Trying it on for size

December 9, 2010

Now that I've made an appointment with Dr. T to consult about the j-pouch revision surgery, I've been living in a different mental space, preparing myself for life with an ostomy again. I am determined not to let this rock my world the way it did the first time around. You can do this Abby. You can handle it.

There were lots of things that made life with an ostomy difficult for me, one being that I never got a break from it. I could never just turn off the juices in my system and take my bag off and be free. It always had to be there, attached to my stomach, collecting bile if nothing else. It didn't take long for it to fill to a point that I could feel it bounce against my side as I walked. It was like I had a six inch long, four inch wide water balloon attached to me. Granted, I rarely let it fill up entirely before emptying it (if that happened it was usually at night when I was sleeping), but you get the picture.

Then there was the art of emptying the bag. Oh how soon I forget! It's not like you take the bag off and empty it that way. Oh no. The bag stays attached to your stomach as you unclip and then unfold the bottom of it and lean just so, so that you can empty the contents between your legs into the toilet. Without sounding too crude but wanting to give you an accurate depiction, let me just say that the scent associated with stool that has not been fully processed through one's colon carries quite the odor with it.

By far I think the hardest part of having the diverted ostomy for me was how quickly food went from my mouth to my bag. I kid you not, many a time I sat at a meal with friends or family and had not finished my meal before I began to feel the contents of my dinner begin to fill my bag. (I ate a lot slower then because I had to meticulously chew my food so I wouldn't get an obstruction.) I lost my appetite as a result. Seriously lost my appetite. I was losing around 3 pounds a week, and that was with me trying to gain weight. Hydration was hard then too. I felt faint throughout the day every day. And that was with me doing a liter of IV fluids every night at home.

I will say though, when I had my end ostomy (called an end ostomy because the part that stuck out of my stomach was the very end of my small intestine), that was not a problem. The food had further to travel and took longer to process before it reached my bag. I was actually able to get up to my pre-UC weight when I had it. If I have the revision surgery, I will have a diverted ostomy, not an end one. With a diverted ostomy, a hole is made somewhere in the middle of the length of my small intestine and pulled through a hole in my stomach to divert my stool from going through the rest of my system where other revisions have been made so those revisions can heal. Make sense?

My understanding is that one of the main risks in doing the revision surgery is that the veins (or whatever they are technically called) that supply blood to my j-pouch will not be long enough after the j-pouched is revised. The j-pouch can't function without that blood supply. If that happens, the surgery would not be successful and I could end up with a permanent end ostomy instead. I've been told the risk of that happening is low. I have heard of people in that situation whose surgeons attached the vein to the inside of the abdomen for a year or more to try to stretch it out so that the revision surgery could be completed later, though it didn't always stretch as necessary. Crazy huh?

This is where hope comes in to play for me. I am not going to live in fear of the worst happening. I'm going to hope for the best. I'm going to have faith that if the worst does happen, I will summon the strength and (intestinal) fortitude to move forward with my life. Even if the revision isn't successful and I end up with a permanent ostomy instead of a temporary one, the disease will be gone from my body. I can't help but believe that I will experience better health regardless. People with permanent ostomies are active, vibrant people. I will be one of those people, no matter what!

I know I'm writing this as though I've already decided to do the revision surgery, but I'm not 100% there yet. I'm trying the decision on for size right now. So far, it feels like the best fit of all my options. My appointment with Dr. T isn't till January 5th, so I've got a little time to check out the fit in my full length mirror.