Thursday – June 11, 2015

Okay Okay! You can stop refreshing your internet in hopes you’ll find an email of an updated blog entry. Let’s back track a few days, I apologize for my lack of posts… I have been busy. Let’s see. Tuesday night I stayed at my parents so that we could wake up and head to Chapel Hill for my Pre Op Surgery. I woke up at 5 in the morning to another leak. As I am sure you can imagine, I was pissed. I threw my belt in the washer and began a bag change. I have all supplies at my parents for situations such as this one, so I don’t have to pack them all up every time I head up to their house. What I didn’t realize… is that there was no more adhesive remover at their house. Let’s just say, ripping off the bag with water alone, is damn near impossible… and hurts like hell. I managed to rip it off and begin. My skin wasn’t terrible. Definitely a little irritation, but I’ve seen it a lot worse. I finished by 6. By then, pointless to go back to sleep. I ate some breakfast and folded some laundry and got in the car for the 3 hour drive up to Chapel Hill. I slept the whole way. We got there at 11… but didn’t end up seeing my surgeon until after 12!

Let me take you through all the things we spoke about, starting with my frequent diarrhea. My surgeon said an excellent patient has 80% thick stool and about 20% diarrhea. During the first month or so with the bag I was certainly at that number. But the passed 2 weeks, as you can attest to, has certainly not been the case. We went over the obvious foods to help thicken and what things to avoid. We spoke about taking imodium on a consistent basis (8 a day) to see if that helps. He was a bit unsure why things took a turn all of a sudden. He suggested a possible chance of an infection such as CDIFF, though very rare to get without a colon, still possible. He was very doubtful that that was the case though, as I have no other symptoms. He did want to take a stool sample though, just to make sure. The tough part about the frequent diarrhea, and what he alluded to as we spoke was, that the output that is occurring now, will be the output that happens when the bag is inside. He says that every one is different. People that aren’t sick all have their normal poop patterns. Some go every morning. Some go every single day after a cup of coffee. Some go 2-3 times a day and some people go 2-3 times a week. It all depends. Maybe I just react more strongly to certain foods. A real bummer. He mentioned that he’s got some patients with a JPOUCH that go 2-3 times a day. He also has some patients he can’t get under 10 a day. That’s a tough thing to hear. He’s got some patients that are permanently taking imodium, and some that don’t take any at all. It’s a nerve racking thing. I certainly don’t want to have gone through all of this just to be going to the bathroom 10 times a day. No going back now I suppose. And sure, anything is better than living with the disease….right? As I get closer I think I get more nervous. Because it was a pre-op meeting and the last time I’ll see him before surgery, he also had to go over all the “risks.” Though rare, it’s never fun to hear all that shit. He did say that this surgery would be require a longer recovery, which I did not expect. Although I will be stronger, he is still opening me up and this time because he is sewing me up and all that jazz it’ll be a bit tougher. Didn’t love that. Also, he said the surgery going perfectly to plan was 80% to 15%. Uhhhhh, wasn’t really expecting that either. Sure, that’s a good percentage… but still… 15% is 15%. What they are doing is opening me up, taking the intestine that is currently sticking out of my stomach and pulling that down to attach to the pouch he will create. He says sometimes when he pulls the intestine if it is not stretching enough and too tight, what they have to do is wait. Thus, giving me another bag for 6-8 weeks and then going at it again. That freaks me out. Knowing there is a possibility I could wake up after a 5 hour surgery to a bag still on my stomach. To have to recover completely again from that, just to do it all over again! No thank you. There could be a potential leak at the site where he connects the intestine to the pouch, sometimes requiring a temporary pouch as well while the intestine stays connected to the pouch. Again, all very rare, but still, it’d be just my luck. Trying not to think about that stuff, though it’s hard not to. I’ve got two more weeks until a cruise and then I come back and 3 or 4 days after I get home I go in for surgery. I’ve been pretty down lately. It’s hard to sometimes to manage with all this while knowing there is still a lot more ahead of me. On top of that work is stressful lately. I could write a whole blog just venting about all the things wrong with my computer at work. I’m also currently in the process of moving my stuff out of my house. I leave at the end of this month. The plan is to have all my stuff out before the vacation and I’ll come home to my parents where I’ll spend my time recovering. Ay carumba. I think I am going to go through all of this, and in September I am going to hear on the news that they have discovered a pill that you take one time that completely cures colitis. Now that would be something. I woke up twice last night to empty my bag out of paranoia that it would leak. I started taking imodium consistently every 6 hours. This morning before work I emptied once and it was not loose. I also emptied again at work around 2 and it was thick too, so everything was looking good. Then I got home from work at about 6:20 and emptied and it was loose again. Maybe because the lack of food I had today on top of the amount of liquid? Who knows. We’ll see what happens later. Thanks for listening to me vent. If you’ve got news, good or bad, let me know. If you’ve got questions, good or bad, also, let me know. One more day until weekend can’t come soon enough! Until next time!