On August 20, 2011 -- Glen Steen was in an unfortunate cycling accident which required immediate spinal cord surgery and has left him in a quadriplegic state. Glen is a warrior and because of his determined nature and dedication to therapy, he is making gains each day. Follow Glen on his journey here in his Blog, written in his own words.


Thursday 24 April 2014

Apr 7 to Apr 20, 2014



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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