(image from Google images)
Full of puss, crap and so much gas that is. Holy crikey the gas! Since moving to the every four hour intubation schedule (last Thursday), my poor little k-pouch has been struggling to deal with the ridiculous amount of trapped gas it's dealing with. When they said, "You may experience discomfort and cramping while you are stretching your pouch," they weren't kidding. Um, discomfort is a very nice way of saying HORRENDOUSLY uncomfortable.
I'm not talking oh I can't fart here that would be inappropriate so I'll hold it until later and deal with the slight discomfort, I'm talking distended mal-nourished belly, where you can actually see the gas rolling through it, noises that sound like they are rumbling from the bottom of a volcano and pressure like something might burst if I don't figure out a way to deal with it NOW. So where has that lead me, well let's see I've tried Gas-X and Beano because supposedly there would Be No Gas -- umm apparently not if you are Al, I seem to be immune to these lovely products. I've tried the heating pad to maybe help spread things out so they aren't so confined. And then finally I had to come to the realization that even though I ALWAYS follow the rules, I was going to have to break them to make sure I didn't blow up like a balloon and then pop, I was going to have to intubate in between my four hour intervals.
Ok, so if you know me, you know this realization was not accepted lightly. I mean they said you have to stick to a strict intubation schedule to make sure you stretch your pouch to it's fullest potential over a period of time, if not it may not function properly. But after a lot of encouraging from my hubs and mom and after writhing around, I just couldn't take it anymore and I went in to let out the gas. As soon as I stuck the catheter in, the amount of gas that came out was almost alarming, I actually saw my stomach deflate a bit and it just kept coming. Seriously where did the gas come from. It doesn't seem to be food related because things I've been eating since I got home are now doing it to me -- even toast for goodness sake!
So, with that said, I haven't been able to make it one 24-hour period since without breaking into the four hour schedule to relieve the pressure, to Tube Toot as it were. Things seems to be under control from the very wee hours of the morning to the early evening and then all goes to the crapper, literally. It's frustrating and scary and painful and annoying and I'm sitting here wondering how will I move to the 4.5 hour schedule this Thursday if I can't even make it a full day with the current schedule? GRRRRRRR.
Ok, so you are saying to yourself well she knew this was going to be tough, but when this is all over she'll be able to intubate whenever she wants because there will be no schedule and life will be so great and so much better than the way things have been. Well you are right. But unless you can fast forward me to late-January when the official scheduling (although they say it takes actually six months to fully stretch) will be over, then please keep that thought to yourself. Honestly this sucks, I know things could be so much worse and I don't need to explain how thankful I am for what I have, but in the day-to-day moments of dealing it gets a bit hard at times.
Speaking of moments of unbearableness, I had one last night when I was in intubating off schedule due to the gas and things stopped moving. I removed the tube only to find a little bite of apple clogging the tip of the catheter. Seriously I ate one sliver of an apple the hubby was cutting, without the skin on it and I chewed like a mama bird chews the food for her babies and a piece still got through. I spent a good five minutes de-clogging and then had to reinsert to get the rest of the gas and crap out. I was NOT happy, because it flashed before my eyes that this is the rest of my LIFE. Again, in the grand scheme of things after all I've been through and the small price it is to get my quality of life back, it seems like no biggie, but in that moment it was a biggie. Oh well, what can you do, I'm entitled to these moments. Doesn't change the fact that I know this was the right choice, but it sure as heck doesn't make it easier.
And if all of that wasn't enough, my little KP still seems to want to drain a lovely amount of nasty puss on a consistent schedule. Leading me to conclude that the abscess is still around, that and the painful knot directly above the stoma that is still here as well.
I was supposed to being seeing the surgeon today about the abscess and it not healing after my last visit and round of antibiotics, but he had a family emergency and my appt is now this Thursday. He does want me to have a CT scan of the abdomen and pelvis with contrast into the K-pouch before I see him. We are trying to schedule this for Thursday morning before my appt. So it appears they will be injecting some sort of dye directly into my KP to look around in there, fun times.
I do believe that the dealing with the abscess is making it harder for me to deal with the stretching process as well. I mean really, one or the other would be manageable but both is just well so par for my course so I'm not really surprised.
I know this post may sound like me being a negative nelly and it certainly illustrates that the gas isn't the only hot air I'm filled with, but well I'm not negative just honest and this is how I'm feeling today. Again, talk to me in February and I'm sure I'll be singing a different tune, heck talk to me after the abscess/puss thing is finally gone and I will hopefully be singing a totally different recovery tune. Until then, I will keep focused on the fact that my mom is coming this weekend and we are going to get our house in the holiday spirit -- lights on the house, tree up, Christmas ambiance everywhere, I can't wait. Nothing like a little holiday warmth to cheer a girl up.
So until Thursday, I'll just keep intubating when I need to and managing the puss/pain situation the best I can.