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Step 2 - steroid withdrawal and bleeding

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Ostomies
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Posted 6/2/2013 7:19 PM (GMT 0)
This step is much tougher for sure. Yesterday and today have been pretty hellish. Low grade fever and bleeding - both from anus and in bag (kinds wishing I had the anal drain as opposed to passing massive clots and feeling so weak/lightheaded). And docs think I am going through steroid withdrawal and adrenal gland issues since I'm just a month off those. So back on IV steroids while I 'm here. Fun stuff.
Posted 6/2/2013 7:49 PM (GMT 0)
Ugh, what a drag.... hang in.... drag to have to go back on the steroids, but I hope they make you feel better. Surgery is a lot of stress, and you do need cortisol to deal with it. Hopefully you'll be able to taper off for good soon.
Posted 6/2/2013 8:18 PM (GMT 0)
Yep, I'm not surprised. I was nine weeks off pred when I had my surgery and my surgeon said he was "on the fence" about whether I should have steroids after Step 2 or not (I think he went with no but I did get a stress dose during the operation itself).

Hang in there!! You'll get through... it sucks but it gets a lot better. Try to zone out, let the time pass. And press your button wink
Posted 6/3/2013 6:51 AM (GMT 0)
I feel like post-op is a great time to watch lots and lots of reruns of your favorite shows. Hope tomorrow is a bright and better day!
Posted 6/3/2013 3:21 PM (GMT 0)
I had my surgery in Sept 2012 and finally weened off Pred on Nov 2012. Now that Pred it out of my system my car accdient injury from June 2011 is coming forfront! Haven't had any issues other than that unless there's more to come. Been up & down on Pred for 1 1/2 years.

I stuck with the ostomy puch instead of a J-pouch. I don't think they remove you're entire rectum for a J-pouch and that's where my UC was very vengful to me.
Posted 6/3/2013 9:13 PM (GMT 0)
Hey girl, how's it going? Anything new? Hope you are catching up on your favorite shows (I agree with Ekta, I think I've seen every episode of Friends about 15 times now) and starting to feel a little better.
Posted 6/3/2013 11:30 PM (GMT 0)
Feeling a bit better today. Got my JP drain tube removed and not bleeding as much from the anus. And having fun trying to educate the nurses and techs, who call everything a colostomy ;) A new tech who is starting nursing school really wanted to learn more, so I let him come in while the stoma nurse was here - he declared my stoma the coolest thing ever - nice to see and hear! But this loop is going to be a pain for sure - both if my openings are at the bottom, one very flush, and the second will likely be pretty flush once they pull the bridge out. My hubby accidentally covered the bottom he with the wafer when he changed the bag for me last night (I had him change it cause so
E if the nurses are careless and empty it w/out cleaning off the bottom and it got oogie and wet against at my skin).
Posted 6/3/2013 11:49 PM (GMT 0)
OMG I hear you about the nurses not giving a **** about cleaning the tail after emptying. When I had a clip bag instead of a velcro they didn't even turn back the edge to empty it... it takes three seconds... if I had known they were going to make such a mess I would have done it myself, even if I was hallucinating and half conscious!! I had a massive b fest with the stoma nurse about how the regular nurses don't know what they're doing most of the time. I remember after Step 2 I wanted to change my wafer but I was too weak to do it myself. It was the weekend and the stoma nurses only work weekdays. The regular nurses kept offering to do it for me and I was like heeeellll no. It also drives me crazy when medical professionals call it a colostomy. At least say an ostomy if you want to generalize.

Sorry to hear about the flush stoma sad As your swelling goes down I bet it will stick out more!! Mine looked much more flush at first than it is now. I started off using convex wafers in the hospital but after a couple weeks the WOCN told me I could switch back to flats. Even if it doesn't turn into a perfect little stoma, you have takedown to look forward to pretty soon :-)

Maybe you will inspire that tech to become a WOCN after he finishes nursing school!
Posted 6/4/2013 12:32 PM (GMT 0)
Loop ileos are a pain in the arse.....This is the first change that I have done in a while where I managed to keep the mucous off the bottom part long enough to slap the wafer on there without it starting to break down an hour after I changed. Cutting it bigger does help and I coated my skin in Friars. So far, day two no worries about the mucous part eating away at the wafers.

PSUDOC, I hope things get better for you. Keep educating those nurses!!! The next person will thank you for it!

Feel better! Sending you healing thoughts!

k
Posted 6/4/2013 5:05 PM (GMT 0)
Hope things are getting better! I have been obsessed with watching Armywives on Netflix when not up for doing much. I do suggest it if you are looking for something to watch.
Posted 6/6/2013 4:05 AM (GMT 0)
ugh, yea i hear you about the nurses. when my husband was in for his step 1, the nurses were clueless and i basically had to live at the hospital with him. i emptied his bag for him and i did the changing. one time he had a leak in the middle of the night and it took 3 nurses to figure out how to change it and i had to do most of the coaching.

i even had to stop one nurse that tried to come in and take his blood sugar... i was like what are you doing? he doesnt have diabetes .... and she stopped and said oh sorry im in the wrong room. it wouldnt have hurt my husband to get his blood sugar checked but what about the poor guy who it was supposed to be for and they had used my husbands reading instead of their own.

i completely respect nurses as its a noble profession and a lot of hard work but some of them really need to step up their game and be more on the ball. and i dont totally buy the excuse that they are overworked and busy cause each time my husband was in the hospital and i was staying there 24/7 most of the time when i couldnt find his nurse its cause they were all standing around the nurses station gossiping or checking their facebook pages.
Posted 6/6/2013 10:52 AM (GMT 0)
Hi guys ... hopefully headed home today :) This second surgery really wiped me out, but docs say everything looks very good. I can see that the loop will be a new challenge. My husband came in yesterday to meet with the stoma nurse so she could help him see this bone works (b/c of my broken arm, he's still doing all my changes unless I have an emergency). But the nurse thing - ugh. The last 3 days here, when I have asked a nurse or tech for help emptying my bag, they have given me a hard time of flat refused. Believe me, I'd rather empty it myself, but those stupid clip closures are impossible for me to do with my arm. So when we did a change yesterday, the stoma nurse brought me one of my normal Velcro close bags - what a difference a small change can make! So hopefully they will spring me today. My 10 yo has her first violin concert tonight, and my goal is to be there!
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