Crohnie Quote of the Day

God, grant me the Serenity to accept the things I cannot change
Courage to change the things I can
and Wisdom to know the difference.



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Crohnie Drawing

Saw this on the 'net and just had to post it.  I wish I knew who drew it, but it sums up a Crohn's sufferer to a 'T'

No argument here........

How The Crohnie Grinch Stole Christmas.....Again

I mean, what IS it with Crohn's and the holidays!!?
Every year, and I DO mean, EVERY year, my Crohn's acts up. 

This year, I thought it was going to be different.  I was on Remicade and off of the Prednisone.  I wasn't taking any other meds, I was gaining weight, I was eating properly and I had lost the "sudden urge" to run to the bathroom right after eating.  I was thinking that this Christmas I could actually sit down and enjoy a nice Christmas dinner with ALL the trimmings this year.  I was thinking that this Christmas I could actually have a "drink".  I nice rum n coke or a glass of wine.  Oh, and the desserts....the desserts.  Butter tarts, mine pies, nanaimo bars etc. were going to enjoy their travels down in to my stomach and I wouldn't have to worry about it.

Boy was I wrong......again.  I swear Crohn's is like the Grinch.  Cuz he stole my Christmas....again.
One week before Christmas, I started to develop an abscess.  Not just any abscess, but a peri anal one or course.  I tried to think it away, yea THAT worked.  Then I thought that because my next infusion was a couple of days away, it'll go away after that.....yea THAT worked.  The day I decided, sorry, I mean my wife decided that I was to go to hospital, the abscess let loose and the pressure was gone.....sort of.  Now I have the pain of not only a small remaining abscess, but now an open "wound".
BUT, I didn't have to go in to hospital.   I got to "enjoy" Christmas dinner (but was very difficult to sit), but no alcohol (anti biotics said so) and only a select few treats.

Maybe NEXT Christmas will be different.   Will be nice to have a "normal" Christmas for once in over 24 years....

Crohn's Advent Calendar - Day 25

Merry Christmas!

Opening the ostomy bag this morning to find.....

..... hope

Hope....they will find the cause
Hope....they will find the cure
Hope....that we all spend as little time in hospital as possible
Hope....that all Crohnie's around the world, have the most healthy of years for 2013

And that closes the Advent calendar for another year.  Looking forward to next year
Thanks for stopping by

Have a Merry Christmas and all the best for a happy and healthy 2013!!!!

~Vern

Crohn's Advent Calendar - Day 24

Opening the ostomy bag this morning to find.......

a six pack!!  (of Boost)
(cuz you never can get enough nutrition)

Well, as you can see, I didn't make it in to hospital.  But I was 5 minutes from leaving and as I was getting ready to go.......the abscess let loose!  Awesome, but damn sore now.  I still might end up there, but for now, I'm at home and it's still draining.

This incident, above all, goes to show the unpredictability of Crohn's

Merry Christmas!

Crohn's Advent Calendar - Day 23

opening the ostomy bag this morning to find.......

a do it yourself home operating kit!
(that would come in sooo handy right now)

Unfortunately, this will be the last entry for the Crohn's Advent Calendar this year.  The ole' Crohn's Fairies have decided that I should probably head in to hospital as they gave me a rather nice abccess to worry about.
I'll finish off the Calendar, maybe, when I return....god know when that is

Have a Merry Christmas everyone!

Crohn's Advent Calendar - Day 22

Opening the ostomy bag this morning to find......

a large bottle of wine!
(cuz sometimes you just gotta say, "F-it" and have a drink)

Crohn's Advent Calendar - Day 21

Opening the ostomy bag this morning to find......

a can of "No Crohn's" spray!
(to spray on all those Crohn's "bits" you just want to go away)
(wish I had that now)

Crohn's Advent Calendar - Day 20

Opening the ostomy bag this morning to find.........

a lifetime subscription to hospital TV!
(you just never know when you'll need it)

Remicade - Day 148

Today was infusion day ( a week early) and I literally had to travel in a snow storm to get it done.  But done I did.  I needed this one as I started to develop an abscess a couple of days ago....not good.
So, hopefully, this dose will take care of it.  I might have to get either a higher dose of get it more frequent.
We'll see......

Crohn's Advent Calendar - Day 19

Opening the ostomy bag this morning to find.....

a 5000 page book of crossword puzzles!
(for all those nice hospital visits)

Crohn's Advent Calendar - Day 18

Opening the ostomy bag this morning to find......

a nice supply of Imuran!
(oh goodie, more drugs)

Crohn's Advent Calendar - Day 17

Opening the ostomy bag this morning to find.......

a T-shirt that says "I know I don't LOOK sick....."
(it's easier this way)

Crohn's Advent Calendar - Day16

Opening the ostomy bag this morning to find......

a very large tube of Germoline (antiseptic cream)!
(for the nice red and sore ass after going to the bathroom 500 times a day)
(and the anesthetic in it helps!) aaaaahhhh

Crohn's Advent Calendar - Day 15

Opening the ostomy bag this morning to find.....

a swimming pool full of Multi- Vitamins!!
(eventhough you can't absorb them very well, always good to have)

Crohn's Advent Calendar - Day 14

Opening the ostomy bag this morning to find....

an App showing every possible public washroom available for use!!
(self expanatory)

Crohn's Advent Calendar - Day 13

Opening the ostomy bag this morning to find......

a lifetime supply of new underwear!!
(you know what I'm talking about..)  =)

Crohn's Advent Calendar - Day 12

Sorry, liitle late.......

Opening the ostomy bag this morning to find.........

a years supply of Remicade!
(cuz at $4000 per infusion...that's gonna come in handy)

Crohn's Advent Calendar - Day 11

Opening the ostomy bag this morning to find.....

pads and panty liners!!
(cuz those damn fissures, fistulas and abscesses are a pain in the ass (literally))!

Crohn's Advent Calendar - Day 10

Opening the ostomy bag this morning to find....

a new tattoo!! 
(to cover up the battle scars)

Crohn's Advent Calendar - Day 9

Opening the ostomy bag this morning to find......

a box of Raspberry Tea!
(your kidney's are going to love you for it)

Crohn's Advent Calendar - Day 8

Opening the ostomy bag this morning to find..............

a book called "The Million and 1 (and then some) Excuses Why I Can't Go Anywhere (but I really want to) Because of My Crohn's"
(because there just aren't enough)

Crohn's Advent Calendar - Day 7

Opening the ostomy bag this morning to find.......

designer ostomy bags!!!
(I don't need them, but they look cool)

Crohn's Advent Calendar - Day 6

Opening the ostomy bag this morning to find......

a large bottle of Oxy Clean spray!!
(an essential tool in the fight against laundry stains)

Crohn's Advent Calendar - Day 5

Opening the ostomy bag this morning to find..........

money to buy new clothes!!
(cuz of the weight loss, then gain, then loss, then gain......)

Crohn's Advent Calendar - Day 4

Opening the ostomy bag this morning to find.....

a huge friggin' B12 needle!!
(liquid sunshine)

Crohn's Advent Calendar - Day 3

Opening the ostomy bag this morning to find.....

a bag of supplies for my next hospital visit!!
(awesome...always need that)

Crohn's Advent Calendar - Day 2

Came downstairs this morning, grab a cup of coffee, had my meds and sat down with my calendar.

Opening the ostomy bag this morning to find......

a Costco sized bottle of Prednisone!!
(that'll last a week)  =)

Crohn's Advent Calendar - December 1st

YES, boys and girls!  It's December 1st...so, it's that time of year again when we pull out the ole' Crohn's advent calendar.
I love this time of year.  I couldn't sleep last night with the anticipation of what's behind those little doors.  This year, instead of toilet seats like last year, we have ostomy bags!!!  Yay!!!!!
I can't wait.........let's get the Christmas advent going shall we..

I'm soooo excited.....

opening the first ostomy bag this morning to find...............

a 50 pack of 2 ply double roll toilet paper!!!!!

woohoo!!!

don't forget to come back tomorrow, when I open up ostomy bag #2...

Cough and Cold Season

"Tis the season to be sniffly...tra la la la laaaa la la la laaaaaaaaaaaaaaaa"

Every year, I'm the last in my family of 4 to get "sick".  And when I mean sick, I mean the dreaded cough and cold.  But for me, and maybe others with Crohn's, I always seem to get it 100 fold.
The runny nose, I can handle, that's nothing. 
The coughing, that's a little more than nothing.  It's not the coughing itself, it's what the coughing does to your insides.  You never realize just how much you tighten your abs when you cough until you've had Crohn's and the multiple surgeries, cutting open those abs.
But then there's the headache and exhaustion, this is something you really can't fix.  Is it because, generally, when you are sick, your body is already tired....maybe.  Is it because with Crohn's your body is so zapped of vitamins and minerals, it's already tired......probably.
But I HAVE discovered over the years (and several hospitalizations) the main obstacle with cough and colds, for me anyway, is..........dehydration.
I discovered that especially when I walked upstairs, I was so exhausted, I had to sit down and was out of breath.  Plus the dry mouth that came with it.  Turns out, I was dehydrated.  Problem is, how does a person with Crohn's keep hydrated?  No matter how much I drink, I can't keep it in.  Another "side effect" of the cough and cold.  I am continuously going to the bathroom.  Wow, a person with Crohn's continuously going to the bathroom...go figure. 
So what do I do?  Keep drinking.  Every time I go to the bathroom, I have a drink, on top of all the time in between as well.  Just keep drinking and eventually, the cough and cold works its way out of your system.

So, even if your Crohn's isn't active, you have a cold, you feel exhausted and out of breath AND you have dry mouth, you're probably dehydrated.....drink more.

Crohnie Quote of the Day

Sometimes the strongest people are the ones who love beyond all faults,
Cry behind closed doors and fight battles that nobody knows about.







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New Piece

Here it is.....

this is what it looks like together...

...and, because it's actually 2 - 20 X 16 pieces, this is what it looks like apart...

 

 

 

 

Drug Interactions

I picked up my meds yesterday (Azathioprine or Imuran) and they asked me if I wanted the "Drug Interaction Report", I said sure and she put it in the bag.  I came home as usual, put my meds away and left the paper on the counter, not thinking anything of it.  This morning I got up, made breakfast and coffee, grabbed the paper, sat down and had a read.  So, while I'm enjoying my bowl of cinnamon and spice oatmeal and my freshly brewed cup of black coffee, I started to read........

"1 Drug interaction found", I stopped eating for a second....then read on......

"Severity Level - 2, Severe Interaction", I almost spat my coffee out.....then I read this....

"Clinical Effects - Concurrent use of a TNF blocker (Remicade) with either azathioprine or mercaptopurine may increase the risk of hepatosplenic T-cell lymphoma (HSTCL), a rare but usually fatal cancer",  WTF??!!

Wait a minute.....I'm on Remicade and Azathioprine......
I knew there was a chance, but to actually see it in writing from the pharmacist, gives you one of those "HOLY SHIT!" moments.  I read on and it says that the majority of cancer cases were in CD or UC patients and in adolescent or young males...

WHEW!!  thank god I'm "old".

Then I got to thinking.  What the hell DOESN'T cause cancer these days?  And it did say "may" . Oh well, if I get it, I get it.  Just something else to fight off.  But right now, at this minute, the drugs are working for me.  And right now, at this minute, is all I'm worried about. 
Tomorrow is another day....I'll worry about it IF it happens.  I guess I'd have to start a new blog  =)

Crohnie Quote of the Day

I came across this quote and it made me stop and think for a minute and how my life would have been different had I NOT been "blessed" with this wonderfully incurable disease. 
What would I be doing? 
Where would I be?
Then I thought, well, if it hadn't been for my illness, I wouldn't be writing this blog, maybe not be doing my paintings and more importantly, most likely would have never met my wife and have the two great kids I have today.

 So, when you read the quote, stop and think for a minute....


"I may not have gone where I intended to go, but I think I've ended up where I needed to be"
    -Douglas Adams



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IBS, Ulcerative Colitis or Crohn's Disease?? Which Are You?

Inflammatory Bowel Diseases (IBD) is a broad term that describes conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. The two most common inflammatory bowel diseases are ulcerative colitis and Crohn’s disease.
Both illnesses have one strong feature in common. They are marked by an abnormal response by the body’s immune system. Normally, the immune cells protect the body from infection. In people with IBD, however, the immune system mistakes food, bacteria, and other materials in the intestine for foreign substances and it attacks the cells of the intestines. In the process, the body sends white blood cells into the lining of the intestines where they produce chronic inflammation. When this happens, the patient experiences the symptoms of IBD.
Neither ulcerative colitis nor Crohn's disease should be confused with irritable bowel syndrome (IBS), a disorder that affects the motility (muscle contractions) of the colon. Sometimes called "spastic colon" or "nervous colitis," IBS is not characterized by intestinal inflammation. It is, therefore, a much less serious disease than ulcerative colitis or Crohn’s disease. IBS bears no direct relationship to either ulcerative colitis or Crohn's disease.

Crohn’s disease is a condition of chronic inflammation potentially involving any location of the gastrointestinal tract, but it frequently affects the end of the small bowel and the beginning of the large bowel. In Crohn's disease, all layers of the intestine may be involved and there can be normal healthy bowel between patches of diseased bowel.
Symptoms include persistent diarrhea (loose, watery, or frequent bowel movements), cramping abdominal pain, fever, and, at times, rectal bleeding. Loss of appetite and weight loss also may occur. However, the disease is not always limited to the gastrointestinal tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint.
The most common complication of Crohn’s disease is blockage of the intestine due to swelling and scar tissue. Symptoms of blockage include cramping pain, vomiting, and bloating. Another complication is sores or ulcers within the intestinal tract. Sometimes these deep ulcers turn into tracts—called fistulas. In 30% of people with Crohn's disease, these fistulas become infected. Patients may also develop a shortage of proteins, calories, or vitamins. They generally do not develop unless the disease is severe and of long duration. Until recently an increased risk of cancer was thought to exist mainly for ulcerative colitis patients, but it is now known that Crohn’s patients have an increased risk of colon cancer as well.
The five groups of drugs used to treat Crohn’s disease today are aminosalicylates (5-ASA), steroids, immune modifiers (azathioprine, 6-MP, and methotrexate), antibiotics (metronidazole, ampicillin, ciprofloxin, others), and biologic therapy (inflixamab). Two-thirds to three-quarters of patients with Crohn's disease will require surgery at some point during their lives. Surgery becomes necessary in Crohn's disease when medications can no longer control the symptoms.

Ulcerative colitis is a chronic gastrointestinal disorder that is limited to the large bowel (the colon). Ulcerative colitis does not affect all layers of the bowel, but only affects the top layers of the colon in an even and continuous distribution. The first symptom of ulcerative colitis is a progressive loosening of the stool. The stool is generally bloody and may be associated with cramping abdominal pain and severe urgency to have a bowel movement. The diarrhea may begin slowly or quite suddenly. Loss of appetite and subsequent weight loss are common, as is fatigue. In cases of severe bleeding, anemia may also occur. In addition, there may be skin lesions, joint pain, eye inflammation, and liver disorders. Children with ulcerative colitis may fail to develop or grow properly.
Approximately half of all patients with ulcerative colitis have mild symptoms. However, others may suffer from severe abdominal cramping, bloody diarrhea, nausea, and fever. The symptoms of ulcerative colitis do tend to come and go, with fairly long periods in between flare-ups in which patients may experience no distress at all.
Complications of ulcerative colitis are less frequent than in Crohn’s disease. Complications can include bleeding from deep ulcerations, rupture of the bowel, or failure of the patient to respond to the usual medical treatments. Another complication is severe abdominal bloating. Patients with ulcerative colitis are at increased risk of colon cancer.
The four major classes of medication used today to treat ulcerative colitis are aminosalicylates (5-ASA), steroids, immune modifiers (azathioprine, 6-MP, and methotrexate), and antibiotics (metronidazole, ampicillin, ciprofloxin, others). In one-quarter to one-third of patients with ulcerative colitis, medical therapy is not completely successful or complications arise. Under these circumstances, surgery may be considered. This operation involves the removal of the colon (colectomy). Unlike Crohn's disease, which can recur after surgery, ulcerative colitis is "cured" once the colon is removed.

http://www.cdc.gov/ibd

Crohnie Quote of the Day

"The only source of knowledge is experience" - Albert Einstein

in the case of Crohn's, and any illness, this, above all, is true....unfortunately.

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Kidney Stones and Raspberry Tea

Or the official name for Crohn's patients with kidney stones, "extraintestinal complication".

These are probably the most commonly encountered kidney complications of IBD—particularly oxalate stones. Kidney stones are more common in Crohn's patients with disease of the small intestine than in the general population because of fat malabsorption. Fat binds to calcium, leaving oxalate (a type of salt) free to be absorbed and deposited in the kidney, where it can form into stones. The risk for developing kidney stones of this type is higher in people who have had a number of small bowel resections and are therefore more prone to dehydration. Their urine is more concentrated, a condition that is more likely to lead to stone formation. Symptoms may include sharp pain, nausea, vomiting, and blood in the urine. Kidney stone treatment calls for an increased fluid intake together with a low-oxalate diet (one that's rich in juices and vegetables).

I've had kidney stones several times in my long Crohn's career, some of the time resulting in surgery.  My favorite was when they put a stent in.  Putting it in wasn't the hard part (I was out), it was taking the damn thing out that was painful.  Oh yea, did I mention I was awake for that and they use a local freezing gel?!  Let me tell you, there was NO freezing happening down there!!  I felt it all!!

Now a days, I'm pretty careful on drinking and eating too much dairy or calcium.  I found out early that I cannot take calcium pills or supplements as they caused me to start having flank pain (kidney pain) in my back where it all starts. 

After much research and trial and error, I discovered (for me anyway), that drinking raspberry tea as soon as I start feeling that "feeling" in my back made the pain go away.  Just drinking it plain.  No milk, no sugar, no nothing, just tea.  Now I drink raspberry tea at least once a week to help out my kidneys and I haven't had a problem in years now.  Ironically, raspberry tea contains calcium, obviously not enough to cause problems.

Crohn's Myths....

This is my personal favorite.............

if you eat this (insert whichever "fad" food(s) at the time) your Crohn's Disease will be cured.

This is a HUGE myth and totally untrue.  Your Crohn's might, might mind you, go in to remission, but it will never be "cured".

Until they find the cause, there isn't a cure.

As everyone who has Crohn's, has it in some sort of different form, not everyone will react the same way, speaking of food.  AND depending on how your Crohn's is on any particular day, or hour for that matter, will determine how you react.

So please, do not fall into any trap.  Only you know how your body is and only you know how your body reacts......

......listen to it.

What IS Crohn's Disease?

To me, what IS Crohn's Disease?, simply, it's very painful and it's a pain in the ass, figuratively and literally.......but having said that, here it is in clinical form:

Crohn's Disease is a chronic inflammation of the digestive track.

The digestive track covers the following:

• Mouth
• Esophagus
• Stomach
• Small Intestine
• Large Intestine
• Rectum
• Anus

Crohn's can affect any of those areas, but most commonly attacks the ileum or the lower small intestine, as in my case.  The swelling of the affected area will cause pain and diarrhea.

Abdominal pain and diarrhea are the most common symptoms of crohn's disease. Other symptoms include rectal bleeding, weight loss, arthritis, skin problems, inflammation in the eyes, and fever. The range and severity of symptoms can vary. A diagnosis of Crohn's may involve blood tests, stool tests, upper GI, colonoscopy, sigmoidoscopy, or biopsy.

Crohn's may involve several factors including heredity, environment and the immune system. The main theory is that the body's immune system reacts to good bacteria and food as it would to a foreign body and tries to fight it off. Because of this, white blood cells will gather in the lining of the intestines and result in chronic inflammation.  So, basically, no one really knows for sure.....yet.

Treatment may include a combination of drugs, nutrition supplements, and surgery. The goals of treatment are to ease the symptoms, control inflammation and improve nutrition. Currently, there is no cure for Crohn's Disease. However, people can have a long period of remission where they are symptom free.
Drugs may include anti-inflammation, steroids, cortisone, immune system suppressors, Remicade, antibiotics, anti-diarrheal and fluid replacements.

http://www.justcrohns.com/

Remembrance Day.....Would You Join??

I don't know what it is about this day, but I always am glued to the TV watching the national ceremony from the cenotaph in Ottawa.  It's amazing just how many veterans, now in there 90's some of them, come out and stand there in the rain sometimes.  The camera pans by them as they reflect and remember, as they are the only ones that can truely remember.  You can see it in their eyes, their faces, their tears.

These are the people we should be thanking.  These and the ones who didn't come home and the ones that are still out there 'fighting' in other countries.  These men and women who put life on line when their country called and calls.  They didn't have to think about it, they just did it.  Duty to "king and country"....teenagers, some of them.  Would that happen today?

If we were to have to go to war again (heaven forbid), would the youth of today put down their cell phones, laptops, iPADs, video games, iPODs, McDonalds, Tim Hortons, Starbucks, and pull up their pants, walk down to the recruiting office and sign up without having to think about it...?? 

I don't think so.  Not with the "what have you done for me lately" attitude of some young people these days.

Sad really...because today, when the 90+ year olds of yesterday are standing outside in the cold and rain to remember and reflect, the youth of today are enjoying their Starbucks, talking on their cellphones, whilst posting on their Facebook pages in the comfort of their nice warm homes.

....that these men and women fought and died so they could.

Something to think about.

Crohn's Myths.....

It's Only An Upset Stomach

Crohn's disease effects the entire digestive system. It is an inflammatory disease that cause abscesses in the intestine, uncontrollable diarrhea, vomiting, ulcers in the mouth, loss of balance and/or severe joint pain.

Read more: Myths About Crohn's Disease | eHow.com http://www.ehow.com/facts_5501228_myths-crohns-disease.html#ixzz2BnFOHxJT

Remembrance...........

With Remembrance Day on Sunday, take a few minutes to either remember someone, think of someone or just give thanks to the many who have fought for your Country, whichever that may be.
The fact that you can sit at your computers, read your tablets, go to the grocery store and simply walk down the street, is thanks to them.

The next time you go out and see a Veteran selling poppies, donate the change you have in your pocket (or more) and stop for a few minutes, shake his or her hand and say "thanks".

.........it's a pittance of time.

Thank you.

Crohnie Quote of the Day

"If in your heart you are happy, you have the greatest blessing of all" 

@Ltd_to_two (Twitter)

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IBD Myths.....

....and how many of us have heard this one eh?!
FICTION: IBD is all in your head.

FACTS: IBD is not imaginary (diagnosis depends on the presence of inflammation in your gastrointestinal tract), nor is it caused by psychological problems. On the other hand, IBD can lead to anxiety or depression. These issues are often associated with any chronic illness and are not the nature of IBD itself.

Reference: http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx

November is Crohn's and Colitis Awareness Month

From http://invisabilities.org

Canada has one of the highest rates of Irritable Bowel Disorders in the world.

November is Crohn’s and Colitis Awareness Month. Do your part to support those living with IBDs by getting educated! Check out this infographic and take the first step in fighting the stigma surrounding IBDs.

IBD Myths...

FICTION: IBD is caused by stress.

FACTS: No one knows exactly what causes IBD. There are a number of hypotheses (for example, immune system malfunction, environmental factors, genetics, infection), but stress is not one of them. Studies have shown that stress does not cause the inflammation associated with IBD, but it can exacerbate the symptoms of an inflamed digestive tract and increase IBD severity.

Reference:
http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx

IBD Myths

FICTION: Inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) are the same thing.

FACTS: It’s easy to confuse IBD and IBS, since they occur in the same part of the body (your gastrointestinal system) and often share similar symptoms, like pain and diarrhea. But there are significant differences. For example, a hallmark of IBD is chronic inflammation of the digestive tract that sometimes flares, whereas IBS is a functional disorder of the intestines that does not involve active inflammation. Keep in mind that, 30% to 40% of the time, a person may have both IBD and IBS, since once the bowel is inflamed for any reason, an irritable bowel may develop due to heightened sensitivity.

Reference:
http://www.salix.com/patient-resources/digestive-health-newsletter/archive/ibd-myths-facts-fiction.aspx

Did You Know...........

..... something as small as one tiny kernel of popcorn can cause an obstruction in the bowel when your Crohn's is active??

Something to think about....

Crohnie Quote of the Day

“Hope is a good thing, maybe the best of things, and no good thing ever dies.”
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Remicade : Day 99

Yesterday was day 99 of Remicade treatment, I guess making today lucky number 100, and once again, I don't feel any different than day 98...
The nurse was a little shocked to hear that I was in hospital a couple of weeks ago with the bowel obstruction.  Ya...SHE was shocked.

Overall though....looking at everything over the past 100 days, I do feel better and I'm slowly gaining weight (eventhough I lost a bunch while in hospital).  I weighed in at 70.8 kg's, (156 lbs) up from 68.9 kg 8 weeks ago. 

Doses are now every 8 weeks.....

You Know You Have Crohn's When.....

....you keep a hospital spreadsheet of when you were in, what you were in for, whether you were in through emergency or admission, a list of your family doctor, GI, surgeon and their phone numbers, and a list of your meds with dosage.

Comes in handy when you get asked the same questions over and over by numerous doctors and nurses whnever you go in to hospital.

It's easier to just hand over the sheet, cuz sometimes you're just in too much pain and discomfort to answer.

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Crohnie Quote of the Day

With Crohn's, as in life, you feel as though you take two steps forward and one step back.....

.......But you are always moving forward.


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A Lovely Day at the Hospital.......Or Week

You know when us Crohnie's can never tell when you're going to get a flare up??  Well this took me for a loop........

Last Friday morning I awoke early, as usual, needing to go to the bathroom, as usual, except nothing was coming out, not usual.   "Hmmmm", I thought, "that's strange, I know I have to go, cause I can feel it".  No sooner had I stood up, the feeling came back and so...back down I go........and....nothing.  So, now I'm getting the weird feeling.  You know the one.  Where you say to yourself, "Hmmmm".

This went off and on for about an hour or so, then came the "Uh - oh" moment, I threw up.
"Not good", I thought.  Because right at that same moment, I had that urge to go to the bathroom.  I already knew what those two combinations meant and I was desperately trying and trying NOT to let it happen......yeah...right.

Within minutes, I needed to throw up again, but this time, the pain started, just below my rig cage.
Sharp, intense and still I was NOT going to let this happen......have I not learned anything after 24 years of this disease?

By this time, I'm home alone and I struggled to get dressed and get myself downstairs and maybe, just maybe, laying on the couch might help......Haaa Haaaaaa Haaaa, what an idiot!
I could no longer sit, or lay down from the pain, AND I still had the feeling I needed to go to the bathroom all this time....time to call the ambulance and scribble a quick note to my wife.....
 gone to hospital.  I'm still throwing up when they arrived, BUT, because I'm throwing up, they won't give my any morphine......crap!!

What seemed like an eternity, we finally arrived at Langley Memorial and was wheeled in to the hallway.  Just my luck.....seems the whole city is at this hospital.  But by now, I really really needed to get to a bathroom!!  The ambulance attendant had to pull me up off the stretcher as I couldnt get up myself and I struggled, bent over,  the 20 yards or so to the bathroom, praying there was no one else in there.  Of course whilst I'm trying to go to the bathroom, I threw up again, this time, nothing was coming up.....my suspicions were now comfirmed to me......bowel obstruction.  I did this another time before they found me a bed, thank god and they got an IV in to me as soon as they could.  My bowels needed to rest.  After an XRay and CT Scan confirmed what I already knew, the concern now was.....was it bad enough for surgery or would just the IV be enough???

Saturday came and another XRay to see if the IV is helping.  In walks the surgeon afterwards and I'm already thinking....oh, crap....but, good news.  Seems the rest has helped a little and the obstruction is smaller.  Turns out, I had a new area of Crohn's develop higher up in my intestine, oh goodie, thus causing narrowing of that part of the bowel.  BUT, I would need to stay in hospital to see IF it stays the way it is, or clears.

Well....I'm home now after five days and everything seems to be ok......but I wanted to say to everyone out there.  With Crohn's, you just never know when, why, or where you're going to get a flare.  I didn't eat anything different, do anything different or anything that would "cause" it to flare.
When the Crohn's Fairy comes down and touches you with her magic wand, you deal with it the best you can.....like we always do. 
In my case, I should have listened and recognised the symptoms, done something about it, instead of denying it and hoping with all hope that it wasn't happening..  But I wanted to show, that eventhough I have been with this for 24 years now, I still wish it wasnt happening to me and hope it would just go away.

Well Crohn's is here to stay, don't be a twit like me and get help asap, you could be making it worse.

I'd like to thank all the staff, nurses and doctors at Langley Memorial Hospital in Langley, BC, Canada, for their great work and help.  You know you've been to the hospital too much when some staff, 3 nurses and 2 doctors recognize you.

Crohnie Quote of the Day

"Everyone has a story, make your own worth telling."

New Piece

From the "studio", I went back to abstract basics.....

....working on another....

Artwork

I've had a few people ask me about any newer pieces of the artwork I'm doing....well...the answer is not since May, BUT, I am working on one currently.
I have also had a few people ask me if they can see them all.  In this case, you can go to

http://artistslaine.blogspot.ca/

and they are all there.

Thanks everyone!!

Bathroom Emergency.....Sort Of

So, I have been on Remicade for a couple of months now and a little longer with the Imuran and honestly, I don't "feel" allot different than I did before.  Other than the fact I'm not popping a ton of pills anymore (only 3 a day now).
But, if I had to pick one thing that I have noticed, it's not the amount of times I go to the bathroom, it's the urgency of having to go to the bathroom.  Which is nice.  I still can't eat ice cream....found that out, but I can handle frozen yogurt and thank god for Menchies!!
There's no more pain, the abscess / fistula is basically gone.  I'm drinking coffee and donuts (but only cake donuts and not yeast donuts).  And I'm still gaining weight....slowly.  I have more energy than I did before, which to a normal person, would still be less than them.
I have also noticed quite a bit of pain though in my hips, elbows, shoulders and wrists.  I have numbness in my fingers and right arm and I can't make a "tight" fist.  I'm thinking that it might be the Imuran, but I still have to check with my GI.  Maybe it's the dosage (150mg). 
All I know is that the numbness in my hand and fingers all the time is very very very irritating and a little unnerving.  Especially at night.  I wake up after only a couple of hours and my shoulder that I am lying on is painful and my hand and fingers are numb.  All I have to do is shake it out and it goes away....for a little while. 
Arthritis, probably.....oh goodie.  Just add it to my list of ailments
What's next...?

Crohnie Quote of the Day

A friend of mine posted this on FB.  Advice he gave his 7 year old daughter.
I think it is great advice in general, but also for Crohnie's and other chronic disease sufferers....


"Being brave doesn't mean not being scared, it means being scared and doing it anyway."


-

Funny

One of my friends posted this on Twitter and just had to repost it here.....says it all I think, thanks Shannon!!  Made my day!!

@yukondiva
Selling on Ebay. One pair of fucked up intestines. Really used up and completely shitty condition. Will trade for healthy intestines. Hahaha

Love it!

"Hun.....Watch This"

Laying in bed the other night, watching TV like I always do, I got that 'crohns feeling'.  You know the one, the feeling like you have to go to the bathroom preceded by the sudden, and sometimes painful, cramping feeling.
Well, at least now-a-days for me, the pain isn't there anymore (knock on wood), but the cramping sometimes rears its ugly head. 
As this was happening this time, I looked down to my ab area around my belly button and was a little surprised at what I saw.  So much so, I nudged my wife laying beside me and said, "Hun....watch" as I pointed to my belly button.
And there it was.....like a rolling wave on an ocean.  You could actually watch as food passed through my intestine, obviously because of a little inflammation or something.  I could actually time it.  I would get the cramping feeling followed by "the wave".  First from right to left, then left to right.  Lasted about 10 minutes or so, then, done.
Almost something like the birthing scene from the 1979 movie "Alien" (minus the blood)

It's amazing, as I get older, the small things that entertain me.

10,000 Pageviews !!!

Wow.....!!

Thanks to everyone who has come on by my little blog page to have a read.
It's funny, because when I started to write, it was for me, but on the off chance that others "might" read it as well.  I never thought it would ever...ever...get to 10,000.

So, thanks to those you have come in to my little world via whichever social media outlet, or just Googled "Crohn's", not to mention the other Crohn's sites and blogs that have my site on theirs.

Thanks to my friends and family and to those who leave comments and emails on their own experiences.

Next stop... 100,000!!!!!

Vern

Crohnie Quote of the Day

Don't ask me "what can you eat?"
Tell me what you are planning to have for dinner and I will tell you if I can eat it or not.

It's just easier that way

Remicade : Day 42

3rd infusion of Remicade today, all went well once again.  Had to go to a different infusion site though, and that was a little annoying.  There was no doctor at my usual site so what normally takes me 15 minutes to get to the site....took almost an hour and a half today.  Had to be done though.  I don't see alot of difference but the weight is still going up it appears, slowly.  Weighed in at 70 kilos (154 lbs).  Only about 3-4 kilos in the 42 days....but up is better than down I suppose.  I'll get excited when its about 10 kilos more!

Next dose in 8 weeks!

Yesterday....All My Troubles Seem So Far Away

Since my diagnoses back in 1988, I have been living with, and dealing with, Crohn's for

24 years, 2 months and 27 days

that's.....

8,855 days
212,496 hours
12,749,760 minutes
and
764,985,600 seconds....601.....602....603....604....


Of course, I had Crohn's for months before the "official" diagnoses, but,

well, you get the idea.

Crohnie Quote of the Day

"Crohn's Disease is a pain in the ass......literally"

A Day at the Fair

Went down over the line to the US yesterday and took the family to the Northwest Washington Fair (after stopping at Target to do some shopping of course).
We go down every year for a few reasons, mainly because the kids like all the animals and the wide variety of rides and it's fairly reasonably priced....$60 for parking, 2 adults and 2 kids to get in and 2 ride passes....awesome value.
I am usually wary of going, though I do cuz its fun, because of the fact....well....I have Crohn's and the thought of using the washroom there just give me the willy's!  So, to combat that, I don't eat.  I have breakfast in the morning and go to the washroom several times BEFORE we leave (long drive) and then don't eat again until either we are just leaving to come home, or wait until we get home.  Strangely enough, I don't feel hungry.

BUT, this time was different.  Was it the Remicade?  The Immuran?  Both?  Who knows, but I ate a sandwich which we brought with us, part of my son's, some potato chips, little bit of Coke, some crackers and some cucumber.  How was it you ask?  Fine.  Didn't have to go to the washroom and more importantly, didn't have the feeling of needing to go.  AND I didn't go to the washroom until we got home...8 hours after we left.

I know, I know, to those of you without Crohn's who are saying, "wow....8 hours without going to the bathroom, big deal".....well to those of us WITH it....

.....it's a HUGE deal.

Crohn's and the Olympics Don't Mix

For those of us who enjoy watching the Olympics and have Crohn's.....install a TV in the bathroom.
Especially the opening and closing ceremonies!  Thank God for PVR's !!

Great job London and GB, thoroughly enjoyed it, thanks.
And thanks to our Canadian athletes!!

Remicade : Cost

So, I thought I would take a pic and show it to all those who do not believe that this medication can bankrupt you, eventhough we need it and it helps.....thank god for coverage!

Yes.....that says $3,811.45

Remicade : Day 14

Second infusion today, no problems.  No weird reaction on the skin this time, so that was a relief.  The nurse just couldn't get the needle in my veins....got it on the third try. 
I find it strange while I'm being infused, because the Remicade is cold, it's cold going in and makes my skin cold around the infusion site and up my arm about 6 inches.....weird.

On the up side, my weight went up 1.4 kg's from the last infusion and I have noticed that the two fistulas I have, have gone wayyyyyyyy down and have stopped draining.  That part, I'm excited about!  Those damn things are very annoying and painful sometimes, but so far so good.

Crohnie Quote of the Day

Life isn't about waiting for the storm to pass.
 It's about learning how to dance in the rain.

Remicade : Day 1

Well, Remicade is now flowing through my body, hopefully doing what it's suppose to be doing.
I had a mild reaction during the infusion, which was just some small white 'blotches' come up on my skin around the needle in my arm, but nothing to worry about.
But because of the reaction, my infusion took a little longer as they slowed the drip a bit.  Nice comfy leather Lazy boy chairs, but after 3 hours of sitting, I just wanted to get up and walk around.  Eventually took 3 and a half hours after everything was said and done.

My next date with Lady Remicade is August 8......

Bank of Remicade

My first infusion is tomorrow and I went to get my Remicade today from the pharmacy......

that'll be $4000 please.  WHAT??!!!

Well....that's what I would have said if I didnt have coverage.  Because I'm here to tell you that there would be no way in h-e-l-l I could afford that!

Somebody is making a ton-o-money off of us sick people....

Crohnie Quote of the Day

"If you cannot be a poet.....be the poem"

And So It Begins....

First infusion of Remicade starts this Wednesday.  Looking forward to it, yet, not looking forward to it at the same time.
Two hours and an hour to sit afterwards to see if there is any reaction, etc.
Then, if all is well, I go back on the 8th August, for the next round.

All aboard the Remicade train!!  Let's see where this takes us, shall we............

Remicade Pre-Opening Ceremonies

One step closer to starting Remicade.

I had to get a TB skin test, for which I went last Tuesday and today went back for them to tell me that I didn't have TB.......or so I thought.  No, I don't have TB, BUT, now I might have to have a chest x-ray.  I had no reaction to the skin test, but because I'm on Immuran (immune suppressant), it could give the test a false reading....what!?!  So then, why not have me just go get a chest x-ray??!!  and skip the skin test?!!  Some times I wonder about our medical system.  Not all of it, just some of it.

Hopefully, because I had an x-ray back on June 1st in hospital, I might not have to get another one....BUT, with my luck.....

Diary of an Old Man

10 July 2012

'Woke up at 6am after a bad nights sleep, yet again, but have to get up, I have things to do.  I have to roll out of bed slowly as my back and hips are really bothering me.  Quick shower and start to get dressed.  Getting dressed is hard as its difficult to bend down or bend over to pick up clothes or even put my socks on.  Downstairs to get breakfast but I decide to skip the coffee, cuz my hands are sore so I give up trying to open the coffee jar.  Likewise with the tub of butter, but I manage to open the lid so I can have buttered toast.  Sit down on the coach to eat and watch the morning news, knowing it's going to be a struggle to get up off the coach when I'm done.  When I finally got up, naturally I have to get to the bathroom.  Back, legs and stomach are sore so I don't move very fast, but made it in time.  By the time I'm ready to go and face the world, I'm sore, tired and now, out of breath....ohhh the life of an old man, not too bad for 75 years old....

..........but I'm only 44.'


So here is a quick sense of how things are going for me. 
Went for a TB skin test today in preparation for Remicade, need to go back in 48 hours to see if theres a reaction...so far so good.
With the way I'm feeling, I can't WAIT for Remicade.....bring in on baby!!!

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

"Even the well-intentioned often don’t know how to talk to the chronically ill."

Was made aware of an article in the June 27 2012 issue of Psychology Today (thanks Kendra)
As I read it, all I can think was....
What if someone said any one of these when you're having a BAD day?!  =)

http://www.psychologytoday.com/blog/turning-straw-gold/201206/what-those-chronic-pain-or-illness-don-t-want-hear-you-say

Crohnie Quote of the Day

"Enjoy the little things in life....
for one day you'll look back and realize
they were the big things."

The Party Room

This evening, my wife was calling looking for me, so I answer....

"I'm in here" I called out

"Where's here?" she asked

"In the bathroom!" I called back

....and muttered to myself, "Where ELSE would I be"

Happy Canada Day!!

Crohnie Quote of the Day

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

Sweet and Sticky Health Benefits

I've posted in the past about sugar and it's harmful effects on the bowel and absorption, so I thought I would post about the benefits of honey instead of sugar.  I've recently started taking Cranberry Honey in my tea (tastes fantastic) and I also started trying Cinnamon Honey on my toast in the morning....again, fantastic.
So I researched some information about the benefits of honey and cinnamon.....

Did you know that honey is the only food that won't go bad....??


The combination of honey and cinnamon has been used for centuries in the oriental and Ayurvedic medicine.
The two ingredients with their unique healing abilities have a long history as a home remedy.
Here are some suggestions on how you could use this wonderful Cinnamon Honey:

1)  Heart Disease: replace butter, margarine or jam for cinnamon honey on your toast for breakfast.

2)  Arthritis: apply the cinnamon honey on the affected area

3)  Cholesterol: add cinnamon honey in green tea and drink.

4)  Colds and Flu: add cinnamon honey to lukewarm milk to help boost your immune system.  It may also help to clear your sinuses.

5)  Indigestion: take a tbsp. of cinnamon honey before every meal.

6)  Pimples: apply cinnamon honey on the affected area over night and wash it in the morning.

7)  Weight Loss: add a tsp. of cinnamon honey to a cup of boiled water and drink it on an empty stomach, 30 min. before breakfast.

8)  Bad Breath: mix cinnamon honey with hot water and gargle.

9)  Fatigue: drink in the morning and in the afternoon, 1/2 tbsp. of cinnamon honey mixed in a cup of warm water.

Enjoy!!!!!

Crohnie Quote of the Day

"There are no great men (or women), just great challenges which ordinary men (or women), out of necessity, are forced by circumstances to meet"

 

Sugar and Malabsorption

I've been reading this book, "Breaking the Vicious Cycle" by Elaine Gottschall and I'm finding it very interesting as far as eating is concerned. 
Now, granted, there are alot of things in this book I cannot eat, as many of you will also find, but the one chapter I found very interesting was Chapter 5 on carbohydrate digestion.  Especially sugar.  I didn't realize that having my two milk three sugar medium Tim Horton's coffee was causing me alot of problems as far as digestion goes.
Single sugars - good.  Double sugars - bad.
So I have cut out adding sugar to anything and substituted honey.
Seems double sugars remain undigested in the intestine and draw out water, mix with the nutrients you are trying to absorb, and then are lost down the toilet.
Great read for us malabsorpers.  I haven't quite tried any of the recipes inside, but I will.

Crohnie Quote of the Day

Nothing is impossible,
the word itself says 'I'm possible'! 

Humble

For the past few days, I've been going to the hospital bright and early in the morning.  I was given a ride to and fro by my Dad (Thanks Dad) in the beginning as I was just too tired and weak to do so myself.  After the scary experience on Friday, I'm surprised I had any energy at all.  I go up to the outpatient IV clinic and wait my turn to get "hooked-up" in the sheet covered Lazy Boy chairs.  There are 5 others sitting in the room, all waiting, all with identical gauze wrapped wrists, arms, chests, etc., all there for different reasons.  I push back on the arms of my chair to recline and await my "drug".  The nurse calls my name, asks my birth date, and I took the gauze off in preparation and anticipation.  She hooks up a  saline needle to flush the lock in my arm, hooks up my line, turns on the machine, takes my temperature and says "There ya go". 
While I wait my half an hour it's going to take, I scan the room.  Looking.  Listening.  One nice older lady is there talking to the nurse about her breast cancer and all I can think is about my own mum and how she must have looked while she sat in the chair getting her meds.  Two other men, who have been coming to this clinic for awhile obviously, as the nurses know them by first name and they are prepared with books to read.  One has an infected foot, can barely walk, its swollen, red and painful.  The other is the same, except it's his shin and calf, red, swollen, painful and peeling.  Another lady, around my age, is sitting with her doctor whispering.  She's finding out that the antibiotics aren't working on her infected leg (which is twice the size it should be) and she will have to have surgery and even then, no guarantee she can keep her leg.
Then the beeping starts, signalling the end of my session.  The nurse comes and unhooks me, flushes the line, locks it and puts the gauze back on for tomorrow, where we'll do this all again.
As I'm driving home I started to think about the others in the room and my own situation.
And then I wonder.....

....do I really have it that bad?

You're Not Gonna Believe It......

...but literally minutes, and I do mean minutes, after writing my last post, I started to get the shakes.  A little at first, but within a few seconds I was shaking like I was having a siezure!  I've had them in the past, but usually goes away after having some juice or something.  Not this time.  It got so bad so fast that I had my wife call the ambulance.  My jaw locked up, I couldnt speak properly and the pain from tensing was too much to handle.  But as soon as the fire dept arrived (before the ambulance) and gave me some oxygen to relax, the convulsions slowed.  The problem now was that I was burning up (40C) my heart rate was 122 and my blood pressure was 190/80.  So needless to say the ambulance still took me to hospital and spent the night.  I have to go back for the next few mornings for IV antibiotics, but the funniest thing is that all my blood work came back "normal" and nothing on xray.  I havent been able to eat because I throw it up, so just water mainly for now.....

lots of fun....

Prednisone, the Hussy

You know that saying,

"I have Crohn's, but it doesn't have me" ?

Well Crohn's sure is putting up a great fight today and tonight.  Doesn't have me yet!
But oh boy!  I'm looking at number 7 on the CPS (Crohns Pain Scale)
Trying to get through it without the Prednisone.......ohhhhh but she's looking pretty good now!
I can hear her calling from the cupboard....."here I am...I knowwwww you want me" (the slllllut!)

We'll see what the night brings, shall we......

Check Out My Artwork

...on eBay!

http://www.ebay.ca/itm/April-Original-Acrylic-Abstract-Print-Canvas-/130702840755?pt=Art_Prints&hash=item1e6e7f13b3

http://www.ebay.ca/itm/Jellyfish-Original-Acrylic-Abstract-Print-Canvas-/130703502798?pt=Art_Prints&hash=item1e6e892dce

http://www.ebay.ca/itm/Heaven-and-Hell-Original-Acrylic-Abstract-Print-Canvas-/130702628023?pt=Art_Prints&hash=item1e6e7bd4b7

http://www.ebay.ca/itm/Checkers-Original-Acrylic-Abstract-Print-Canvas-/130703621605?pt=Art_Prints&hash=item1e6e8afde5

These are the first few I'm trying out on eBay.  Sold one giclee print so far!!

Thanks for everyones support!!!!

Crohnie Quote of the Day

FUK Crohns! 
(it's the shits!!)

Invisabilities.org

All those in colleges and universities! 

There is a great non profit group helping to bring awareness to those of us with chronic illnesses that no one can see.  It takes "you don't look sick" to another level.  It not only helps those of us WITH the illnesses, but helps those who are learning about them or are living or know someone with the illnesses (and there are many)

Thanks to Queens, McGill and Ottawa Universities for getting on board!  Special thanks to Julie for starting it all!!!   Maybe start a Chapter at your own college or university.

Check them out!!!!!!

http://invisabilities.org/

Crohnie Quote of the Day

Courage, isn't having the strength to go on......
     It's going on, when you don't have the strength

Great New Novel

New novel written by my old neighbour, check it out!!
Getting great reviews

http://www.amazon.com/My-Temporary-Life-ebook/dp/B006O2P13O

The Rectum Bar

No.....I'm serious.  In Vienna, there is a bar called the Rectum Bar and it's shaped like a rectum!! 
Don't believe me?

http://walyou.com/rectum-bar-vienna/

Careful what you order.....

Too, too funny!!  This would make a cool hang out for us Crohnies!

Artist's Laine: eBay Listing

Artist's Laine: eBay Listing: Posted "Heaven and Hell" to eBay

eBay Bust

Well, my artwork I put up didnt sell.....this time.
I'll put it up again.  And again if I have to.  Had quite a few views, so that's good.
Think I'll paint another.  It's funny how I feel like painting, when I don't feel great....

Level 4 on the Crohn's Pain Scale

It's listed here
http://www.ebay.ca/itm/April-Original-Acrylic-Abstract-Print-Canvas-/130693763129?pt=Art_Prints&hash=item1e6df49039

Dear Family and Friends

For all of us who suffer from chronic illnesses...........was told about this from my sister-in-law, thanks, and I thank the person who did this as well.

http://youtu.be/Dfk3F8H5L2o

Crohnie Quote of the Day

"Life is a storm....
You will bask in the sunlight one moment, be shattered on the rocks the next.
It's what you do when that storm comes, that makes you who you are..
You need to look in to the storm and say 'do your worst, for I will do mine'"

eBay

Took the plunge and posted my latest painting on eBay

http://cgi.ebay.ca/ws/eBayISAPI.dll?ViewItem&item=130689883859

Crohn's Pain Scale

I LOVE this!! 

"When a doctor asks you to describe your pain level from 1 - 10, show them this..."

"....and then point to the one that you're feeling"

Crohnie Quote

Saw this on another site and just had to repost.
I think it would look great on a T-shirt........

I've Got Guts

unfortunately they're defective.

New Work

Out of the 'studio' for April......actually, let's call it 'April'

'April'

2012

20" x 16"

artistslaine@yahoo.ca

Crohnie Quote of the Day

Emotionally, I'm done.
     Mentally, I'm drained.
          Physically, I smile.

Stress and Anxiety

Here's a question for you.....

Picture this.  Dinner is done, kids are bathed and in bed, the wife is in bed and comfortable reading a good book, I'm laying on the couch and comfortable, glass of water and snacks on the coffee table beside me, TV is on, it's nice and quiet.......so why am I stressed and anxious?

...............it's hockey playoff time.

Go Canucks!!

Crohn's and Abscesses

I've suffered alot throughout my 20+ years of having Crohn's disease and I've put up with alot of things relating to this f 'ing disease, but it's the abscesses, fissures and fistulas that I can't stand.

I've been doing so well lately but this past week, I've developed yet another abscess.  But it's the type of abscess that's discouraging.  It's a form or peri-anal abscess.  Has anyone ever had a intramuscular peri-anal abscess before?  This will be my second, if it doesn't go away.  The intramuscular part developed over the past two days.  I can't see it, by I can feel it.  It's bad enough I have a fistula in generally the same area, but then add this to it......I can't seem to win. 

The last time I developed this, it ended up with surgical intervention, alot of time off work and at least a week in hospital, not to mention cutting me open and leaving it open to heal.  Fun.

It takes to saying "Pain in the Ass" to a whole new meaning.  Maybe the Imuran isn't working anymore.  Thank god I have some T 3's to take....it's not a comfortable feeling.

Think it's time to do some painting......

Ahhhh, Crap!

Who needs a doctor.

It's funny, after all these years I can tell when I'm getting a flare up even before the obvious signs show up, like swelling and pain.

'Normal' people can tell when they are getting sick simply by having a runny nose, headache, stuffed up, sore throat, watery eyes, red eyes, cough, diarrhea, etc. 

Me?

 I can tell by having a bowel movement.  Yep, that's right.  I can tell that I'm about to get sick....by sitting on the toilet.

It's not very scientific, but simply, it's the change in movements.  Changes in frequency, color, smell and most importantly....gas.  The more gas I start having, combined with the others, I can tell that in just a few days, I'm going to have a flare.  The only thing I can't tell, is the severity.  I know this now because a day later, I got a flare right at my surgical site (as usual). 

I never realized just how talented I really was!
Like I said, who needs a doctor.

It would be nice to be 'normal' again

Awareness

So, March was Disability Awareness Month, for those of you that didn't know, and now that it is April, I'd like to share with you a posting from a fantastic group called "InvisAbilites".  This non-profit group was started by a fantastic woman wanting to bring awareness about people with disabilities that you cannot physically "see", like, in my case, Crohn's Disease.  But it covers many many other ailments as well.  This group is growing and if you would like to start up a Chapter in your area, you only need to get hold of the group through their site. 
Here is her latest post on the sites blog.....

http://invisabilities.org/2012/03/

Thanks again Julie!!

Another Great Article

I found this great article written by Cedar Burnett, who has IBS.  For people like us, it's a must read

http://www.salon.com/2011/04/26/when_nature_calls_mortifying_disclosure/

http://cedarburnett.com

Thanks Cedar!!

Crohn's Disease Breakthrough !!!!!

Take a look at this:

http://www.vancouversun.com/health/Researchers+make+Crohn+disease+breakthrough/6323110/story.html

Could this be the beginning of the end for Crohn's....?
Will Researchers prevail.....?
Will the mice break out of the lab and open a cheese factory....?

Very exciting news for Crohnies around the world!
Fingers crossed.

Stay tuned...........

R.I.P

So, this post is a little different than most and is not Crohn's related at all.  My family lost another great lady in my Aunt, who passed away suddenly a few days ago.  As of yet, we still don't know why.
My Auntie Sue will be missed and was taken far too soon, at only 63.  I wish I could be there, but as she lives in England, I will not be able to go.  My thoughts and prayers are with my cousins and uncle.  I don't know what more to say other than she was a great lady and was there for me when I needed it whenever I visited.  She and I drove the same.....she would always "talk" to the cars in front of her telling them to hurry up, etc.

Gonna miss you.

Simply Abstract

I did this one last year.  It's in my dining room and incorporates colors from my living room and dining room.  The actual size is 30" x 40" x 1.5" simply called "Home"

Booster Juice and the Magic School Bus

My sons have been bugging me for months about going to the local "juicer" called Booster Juice so they can get a drink.  So this past weekend, I relented and took them to the store.  You'd think I was taking them to an all expense paid trip to Toy R Us....wow were they excited!
After explaining the hundreds of combinations, one son chose a small "Funky Monkey" which is a smoothie with Soy chocolate milk, frozen yogurt and bananas.  The other son chose a small strawberry-banana with frozen yogurt smoothie.  Well $8.40 later, yes $8.40 they ended up drinking about a quarter of each over the next few days.  Trying to explain to my two sons though, why daddy can't drink them was interesting.  Everything in that place I can't drink.  The smoothies have yogurt and the juices, well...they're juices and unless I water them down, I'll be going to the bathroom for days!  Needless to say, we won't be going back.

I had an idea though about how to explain it to them in terms they would understand.....with TV.
I put on a DVD from the Magic School Bus series and they were talking about the digestive system.  When they got to the part about the intestines, I paused it and showed them on the TV what, exactly was going on with daddy.  They showed the 'School Bus' in the intestinal tract and I explained that what they were seeing on the screen, daddy no longer had (some small and most of the large intestines).  And sometimes when daddy ate, it felt like a school bus was driving through his tummy.  "Where did it go"? was one response.  I tried to explain that daddy had to have it cut out, and showed them again my scar.  "Can't they put a new one back"?  Oh I wish was my response.  But since I explained it to them, they are a little more chatty about it especially when we eat.  "Can you eat this daddy"?  "Will this hurt you"?  "Is the school bus going through"?

Oh I love the innocence.....

I pray to God everyday they never have to go through what I have been through and am going through.

For Sale

I've decided to put my artwork on the block.  Well, for sale anyway.  Go to my other page...

http://artistslaine.blogspot.com

and the paintings are listed with the prices for originals and prints on stretched canvas.
If you're interested, message me and I can tell you how much it will be to ship (depending on where you live)

Thanks to everyone who already own some of my pieces. 
I'm glad you like them as much as I do.

It's All About Me (A HiStory)

So, I thought people might want to know a little about me.........

I was born in a small town in British Columbia, Canada after my parents immigrated from southern England.  The first born in Canada for our family, which would eventually grow by 3 more.  My upbringing was like any other, nothing out of the ordinary.  Played soccer and music, but eventually ended up in competitive figure skating for many years and from that, coaching.
My life changed forever in 1988, when, after a bout of severe abdominal pain turned into 6 months of endless doctors visits only to discover I was living with and finally diagnosed with Crohn's Disease.  Coming as a total shock, as I rarely got sick or even went to the doctor.  I soon discovered that having Crohn's felt like I had the plague.  I lost "friends" and girlfriends because THEY couldn't "handle it", what a joke.  Even complete strangers would ask if I had AIDS because of the drastic weight loss.  I went from a healthy 175lbs to 115lbs at my worst.   I couldn't hold a job and was either in hospital, on unemployment or welfare.  I had bouts of depression and the "why me", to the point of seriously thinking of suicide......I'm glad I didn't.
Today my life has done a 360.  I'm happier, "healthier", and living with Crohn's and not letting Crohn's control me.  It's taken years of trial and error with foods, drinks and meds, but I think I'm getting closer to figuring it all out and maybe I will never discover it all, but I'll get it right.....maybe.
I met a wonderful woman who didn't care about my illness as it was part of me and that's what she was interested in.  I fell in love with her smile.  We married and now have two great boys.  I've taken everything I have inside me, everything that's happened to me and everything that I have experienced and turned that, into art. 
I started painting in 2010 as part of a personal "art therapy" and I take how I'm feeling and try and convey that on canvas.  Sometimes I go months without painting and then there are times it all comes out in several pieces at once.  Music, figure skating, Crohn's and art put together to make different and interesting abstract pieces.

Crohn's chose me, I didn't choose Crohn's.  Let's see where this ride takes us.......

Probiotics and Crohns Disease

I found this interesting information (amongst others on crohns.net)

http://www.crohns.net/Miva/education/articles/Probiotics_in_the_Treatment_of_Crohns_Disease.shtml

I've been taking probiotics off and on for a few months now and found them beneficial.  In particular, the one I take is in pill form and contains 1 billion CFU (Lactobacillus acidophilus and Bifidobacterium lactis) Advanced 4-Strain.
I did find, after some trial and error, that I get better results taking the pill about 5-10 minutes before eating.

The Imuran treatment seems to be rolling along just fine.  No problems yet, but I don't "feel" any difference than when I wasn't taking it.  Only a scope will tell I guess.
So far so good.....stay the course.

New For 2012

And now for something completely different.........the first painting out of the "studio" for 2012.
Different than the others, but again, it's interesting what you can come up with when you get pissed off with your original idea...and you get.........this:

It's called "Jellyfish"

Tennis Anyone....?

This one falls under the "what else can possibly go wrong?" category.

For months now, I have been "tolerating" neck and shoulder pain / ache and chalked it up to over doing something and have a muscle ache.  The pain eventually started showing up down my left arm and when I tried to grip things with my hand, like pumping gas, etc.  Pop a few Tylenols and Tylenol 3's occasionally and it goes away.....sort of.  (oh and by the way, Ty 3's are great for calming the intestines)
I finally relented and went to the dr to see if she can tell me what's wrong.  Turns out I have a rotator cuff "strain" which explains the shoulder, over compensating for the shoulder, which explains the ache in my neck...... AND tennis elbow, which explains the pain down my arm.  WTF!?
She figured that when I was off in October (two weeks), when I went back to work, I must have strained it somehow.  Funny, but when I started having pain in my arm I thought I was having a heart attack.  Well, my wife didn't think it was funny.

Then yesterday was my brothers bday and went to his house for pizza and cake to celebrate and so our kids can play while we chat.  Now, knowing better, I shouldn't have eaten the cake as it was an ice cream cake, but I thought, well, I'm going home afterwards, no problem.  Well was I wrong.  I spent the next 10 hours back and forth to the bathroom!  But the cake tasted good!!

The next step?  I need to find food I can eat that will make me gain weight.  It's not so easy when you are restricted on what you can eat!

135 lbs just doesn't feel right

Killer Lasagna From Outer Space

This falls in to the category of "Now You Know".

I've eaten alot of things I shouldn't have, knowing it and not knowing it, and I've eaten lasagna many times over my 20+ Crohn's years, but never in my wildest dreams would I have imagined, or thought, that there would be a entree out there, that had the effect this dish did to me yesterday (and in to today).

My wife, one day, made a lasagna dish that we could put in the freezer for a later date and she made it like she normally does, with noodles, meat and cheese.  No worries, because I don't really have any Crohn's side effects from cheese.......or so I thought.

The difference this time?  My wife changed the cheese she uses inside the dish from cottage cheese, to a KILLER cheese from outer space, or Hell, however you want to put it.  The cheese she used...?

cream cheese...... aaaaahhhhh.....nooooooooooooooo!!!!!!!!!

So, that was dinner time on Tuesday.  It's now 24 hours later and I have yet to go to sleep, my ass is as red as an tomato and as raw as a 3rd degree burn.  I'm STILL going to the bathroom, just not every hour.  I've never had this reaction before from eating something.  I've never had cream cheese before, as I don't like it, but thought, in a cooked dish? why not.   Well, did I learn MY lesson.

Mental note.....avoid cream cheese and chalk this up to an experiment gone wrong.

4000 !!

I see by the ole' clock on the wall, that this blog-o-mine has received over 4000 views!  What can I say but, thanks!! 
I never thought in a million years that anyone would be interested what I had to say.  I appreciate everyone coming to visit "me" from all around the world and enjoy reading the comments and emails I get from all.  I may not get back to everyone, but believe me, I read them all and get some real insight in to how people handle Crohn's in different ways.  I have found that humor is the main way people are dealing with this disease. 
Well, people always tell me that laughter is the best medicine.  Maybe we should just get rid of all the dr's who seem to know what they are doing.  Maybe they should open up to different ideas and techniques and not stick to "western medicine" and how they were trained.
As I close in on my 44th birthday, I still believe there is a cure out there.....somewhere.

Thanks for all who listen, especially my lovely wife, who after almost 10 years has stood by me all the way.  Helping, listening and just being there...thanks (and happy birthday!!)

Vern

Stressssssss

It's amazing how some so called 'experts' say there is no relation to Crohn's and stress.  Then there are those other 'experts' that say there is.

Well, I'm pretty sure that all of us Crohn's sufferers will say, ummm....hell yes there is!  Lately, things at work have been very stressful and its amazing how I feel better when I get home.  I start feeling like crap getting ready to go to work in the morning and my neck and left shoulder start to tense up, even on the drive to work.  Then, at lunch and after work, everything is fine....weird.  Maybe it's just in my head.....but there isn't ANY relation to stress and Crohn's.

So, it's been a stressful, achey and painful few months.
But it can only make you stronger......right?  If not, kill you.

Funny How Things Work Out

So, I DID read my last post to my two boys.  They enjoyed it, and kinda figured it was about them, but maybe, just maybe.....they got the message.

Sure enough, since I read them the new classic bedtime story called "The Prince's and the Pee" there has not been one drop of misdirected pee, anywhere.  It helps me so so so much at times. 

Thank you to my two boys.

Good boys.

Bedtime Story

Tonight, I thought I would come up with a made up bedtime story for my boys.  Made up, of course, based on fact.  It sort of went like this..............

Once upon a time in the land of Oz, there lived a lovely family in a quaint little 3 bedroom, split level, totally renovated previously foreclosed home on a quiet tree lined cul de sac.
Inside this lovely 'castle' there lived King Daddy, Queen Mummy and their fantastically cute Prince's, Prince Bee and Prince Cee.
Now, the two Prince's, 6 and 4, loved to play, read and play games.  They were great little boys.  They were good at listening to their Mum and Dad and were always polite, saying yes please and no thank you without having to be asked.
The two Prince's loved getting ready for bed the best.  When Mum and Dad said it was time for bed, the two Prince's went straight to their bed chambers and got into their pajamas, put their dirty clothes in the hamper, brushed their teeth, went to the washroom, jumped into bed, tucked themselves in and waited patiently for their parents to kiss them good night.  The King and Queen kissed them goodnight, sang them a song, turned out the lights and closed the door.
Earlier in the night, at dinner, the King mistakenly (and some would say stupidly) ate a Dilly Bar from the local Dairy Queen, for dessert.  The King, you see, suffers from Crohn's Disease and eating ice cream is, well, generally, frowned upon.  The King scurried quickly to the royal bath chambers because he really, really had to go.  Now, as anyone knows with someone who suffers from Crohn's, sometimes you cannot delay, even for a minute.  So, to the Kings surprise, the Prince's missed the toilet......again....when they went to the washroom earlier.  On the toilet and the floor.  So, whilst the King tried to hold on the best he could, doing the Crohnie Dance, he had to clean it all up before he could go. 
Thank goodness, there was time. 
So the next day, the King and Queen, once again, tried to explain to the wonderful Prince's that they needed to remember to "aim" accordingly, not only because of the King, but because it's not THAT hard to do.
And they lived happily ever after.........(as long as they aimed straight)


This of course is just a story, but it brings to light the fact that as a sufferer of Crohn's, when you have to go, you have to go and every second counts.  Sometimes, any delay can be disaster.

The moral of this "story"?         Have girls.

The Honey (Sorry But I Can't) Do List

The whole problem with living with a chronic illness, especially Crohn's, is the fact that no matter how much I want to do something, my body says "Oh no you don't".

Normally, every weekend I try and clean the house.  Vacuum, dust, laundry, etc.  becomes a chore just to get it done.  Sometimes I just can't do it, though I want to.

So then there's the "Honey Do List", or as I call it, the "Honey, sorry but I can't Do List".  Since we bought our house almost three years ago, there are things I still haven't finished.  The main thing is finishing the baseboards and door mouldings.  I finished the laundry/craft room, downstairs bathroom, playroom/family room, kitchen, dining room, living room, upstairs bathroom and one bedroom.  Alot, I know, but I still have one bedroom, master bedroom, master bathroom, hallway and around four doors upstairs.

No matter how much I want to complete it, it gets put on the back burner.  Not to mention all the other things on the list.  We still have to replace all the windows and I want to tackle the fireplace with a new brick facade and mantle and add a gas fireplace instead of the ugly wood burning one we have (thats never used).

There are good days and bad, but mainly, as a Crohnie, there is no energy left to do the things you want to do sometimes.  Believe it or not, sometimes I get winded just walking up the stairs in our house.
Do I hate having Crohn's?....sure. 
Do I hate not doing things I want to?....sure.
Do I have to shut up sometimes and deal with it?.....yes.

"This Is Not A Good Time..."

Has anyone seen the new Dukoral commercial for traveler's diarrhea??
I know....I know....blunt huh?  But you have to see it and then you're going to say...
Oooookayyy, what has that got to do with Crohn's??
AHA!!  You can easily take that commercial and convert it to an ad for Crohn's because, at times, it is exactly the same!!!
Watch.......

http://youtu.be/gbuKdnX8m1o

........it happens.

2012....Same as 2011

So it looks as though 2012 will start the same as 2011 did.....sore.  I developed a nice little abcess over night on the 30th, so needless to say, I didn't sleep that night.  Uncomfortable.  The whole day on the 31st sucked.  When I should be celebrating with family for New Years, I spent the day in bed trying to rest, and switched to a liquid diet to try and help.  Missed out on Chinese food.

On the plus side, it seems to have worked.  I woke this morning with it having "burst".  But HOLY CRAP!! it's sore!

How does the saying go?  As much as things change, they seem to stay the same.