Wednesday, December 3, 2014

Crohn's Awareness Week - December 1-7

This week is Crohn's Awareness week.   Actually is it IBD Awareness Week and Crohns is an IBD. 
IBD = Inflammatory Bowel Disease
Crohns Disease is ONE of the Inflammatory Bowel Diseases. 

Crohns Disease has become a major part of my life since Pumpkin Pie got diagnosed when she was about 12.   We were at a pediatric rheumatoid arthritis specialist when it came about.  She has such bad joint pain for the previous year or two.  Her regular pediatrician thought it was growing pains and monitored it.  When it didn't get better, he sent her to a specialist.  I remember one of the questions was how many times she moved her bowels a day.  It was a bit high, but she was a nervous kinda kid and though that was why, as my mom had anxieties and did the same.  After doing a genetic blood test on her, the results came back that she had a marker for Crohns.  Next was a colonoscopy and endoscopy and biopsies.   Those biopsies tested positive for Crohns. 

We learned alot over the past 8 years about Crohns.  Especially what it effects: joints, growth, eyes.  She struggles with joint pain everywhere when it is cold and rainy.  She is very short for her age, and Crohns may have had some effect on her Stargardt's Degenerative eye disease.  She has had 5 endoscopies and colonoscopies.  She has had her 1st surgery, last summer.  Her Terminal Ileum was taken out PLUS 6 inches of her large intestine. 

She is currently on a different medicine - Remicade.  This is administered via infusions which have us in the hospital for over 3 hours.   There are scary side effects with all the drugs that help control or put into this disease into remission.  This medicine comes with a chance of her getting Teenage Incurable Lymphoma.   We have discussed it and for her, suffering as long as she has with all the joint aches, and bowel pain...she willing to try it.   She is one brave girl! 

Me and my girl making "lemonade out of lemons".

So I would like to take a little time just to inform you...educate you about Crohns.  

#1- Crohns is an autoimmune disease. Which means " your immune system attacks your own body.  In this case, it’s attacking the digestive system.  An autoimmune disease means it’s more of a systemic disorder- it’s how your immune system cells are programmed, versus a food allergy or a problem with how the digestive system functions, like with irritable bowel syndrome.  ...the immune system incorrectly tags some elements of the digestive system as “bad”, normally reserved for infections like a cold or the flu.  The immune system is trying to protect the body, so it attacks the person’s own digestive system, because it’s confused.
This can create turmoil within the digestive tract.  Imagine a civil war between two systems of your body.  All this stress creates ulcers and inflammation, and a pretty bad environment within your bowels.  When normal stuff like food, water, and nutrients pass through, they encounter this war zone, and try to exit the body as quickly as possible, which is how sudden, urgent bowel movements occur.  Sometimes they exit before the digestive system can do it’s job, like absorbing the nutrients and water, and solidifying the waste." - What is IBD? - The Great Bowel Movement.

#2  Just because they look "fine and healthy" on the outside means nothing.  Jobs are hard to get when you have to spend the majority of your shift in the bathroom.  That doesn't include the pain of cramping and constant diarrhea.  

#3 Eating is a big part of it and one of the hardest things about the disease.  Very few things DON'T effect Crohns.   And if you are diagnosed with Crohns AND another IBD disease - Colitis, like Pumpkin Pie is, it makes it even worse.  
What is the difference between Crohn's and Colitis?
 "The main differences between Crohn’s Disease and Ulcerative Colitis include the following: Crohn’s can be anywhere in the GI tract from the mouth to the anus, and inflammation can be “transmural” – meaning it can affect all layers of the bowel wall. Crohn’s inflammation is not continuous, and it is often described as having a “cobblestone” bumpy appearance. Patients of Crohn’s tend to experience more complications such as fistulas, strictures, and obstructions. In Ulcerative Colitis, the inflammation is exclusively in the colon (large intestines). It is generally in one continuous patch, and has a smoother appearance than Crohn’s. However, much of the experience of these two diseases is very similar, which is why they are often referred to collectively as IBD". - What is IBD? - The Great Bowel Movement.

#4  It isn't JUST about the bathroom visits.  As I said it has effected her joints, growth, eyes, and nutrition.  It also has effected her self esteem and she has bouts of depression and anxiety.  College has been pretty difficult with teachers who are unwilling to understand how this disease works and how it effect her. 

#5 No one knows "how" some one gets Crohns nor is there a cure. 

If you would like to learn more about Crohns or Colitis please check out the links below.  They are all from The Great Bowel Movement

Why is Awareness Important?

What is IBD?

For bosses, caregivers, friends, boyfriends/girlfriends, teachers, etc - What I want you to know.

What to say to patients with IBD.