Healthy on the outside- suffering on the inside.

by Brandee · 2 comments

Ah, where to begin? I’ve been away for several months and avoiding my blogging duties, though it has not been far from my mind during this time. A lot of things have happened in a very short time. I’ve lost two really good people that I cared for… My friend Steve, you’ve read about him in this blog, passed away unexpectedly. Ellie, my dear friend who commented regularly here; she gracefully exited, as well. A day that I still cannot think about without wanting to vomit. Something that I still refuse to speak about to anyone- maybe someday. Maybe not.

I’ve maintained activity with our Facebook page. Membership has steadily grown over time and I seem to be lending some value to the cause.

So, what’s been going on with me? Well, a lot and absolutely nothing- depending on your view. In the early part of December it was confirmed by a Small Bowel Follow-through and Dr. Evil what I had already known; I’d come out of remission from the Crohn’s Disease. I had seen him in November and requested that he order the procedure. I’d been keeping it to myself for about 2 months, but ‘something’ felt amiss to me inside. When the skin welts/rashes started reappearing, I knew it was bad news and thus, requested the SBF. After my bowel resection, I was given 2-10 years of possible remission before the disease came back; I made it just shy of 17 months.

I’ve stated in earlier posts that I was fearful of the time when I would come out of remission and the Crohn’s would reappear in my colon (large intestine). At the moment, the Crohn’s is just teasing me like a bully in the schoolyard. At the time of my initial resection, there was a 3 inch section of healthy, viable small intestine before it transitioned into the large intestine (colon). My surgeon made the decision to remove 2 of those 3 inches. The thinking was to be sure all diseased tissue was removed to lessen the chances it would hit my colon when it returned. I fully stand by my surgeon in his decision to do this. In retrospect,  it would not have made a difference if he had left those extra 2 inches intact. Unfortunately, the Crohn’s has reappeared in that 1 inch section :)

Tomorrow I am scheduled for a Colonoscopy, tie off an Intestinal Varices and an Endoscopic Balloon Dilatation (see colon) procedure. In a nutshell, they are going to insert a scope with a balloon on the tip. The balloon will be expanded with a prayer that it will open up the area where my small intestine meets my large intestine. Providing of course, Dr. Evil can get the scope up far enough to the problem area. I would not say that I am feeling negative about the procedure, but at this moment, I do not think that it will end the real issue. Opening the narrowing will give me relief in the moment, yes, but the inflammation is still going to be present. I fear I am heading for an Ostomy, but I cannot think like that, nor will I.

Since mid-December I have been placed back on Prednisone, Asacol (new for me) and my 6-MP dosage has been increased. My symptoms of severe fatigue, mild to severe pain, intermittent rashes, welts, etc.,  have worsened in the past month. I worry about the condition of the inflammation because I was originally scheduled two weeks ago, but had to cancel because I had a cold with a fever.

I am positive and hopeful that tomorrow will bring me some relief. I am absolutely positive that what I must do today to prepare for the procedure will make me cranky, sick and want to run away to a tropical island :) Ah, the joys of Movi-Prep and Magnesium Citrate! However, I must say that I am happy I found the latter in cherry flavor this time.

“Healthy on the outside- suffering on the inside.” How sadly true is that? I am sure anyone with Crohn’s will agree that people do not understand just how sick you are inside. Why? Because to the lay person, you may look fine on the outside. It’s not like a scar, a bruise, a cast for a broken bone or anything visually tangible. It’s unseen, unspoken and therefore, to most, does not exist.

{ 2 comments }

avatar Renee Buchanan January 29, 2010 at 4:49 PM

I have missed you. Please keep writing… this is one of my few sources that feels personal and keep me floating.

I am sorry for all your sorrow.

Thank you Brandee :)
Renee

avatar Brandee January 30, 2010 at 8:25 PM

Hi, Renee! Nice to read from you again! I’ll be posting a bit more regularly for now :)

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