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Posts Tagged ‘Crohn’s disease’

One would think that having Crohn’s disease I would not have so many issues with bathrooms.  I envy people who can just walk into a public bathroom do their business and move on.  I’ve talked with other Crohn’s sufferers and they don’t seem to care too much about bathrooms.  Sure they can tell you where each public bathroom is in a 50 mile radius of where they live but at the end of the day they all say the same thing, ‘when you gotta go, you gotta go’ and let us not forget, ‘better out than in’.

Me?  I have rules!  The door must have a working lock.  Preferably the room must be clean.  There should be nobody else in there when I enter, and yes I wait in the safety of the stall till the room is clear before I leave.  It is a real bonus if it is one of those rare bathrooms where only one person can use it at a time.  If the bathroom doesn’t pass my inspection, I live with the pain.

Many moons ago I was in a restaurant with my brother.  He went to the bathroom a few moments passed and some guy came out rather hurriedly cradling his arm.  Sure enough when my brother got back to the table he told me he was sitting there when a hand came in under the stall, naturally he gave the hand a good kick.  I would have done the same.

In Vancouver they have a wonderful bathroom, (sarcasm) the nearest I can figure is that they had to make it wheelchair accessible, they did this by making a really large door in the stall.  So big that when you opened the door it hit the toilet seat, in order to use the toilet you had to squeeze between the wall and the toilet, then straddle the toilet and only then could you close the door, to leave the stall you had to do everything in reverse and believe me it is more complicated than it sounds.  Wheelchair accessible my arse.

I’ll end this post with a suggestion to those who maintain public toilets.  If you think you are going to save money by finding the thinnest, roughest one ply paper that can possibly be made you will fail.  I am on a personal mission to use at least 8 times as much toilet paper and then when I’m satisfied and the toilet is flushed I’ll pull a few more squares off the roll and toss them in the trash just to make a point.  So go ahead purchase that cheapo toilet paper but its going to cost you in the end.

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We decided to go on a picnic at Trough Creek which is about an hour or so from where we live.  As you can see we live in a beautiful part of the county. I didn’t get too many pictures because I spent most of my time holding onto a husky while trying to navigate a ledge not quite wide enough for a person and a dog to walk side by side.  Did I mention my dog doesn’t like other dogs? No? Then I probably didn’t mention there were other people with dogs walking along these ledges that, not only were  not wide enough for a dog and a person, but were really not wide enough for a man with a lunging growling husky. 

 

 The other issue was the suspension bridge.  Okay it wasn’t that high, it was wide enough for two people, there was chain link on both sides, but still it was a suspension bridge.  I have managed to cross the Capilano suspension bridge which is one of the highest in North America so you would think this would be a piece of cake.  But I have crohn’s disease, a piece of cake can inflict some serious pain and much like suspension bridges the sizes or type doesn’t matter.

Sequoia and I made it.

 

 D Makes a run for it.

Unfortunatly we didn’t have too many outings this summer, it was simply too hot.  But fall is on its way and you never know what tomorrow brings.

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Yes, I have Crohn’s disease, and yes it sucks and some days it really sucks. But that is not what I’m here to talk about.

I vividly remember some key points during my first stay in the hospital due to Crohn’s.  They were kind of funny then and in my mind at least, even more funny now, the following are one or two such moments.  

 I was in the hospital because of a perforated intestine. The surgeon could not justify operating on somebody who was steadily getting better on their own, especially with Crohn’s because it is viewed as a ‘hands off disease’ even though surgery was the common way to go in this particular instance.  But my pain was lessening and I was eating so I vacationed in the hospital for a few weeks while they made sure everything was working the way it should and the broken things were fixing themselves. Finally they let me go home. 

 The next day I was back in the hospital.  I swear I didn’t do anything, but my intestine perforated again.  The surgeon that was supposed to operate was not in that day so I got the fill in guy, Dr Spanier. The first thing I noticed was that he was a large man weighing in at about 350 to 400 pounds.  I was trying to work out exactly how he was going to see me on the table, technically that was his problem, but in my way of thinking I was going to be the result.  He quickly put my mind at ease.

 “Brian, I know this is awkward because we have never met, I am now your surgeon and you will just have to trust me when I tell you that I am the type of person who you can put your life in my hands.  Any questions?”

 “Yes, am I going to survive?”

“Yes, anything else?”

 “Nope”

“Okay my team will be in to introduce themselves.” It turned out that Dr. Spanier was a well known and respected surgeon who not only had his own select team for the OR, I understand hospital type people from around the country vied to be on his team.

Of the team, I remember the anesthesiologist.  He also asked me if I had any questions.

“I can’t do math, I can barely count forward, don’t make me count backwards from 100” (I was a teenager and this was/is a legitimate fear of mine)

“You won’t have to count you will just go to sleep and wake up again in about 6 hours or so”

“What if I have a nightmare?”

“You won’t be dreaming about anything.”  

“Okay”

The surgeon came back in to ask me a favour.

 “Brian” he said, “Your mother is in the hall waiting to see you, and she is very fragile so I need you to be strong.  Let her know everything is going to be fine, the last thing I need is for your mother to pass out and then I have two of you to deal with”

 “No problem”

 A little while later the orderly comes in and asks if I need the bathroom, I didn’t.  “Okay Bri, here we go.”

Naturally, despite the doctors warning the first thing I did when I saw my mother was start crying.  The orderly put on the gas and I was on my way down the hall.  I remember looking up at the lights as they passed by overhead and I thought, this is all so familiar.  We stopped at the big double doors and waited.  I told the orderly I had to pee.  He laughed and told me it was too late, they will take care of everything in the OR.

In the OR everybody was nice and friendly,  they stretch out my arms so I was like Jesus on the cross, I felt them taping things too me, but looking up at the bright light all I could think of was “They have the technology, they can rebuild him” was this how the Six Million Dollar Man felt? 

The anesthesiologist kept telling me things but I was not paying that much attention until I heard the following statement. “Dr. Spanier is just washing up so we can get started.” I remember thinking, no, lets wait for the doctor.

My first vivid memory after the surgery was waking up and seeing my father sitting next to the bed.  (Seeing as I was on a steady diet of Demerol he may clear a few things up in his comments, we will have to see).  I told him that I was a little concerned because every now and again my entire body would jump about a foot off the bed.  Shortly after I had one of those dreams where you catch yourself falling down and I jerked myself awake.  “Is that what you are talking about?”  He asked.  “No, you will know”. Sometime later I had one of my little spasms.  I opened one eye to let my father know, but he was already out of his chair running down the hall calling for a nurse, yeah he knew.

 I also found out that Dr. Spanier’s operating team was not that happy with me as I didn’t think no, lets wait for the doctor, I actually said it.  I make no apologies.

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I was asked today how I dealt with stress.  My first thought? I just stuff it down till it’s a burning, churning boiling knot in my gut.  While I admit that does happen on occasion it is not my usual method or is it?  I suffer from Crohn’s and when I think about things that are unpleasant my stomach tends to hurt. For the most part I can tell when its a stress related kind of thing because I can usually will the pain away.  If it is something I’ve had to eat or simply the disease roaring its ugly head willing the pain away doesn’t work.

Lately I’ve been undergoing quite a bit of stress.  My stomach doesn’t hurt anymore then it usually does, but my jaw hurts each morning from clenching my teeth.  So how do I deal with stress?  The question alone is stressing me out.

Does blogging help?  I gave myself two rules when I started blogging, first no rants, second no blogging about work. I have failed on both counts, a few of my posts are metaphoric in nature and not only are they rants, they are rants about work.  It is strangely thrilling for me to tell a story from my life and have it ‘secretly’ mean something else.  I guess its true that the best place it hide something is in plain sight.

So, how do I handle stress? I do have a few techniques.

Breathing!

Many moons ago on the way to the hospital an EMT gave me some breathing techniques.  Just getting more oxygen into your lungs does a body good.  Secondly concentrating on the breathing allows you to focus on breathing and not on the pain.  It’s like a magic trick. When I get frustrated over a particular task, or when things start to come at me all at once I just stop, take a few breaths and bring everything into focus and only then do I continue with the task at hand. 

Hope/trust

At some point I just have to take a leap of faith and know that it will all work out.  I am not fond of flying. But I have hope that the pilot really doesn’t want to die either.   So I’ve shifted the responsiblity to the pilot, doesn’t mean we are not going down in flames but it does mean there is nothing I can do about it so why waste my time worrying over it, right?

I do have an underlying faith that one way or another everything is going to work out.  What other choice is there?

 Yes I know, it’s all so much easier said the done, but then again I have to ask, what other choice is there?

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