I had an early dinner last night, which led to an earlier empty pouch, which lead to a great nights sleep. I only got up once last night to use the toilet, but unfortunately, the front that moved through last night reeked havoc on my joints: I think I awoke 5 times last night with just the pain in my shoulders. (Yes, more stuff that's broken or at least doesn't work like it used to.)
I had my third followup appointment post-takedown today. Unfortunately, the CT scan did not show any definite, but was "indeterminate". It seems there is 'something' going on down around the pouch area, thus the pain and urgency, but they are unaware as to what it is. As a result, I will be having a flex-sig scope next Monday and, thankfully, be asleep for it. Typically, they do this awake, but as I could barely handle the digital exam, my surgeon knew I couldn't handle a full scope. So, I get to be drugged up. Cool.
This is an unfortunate setback (or just tacking onto the current setback), but at least it's a step in a direction. The surgeon acts like he knows something, but wants to see the scope to verify. I guess that could go either way (knowing something not so bad, or knowing something bad), but at least we'll be further analyzing and hopefully narrowing the possibilities. I'll wait until the results come back before I get nervous. No reason to freak about something you A) don't know and B) can't control.
Until then, I'll be continuing the pain pills and standard course of what we've been doing over the past few weeks. This is getting close to Christmas travel, which will definitely raise my blood pressure should my XMas be affected, but again, let us wait until we know. I can pop pills to make the drive. I'm slowly adding new foods and a little more carbs than before to hopefully add a little more weight (which has suddenly begun to plummet.)
I will also be increasing my activity to help out any movement of fluids. I haven't been walking as much as my first surgery (much colder this time of year), but have been going more places in the morning, but by the "witching hour" (2 PM), the body is starting to revolt and requires attention.
Oncologist
12 years ago
Posts
Hey J.Haas,
ReplyDeleteMegan here from jpouch.life, I didn't realize you had a blog - I'll post a link from our site! I just love your positive attitude, you are so realistic, honest and yet remain positive. You are a great voice for coping and recovery in this crazy journey.
Megan
Hey there. It's ML from thirtysomething. I have been reading your story starting back when you had the j pouch connected. Now I have to go back and read more. I was curious to know if you had noticed if when you had the ileostomy you were emptying all the time. if there were fuller times so to speak. I ask this because I wonder if the out put during that time is any correltion to how the pouch will work once in place. I have noticed some different patterns in my output but then again I am three weeks post surgery so maybe that is to be expected. Just curious. ML
ReplyDeleteML: When I first had my temp ileo, it was very liquid. After adjusting diet and some fiber, I was able to bulk it, but it would still run through me in about 2 hrs. I started taking 3mg of immodium a day (1mg before meals) and that helped a lot. (Talk to your doc first.)
ReplyDeleteThe temp ileo cannot be compared to the pouch: The pouch has your terminal (end portion) ileum, which does a brunt of the absorption in your small bowel. The temp ileo only uses the top portion of your small bowel. Even now, with my issues, my pouch output is more solid than my ileo output. (Fear not!)
As for emptying, it was usually every 4 hours w/ the immodium. I would typically have to do once or twice at night as well, but I'm a huge snacker! Everyone is different, so YMMV.
For patterns, it all depends on what you eat and how your body handles it. Also, try not to drink when you eat: Eat 30 mins before or after meals. This will help your food stay thicker. Sugar or protein drinks, as well as coffee, would thin me out regardless when I drank them.
It's a long process with lots of ups and downs (rights and lefts). Don't get discouraged and take every opportunity to learn something new.