouth. But I think we are starting to figure things out. Any pain
that I feel gets translated into something else. When the pain impulses go to
the brain it would know what to do with it. Now the pain impulses get to the
damaged spinal cord and get transferred somewhere else. When I have a full
bladder, I get the stuffed up nose, dry mouth ringing ears etc. If I have a pee
they go away sometimes for a short time and sometimes they go away for hours.
Another thing causing pain is my rectum. After a BM, it
hurts for hours and my nose stays plugged up and that whole syndrome of effects
starts. Preparation H helps a bit at calming it down. I really need the scope
to figure out what is going on up there. Supposedly the Dr. is working on getting
me the scope. Even sitting here in the afternoon writing this, my rectum hurts
and the ears are numb and ringing. I’ve been trying to do my hour workout for
my legs and arms every day. Haven’t got back to the pool this week. I am
walking every night from the bathroom across the kitchen, about 20 feet. Then
the left foot gets tired and when I can’t lift the toe up, it’s time to sit
down.
Another interesting thing has happened a couple of nights. I
have the BM, do the walk, do some sit to stands and then it’s back to the can
to finish off what I started. Since I stopped using the 6 SoftLax, daily, the
pain in my lower right abdomen has almost disappeared...yeehaw! I think we have
got the laxatives figured out as everything is working quite smoothly
now...lol!
With the stuffy nose at night I can’t use my CPAP and I
haven’t used it for months. Perhaps that is why I fall asleep at the computer
or at coffee with the guys. Or several of the meds I’m taking cause drowsiness
or a combination of both.
Since I have been doing the weights on my right arm it is
almost back to normal. I can brush my hair, well almost, someone has to get a
spot at the back of my head, but I can now brush my teeth easily. At least one
thing is working. Really need to get back to the gym and get on the leg press machine
and up the mileage on the bike and start walking further. I know I must do it
slowly. Got 4.8 k in this week sure is down from 25 to 50 a week I was doing 3
months ago. Another goal.
The goal now is to get back into therapy. I have lost a lot
in the past month and must build up again slowly to be able to do therapy
again. Need to get into the pool and walk there and get the legs stronger.
Had some outings. Went to Pinecroft with Jack and his wife,
my friend from Parkwood. It is good for Darcy to talk to Jack’s wife who has
the same difficult issues as she does. Jack is a little more mobile than me. He can
walk with a walker or canes and has the use of both arms. We arrived at
Pinecroft and we had only the back for the wheelchair, no cushion. We always
have a wool blanket in the car, folded it up and it made a usable cushion. It
was lower than the cushion but worked very well. I don’t think my knees would
have fit under the table if I was on the cushion as my knees just fit under and
the blanket was about 2 inches lower than the cushion. I was bad, lol had
cherry cheesecake, but I didn’t eat all the whipped cream or all the cherry
stuff. That’s a lot of bike rides to get rid of that. Met one of my nurses from
Parkwood, took me a minute to remember but I even remembered her name, Cindy, a
very nice lady! At Pinecroft I had 2 and a half cups of coffee and Darcy
claimed I was very chatty. I will admit I was singing along with the radio
which I don’t normally do. Had coffee with the guys a couple of times. Seems
all the practicing they did over the winter didn’t help their golf game very much.
Missed a few things, haven’t been to karate class for a
month. Just seemed every Saturday I was very toned and sitting in the chair for
an hour+ wouldn’t have helped. Saturday, I
didn’t go to class so I’d be ready for Kelly’s 50th (not my
Kelly) birthday party at night. Well things didn’t work out in the BM
department and I missed the party as well...grrrrrr!
How am I Feeling?
A lot better than the last report. I think we are onto
something with the bladder pain and the intestinal pain. Need the scope ASAP to
see if there are any issues up there. Once we get the bladder and the
intestines figured out perhaps that will resolve all the excess tone in my
legs, arms, back and tummy. Guess that last blog got some people concerned as a
couple of old rugby buddies came from Brantford for a visit. Ken a cyclist from
Ancaster came for a visit as well. He brought Darcy some flowers as he knows
how hard she works as he is looking after his elderly parents,
Thanks for listening...
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