Archive | January, 2013

A Birthday for my Bowels!

16 Jan
No 13 year old wants to find out they have a very serious, incurable, chronic illness, but I was so relived to finally be getting some answers and that I was not crazy.

No 13 year old wants to find out they have a very serious, incurable, chronic illness, but I was so relived to finally be getting some answers and that I was not crazy.

I don’t remember the exact date, but I finally got my diagnosis of Crohn’s disease 23 years ago this month. After years of childhood illness, countless pediatricians, 2 pediatric gastroenterologist, hospitalizations and even an emergency blood transfusion, we at last had an answer. My family and I were more than ready for a diagnosis, any diagnosis. Even though I knew virtually nothing about Crohn’s disease I was just happy that I wasn’t crazy, and I now had proof. I had the overwhelming urge to rub this information in the face of people, inside and outside of the medical field, who thought my condition was psychosomatic. IN YOUR FACE!  BOO YA! (Too much?)

Just a month after my diagnosis in 1990 I celebrated my 13th birthday. We were happy to have answers, but this was just the beginning of  my fight. I weighed 70 lbs. at the time of my diagnosis. I HATE Prednisone, but it saved my life in the the beginning. I actually doubled my weight in just a few months. I spent 6 YEARS, my ENTIRE teenage years on high dose Prednisone. Just what every teenage girl wants; a moon face, mood swings that make PMS look like a country picnic, acne, hump back, etc. I think I should have gotten an award for all of that. Seriously, where is my award? At 19, I finally successfully got myself off the Prednisone. I remember feeling so accomplished when I made my goal of being steroid free (another reason for that award). I did it so very slowly and it took me close to a year to get completely off of it. A few years ago Jerry Lewis went into drug rehab to get off of Prednisone. Some people thought that was odd, but not me; it’s hard stuff to come off.  What a love/hate (mostly hate) relationship we have with steroids!

I was not planning on writing that much about Prednisone. Same thing always happens at support group. Some meetings can end up being no more that a  flippin’ hate Prednisone rally. My mind went there organically today, so I guess you just have to go with it.

Blessings of health to all!

~BOTB

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Welcome to the Belle of the Bowel blog!

14 Jan

I have always believed that the very first post in a brand new blog is the hardest one you will ever have to write. It should be something unique and powerful. Like the first line of a good book, you have to grab those readers before they ever even knew what hit them. That being said, I have been pondering this post for a couple of days and I have absolutely nothing. Instead of the razzle dazzle, I will just tell you why I started this blog.

This blog is my thoughts on being a nearly lifelong Crohn’s disease patient. Crohn’s disease is one of the two forms of Inflammatory Bowel Disease (IBD). It is an autoimmune disease that causes my own body to reject and attack  my digestive system. Many people ask how it feels to have active Crohn’s disease. Think back to the worst stomach flu or food poisoning that you have ever had. Now imagine waking up feeling like that not just for days or even a week, but feeling that way for months or years. This time last year I could never have started a project like this. My whole body was completely concentrated on survival. I was being fed through an IV for 12 hours a day and coming to terms with the fact that I would indeed have to have a seventh major surgery on my small bowel. I had my surgery in May and am finally feeling like I’m coming out of the survival mode fog. If my history is any indication, the fog could fall upon me again at any time. I do hope my awesome fellow IBD survivors enjoy my blog. The selfish truth is that I really need to share my experiences when I feel capable of doing it. I love to write, but my brain turns to mush when I am sick. I need to get a lot of this out of my system in case “mush” overtakes me once again. Mush brain does not RSVP and can show up at any place at any time. With a fresh new year, this journal gives me something positive to think and act on. There are so many amazing blogs, vlogs, social network sites, etc. for folks with IBD. Because of that, this blog does seem to be quite redundant to me. Oh, well. I came up with such a clever alliteration for the title, Belle of the Bowel, how could I not start a blog! I was first going to be The Countess of Crohn’s, but BOTB is so much more me. (Please know humor and sarcasm have been some of the best medicine I have found. If you have no sense of humor; this may not be the right blog for you. Thanks for stopping by!)

Being trapped in a pirate’s booty chest is exactly how it feels to have a serious chronic illness. The mind and soul want so much, but the body screams out, “HELL NO!” (Ironically in a pirate voice. ARRR!)

I’m still trying to find my way through WordPress, so I hope to post much more very soon. As any good southern belle would say, “y’all come back now, ya hear!”

~BOTB

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