This has been an interesting last week I started it thinking I had a plan, i would get on the steroids and imuran and live many years w/a colon that would be healthy again. Even as I was readmitted to the hospital that was still my plan. In my heart honestly I was beyond ready for this operation! I would have had it months ago but I knew in my head i needed to try everything I could, I didn't want to have any second thoughts, plus i mean you need your colon and part of me worries about the whole western medicine approach of just, let's get rid of it, not that alternative therapy really did all that much for me lol. I didn't want to feel pushed into a procedure that is pretty major and might not be necessary.
They gave me another colonoscopy last Monday i think Just to see what was going on in there. The dr who did the procedure is the partner of my normal gi dr and he also suggested one last ditch effort.they've been pumping me full of steroids w/the hopes that I would turn a corner and they could start me on the imuran. I was tired but willing to try. The thing is I am on much stronger medication now w/humira and imuran takes about 3 months to really take effect. I did start to feel better, sort of. Less Bms little more solid but still bloody and pretty painful. I was really looking for one of the Drs to tell me ok thats it we need to operate, but they kept saying it's up to you it's up to you. I was so back and forth b/c I was really seeing improvement but at the same time not enough. I still couldn't get through a meal w/o pain meds. And I say meal In the lightest sense of the word. I really only had 3 solid meals, they have been giving me those ensure nutritional shakes and those don't even go down w/o pain.
What really made the decision clear to me was my camera. I was looking through the pictures a few days ago and in 99% of the pictures I'm asleep. And that's how its been. I have had so little energy b/c I'm not sleeping well at night having to wake up so often to use the bathroom.
It's no way to live.
I have to say that even though I ultimately was the one to say yes lets move forward and have surgery, in no way is this "elective". I NEED
this operation, otherwise I will continue to be anemic and always looking over my shoulder waiting for the other shoe to drop. I have a life to live i can't be going into the hospital every 6 months.
Since I've been in here so much has happened. They were pumping me so full of liquids that my body became so swollen. My ankles are still
pretty swollen
but now that the swelling is down I can tell I'm losing body mass again. The last time i was here I lost like 20 pounds, not really looking forward to that again. My arm is pretty sore where they put the picc line in and I swear when I breathe in really deeply I can feel it in my vein, creepy! I have been poked so much I have some pretty awful bruises.
They take my blood sugar every 4 hrs to make sure the tpn I am getting is giving me the right amount of nutrients or something. An ostemy nurse came in two days ago and "fitted" me for my stoma. This is really going to be so weird. I keep looking at the x she marked on me trying to imagine what this will look like.
They'll come for me in about 3 hours and the rest is the beginning of well a new exciting beginning!
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