Tuesday, November 25, 2008

A Brief (Ok maybe not brief) History

To catch everyone up-to-speed on why I am where I am in this crazy thing called IBD, thought it would be best to do a quick recap of the path that's led me to this point. I plan on doing a separate post with a glossary of terms, but feel free to ask questions as well.

I was diagnosed with Ulcerative Colitis in August 2003 (Crohn's Disease and UC make up Inflammatory Bowel Diseases). During the next four years I was able to control my symptoms with medical remedies. I had periods of active disease (flares) and remissions, I knew it was a chronic illness (something I would deal with forever) but thought with medicine and good self-care it would all be manageable. 

In January of 2007 I began the big flare that wouldn't die. I ended up with pneumonia that same month making my symptoms worse. By February, after doing all the things I knew I should be doing, I finally went to my GI and she put me on a higher dose of Prednisone aka the devil drug (I was already on a low dose for the pneumonia) and she also tested me for a bacterial infection called C-difficile. I went on my way, eating a bland diet, resting and taking my meds, but things got worse and on March 2, 2007 I ended up in the hospital because I could not stand up anymore.

I spent most of March 2007 in the hospital, I was home a total of 5 random days that month. I lost a significant amount of weight and my colon just wasn't happy. At this point my surgeon mentioned to me that in all likelihood I would need to have my colon removed...yikes. I wasn't ready to accept such a life-altering procedure just yet so I embarked on a six month journey to try and get my UC back in remission -- I tried Colazal, Remicade, 6mP, diet modifications, etc all the while on high-dose prednisone. Needless to say I was medicine resistant and steroid dependant, not a good combo. In October 2007 we made the difficult decision to move forward with surgery. After a second opinion, everyone agreed that the colon would have to come out soon and better to schedule the surgery than end up with an emergency situation.

On November 20, 2007 I had a total colectomy (removed my appendix, large intestine/colon and most of my rectum), created a j-pouch and hooked up a temporary ileostomy -- this was supposed to cure me of UC. For the next four months while my new plumbing, aka the j-pouch healed on the inside, I became very familiar with my friend stubby the stoma (the part of my small intestine that stuck out of my stomach and dumped waste into a bag that I changed -- this was the ileostomy) I'm bummed we don't have any pictures, it was truly fascinating but pun intended it was still a crappy time. 

On March 25, 2008 I had another surgery to reverse my ileostomy -- good bye stubby -- and hook up my new internal plumbing system. Since then I have been trying to get back to a somewhat normal state, which has been to say the least a long road. I've been living with constant shooting pain, a diaper rash like no other and incontinence; not to mention ridiculous fatigue.

Ok, hang in there we are almost caught up. I've spent the last months trying to get my surgeon to listen to me and take my symptoms seriously and after a not-so-pretty encounter with the person we'll call Ego for this blogs sake, I was finally referred to a new Gastroenterologist who we'll call The Angel. After only one appointment she realized that I was a specialized case and referred me to the IBD Center at Cedars Sinai, the West Coast's leader in all things Crohn's, UC and Pouch related. 

Our first appointment two weeks ago was amazing, they spent two hours with the hubby and me going through every part of my long history. They asked amazing questions and came to the conclusion that I might actually have Crohn's, they referred me for three tests -- an EGD/pouchoscopy; an MRI of the pelvis; and a pouchogram. I start those tests today!!!

So now we may be embarking on an even longer relationship with IBD. I'll keep you posted on what happens next and what that actually means in real-people terms. And I promise to not make any more posts nearly this long:) 


Mrs.Newton said...

I am so proud of you for finally doing your blog. It must feel like such a sense of accomplishment in this long journey. We are all so proud of you and your enduring spirit! You are an inspiration.

todd storch said...

Al, have they been testing your SED rate? If so, is it high, indicating a lot of inflammation?
With the pouchoscopy and pouchogram, how much of your remaining intestines (basically just the small intestines since that's all that's left) do they look at? I'm asking because I'm curious as to what the source of your shooting pain is (not that you know, obviously that's why you're getting these tests done!)... is it related to the colectomy/ileostomy or is it because you're flaring somewhere else in your small intestine?

Good luck with your test today. You have a lot of supporters who love you very much! I'm sure I can speak for everybody when I say we hope the solution to your anguish is found asap!

Carol Miller said...

Dear Al,

We are so happy to see that you have started a blog... it will be a great way to keep up to date and not fear we are bugging you too much.

As you know Erica Murray (our young friend who has leukemia) has a blog and it is truly amazing the support, love, prayers and encouragement she receives from friends and strangers alike. I have no doubt that you will experience the same and will find comfort and strength from your friends and family. And besides, more prayers never hurt!!!

We are so happy that you have finally found someone who will listen to you and work toward a resolution of your problem. You are an EXTRAORDINARILY strong, courageous and special person and have been an inspiration to all of us. We send our deepest, strongest, most fervent wishes for your recovery.

We look forward to seeing you on Thanksgiving.(and we have much to be thankful for..)

Much love,
Carol & Dennis

Al said...

Thanks Everyone for your positive and supportive feedback!

Todd as to your question, they are doing all of these tests to figure out where my pain is coming from, don't know if it's j-pouch related or other GI inflammation. I had blood work done yesterday so we'll see what it says.