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run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/8/2011 12:24 AM (GMT 0)
I am going back to Cleveland Clinic tomorrow. Not sure yet if I'm starting in the ER or going to be admitted directly. I'm still running temps up to 103 every day, my urine output is diminishing, and I've dropped 17 pounds since I've been home (not quite two weeks yet). My surgeon's nurse said she is going to talk to him in the morning about
the ER vs admission thing but that she was going to push for admission because I probably could use a couple of days back on the IV's. I am so relieved. I've just been slowly deteriorating here at home and it was getting scary.
MotherofTeenwithNoUC
Regular Member
Joined : Mar 2011
Posts : 227
Posted 11/8/2011 12:27 AM (GMT 0)
push your doctor for a direct admit! I have done this with my son. If they have treated you in the past and know what the problem is there is no reason for you to endure endless, uncomfortable hours in the ER. Your doctor can do a direct admit with one phone call... you just need to push them to do it. Dont take no for an answer! Good luck!!
Hope you feel better!
MotherofTeenwithNoUC
Regular Member
Joined : Mar 2011
Posts : 227
Posted 11/8/2011 12:30 AM (GMT 0)
P.S. my son just had his second surgery at the Cleveland Clinic ( we are in FL) . I wouldnt go anywhere else, the doctors and staff are amazing. he has lost weight as well after his last surgery. He weighs 105 lbs at 5'8"' and his scheduled for stage 2 of his 3 stage surgery in December, We are trying to fatten him up before the next surgery, but its easier said then done. Drink lots of fluids! I push him to drink at least 8 bottles of water a day. so easy to get dehydrated.
wishing you the best.
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/8/2011 12:35 AM (GMT 0)
Thank you. If the nurse is leaning toward the admission, then I feel it's likely to happen. It's definitely what I would prefer. Waiting in the ER is the worst.
MotherofTeenwithNoUC
Regular Member
Joined : Mar 2011
Posts : 227
Posted 11/8/2011 12:42 AM (GMT 0)
my son is scheduled for 2nd stage of JPouch surgery on Dec 23. How did you 2nd phase of surgery go? were you at CC in Ohio or FL?
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/8/2011 1:08 AM (GMT 0)
I go to CC in Ohio. Step 2 surgery wasn't bad at all. I adapted to eating again much more easily than after Step 1. It was nice not to have the learning curve of the ostomy this go around. I was feeling great when I got home until I got hit with whatever this illness is. Not sure if it's surgery related or not.
blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 11/8/2011 2:24 AM (GMT 0)
Glad you're going where you need to be, and hope you get some relief soon. I'll be thinking of you. So sorry you're hitting this rough patch.... keep us posted, as you are able.
I agree on the direct admit. Much better.
steelcitystrong
Regular Member
Joined : May 2007
Posts : 41
Posted 11/8/2011 2:58 AM (GMT 0)
RUN--I hope you get feeling better soon, that has to be very rough! I know just what you are going through, I was in the hospital for 18 days and then 7 days at home sick leading up to the ER (But after those 25 days, better and better each day--there IS a light at the end of your tunnel, they'll get you all fixed back up.) I wanted to update you on what the stoma nurses said about
my stoma that points down and the second hole, but since you're going back-you will get plenty of your own stoma advice. Either way though, they thought I needed a firmer convexity so I'm stopping using the convex ring and using a Hollister convex wafer with a little paste. We'll see how this holds up. With the second
opening, they said to just allow for it when I'm cutting and applying pouch. Obvious answer, but again, easier SAID and DONE by the stoma nurse.
You sound very dehydrated and hopefully a few days of investigating and IV FLUIDS will get you on the right path. Then guess what, you'll be even that much closer to takedown. :) Which makes us very happy!
Blueheron
Veteran Member
Joined : Feb 2010
Posts : 720
Posted 11/8/2011 6:30 AM (GMT 0)
So sorry to hear that you are feeling so terrible. As awful as it is to be back in the hospital, at least you will have the comfort of being monitored closely with help medical help readily available. I will be thinking of you, and I hope that you get some answers as to what is causing this.
Ironmum
Veteran Member
Joined : Oct 2010
Posts : 776
Posted 11/8/2011 3:08 PM (GMT 0)
Ditto all the above. SO sorry to hear you're not doing so well. Please keep us posted and hope you're feeling better soon. Be great to figure out what's going on. Big hugs Sarah x
Equestrian Mom
Veteran Member
Joined : Mar 2008
Posts : 3115
Posted 11/8/2011 5:37 PM (GMT 0)
You are probably already back in...glad you didn't wait.
It's usually not anything we did...just our bodies cannot fight off the infection without help
Keep us posted on how things are going...speedy recovery thoughts your way
Jellybean4688
Regular Member
Joined : Jun 2008
Posts : 99
Posted 11/9/2011 12:31 AM (GMT 0)
Hope you are doing better! Get some rest!
Disneynut66
Veteran Member
Joined : Apr 2009
Posts : 587
Posted 11/9/2011 1:19 AM (GMT 0)
Just checking in on you. Hope you got admitted and are doing better. You are in my thoughts.
Ju330
Regular Member
Joined : Dec 2009
Posts : 175
Posted 11/9/2011 2:14 AM (GMT 0)
Hope you're feeling better soon!!
esoR
Veteran Member
Joined : Jan 2007
Posts : 4147
Posted 11/9/2011 4:35 AM (GMT 0)
Run4 good luck. Hope you got admitted. Remember you can catch additional stuff while waiting in an ER. Rosemary
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/9/2011 11:33 AM (GMT 0)
Hey guys! I'm still alive. Actually feeling a good bit better and realizing I would have never gotten better on my own at home no matter what I did. Was admitted yesterday morning. CT scan showed a collection of fluid in my lower left abdomen. They use a CT guided process to drain it and placed a JP drain. They pulled over 50 cc's of yuck out and of course the drain keeps doing its thing. I'm also on two kinds of iv antibiotic right now. I was finally released off of NPO, thank goodness because I've been so thirsty.
So that's the quick and dirty version. I only have my phone for internet versus my iPad so hard to write up too much. Thanks for all the well wishes and continued support.
blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 11/9/2011 12:36 PM (GMT 0)
I'm so glad they found out what was wrong and are able to make it better. Very good news! Hope you continue to get better and are back in action soon.
Has anyone looked at your stoma to help you with those issues?
Great that you're better! thinking of you.
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/9/2011 4:00 PM (GMT 0)
Sorry, that should have been lower right abdomen. Not that it matters much, but I don't want it to be confusing later if I mention it.
I had a great session with a stoma nurse yesterday. One of the residents came too because I told him I had questions I wanted answered about
why this stoma is like that. He admitted it was less than ideal but told me they had a little trouble with the amount of tension coming from both directions when it was created, etc. She did some kind of manic to sort of pop it up out of the hole it was nestled in. She used the calvion lollipop on it, but the skin was already much improved from before. She showed me a couple of other things that I think are going to make it easier for me going forward.
esoR
Veteran Member
Joined : Jan 2007
Posts : 4147
Posted 11/9/2011 4:25 PM (GMT 0)
OMG!!! GOOD thing you went. So you had backed up effluent and the JP tube is getting it out? My god! I guess what we can learn from this is if symptoms like yours or out of the ordinary, best to request help rather than err on side of it will get better. Glad you are being cared for. Rosemary
Equestrian Mom
Veteran Member
Joined : Mar 2008
Posts : 3115
Posted 11/10/2011 5:43 PM (GMT 0)
Sounds like a bunch of good things came from going back...glad to hear! As I recall, the doc that does the the CT guided drain is rather handsome...kinda like a Kennedy
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/11/2011 3:26 AM (GMT 0)
I was such a baby I begged for every drug they would give me before and during the procedure, so I really don't remember him much at all!
Blueheron
Veteran Member
Joined : Feb 2010
Posts : 720
Posted 11/11/2011 4:05 AM (GMT 0)
I am so glad that you are okay and that they figured out the issue. I too had a random pocket of fluid in my belly that had to get drained with the CT guided procedure. My drain went right through my butt cheek. Ouch! It happened almost a month after my surgery and I had been feeling really nauseated and ill. My situation was interesting in that all the drainage that came out never showed any signs of infection. In fact, my surgeon said I probably would have been okay if they hadn't drained it, but that they wouldn't have known that by what was originally seen on the CT scan. It had to be drained to know what we were dealing with. Regardless, I felt a lot better afterwards. I hope it helps you too.
That is great news that you figured out a system that works better with your stoma. It must feel good to know why the stoma was created that way too.
Hope you are getting lots of rest and continue to feel better!
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/11/2011 8:35 PM (GMT 0)
Thanks, everyone! I am doing much better. Off the IV this afternoon and giving my oral antibiotics a test drive to make sure they won't bother me. Looks like I'm leaving here tomorrow morning with the JP drain still in place. I got a quick training this morning on how to flush it and it doesn't seem like it will be too tough to tend to. I would have been horrified if someone would have told me before hand that I would be taking this drain home and caring for it myself. Now it is no big deal. Amazing how this whole experience keeps shoving the borders of our comfort zone, isn't it?
run4pancakes
Veteran Member
Joined : Oct 2008
Posts : 938
Posted 11/12/2011 3:04 PM (GMT 0)
Definitely going home today.
blueglass
Veteran Member
Joined : Dec 2010
Posts : 3332
Posted 11/12/2011 3:28 PM (GMT 0)
Congrats! That's excellent.
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