I would first like to start off by thanking everybody for their encouraging posts on facebook, encouraging phone calls, texts, and emails. You are each individually helping me find the strength and courage I need to continue down this difficult path.
A little background for those of you who don't know the series of events that has happened over the past couple of days: On Tuesday afternoon I was hospitalized by my gastroenterologist due to severe malnutrition and an uncontrollable bloody flare. I was having roughly 20 extremely crampy, bloody, bowel movements a day. I was losing a bit of blood and there wasn't any indication that it was going to get better.
The course of events that brought me to this point...
As I have stated on some of my earlier posts this year, I started flaring lightly towards the end of January. The light flare was controlled by the suppository canasa, as all symptoms would cease when the suppository was used. I was on a thirty day cycle with the suppository, and every time I stopped, the light symptoms would return. Because this happened twice I was instructed to stay on the suppositories (in conjunction with the Remicade Infusions and daily Lialda use). This routine worked great until I got food poisoning from an undercooked piece of chicken in May. We have been unable to get complete control of the flare ever since.
In the meantime, the Remicade was becoming less and less effective every time I got an infusion (I have received a total of 3 infusions for 2010). Remicade is supposed to last for two months, but mine went from lasting 8 weeks every time I got it in 2009, down to 3 weeks at it's weakest this year. This was not good enough for me, as I've never been one-hundred percent comfy taking a biologic.
So, Remicade, this pic is for you, from me, with love:
Remicade is made out of mouse antibodies, hence the pic
Ah, how I digress.
My curent update...
I had numerous tests done from hospitalization day one, and based off of the results have been given the most fantastic news one could possibly receive in my situation. I mean, regardless of what happens from this point forward, nothing can take the joy, faith, and hope I have after receiving this news from both the colorectal surgeon and my gastro doc.
All of my tests (including the colonoscopy I received on Thursday) points towards colitis NOT crohn's. This is HUGE for me. HUGE! I cannot quite put into words the genuine huge sigh of relief I made when I found this news out. I'm still on cloud nine over it...and that is no over-exaggeration.
For those of you not too familiar with the differences, I'll give you a little background. Crohn's Disease and Ulcerative Colitis are chronic illnesses, both of which are classified as Irritable Bowel Disease. This is completely different from Irritable Bowel Syndrome.
Crohn's Disease can affect your entire digestive tract, from your espophagus all the way down to your anus. Colitis, on the other hand, is restricted solely to your large intestine. They are both nasty illnesses and are often misdiagnosed as the other since they both have similar symptoms.
Another major difference between the two are, colitis can be "cured," so to speak, if the entire colon is removed. Because one cannot live without the entire digestive tract, surgery, though often necessary for crohn's patients, often gives temporary but not permanent relief.
So, you can understand my position being absolutely ecstatic about everything pointing towards colitis. Like I said, even if the colon may have to go in the future, I can deal with that. So I poop in a bag, who cares. My friend Adrienne, my hubby Matt, and I already have plans for bags with some supa haute couture decorations, should that time come. I'm one to always try to find the positives in the negatives, and, well, this will definitely keep me rolling. Should the time come, you all will have a visual on what we've been talking about, as I'll proudly bare all (c'mon now, y'all know I'm not the shy type)!!
My current course of action is now this:
My colonoscopy showed that though my colon is extremely diseased, it is starting to regenerate its tissues, cells, skin, etc. It is trying to heal, and we believe this is due to the steroids that I am getting through IV. Steroids have always put me in remission in the past, but should not be used long term (check my old posts to see what happens when you're on the "juice" for long periods of time). When I was getting treated in Virginia the docs used steroids as a crutch, and should have never had me on them that long (on and off for 2.5 years). My super awesome gastro doc here in WA is only putting me on IV steroids for a week, and that's it. And that, my friends, is when the true test begins. I was expecting the steroids to work, but what will happen when I'm off of them? We shall all find out together.
My doc is hoping that once I'm off the steroids the meds Lialda and Azathioprine will pick up where the steroids left off and help bring my colon back to health. If they do not, then my colon will come out. As of now I still have a 50/50 chance of getting my colon removed. We really won't know if it's going to happen until a few days to a few weeks once I'm off the IV steroids (which I get my last dosage of steroids on Tuesday). The docs, myself, nor anybody on this earth has control on what will happen next. It is all truly in God's hands. That is how it is meant to be, and I am 100% okay with that.
I want you all to know that I am at peace with the fact that my colon may have to be removed. I am a realist, and this is what happens when you have a severe form of IBD. I am OK with it. Life moves on, and will move in the right direction.
This year has been rough for me b/c I have had symptoms for pretty much the entire year of 2010. It wasn't too bad until May, when my quality of life changed dramatically as I often times had trouble controlling my bowels. Every time I got into a car I was terrified of having an accident. To help calm my anxiety (which I'd never suffered from before), I made a makeshift toilet and put it in my car. I'm quite proud of my toilet really. I cut off 2/3rds of a paper grocery bag and placed a garbage bag inside. It wasn't perfect, but it definitely would have gotten the job done! I almost had to use it once, in fact I had my pants down to my ankles in public, but I'll save that story for another time!
Matt and I went to Hawaii with my parents in late June and I always had the underlying thought in my mind of having an accident. Activities were tailored to bathroom availability. I had to drastically limit what I ate to try and counter any type of possible bowel urge. Beach time was somewhat stressful. I mean, who wants to poop in the gorgeous hawaiian water? I didn't want to be responsible for poisoned fish! Sheesh! In all seriousness though, it was nice getting some sun and spending time with family, but definitely wasn't the worry free, relaxing Hawaiin vacation that I was anticipating.
The only relief I got in between bouts was the small blanket of time the Remicade Infusions got me through (which did get me through a quick trip to Vegas, too bad I hadn't figured it out yet when we went to Hawaii).
Fast forward to this past Tuesday, where I had not left my house for almost three weeks with very few exceptions. My husband wanted to take me out for my birthday (August 17th) and I didn't want to go due to fear of having to constantly run to the bathroom at the restaurant. It was a depressing day because not only did I have absolutely no control of what was going on with my body, but I did not even recognize my own reflection in the mirror after showering to go to my birthday dinner. The girl staring back at me in the mirror was not a face I recognized.
The only place I made a priority to go to was church, because I needed the spiritual nourishment of communion. Without faith, hope, and love we have nothing. I have kept my faith through the darkest hours, and have kept my faith when I've been well. If this disease has taught me anything, it is to never, ever give up on faith.
Once the more severe symptoms came in May I started to starve myself in order to get day to day things done. Grocery store, starve. Out to dinner that night, eat minimally in the morning and then starve. Doctors visit in Seattle, starve. That was the only way to guarantee that I would not have an accident. And even then, I was scared one might "sneak out." If I knew I was going somewhere I would either eat as minimally as I could or not eat at all, depending on how severe the symptoms were at the time and what time the scheduled event was. That, my friends, got old REALLY fast. I couldn't keep it up anymore. It was breaking me, both physically and mentally. It was really trying to break my spirit, but I didn't let it...
I have never struggled so much emotionally as I have since May. But, I'm in good hands now. And it has now come to an end. One way or another, I will get well, with or without my colon. It's all in God's hands now, and whatever the outcome may be, I will accept and welcome it with open arms.
"Head Full of Doubt / Road Full of Promise" by The Avette Brothers has been my theme song through this ordeal. If you haven't heard it, download it. It's a good one!
I will keep you all updated via my blog as I hear anything else! It took me a while to write this entry b/c I often get tired and have to take several breaks in between. However, now that all the pertinent info is out I'll update much more often with quick little posts!! Again, thank you ALL for your support. It means SO MUCH to both Matt and I! Until next time...