I've been on one dose of steroids per day since Tuesday and already noticing a difference: Unfortunately, not in a good way. The tailbone pain started back almost within the day and typically occurs whenever the pouch is reaching capacity. I guess that's a nice sign (who doesn't love the fuel gauge in their car), but the pain is debilitating to the point of having to lie down, even after evacuating. The pouch itself is also starting to have pains, similar to where we were back in December. Thankfully, the bleeding has pretty much stopped completely, and have noticed little to none on most days.
I've lost most of the water weight, shedding 13 pounds in 8 days after the new year: Yes, I was drinking a ton of water and yes, even moving more. My clothes fit more like they used to, but now my pants want to fall off (what can I say, no butt.) I 'think' my current weight is around 139, which is up from the pre-steroid weight by a pound or so. Any true weight gain is good at this point, especially if it's not just water.
Diaper rash: It's not just for kids anymore. I think I posted a while back that this is the reason babies cry: I'm formulating a pretty good theorem around this now and am positive that's the reason. This is the 2nd bout with a rash and still unsure where it's come from. Nightly incontenance has been limited to only once this week, so not sure that is the reason. I may be having an external reaction to some of the steroid that has a tendency to leak. Holy crap does it burn! I love me some A&D. I've moved away from the Zinc Oxide, as every time I try it, I seem to get the rash as well, so I'm concerned there may be a reaction to that as well: That would be a real drag, as everyone swears by Calmoseptime, which is a highly concentrated Zinc Oxide cream which supposedly works wonders for butt burn.
As expected, coming off the meds was going to have an impact, just not sure to what degree and what direction. We're holding steady to see where this little journey takes us over the next two weeks as we continue to ween off the steroids, but stay with the antibiotic. Cautiously optimistic is the best description for right now, especially as the steroids work their way out of my system. My doc isn't in a hurry, and neither am I, so slow and steady will hopefully win this race. Unfortunately, my work is becoming less patient.
Oncologist
12 years ago
Posts
I need to go back and read prior to the take down if you had some issues. I am wondering if how you (you is general statement here by the way) is related to how you feel or experience after the take down. Hmmm.
ReplyDeleteI hope you feel better. Have you tried putting powder on with the diaper rash cream. I know that will help on a baby's butt. Also my favorite diaper rash cream for baby's is this. You may want to try it. Angel Baby Bottom Balm. They also have a soap out now. You can find it at www.wildflowerdiapers.com in search put diaper rash.
I did have issues after the first step with fluid in the abdomen. That did affect the pouch and was giving me spasms. They gave me Levaquin to help with it, which got me back on track and the fluid seemed to be absorbed and had no further issues after that.
ReplyDeleteI haven't tried powder yet, but will give it a run. I'll try anything at this point! Thanks!
wow, jason! you have no idea how often i pray for you and your recovery process. also, i think i need to tone down how much i whine about my nerve pain in my rectum. it's nothing compared to what you've got going on.
ReplyDeletei'll be thinking about you as you do this weening process with the steroids.:)
Nerve pain in the rectum is something to whine about :^) We can all attest to that! Did you suffer damage to your coccyx?
ReplyDeleteha! i had to look up the word "coccyx" so that i could say whether i suffered damage to it! lol! anyhoo, i did not fracture my tailbone. but i have a syndrome called, cauda equina, which means the muscles inside there that expand and contract in order to void and pass bowels isn't working. so,while it's deciding whether it wants to wake up or not, i get this fabulous pain in there, even though the walls of the rectum have no sensation! it's kind of a mess. don't want to get to graphic.
ReplyDeleteNess, you're on a diary with people who have had their colon removed, rectums "tweaked", and suffered from some GI disease with all kinds of poop stories. (Or at the very least know someone who has.) It's impossible to get too graphic. That's the point of this blog!
ReplyDeleteI hope that everything wakes up. Do they have PT or any procedures that can assist with the wakening of the rectum?
ML: My wife actually had Bag Balm on hand and recommended I try that. It wasn't until I was finished trying it that I realized that they originally used this for cow utters: I hope this wasn't some sick joke on her part. :^)
ReplyDeleteI've gotta pick up some powder tomorrow and see if that will also work. The more the merrier!
oh, cool! then i guess i feel more at home using such terms! lol. the rehab/pt stuff is kind of a mess right now, jason. i will send you an email and fill you in. too depressing and discouraging to subject other readers to such drama. expect an email soon.:)
ReplyDeleteNess: Will do. I know you've started classes, so I'm assuming you're gonna be very busy between PT and homework! Looking forward to your tales. :^)
ReplyDelete