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.